# CPAP - new user.....



## Violet_Beauregard

OK, about 3 months ago I was diagnosed with a mild case of sleep apnea. I have RELUCTANTLY (to say the least) accepted this. On Friday I received my CPAP and mask (nasal pillows) and used them for the first time last night. 

I'm not impressed. I felt no different this morning than any other. I also know I woke several times last night. I'm sure I was getting used to the mask and tube, blowing, etc. but I expected to feel at least a LITTLE better.

My boss uses a CPAP and he claimed he felt 100% better the following morning. I also saw an episode of The View where Rosie O'Donnell now uses a CPAP and she felt better the first day as well.

I didn't expect perfection, but geez....for all the grief I thought it would be different. I'm not jazzed in the least about using this thing, but if I have to I will. I know it will take some time to get into a regular routine, and I expect it will get better, but everything I've heard has been instantaneous results. 

Anyone else use a CPAP? What were your results after once use? What can I expect after regular use? 

Thanks!!!


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## imfree

I've been using a BIPAP for almost 3 years. It took me 3 days to
adapt to it. I knew and accepted that my body needed it for my survival. I 
went from "falling asleep at the wheel" and near-heart attack low levels of oxygen saturation to feeling more alive at 51 than at 30! It takes awhile for 
your saturation to recover. I URGE you to email my doctor. Obesity is not a death-sentance if you pro-actively take charge of your life and health. I fully intend to weigh 400lbs, when I die, at the age of 80,after out-living all the doctors who told me to lose weight, So help me GOD! I'm RESOLUTE and not afraid!!! I say what I say, in love, to protect you. Stop being a victim of fat-
hatred and be a victor over it, you can win, girl!!!
The Reckless Driver
Who'll Win The Race,
 Edgar


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## Zandoz

Going on 10 year CPAP/BiPAP user here. Three "from personal experiance" things come to mind...


The headgear & nasal pillows are not fitting properly, and therefore not working as intended. 
There is one or more issues in addition to the apnea, detracting from your sleep quality. Example: Bad mattress. 
You are inadvertently mouth breathing, which will totally defeat the function of the CPAP.


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## Happy FA

I've been using CPAP for more than 11 years and I DID have the first day epiphany of a real change. However, it's not unusual that people find that there changes are much more modest in the short term and it takes a period of days, weeks or even a month or two until they get the full benefits of the CPAP. I've never met anyone who faithfully used it and made sure that they got a mask or nasal pillows that really fit(when you're lying down in bed the way you're actually going to sleep-rather than sitting up and checking things out) who didn't realize that the change in their quality of life and quality of sleep was not profound.

There are a variety of factors which can contribute to the quality of the experience. One is the type, size and adjustment of the headgear so your mask or nasal pillows fit well. Surprisingly, most people tighten the straps too much and this makes for a poorer fit.

I'd be happy to give you tips or advice about the use of the machine, but the three most important bits of advice would be:

1. Use the machine whenever you're going to sleep, whether at night or for a nap.(and if you're going to travel, take it along with you).

2. Make sure that the headgear which holds the mask or nasal pillows in place is well adjusted and the mask or headgear are the right size for your face or nose.

3. Get humidification into the equation. There are heated and passover(a passive system in which the air passes over a water reservoir and picks up humidity that way) humidifiers. Having the air forced into your nose during the course of a night can dry your nasal tissues and airway out if moisture isn't added to the system. 

If you need help there are plenty of folks on this board who can help and some earlier good threads on sleep apnea and cpap. Also, there is a Yahoo group for fat apneacs not interested in weight loss(sa-sleepapnea) which can be helpful. If you'd like you can Private message me with questions if you'd like.

Happy FA

PS I've found that finding CPAP really gave me back my life and enhanced the quality of life I had immeasurably. Since then I've tried very hard to help others find the way to treat their sleep apnea. You've done the hard part, which is recognizing you've got a condition which requires treatment(there really isn't a "cure", and the operations that exist are NOT a cure), and you've gotten a tool which should help you treat yourself.


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## imfree

I have one that I don't use and would be glad to ship it
north, to you, Violet.
Verbal HUGGZZ
To You,
Edgar


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## Violet_Beauregard

Zandoz said:


> Going on 10 year CPAP/BiPAP user here. Three "from personal experiance" things come to mind...
> 
> 
> The headgear & nasal pillows are not fitting properly, and therefore not working as intended.
> There is one or more issues in addition to the apnea, detracting from your sleep quality. Example: Bad mattress.
> You are inadvertently mouth breathing, which will totally defeat the function of the CPAP.



great tips.... I'll check my headgear fit and see how it goes tonight. 
Mattress is new...it should be ok.
Mouth breathing might be a problem, but I don't think so.
I'm thinking the headgear was too tight.
Thanks!!!




Happy FA said:


> I've been using CPAP for more than 11 years and I DID have the first day epiphany of a real change. However, it's not unusual that people find that there changes are much more modest in the short term and it takes a period of days, weeks or even a month or two until they get the full benefits of the CPAP. I've never met anyone who faithfully used it and made sure that they got a mask or nasal pillows that really fit(when you're lying down in bed the way you're actually going to sleep-rather than sitting up and checking things out) who didn't realize that the change in their quality of life and quality of sleep was not profound.
> 
> There are a variety of factors which can contribute to the quality of the experience. One is the type, size and adjustment of the headgear so your mask or nasal pillows fit well. Surprisingly, most people tighten the straps too much and this makes for a poorer fit.
> 
> I'd be happy to give you tips or advice about the use of the machine, but the three most important bits of advice would be:
> 
> 1. Use the machine whenever you're going to sleep, whether at night or for a nap.(and if you're going to travel, take it along with you).
> 
> 2. Make sure that the headgear which holds the mask or nasal pillows in place is well adjusted and the mask or headgear are the right size for your face or nose.
> 
> 3. Get humidification into the equation. There are heated and passover(a passive system in which the air passes over a water reservoir and picks up humidity that way) humidifiers. Having the air forced into your nose during the course of a night can dry your nasal tissues and airway out if moisture isn't added to the system.
> 
> If you need help there are plenty of folks on this board who can help and some earlier good threads on sleep apnea and cpap. Also, there is a Yahoo group for fat apneacs not interested in weight loss(sa-sleepapnea) which can be helpful. If you'd like you can Private message me with questions if you'd like.
> 
> Happy FA
> 
> PS I've found that finding CPAP really gave me back my life and enhanced the quality of life I had immeasurably. Since then I've tried very hard to help others find the way to treat their sleep apnea. You've done the hard part, which is recognizing you've got a condition which requires treatment(there really isn't a "cure", and the operations that exist are NOT a cure), and you've gotten a tool which should help you treat yourself.



I am going to check on the headgear. I do think it might have been too tight. The nasal pillows fit OK and all-in-all I think they're OK, but I do think it might have been too tight around my head. 




imfree said:


> I have one that I don't use and would be glad to ship it
> north, to you, Violet.
> Verbal HUGGZZ
> To You,
> Edgar



Thanks...I have the whole shebang already. I appreciate the offer.




I am hoping this will improve over the next week. Perhaps if I adjust the headgear, etc. it will help. I didn't get the humidifier, but I think I will. I've heard it will be helpful. 

I think too, that this is an attitude issue with me as well. I've been resisting it. My arousal incidents were low and as I said, my case is quite mild, but it's still there. But, in my addled brain, it's yet another problem attributed to being fat, which just pisses me off. I need to work on accepting that using the mask nightly is a small price to pay for feeling better.

Thanks all!


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## Happy FA

imfree said:


> I have one that I don't use and would be glad to ship it
> north, to you, Violet.
> Verbal HUGGZZ
> To You,
> Edgar


 
Humidifiers are not something that can be added on from someone else's machine. The cpap machines themselves usually have provision for them to be included and are incorporated into the machine itself. 

If you aren't using your humidifier, you should try it and see what a difference it can make in the quality of how you feel.


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## Violet_Beauregard

Happy FA said:


> Humidifiers are not something that can be added on from someone else's machine. The cpap machines themselves usually have provision for them to be included and are incorporated into the machine itself.
> 
> If you aren't using your humidifier, you should try it and see what a difference it can make in the quality of how you feel.




I think I'm going to. I have to contact my doctor and have her get it ordered. A prescription is required for the order. 

Thank you for the suggestion!


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## Ho Ho Tai

Violet_Beauregard said:


> OK, about 3 months ago I was diagnosed with a mild case of sleep apnea. I have RELUCTANTLY (to say the least) accepted this. On Friday I received my CPAP and mask (nasal pillows) and used them for the first time last night.
> 
> I'm not impressed. . . .
> 
> Anyone else use a CPAP? What were your results after once use? What can I expect after regular use?
> 
> Thanks!!!



Violet, as pointed out, below, there are a number of excellent threads on this topic, including this one:
http://www.dimensionsmagazine.com/forums/showthread.php?t=5417&highlight=apnea+cpap
I think most of them can be found by searching the board for [ apnea CPAP ].

In the thread indicated, I posted several messages on the experience of a non-apnea spouse; in particular, how the CPAP affected the cuddling intimacy we were accustomed to sharing when sleeping, and how we solved it. But mine is admittedly a minor, and rather specialized, contribution. There are many more (and more useful) first-person posts. 

Mrs Ho Ho regularly peruses a board devoted to apnea. I think that the posts here are, for the most part, better articulated, more specific, and with richer content than what I have seen on the apnea board.


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## Violet_Beauregard

Thank you so much! I read thru that entire thread...what a wealth of info. I'm going to stick with it.... I'm sure it will work out. I think I was very disappointed in the fact that I didn't get better results on the first night.

Thanks again!!






Ho Ho Tai said:


> Violet, as pointed out, below, there are a number of excellent threads on this topic, including this one:
> http://www.dimensionsmagazine.com/forums/showthread.php?t=5417&highlight=apnea+cpap
> I think most of them can be found by searching the board for [ apnea CPAP ].
> 
> In the thread indicated, I posted several messages on the experience of a non-apnea spouse; in particular, how the CPAP affected the cuddling intimacy we were accustomed to sharing when sleeping, and how we solved it. But mine is admittedly a minor, and rather specialized, contribution. There are many more (and more useful) first-person posts.
> 
> Mrs Ho Ho regularly peruses a board devoted to apnea. I think that the posts here are, for the most part, better articulated, more specific, and with richer content than what I have seen on the apnea board.


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## BigBeautifulMe

Violet - I don't know if you saw my posts are not, but I know quite a bit about CPAP and getting it to work for you. Feel free to PM me. Also, I'm a regular contributor at CPAPtalk.com, and in the chat room there as well. Stop by and say hi - people there are SO knowledgeable.


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## Violet_Beauregard

I did see your posts and they were quite helpful. Thanks so much!! I'm going to give it another try tonight. I'm hoping it will get better as I go along. As I said, I'm just surprised there wasn't a quicker result. From all I've heard, it's literally an overnight thing...but, everyone's different I suppose. I'll keep in touch and let you know how it goes though....

Thanks again!!





BigBeautifulMe said:


> Violet - I don't know if you saw my posts are not, but I know quite a bit about CPAP and getting it to work for you. Feel free to PM me. Also, I'm a regular contributor at CPAPtalk.com, and in the chat room there as well. Stop by and say hi - people there are SO knowledgeable.


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## BigBeautifulMe

It took me a year and a half (I had an incompetent doctor and DME). My story is a rarity - but there are definitely people who take much longer. It's overnight for a few, but for most it takes at least a week, for many several months. It really depends on how severe your apnea is and how long you've been going without good sleep (you'll have sleep debt to pay off). If you start feeling like your mouth is getting quite dry, or if your throat starts getting sore, those are both signs of mouth-breathing, so keep an eye on that. Good luck, and don't give up!


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## Sandie S-R

Violet_Beauregard said:


> .....But, in my addled brain, it's yet another problem attributed to being fat, which just pisses me off.....



Violet...

There are fat people that have sleep apnea, and there are thin people that have sleep apnea. Do you think that the thin folks beat themselves up for having apnea? (Of course they don't!) So, please don't give yourself a hard time about this. Love your body, and treat it with care. 

Hang in there!!


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## imfree

Sandie S-R said:


> Violet...
> 
> There are fat people that have sleep apnea, and there are thin people that have sleep apnea. Do you think that the thin folks beat themselves up for having apnea? (Of course they don't!) So, please don't give yourself a hard time about this. Love your body, and treat it with care.
> 
> Hang in there!!


 Sandie, I'll give a hearty AMEN to that. I was about 350 when my sleep study was done. My apnea turned out to be central, and not the obstructive kind that is associated with obesity. "They" had me beating my self to death over that" blame obestiy for everything" philosophy, I was blaming my obesity for everything.
The Fat Avenger,
Edgar


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## Violet_Beauregard

Day 2 has been pretty much the same. My nose is getting sore already! I am going to hate this... grrrr... I'm sticking with it though. 




BigBeautifulMe said:


> It took me a year and a half (I had an incompetent doctor and DME). My story is a rarity - but there are definitely people who take much longer. It's overnight for a few, but for most it takes at least a week, for many several months. It really depends on how severe your apnea is and how long you've been going without good sleep (you'll have sleep debt to pay off). If you start feeling like your mouth is getting quite dry, or if your throat starts getting sore, those are both signs of mouth-breathing, so keep an eye on that. Good luck, and don't give up!


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## Violet_Beauregard

I'll agree with you there..... I just really don't like wearing the mask...it's intrusive and inconvenient. It's only the nasal pillows too! I can't even imagine wearing the whole mask. 

I'm getting there though.... thanks for the support and encouragement! 





Sandie S-R said:


> Violet...
> 
> There are fat people that have sleep apnea, and there are thin people that have sleep apnea. Do you think that the thin folks beat themselves up for having apnea? (Of course they don't!) So, please don't give yourself a hard time about this. Love your body, and treat it with care.
> 
> Hang in there!!


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## BigBeautifulMe

Go out to the drugstore and buy some Ayr gel (in with the over the counter nasal sprays, etc). It can really help with that soreness. If you tell me which nasal pillows system you have, I might be able to advise you even further and/or point you in the direction of "fixes" for your particular mask.  Great job on sticking with it so far.


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## missaf

Here's to sticking with it. It can take quite some time to get used to the pillows or simply just having something on your head at night. My dad took Lunesta to also help him get over the hump of growing accustomed to his CFLEX.


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## Violet_Beauregard

BigBeautifulMe said:


> Go out to the drugstore and buy some Ayr gel (in with the over the counter nasal sprays, etc). It can really help with that soreness. If you tell me which nasal pillows system you have, I might be able to advise you even further and/or point you in the direction of "fixes" for your particular mask.  Great job on sticking with it so far.



I have the Mirage Swift Nasal Pillows (I think is the name) by ResMed. The soreness is right on the edge of the bottom of my nose (above my lip). It's like I've had the sniffles and been blowing my nose too much. I put medicated chap stick on it last night and I've been putting antibiotic ointment on it to hopefully sooth it today. Last night I loosened the head straps a bit, but it was still annoying. 

If you can suggest anything else, I'm wide open to hear it! Thanks so much for the help and support... I really appreciate it!! 





missaf said:


> Here's to sticking with it. It can take quite some time to get used to the pillows or simply just having something on your head at night. My dad took Lunesta to also help him get over the hump of growing accustomed to his CFLEX.



The straps on my head aren't so bad, though I'm not real happy about the condition they leave my hair in the next morning, but I can deal with that. The nasal pillows are.... OK.... at best. I just can't stand them! I wish they weren't so large..... not the holes, but the whole thing in general. I want one of those tiny tubes they use for oxygen when you're in the hospital! LOL

I'm giving it the old college try though. I nearly gave up last night, but I kept it on. 

Thanks for the support....it's so helpful to hear from others in the same position!


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## imfree

Violet_Beauregard said:


> I have the Mirage Swift Nasal Pillows (I think is the name) by ResMed. The soreness is right on the edge of the bottom of my nose (above my lip). It's like I've had the sniffles and been blowing my nose too much. I put medicated chap stick on it last night and I've been putting antibiotic ointment on it to hopefully sooth it today. Last night I loosened the head straps a bit, but it was still annoying.
> 
> If you can suggest anything else, I'm wide open to hear it! Thanks so much for the help and support... I really appreciate it!!
> 
> 
> 
> 
> 
> The straps on my head aren't so bad, though I'm not real happy about the condition they leave my hair in the next morning, but I can deal with that. The nasal pillows are.... OK.... at best. I just can't stand them! I wish they weren't so large..... not the holes, but the whole thing in general. I want one of those tiny tubes they use for oxygen when you're in the hospital! LOL
> 
> I'm giving it the old college try though. I nearly gave up last night, but I kept it on.
> 
> Thanks for the support....it's so helpful to hear from others in the same position!


 I am very proud of you, Violet, for accepting your condition
and the responsibility of managing it! I use a ResMed, too. The tiny tube you use in the hospital is a cannula. I wear one when I'm up, but I'd never want to get tangled-up in one while asleep!I manage several conditions, myself.
I have victory over them and I live in peace and joy!!! I really believe that
I will live to a remarkably old age, despite my conditions. I pray for you to
have peace, comfort, and abundant life!!! My doctor would tell you that I'm
not crazy, just profoundly passionate!!!
The Man Of
Great Passion,
Edgar


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## Violet_Beauregard

Thanks Edgar, I appreciate it.





imfree said:


> I am very proud of you, Violet, for accepting your condition
> and the responsibility of managing it! I use a ResMed, too. The tiny tube you use in the hospital is a cannula. I wear one when I'm up, but I'd never want to get tangled-up in one while asleep!I manage several conditions, myself.
> I have victory over them and I live in peace and joy!!! I really believe that
> I will live to a remarkably old age, despite my conditions. I pray for you to
> have peace, comfort, and abundant life!!! My doctor would tell you that I'm
> not crazy, just profoundly passionate!!!
> The Man Of
> Great Passion,
> Edgar


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## Zandoz

Violet_Beauregard said:


> Mattress is new...it should be ok.



The externals can be other things besides just mattress...for example the way you lay with your head on the pillow. If it causes you the drastically tilt your head down...chin to chest kind of position...it can restrict your breathing. For me at least, I have a very hard time finding pillows that are "just right". Also, things like Restless Leg Syndrome can have a big impact. Or even something as simple as a pet disturbing your sleep. 

With the CPAP you've taken a big step towards correcting sleep inhibiting problems...but that is not the point to stop looking for other causes.


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## Violet_Beauregard

I may have to look into replacing my pillows...they're old and comfy, but not real supportive. Good thoughts! Thanks so much for the info and support....




Zandoz said:


> The externals can be other things besides just mattress...for example the way you lay with your head on the pillow. If it causes you the drastically tilt your head down...chin to chest kind of position...it can restrict your breathing. For me at least, I have a very hard time finding pillows that are "just right". Also, things like Restless Leg Syndrome can have a big impact. Or even something as simple as a pet disturbing your sleep.
> 
> With the CPAP you've taken a big step towards correcting sleep inhibiting problems...but that is not the point to stop looking for other causes.


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## BigBeautifulMe

You're welcome, Vi.  I'm glad you didn't give up last night. A lot of CPAP users I know use one of two bed pillows - either the "Shapeable Pillow" from Target, or the PAPillow from talkaboutsleep.com. The Shapeable Pillow is like a normal pillow, but can be shaped/molded, and will stay in that position. You can shape it so that it doesn't put pressure on the nasal pillows, and then sleep with it like that. The PAPillow is kind of T-shaped, with "holes" cut into the sides so that you can support your head, but, again, not put pressure on the mask. 

The nasal pillows should rest just inside the bottom of your nostrils - they shouldn't go really far up into your nostrils. If they're not fitting like this, you may be wearing too large a size. Try the next size down. Your mask should have come with Small, Medium, and Large nasal pillows. If the place that sold it to you gave you only one size, that means that they took the other two sizes so they could resell them to other people (in my opinion, highly unethical, but a lot of places do this). I would go back to them and say "I discovered my mask is supposed to come with three sizes of pillow, and this size isn't working for me, I'd like to try the other two. Could you get those for me, please?" Don't act like they're doing you a favor - just act like you think they may have made an honest mistake, but you need them to correct it so you can get better treatment. 

If you're a stomach sleeper like I am, the Swift works for some people, but not all. If you just can't get used to it, see if your insurance will pay for another mask (most pay for at least two per year). Try another kind of nasal pillow. I personally use the Invacare TwilightNP (the NP means Nasal Pillow). Most DMEs (Durable Medical Equipment providers, the places that sell masks and machines) don't stock this mask, because it's not popularly known, but on the boards I frequent it's known as - bar none - the best mask for stomach sleepers, and 99% of the time, the DME will special order it for you. It comes with two sizes of nasal pillows - make sure the DME gives you both so you can pick the size that works for you. After you get it, you add an extra "homemade" strap around to stabilize the nasal pillows, and, presto, you've got something you can actually stomach sleep on. I hadn't been able to sleep without hanging the mask off the pillow in quite some time when I tried this mask, and it was quite a relief. 

The homemade strap is made buy cutting off a leg from a pair of women's tights (I didn't want to cut up a pair of expensive plus-size tights, so I went to Walmart and purchased some in a small size just for this purpose). After you cut off a leg, all you do is use that leg like a strap. Hold the halfway point of that leg in front of your mask, and tie the two ends behind your head, tightening the "strap" against your mask. I usually just put one end over the other like I'm tying my shoe laces, but do it twice (this is called a double starting knot, and if you're having trouble picturing it you can check out http://www.fieggen.com/shoelace/doublestartknot.htm , which has diagrams). That keeps it in place all night, and makes it easy to take off in the morning. 

This is also something you can do with your swift to help stabilize it if it moves around a lot. Also, to keep the back strap of the Swift from riding up (and also to help preserve your hair), if it's long enough, put your hair in a ponytail. That'll keep the strap from shifting, and keep the mask from popping off in the middle of the night. 

Don't forget the Ayr gel - it really does work for nasal soreness.

Whew, that was a lot of information. I hope at least some of it is helpful.

ETA: Forgot to mention that hanging the hose above your bed can be very helpful in keeping the mask from getting tugged around by the hose all night. It really does help with comfort, and you won't get tangled up in the hose, or keep rolling over on the hose when you toss and turn. Here's a great resource for reading about different ways to do that: http://www.cpaptalk.com/viewtopic.php?t=10640
I personally use the 3M cord bundler. It's one of those "command hooks" you put on the wall and can take down without damaging it. It isn't a traditional "hook shape," and it holds the hose just perfectly. For people who dont' have a headboard to help them in hanging the hose, it really works quite well. I like it because I can take it down and take it on trips with me. 

If you want any more reading on these topics (as well as some reading on "fixes" other users have applied to the Swift, let me know and I can point you in the right directions. There is SO much information out there.


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## Violet_Beauregard

You're right...that's a lot of info! VERY helpful though.... 

I'm a side sleeper...any suggestions there? I am going to check out the pillows though. I like that Shapeable one...that might be good... 

Is there any type of mask that doesn't use headgear? I thought I saw one online that holds the pillows to the nose with a mouth piece? Any ideas?





BigBeautifulMe said:


> You're welcome, Vi.  I'm glad you didn't give up last night. A lot of CPAP users I know use one of two bed pillows - either the "Shapeable Pillow" from Target, or the PAPillow from talkaboutsleep.com. The Shapeable Pillow is like a normal pillow, but can be shaped/molded, and will stay in that position. You can shape it so that it doesn't put pressure on the nasal pillows, and then sleep with it like that. The PAPillow is kind of T-shaped, with "holes" cut into the sides so that you can support your head, but, again, not put pressure on the mask.
> 
> The nasal pillows should rest just inside the bottom of your nostrils - they shouldn't go really far up into your nostrils. If they're not fitting like this, you may be wearing too large a size. Try the next size down. Your mask should have come with Small, Medium, and Large nasal pillows. If the place that sold it to you gave you only one size, that means that they took the other two sizes so they could resell them to other people (in my opinion, highly unethical, but a lot of places do this). I would go back to them and say "I discovered my mask is supposed to come with three sizes of pillow, and this size isn't working for me, I'd like to try the other two. Could you get those for me, please?" Don't act like they're doing you a favor - just act like you think they may have made an honest mistake, but you need them to correct it so you can get better treatment.
> 
> If you're a stomach sleeper like I am, the Swift works for some people, but not all. If you just can't get used to it, see if your insurance will pay for another mask (most pay for at least two per year). Try another kind of nasal pillow. I personally use the Invacare TwilightNP (the NP means Nasal Pillow). Most DMEs (Durable Medical Equipment providers, the places that sell masks and machines) don't stock this mask, because it's not popularly known, but on the boards I frequent it's known as - bar none - the best mask for stomach sleepers, and 99% of the time, the DME will special order it for you. It comes with two sizes of nasal pillows - make sure the DME gives you both so you can pick the size that works for you. After you get it, you add an extra "homemade" strap around to stabilize the nasal pillows, and, presto, you've got something you can actually stomach sleep on. I hadn't been able to sleep without hanging the mask off the pillow in quite some time when I tried this mask, and it was quite a relief. The homemade strap is made buy cutting off a leg from a pair of women's tights (I didn't want to cut up a pair of expensive plus-size tights, so I went to Walmart and purchased some in a small size just for this purpose). After you cut off a leg, all you do is use that leg like a strap. Hold the halfway point of that leg in front of your mask, and tie the two ends behind your head, tightening the "strap" against your mask. I usually just put one end over the other like I'm tying my shoe laces, but do it twice (this is called a double starting knot, and if you're having trouble picturing it you can check out http://www.fieggen.com/shoelace/doublestartknot.htm , which has diagrams). That keeps it in place all night, and makes it easy to take off in the morning.
> 
> This is also something you can do with your swift to help stabilize it if it moves around a lot. Also, to keep the back strap of the Swift from riding up (and also to help preserve your hair), if it's long enough, put your hair in a ponytail. That'll keep the strap from shifting, and keep the mask from popping off in the middle of the night.
> 
> Don't forget the Ayr gel - it really does work for nasal soreness.
> 
> Whew, that was a lot of information. I hope at least some of it is helpful.


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## BigBeautifulMe

Violet, the device you're talking about is the CPAPpro, and it's a NOTORIOUSLY bad interface. Out of about 100 people I've seen try it, only one has had any success with it. The vast majority say it is poorly made, and breaks easily and quickly. Those that have software to monitor their treatment say they have many more apneas when using it than they do with other masks. In other words, it's one you probably want to stay away from. 

Side sleepers also like the TwilightNP, but lots of them like the Swift as well, so you've got a good interface for the way you sleep. Do check out the shapeable pillow - I hope it helps. And if you find it shifting, try the pantyhose strap. It will probably help. 

Good luck!


----------



## SummerG

Violet! We are cpap twins, lol... I just got my machine on friday too! First night I was able to keep the mask on (I have a nasal mask) but then sat & sun night i woke up to find i had removed the mask. Last night I kept it on for 5 hours straight! I'm very excited myself, about the possibilities that treatment brings.

I didn't feel that "wahoo!" feeling the 1st night either... nor 2nd & 3rd... but today I woke up singing... and feeling more energetic than I had in years. I'm hoping it wasn't a fluke and it continues 

good luck to you in this journey! i know it's sort of tough (emotionally & physically) but we can do it!


----------



## Violet_Beauregard

Ok...great... thanks for letting me know. I'm going to see how it goes tonight. 

I'll let you know!! 





BigBeautifulMe said:


> Violet, the device you're talking about is the CPAPpro, and it's a NOTORIOUSLY bad interface. Out of about 100 people I've seen try it, only one has had any success with it. The vast majority say it is poorly made, and breaks easily and quickly. Those that have software to monitor their treatment say they have many more apneas when using it than they do with other masks. In other words, it's one you probably want to stay away from.
> 
> Side sleepers also like the TwilightNP, but lots of them like the Swift as well, so you've got a good interface for the way you sleep. Do check out the shapeable pillow - I hope it helps. And if you find it shifting, try the pantyhose strap. It will probably help.
> 
> Good luck!


----------



## Violet_Beauregard

My twin!!!!  Hey!! Well congrats on your success so far! I look forward to the possibilities that treatment can bring, but not very optimistic. I WANT it to work, but am quite skeptical. I'll be curious to see how the next few nights go. I'm hoping after a few more days that it will bring more results.

*reaching for your hand* Here we go down this journey together!! Good luck to us!!

Keep me posted on your progress!







SummerG said:


> Violet! We are cpap twins, lol... I just got my machine on friday too! First night I was able to keep the mask on (I have a nasal mask) but then sat & sun night i woke up to find i had removed the mask. Last night I kept it on for 5 hours straight! I'm very excited myself, about the possibilities that treatment brings.
> 
> I didn't feel that "wahoo!" feeling the 1st night either... nor 2nd & 3rd... but today I woke up singing... and feeling more energetic than I had in years. I'm hoping it wasn't a fluke and it continues
> 
> good luck to you in this journey! i know it's sort of tough (emotionally & physically) but we can do it!


----------



## Violet_Beauregard

Well, Day 3...still not impressed... LOL 

I loosened the headgear a bit and it helped a bit... the nasal pillows didn't seem so far up my nose. It's still difficult to sleep with the thing....to find a comfortable position. I'm not a back sleeper, but that's the only place the mask doesn't get in the way. 

I did feel a LITTLE better when I woke up this morning, so we'll see. 

:happy:


----------



## imfree

Hang in there, Sweetie. Even before oxygen was connected, my BiPAP
increased by blood-oxygen saturation by 8% and saved my life!
Blazing With Life,
Edgar


----------



## -X-

Is there any way to reverse sleep apnea ? Or once you get it, its always there ?


----------



## BigBeautifulMe

X, a small number of users see apnea elimination with significant weight loss. Most, though, have to use CPAP even if they DO manage to lose all the "excess" weight - just at a lower pressure. 

Additionally, there are surgeries that are touted as being for apnea. However, the vast, vast majority of these have dismal success rates at best. IMHO, the risk is not worth it. I can't tell you how many people I've seen on my apnea board say "I had the surgery, but I still have to use CPAP!" Again, sometimes there's a pressure reduction, but in the vast majority of cases, there is still need for CPAP. 

I've even seen several people say the scar tissue that formed post-surgery made it so that they *can't *use CPAP effectively anymore, but still have apnea - which means they have to either take hugely drastic steps (generally, a tracheotomy) or live with untreated apnea (NOT a safe thing to do, as every time you sleep that way, you're damaging your vital organs). A procedure known as the UPPP is notorious for results like that.

There's only one procedure that's been at all more successful (and still, I think it only has a 60% success rate), and that's called the MMA/GA. In this surgery, they break your jaw and advance it. It's brutal. Even with this surgery, oftentimes there is reduction in apnea, but not elimination. 

So I guess the short answer to your question would be "No." LOL

Violet - good job. Don't give up! Be a hard-headed stick-to-it gal - it is SO worth it!


----------



## imfree

-X- said:


> Is there any way to reverse sleep apnea ? Or once you get it, its always there ?


 Obstructive sleep apnea can be treated, and sometimes reversed, by
weight-loss and surgery. My apnea is central, caused by a central nervous system disorder. After 2 near-electrocutions and leaving heavy alcohol use 
behind me, my nervous system could have been damaged, but there is hope,
for even me. I am thriving under BiPAP treatment!
That Which Does Not
Kill Me......,
Edgar


----------



## LillyBBBW

Are these things expensive? Does insurance cover them? Sounds like a big deal.


----------



## BigBeautifulMe

If you're referring to CPAPs, Lilly, insurance does indeed cover them. There's usually a co-pay of some sort, like anything else. Most insurance companies also cover two masks per calendar year, as well as various other amounts of supplies. 

If you're talking about the surgery, it depends on the surgery and who the insurer is.

Even if it's necessary to buy a CPAP out of pocket, it's worth it (a top-of-the-line machine can be purchased online for about $700 - others that aren't top-of-the-line but still work perfectly for most folks can be had for even less). Being treated for apnea has been life-changing for me, and lots of other people, too. I can genuinely say I love my CPAP, and can't sleep without it now.


----------



## LillyBBBW

I suspect I have some form of apnea but only when I sleep on my back. I rarely sleep on my back so I never gave it much thought. Though now that I've gotten bigger I experience stress on my body from sleeping on my side or front and wake up achy and sore. Sleeping on my back however results in waking every few moments in mid choke. Pretty telling in my view. I've thought of investigating a device but I've wondered if it's worth the hassle and expense if strategically placed pillows or a matress topper will make my positions more comfortable without having to buy something extra to lug about with me when I travel, and I travel a lot. Plus will the darn thing work internationally, how much does it weight for customs limitations on luggage, does it cost extra for that model and will I survive the trial and error of finding the right one, bla bla bla. I'm not turned off or stigmatized about using one if I need one I'm just lazy and don't feel like being bothered. The way some people are singing about it here though makes me wonder if maybe it IS worth the hassle and cash. 



BigBeautifulMe said:


> If you're referring to CPAPs, Lilly, insurance does indeed cover them. There's usually a co-pay of some sort, like anything else. Most insurance companies also cover two masks per calendar year, as well as various other amounts of supplies.
> 
> If you're talking about the surgery, it depends on the surgery and who the insurer is.
> 
> Even if it's necessary to buy a CPAP out of pocket, it's worth it (a top-of-the-line machine can be purchased online for about $700 - others that aren't top-of-the-line but still work perfectly for most folks can be had for even less). Being treated for apnea has been life-changing for me, and lots of other people, too. I can genuinely say I love my CPAP, and can't sleep without it now.


----------



## BigBeautifulMe

It truly is, Lilly. And I can answer a few of those for you.
Most CPAPs weigh around 2-4 pounds. They're not that heavy. I've travelled with mine to Spain, France, and Portugal and had no problems. You'll need an outlet adapter like you would for any other electrical device, but that's it. The vast majority of CPAPs out there now run on either 110 or 220 without needing any special adapter. 

For domestic flights, CPAP is not counted towards your carry-on limit. For international flights originating from countries other than the US I think they ARE allowed to count it - but they never did for me.

The trial and error of finding the machine is not bad - it's finding the right mask that can be a bitch. But seriously, Lilly, it truly is worth it, and as you age, apnea usually just gets worse and worse if untreated.

For most people, treating apnea helps a host of other health problems. For many people, their blood pressure is lowered, and gastric reflux disease is lessened (if not eliminated entirely). I personally was a walking zombie, and was having serious problems with short-term memory. CPAP has helped with that significantly. Because I didn't discover I had it for so long (they think I've had apnea my whole life), I've already done damage to my heart, lungs, and brain that can't be reversed. This truly is a dangerous disorder. I think you're a fabulous woman, and I can only say - don't let it happen to you. Nip it in the bud. It's a TOTAL PAIN IN THE BUTT getting adjusted to and finding the right mask, but it adds years to your life in the end. And while you're going through that process, you'll have us around to support you. I'll be happy to talk to you about it anytime you want. And I'll see you this weekend, so you can check out my setup and see it's not as terrifying as you probably think.


----------



## LillyBBBW

Do you have to go to a special kind of doctor for that or can your primary care doctor prescribe one?


----------



## BigBeautifulMe

If you want to do it "legally" you have to get a sleep test, which your primary doc refers you to. For me, that was the worst part, just because I'm not the type that does well sleeping in beds that aren't my usual one. But it's usually only one night - if they determine you have apnea in the first half of the study, they'll hook you up to a CPAP for the second half and titrate you (ie, determine what pressure you need) for the second half. Insurance covers this as well. 

If someone knew for sure already that they had apnea, they could always just go to Yahoo Auctions and look for a RemStar Auto. These machines are, in my opinion, top of the line. They're auto-adjusting - they determine your proper pressure by reading the way you're breathing. They're also data capable, so with software and a card reader (which can be had inexpensively if you know where to look) you can easily monitor your own treatment (even for people who DO get a sleep study, this is the kind of machine I always recommend. It's the kind I have, too). There are auto-adjusting machines made by other manufacturers (ResMed, for one) but the Respironics (RemStar) Auto is the only one that has exhale relief available in auto mode, something that can be crucial for people that need a higher pressure.

But for someone that wasn't 100% sure they had apnea, I would definitely recommend going the sleep study route, since there could be something else going on. It's hard to tell exactly, sometimes, because we can't exactly watch ourselves sleep. 

ETA: Since I haven't said it yet in this CPAP thread, I just want to reiterate - I'm NOT a medical professional of any kind. I'm simply a CPAP user who threw myself into learning everything I could about CPAP upon finding out I needed it. I've done quite a bit of reading on this topic, and I've had discussions with numerous Respiratory Therapists. That's where I get my info - mostly from reading studies, and talking to other users about their own experiences. Anyone who thinks they may have sleep apnea should definitely talk to their doctor.


----------



## SummerG

LillyBBBW said:


> Do you have to go to a special kind of doctor for that or can your primary care doctor prescribe one?



hey chiquita! you have to have a prescription for the machine... and generally speaking i've heard you have to have a sleep study then get the prescription from a sleep disorder doctor. 

i wanted to add in that most insurances cover these things... however mine (blue cross blue shield hmo) cover half the cost of the machine... but will not cover the humidifier, hoses or masks. also they wont outright buy the machine, so they rent it (according to my DME my ins. co. is the worst) till they deem it a true necessity. so i had to shell out about $325 (which may be the end for my vegas party plans  ) for my machine, and will have to pay monthly "rental fees" quite honestly, i may just buy a the same machine straight out from an online company (minus the humidifier since i bought it already) since the DME hikes the price up so much anyhow. 

so.. a big pain in the butt this all is... but i'm still happy to have it... i think it's making a difference, not a hugely noticeable difference yet, but i have faith that it is doing what it should.


----------



## LillyBBBW

SummerG said:


> hey chiquita! you have to have a prescription for the machine... and generally speaking i've heard you have to have a sleep study then get the prescription from a sleep disorder doctor.
> 
> i wanted to add in that most insurances cover these things... however mine (blue cross blue shield hmo) cover half the cost of the machine... but will not cover the humidifier, hoses or masks. also they won't outright buy the machine, so they rent it (according to my DMS my ins. co. is the worst) till they deem it a true necessity. so i had to shell out about $325 (which may be the end for my vegas party plans  ) for my machine, and will have to pay monthly "rental fees" quite honestly, i may just buy a the same machine straight out from an online company (minus the humidifier since i bought it already) since the DMS hikes the price up so much anyhow.
> 
> so.. a big pain in the butt this all is... but i'm still happy to have it... i think it's making a difference, not a hugely noticeable difference yet, but i have faith that it is doing what it should.



Can I piggy back off you and watch what becomes of you? Seriously, $325 is a lot of scratch and I have a BC/BS hmo too. Looks like they deliberately fix it so people will instead pay for them outright since that comes out cheaper in the long run. Scurvy bastards.  I swear, everybody is on the take in this town.

Meantime I'm going to set up my sleep study appointment. It usually takes months to get in on anything around here and if before then I change my mind I can always cancel.


----------



## Happy FA

SummerG said:


> Violet! We are cpap twins, lol... I just got my machine on friday too! First night I was able to keep the mask on (I have a nasal mask) but then sat & sun night i woke up to find i had removed the mask. Last night I kept it on for 5 hours straight! I'm very excited myself, about the possibilities that treatment brings.
> 
> I didn't feel that "wahoo!" feeling the 1st night either... nor 2nd & 3rd... but today I woke up singing... and feeling more energetic than I had in years. I'm hoping it wasn't a fluke and it continues
> 
> good luck to you in this journey! i know it's sort of tough (emotionally & physically) but we can do it!


 
Congrats on sticking with it and for working your way up to 5 hours straight of using it. The positive effects of the cpap use are definitely there, and while it's definitely a YMMV situation from person to person, if you stick with it and get the system to work for you, you will see the positive effects in many different ways.

Any special songs you were singing?


----------



## SummerG

LillyBBBW said:


> Can I piggy back off you and watch what becomes of you? Seriously, $325 is a lot of scratch and I have a BC/BS hmo too. Looks like they deliberately fix it so people will instead pay for them outright since that comes out cheaper in the long run. Scurvy bastards.  I swear, everybody is on the take in this town.
> 
> Meantime I'm going to set up my sleep study appointment. It usually takes months to get in on anything around here and if before then I change my mind I can always cancel.



heh, watch what becomes of me (of course you can!)... i'm hoping it gives me more energy to dance longer than 30 seconds of a song at a bbw party (which if you happen to be at one where i am, you can check out my machine, since i'll travel with it too [seriously not a twisted attempt to lure you into my room for more hugs... i swear! hehehehe]) ... though aside from health factors, I also wanted the machine because someday I hope to have to share a bed, and with my snoring & choking that pretty much was a near impossibility.


----------



## Happy FA

LillyBBBW said:


> Are these things expensive? Does insurance cover them? Sounds like a big deal.


 
I've always had my CPAP machines and masks/hoses paid for by my Oxford(and before that BC/BS insurance). The biggest change recently has been that they've insisted on the use of a durable medical goods agent who's supposed to give me "service". They generally don't give much in the way of service. But, in terms of the machines the way they've done it most recently is that you "rent" the machine for the first year and after that time, the rental is paid off and you own the machine. From my side it makes no difference since I don't pay any of it. They also send me the new mask and hose ever 6 months(but, I have to ask for it, they don't do it on their own). For some reason they charge me for a filter for the CPAP machine($7), though I've never been able to determine why. 

I have the Resmed Activa mask which is well designed for those who tend to move between their back and sides during sleep and are in different positions. I don't think it would work very well for those who are stomach sleepers. While many prefer the nasal pillow route I have always found the nasal masks to be quite comfortable and the thought of having something inside my nostrils has always been disconcerting.

It makes sense to see what coverage you have, but to definitely go forward and get yourself tested with the original sleep study so you have a sense of whether you seem to have sleep apnea, and if so how severe it is. One of the things I've discovered is that it's considered within the range of "normal" that someone have a few apnea events a night. However, people who do have significant obstructive sleep apnea(the central sleep apnea that Edgar says he has is not treatable with cpap) should definitely be getting treatment asap.

Happy FA


----------



## BigBeautifulMe

Actually, HappyFA, Central Apnea is not treatable with CPAP, but it is treatable with PAP therapy. Depending on the person and their situation, there are VPAPs and certain kinds of BiPAPs out there (the BiPAPST, for one) that actually monitor a person's breathing and breathe FOR them if they take too long to breathe on their own. Isn't technology amazing? 

And you're absolutely right - an apnea/hypopnea index of 5 is considered perfectly normal. However, someone with only a few events per night is not, in general, going to be symptomatic at all, or recognize that it happens. It takes more than that to make one "aware" something's going on. 

Lilly, I'm SO glad you're going to sign up for a sleep study. Good for you!  Look at it this way: If you go in for a sleep study, and you have apnea, you've nipped it in the bud before it got too bad, and before it did any serious damage. If you DON'T have apnea, well, you can stop worrying that you do!  Either way, it's a good result.  Just my two cents (or eighty cents. LOL)


----------



## BigBeautifulMe

For anyone perusing this thread in the future (the following taken from a post on cpaptalk.com):

Here's a list from Wolk R, Somers VK. Cardiovascular consequences of obstructive sleep apnea. Clin Chest Med. 2003;24:195-205.

*Medical Consequences of Sleep Apnea*

Cardiovascular consequences of OSA
hypertension (high blood pressure)
heart failure
atherosclerosis (heart attacks, angina)
atherosclerosis (stroke)
atrial fibrillation
ventricular arrhythmias
pulmonary hypertension

Other consequences of OSA:
trauma (traffic accidents)
glaucoma
snoring spouse syndrome
diminished libido
in children: illness like attention deficit hyperactivity disorder (ADHD)
in children: slowed growth

Other associations with OSA:
obesity
obesity syndromes, such as Prader-Willi syndrome
polycystic ovary disease
renal failure
hypothyroidism
Marfan syndrome
Charcot-Marie-Tooth disease
post-polio syndrome
gastro-esophageal reflux
worsening of epilepsy

The following is from http://pennhealth.com/sleep/newsletter/winter06/heart.html

Quote:
With sleep apnea, very high levels of the stress hormone epinephrine are released hundreds of times each night. This “fight or flight” hormone puts a tremendous strain on the heart, blood vessels and other organs and also disrupts sleep. This may be one mechanism by which sleep apnea can injure the heart and blood vessels.

The National Guidelines (JNC VII) used by physicians to treat high blood pressure list OSA as a major cause of refractory high blood pressure. Recently, more worrisome connections linking OSA to an increased risk of stroke and heart attack have been published. Even after eliminating other risk factors, those with OSA are much more likely to suffer either a stroke or heart attack making sleep apnea a potent risk factor that should be aggressively treated. Sleep apnea is also associated with a variety of other cardiovascular disorders including heart failure, atrial fibrillation and sudden cardiac death.

List of common symptoms of sleep apnea:

Possible Symptoms of Sleep Apnea

&#8226; loud and frequent snoring
&#8226; periods of not breathing (apnea) during sleep, snorting, gasping, or choking during sleep
&#8226; need to urinate during the night
&#8226; awakening tired in the morning, morning headaches, daytime or evening fatigue or lethargy
&#8226; daytime or evening sleepiness when sitting or inactive, drowsy driving or falling asleep while driving
&#8226; performing actions automatically or by rote, limited attention, memory loss
&#8226; poor judgment, personality changes
&#8226; weight gain, early onset of high blood pressure, severe leg swelling
&#8226; especially in children, hyperactive behavior. 

More possible hints of sleep apnea:
&#8226; COPD (chronic obstructive pulmonary disease), asthma
&#8226; heart abnormalities, stroke
&#8226; high blood pressure that doesn’t respond to medication
&#8226; acid reflux or GERD
&#8226; diabetes
&#8226; deviated septum (cartilage separating the nostrils going off midline)
&#8226; bruxism (teeth grinding)
&#8226; adult bed wetting
&#8226; irritability, mood changes, anxiety, depression
&#8226; procrastination, difficulty acting on plans or finishing projects, diminished work performance
&#8226; social withdrawal, neglected relationships
&#8226; less interest in sex, sexual dysfunction
&#8226; persistent recurring dreams of struggle and failure
&#8226; the ability to fall asleep two or three hours after getting up in the morning, and/or long naps in the afternoon, and/or sleeping nine or more hours a night


----------



## Violet_Beauregard

Lilly, so far my insurance has covered everything.....





LillyBBBW said:


> Are these things expensive? Does insurance cover them? Sounds like a big deal.


----------



## LillyBBBW

Violet_Beauregard said:


> Lilly, so far my insurance has covered everything.....



Yeah but you're pretty and you live in Ohio. Pretty girls in Ohio always get stuff free.


----------



## Violet_Beauregard

FYI... Mine was 2 nights. The first night they wired me up and monitored me. Then about 2 weeks later, they did it again, but this time I had the mask and CPAP. It still sucked..... LOLOL 




BigBeautifulMe said:


> If you want to do it "legally" you have to get a sleep test, which your primary doc refers you to. For me, that was the worst part, just because I'm not the type that does well sleeping in beds that aren't my usual one. *But it's usually only one night *- if they determine you have apnea in the first half of the study, they'll hook you up to a CPAP for the second half and titrate you (ie, determine what pressure you need) for the second half. Insurance covers this as well.


----------



## Violet_Beauregard

LOLOLO..... I don't know about pretty, but I do live in Ohio.... and FREE???? I think I missed that train... LOLOL 

Hey, as skeptical as I am about this, I'm holding faith that it will work for me...eventually. Everyone is different. I keep expecting overnight results...for me, it just take a little longer. I'm just hanging in there until I have my "Oprah - full circle moment".... it'll happen....


Besides... I may be pretty, but I think you are *beautiful*...so you've got me beat!!





LillyBBBW said:


> Yeah but you're pretty and you live in Ohio. Pretty girls in Ohio always get stuff free.


----------



## Violet_Beauregard

Are you SURE you're not a medical professional???? BRAVO for learning all this information. It's helpful to you and what a help you've been to me!! Not to mention everyone else!!! Wow...... 




BigBeautifulMe said:


> For anyone perusing this thread in the future (the following taken from a post on cpaptalk.com):
> 
> Here's a list from Wolk R, Somers VK. Cardiovascular consequences of obstructive sleep apnea. Clin Chest Med. 2003;24:195-205.
> 
> *Medical Consequences of Sleep Apnea*
> 
> Cardiovascular consequences of OSA
> hypertension (high blood pressure)
> heart failure
> atherosclerosis (heart attacks, angina)
> atherosclerosis (stroke)
> atrial fibrillation
> ventricular arrhythmias
> pulmonary hypertension
> 
> Other consequences of OSA:
> trauma (traffic accidents)
> glaucoma
> snoring spouse syndrome
> diminished libido
> in children: illness like attention deficit hyperactivity disorder (ADHD)
> in children: slowed growth
> 
> Other associations with OSA:
> obesity
> obesity syndromes, such as Prader-Willi syndrome
> polycystic ovary disease
> renal failure
> hypothyroidism
> Marfan syndrome
> Charcot-Marie-Tooth disease
> post-polio syndrome
> gastro-esophageal reflux
> worsening of epilepsy
> 
> The following is from http://pennhealth.com/sleep/newsletter/winter06/heart.html
> 
> Quote:
> With sleep apnea, very high levels of the stress hormone epinephrine are released hundreds of times each night. This fight or flight hormone puts a tremendous strain on the heart, blood vessels and other organs and also disrupts sleep. This may be one mechanism by which sleep apnea can injure the heart and blood vessels.
> 
> The National Guidelines (JNC VII) used by physicians to treat high blood pressure list OSA as a major cause of refractory high blood pressure. Recently, more worrisome connections linking OSA to an increased risk of stroke and heart attack have been published. Even after eliminating other risk factors, those with OSA are much more likely to suffer either a stroke or heart attack making sleep apnea a potent risk factor that should be aggressively treated. Sleep apnea is also associated with a variety of other cardiovascular disorders including heart failure, atrial fibrillation and sudden cardiac death.
> 
> List of common symptoms of sleep apnea:
> 
> Possible Symptoms of Sleep Apnea
> 
>  loud and frequent snoring
>  periods of not breathing (apnea) during sleep, snorting, gasping, or choking during sleep
>  need to urinate during the night
>  awakening tired in the morning, morning headaches, daytime or evening fatigue or lethargy
>  daytime or evening sleepiness when sitting or inactive, drowsy driving or falling asleep while driving
>  performing actions automatically or by rote, limited attention, memory loss
>  poor judgment, personality changes
>  weight gain, early onset of high blood pressure, severe leg swelling
>  especially in children, hyperactive behavior.
> 
> More possible hints of sleep apnea:
>  COPD (chronic obstructive pulmonary disease), asthma
>  heart abnormalities, stroke
>  high blood pressure that doesnt respond to medication
>  acid reflux or GERD
>  diabetes
>  deviated septum (cartilage separating the nostrils going off midline)
>  bruxism (teeth grinding)
>  adult bed wetting
>  irritability, mood changes, anxiety, depression
>  procrastination, difficulty acting on plans or finishing projects, diminished work performance
>  social withdrawal, neglected relationships
>  less interest in sex, sexual dysfunction
>  persistent recurring dreams of struggle and failure
>  the ability to fall asleep two or three hours after getting up in the morning, and/or long naps in the afternoon, and/or sleeping nine or more hours a night


----------



## BigBeautifulMe

Nope, I'm not a medical professional - just a good researcher. I pretty much had to be. I got stuck with an incompetent doctor and DME. My treatment got off to a very rocky start, thanks to that. 

I didn't sleep well during either of my studies (I had two, too by the way - they didn't get enough data during the first four hours of the first study to just hook me up to a CPAP then and there). I kept telling the tech I didn't sleep at all, but he kept saying 'your brain waves don't lie. you slept just fine.' When they titrated me - same thing. So when i got my machine, I used it all night, ever night from day 1. I was determined that I was going to let this thing help me. But I kept feeling suffocated. I kept telling the doc I didn't think my pressure was high enough - I couldn't breathe. But he kept saying "your titration study was flawless. I'm not upping your pressure." 

So I stayed at the same pressure for 8 months, and felt no better at all. Finally, I found CPAPtalk.com and learned about the existence of Auto-adjusting machines. My sleep doc (the one that read my sleep study and refused to up my pressure) refused to prescribe me one. He said that autos didn't work, and that they only responded to apneas AFTERwards, and so did no one any good at all. I showed him several studies published in NEJM and JAMA and the like proving that autos are quite beneficial, and, showing that, while they originally were questionable in the way they worked when they first came out, they had been updated and improved so much that patients oftentimes did better on them than they did in having a lab titration study and put on straight CPAP. He still refused to even consider it. So I went to my GP back home, who wrote me an RX for an auto machine then and there. I took my used CPAP to the DME, gave them the new RX, and traded it for my brand new auto. 

The auto showed that (surprise, surprise) I had been BADLY undertitrated. I actually require a pressure of 11 to keep my airway open. I was titrated at 6. In CPAP pressure, that's a HUGE difference. Ever since I found my auto, and found the mask that actually lets me sleep comfortably, I'm doing SO much better. Ironically, and not surprisingly, when my GP asked my sleep doc for a copy of my titration study, that study had mysteriously "disappeared." Sometimes the best thing we can do is make sure we're in charge of our own health, and not let our doctors take over the reins entirely. Doctors are human, too. Just MHO.


----------



## LillyBBBW

You are so right BBM. Years ago I learned that with doctors you have to tell them what you want, not ask for it. I was going through a medical thing years ago and several people told me that but I figured the doctor answered to no one. I've learned my lesson good. Granted that I've done my research and what I'm asking for is not poisonous or harmful I've learned to always insist or go elsewhere. 




BigBeautifulMe said:


> Nope, I'm not a medical professional - just a good researcher. I pretty much had to be. I got stuck with an incompetent doctor and DME. My treatment got off to a very rocky start, thanks to that.
> 
> I didn't sleep well during either of my studies (I had two, too by the way - they didn't get enough data during the first four hours of the first study to just hook me up to a CPAP then and there). I kept telling the tech I didn't sleep at all, but he kept saying 'your brain waves don't lie. you slept just fine.' When they titrated me - same thing. So when i got my machine, I used it all night, ever night from day 1. I was determined that I was going to let this thing help me. But I kept feeling suffocated. I kept telling the doc I didn't think my pressure was high enough - I couldn't breathe. But he kept saying "your titration study was flawless. I'm not upping your pressure."
> 
> So I stayed at the same pressure for 8 months, and felt no better at all. Finally, I found CPAPtalk.com and learned about the existence of Auto-adjusting machines. My sleep doc (the one that read my sleep study and refused to up my pressure) refused to prescribe me one. He said that autos didn't work, and that they only responded to apneas AFTERwards, and so did no one any good at all. I showed him several studies published in NEJM and JAMA and the like proving that autos are quite beneficial, and, showing that, while they originally were questionable in the way they worked when they first came out, they had been updated and improved so much that patients oftentimes did better on them than they did in having a lab titration study and put on straight CPAP. He still refused to even consider it. So I went to my GP back home, who wrote me an RX for an auto machine then and there. I took my used CPAP to the DME, gave them the new RX, and traded it for my brand new auto.
> 
> The auto showed that (surprise, surprise) I had been BADLY undertitrated. I actually require a pressure of 11 to keep my airway open. I was titrated at 6. In CPAP pressure, that's a HUGE difference. Ever since I found my auto, and found the mask that actually lets me sleep comfortably, I'm doing SO much better. Ironically, and not surprisingly, when my GP asked my sleep doc for a copy of my titration study, that study had mysteriously "disappeared." Sometimes the best thing we can do is make sure we're in charge of our own health, and not let our doctors take over the reins entirely. Doctors are human, too. Just MHO.


----------



## imfree

Violet_Beauregard said:


> LOLOLO..... I don't know about pretty, but I do live in Ohio.... and FREE???? I think I missed that train... LOLOL
> 
> Hey, as skeptical as I am about this, I'm holding faith that it will work for me...eventually. Everyone is different. I keep expecting overnight results...for me, it just take a little longer. I'm just hanging in there until I have my "Oprah - full circle moment".... it'll happen....
> 
> 
> Besides... I may be pretty, but I think you are *beautiful*...so you've got me beat!!


 Hahaha!!!, don't know about pretty?, try "drop-dead gorgeous",
:smitten: then, Violet!!!
Laughing Too 
Hard To Type,
Edgar


----------



## Les Toil

Sometimes during the night my sweety's CPAP mask will reposition itself causing that loud "WHOOSH" sound in addition to her snoring. I'm torn between waking her so she can readjust the mask and not bothering her so she can continue to sleep while I put ear plugs in. When I tell her in the morning her mask was slipping slightly during the night, she insists I wake her and tell her so she can sleep properly. It's just that when I wake her to tell her, she's startled and grumpy and it gives me the imprerssion I've interrupted her sleep. And the poor woman has purchased numerous masks hoping there'll be one that stays in place.


----------



## -X-

Sorry to hear that Les Toil, but thanks for all the information and experiences thus far. Sorry I wasn't able to respond sooner.


----------



## BigBeautifulMe

Sorry to hear she's having so much trouble, Les.  But the snoring thing is not good. CPAP should be STOPPING her snoring entirely. If she's snoring, it means either her pressure isn't high enough, or (if she uses a nasal mask) she's mouth-breathing. If she's mouth-breathing, she's losing that pressurized air from her mouth, and so it's not getting into her airway to keep that airway open. That's definitely not good. She'll need a full face mask.

If she already has a full face mask and she's still snoring, that means her pressure isn't high enough, and she needs to talk to her doc.


----------



## Violet_Beauregard

WOW!!! Well, you definitely were smart to educate yourself and it has paid off. I hope I do half as well as you. They set my titration at 7 and I think that's OK. My boss is at 10. I'll see how it goes tonight.





BigBeautifulMe said:


> Nope, I'm not a medical professional - just a good researcher. I pretty much had to be. I got stuck with an incompetent doctor and DME. My treatment got off to a very rocky start, thanks to that.
> 
> I didn't sleep well during either of my studies (I had two, too by the way - they didn't get enough data during the first four hours of the first study to just hook me up to a CPAP then and there). I kept telling the tech I didn't sleep at all, but he kept saying 'your brain waves don't lie. you slept just fine.' When they titrated me - same thing. So when i got my machine, I used it all night, ever night from day 1. I was determined that I was going to let this thing help me. But I kept feeling suffocated. I kept telling the doc I didn't think my pressure was high enough - I couldn't breathe. But he kept saying "your titration study was flawless. I'm not upping your pressure."
> 
> So I stayed at the same pressure for 8 months, and felt no better at all. Finally, I found CPAPtalk.com and learned about the existence of Auto-adjusting machines. My sleep doc (the one that read my sleep study and refused to up my pressure) refused to prescribe me one. He said that autos didn't work, and that they only responded to apneas AFTERwards, and so did no one any good at all. I showed him several studies published in NEJM and JAMA and the like proving that autos are quite beneficial, and, showing that, while they originally were questionable in the way they worked when they first came out, they had been updated and improved so much that patients oftentimes did better on them than they did in having a lab titration study and put on straight CPAP. He still refused to even consider it. So I went to my GP back home, who wrote me an RX for an auto machine then and there. I took my used CPAP to the DME, gave them the new RX, and traded it for my brand new auto.
> 
> The auto showed that (surprise, surprise) I had been BADLY undertitrated. I actually require a pressure of 11 to keep my airway open. I was titrated at 6. In CPAP pressure, that's a HUGE difference. Ever since I found my auto, and found the mask that actually lets me sleep comfortably, I'm doing SO much better. Ironically, and not surprisingly, when my GP asked my sleep doc for a copy of my titration study, that study had mysteriously "disappeared." Sometimes the best thing we can do is make sure we're in charge of our own health, and not let our doctors take over the reins entirely. Doctors are human, too. Just MHO.


----------



## Violet_Beauregard

Edgar, you're fast becoming my biggest fan, I think..... 

Thank you for the lovely things you say......






imfree said:


> Hahaha!!!, don't know about pretty?, try "drop-dead gorgeous",
> :smitten: then, Violet!!!
> Laughing Too
> Hard To Type,
> Edgar


----------



## imfree

Violet_Beauregard said:


> Edgar, you're fast becoming my biggest fan, I think.....
> 
> Thank you for the lovely things you say......


 You're very much welcome, Violet. Think about it, though, at 400lbs, I
could easily be your biggest AND heaviest fan. 400lbs of love is a lot!!!
HUGGZZ and Loving
Thoughts,
Edgar


----------



## Violet_Beauregard

LOL... You're right about that!! 





imfree said:


> You're very much welcome, Violet. Think about it, though, at 400lbs, I
> could easily be your biggest AND heaviest fan. 400lbs of love is a lot!!!
> HUGGZZ and Loving
> Thoughts,
> Edgar


----------



## imfree

Violet_Beauregard said:


> LOL... You're right about that!!


 Think of it this way, though. I'm not your average muscle and bones
man, I am a most luxurious hug and cuddle.................. Bad boy, stop that!!!
Real HUGGZZ,
Come Get 'em,
Edgar


----------



## Violet_Beauregard

Well, Day 4... a little better. Not so much discomfort while sleeping last night. I think I'm getting used to it. I'm not dragging AS MUCH when I wake up, so I think I'm getting there.


----------



## BigBeautifulMe

That's EXCELLENT news, Vi! Congratulations!


----------



## imfree

BigBeautifulMe said:


> That's EXCELLENT news, Vi! Congratulations!


 I'll echo that with a hearty AMEN!
HUGGZZ,
Edgar


----------



## imfree

Originally Posted by Friend
I only have sleep apnea when BBMe sits on my face. Do I still need CPAP?

Hahaha!!!, my BiPAP works great, but I have episodes of apnea
when I'm dreaming about Violet, does my machine's software need to be
updated?
Breathless,
Edgar


----------



## Violet_Beauregard

Yep, I'm encouraged. I think with time, it will improve. 

Thanks so much for the good wishes...they're so helpful!





BigBeautifulMe said:


> That's EXCELLENT news, Vi! Congratulations!





imfree said:


> I'll echo that with a hearty AMEN!
> HUGGZZ,
> Edgar


----------



## Violet_Beauregard

Edgar you better get that checked..... LOLOL





imfree said:


> Originally Posted by Friend
> I only have sleep apnea when BBMe sits on my face. Do I still need CPAP?
> 
> Hahaha!!!, my BiPAP works great, but I have episodes of apnea
> when I'm dreaming about Violet, does my machine's software need to be
> updated?
> Breathless,
> Edgar


----------



## Zandoz

LillyBBBW said:


> Are these things expensive? Does insurance cover them? Sounds like a big deal.




It depends on if you are an insurance company or not. To buy one on your own, there are many excellent machines out there for under a grand. But when the insurance companies get involved the price frequently triples or quadruples. For that reason, many insurance companies throw up a lot of roadblocks for any kind of sleep testing/treatment/equipment. Ten years ago it took almost a year of hassles, and a false start with one supposedly approved sleep clinic that was later rejected by the insurance company. With both my original CPAP and later my BiPAP, rather than the insurance paying for the machine outright I had to go through a year of kind of a "rent to own" situation...for the first year, I had to pay a monthly rent on the machine (If I remember right the last one was $63 per month) then at the end of the year, the insurance company bought it for the grossly inflated price. 

Last fall, I noticed my BiPAP was beyond it's hours of life expectancy, so I started checking into what the hassles were going to be to replace it. I'd hoped that things had smoothed out in the last 6 years...no such luck. It will still cost me almost as much in a years worth of rent to own payments, before the insurance will kick in, than it will for me to buy it outright myself.  At this point I've resigned myself to just having to take a credit card hit and buy a better machine myself, than go through the insurance hassles to get a bottom-of-the-line machine.


----------



## LillyBBBW

Zandoz said:


> It depends on if you are an insurance company or not. To buy one on your own, there are many excellent machines out there for under a grand. But when the insurance companies get involved the price frequently triples or quadruples. For that reason, many insurance companies throw up a lot of roadblocks for any kind of sleep testing/treatment/equipment. Ten years ago it took almost a year of hassles, and a false start with one supposedly approved sleep clinic that was later rejected by the insurance company. With both my original CPAP and later my BiPAP, rather than the insurance paying for the machine outright I had to go through a year of kind of a "rent to own" situation...for the first year, I had to pay a monthly rent on the machine (If I remember right the last one was $63 per month) then at the end of the year, the insurance company bought it for the grossly inflated price.
> 
> Last fall, I noticed my BiPAP was beyond it's hours of life expectancy, so I started checking into what the hassles were going to be to replace it. I'd hoped that things had smoothed out in the last 6 years...no such luck. It will still cost me almost as much in a years worth of rent to own payments, before the insurance will kick in, than it will for me to buy it outright myself.  At this point I've resigned myself to just having to take a credit card hit and buy a better machine myself, than go through the insurance hassles to get a bottom-of-the-line machine.



Thanks everybody for the information and advice, it has been really helpful and encouraging. In case anybody is keeping score I finally made my appointment for a consultation. It's not till March 30, plenty of time for me watch and write notable stuff down to tell the doctors. They may say, "Nah, you're not one of us," and then I'm free to go but at least I've got it out of the way. Thanks again.


----------



## MissToodles

I know I should really go for a study but in the meanwhile here it is:

According to my boyfriend, I don't snore at night but rather breathe quite loudly but never gasp for air or stop breathing. I know I have terrible short term memory, can't remember for the life of me small things and an hour later will remember but that could be the hashimoto's and being unmedicated. Do all apena sufferers snore ?


----------



## LillyBBBW

MissToodles said:


> I know I should really go for a study but in the meanwhile here it is:
> 
> According to my boyfriend, I don't snore at night but rather breathe quite loudly but never gasp for air or stop breathing. I know I have terrible short term memory, can't remember for the life of me small things and an hour later will remember but that could be the hashimoto's and being unmedicated. Do all apena sufferers snore ?



That's a good question Miss T. I too have the same issue. I am exhausted all day and I don't snore, only on my back. Last night just for shits and giggles I took allergy meds, decongestant and rinsed with a saline nasal spray to see if maybe breathing easier improves my sleep and danged if I don't feel better today and actually woke up and made it to work on time. Might just be simple allergies and not apnea but it's at least an idea for you to toss around with the other stuff you've been looking at.


----------



## Violet_Beauregard

Wise decision Lilly. At least you'll know one way or the other!




LillyBBBW said:


> Thanks everybody for the information and advice, it has been really helpful and encouraging. In case anybody is keeping score I finally made my appointment for a consultation. It's not till March 30, plenty of time for me watch and write notable stuff down to tell the doctors. They may say, "Nah, you're not one of us," and then I'm free to go but at least I've got it out of the way. Thanks again.


----------



## BigBeautifulMe

For MissToodles and Lilly, and anyone else who doesn't snore but think they might have apnea:

http://www.cpaptalk.com/viewtopic/t13698/Any-non-snorers-with-obstructive-sleep-apnea.html

a great link that discusses thins. Not all apneacs snore, and not all snorers have apnea.  Hope that helps.


----------



## Miss Vickie

Violet_Beauregard said:


> My boss uses a CPAP and he claimed he felt 100% better the following morning. I also saw an episode of The View where Rosie O'Donnell now uses a CPAP and she felt better the first day as well.
> 
> I didn't expect perfection, but geez....for all the grief I thought it would be different. I'm not jazzed in the least about using this thing, but if I have to I will. I know it will take some time to get into a regular routine, and I expect it will get better, but everything I've heard has been instantaneous results.
> 
> Anyone else use a CPAP? What were your results after once use? What can I expect after regular use?
> 
> Thanks!!!



I'm the wife of a CPAP user. After MONTHS of suffering, on both our parts (his with loss of energy, poorly controlled hypertension, daytime sleepiness, etc and mine a total lack of sleep because of his snoring) my sweetie finally got a sleep study and not surprisingly was diagnosed with severe sleep apnea. His oxygen saturation got down to 68% and he had 200+ episodes of apnea before they woke him and fitted him with a mask. He slept the rest of the night while they titrated his pressures, and has slept with a CPAP since.

It wasn't like a light switch. That may be true for some, but I think if it's a long term problem, it will take awhile to get used to it and gain the benefits from it. It took a couple of weeks for him to really notice a difference in energy level, and for his hypertension to ease; however, he is a great patient and is totally compliant, and he's doing very well. They switched him from a mask to nasal pillows after a couple of weeks and he's doing much better; the nasal mask gave him a sore on the top of his nose so the pillows are an improvement. He has a brand new kind, wish I knew the name of it, but it's literally brand new, and he likes it a lot. 

Did they give you Ambien to help you sleep while you're getting used to the machine? He's weaning himself off of it now, but it helped TREMENDOUSLY in the first few weeks.

Also, there are many many many systems out there. Full face masks, nasal masks, nasal pillows, and several kinds of each. There's also the size issue; it's important that your nasal pillows fit well, as BBMe said. They shouldn't go up your nose but rest at the nasal opening. We've found that they real key to success with a CPAP machine is having a good group who will help you with trial and error until you find the right set up for YOU. It's such an individual thing that it seems really rare to find the perfect fit the first time out, but it's SOOOOO worth going to the effort of continuing to look for what works. At the sleep clinic Burtimus went to, they give you a 30 day guarantee; you have 30 days to try out a new system and if you return it before those 30 days are over, they'll swap out a new one for you. It's been (literally) a life saver.



BigBeautifulMe said:


> You're welcome, Vi.  I'm glad you didn't give up last night. A lot of CPAP users I know use one of two bed pillows - either the "Shapeable Pillow" from Target, or the PAPillow from talkaboutsleep.com. The Shapeable Pillow is like a normal pillow, but can be shaped/molded, and will stay in that position. You can shape it so that it doesn't put pressure on the nasal pillows, and then sleep with it like that. The PAPillow is kind of T-shaped, with "holes" cut into the sides so that you can support your head, but, again, not put pressure on the mask.



Thanks for this information. I think Burtimus needs a different pillow. His only real complaint about the machine now is that the way the hose comes off, he has to adjust it at night. I think a different pillow would help. 



> ETA: Forgot to mention that hanging the hose above your bed can be very helpful in keeping the mask from getting tugged around by the hose all night. It really does help with comfort, and you won't get tangled up in the hose, or keep rolling over on the hose when you toss and turn. Here's a great resource for reading about different ways to do that: http://www.cpaptalk.com/viewtopic.php?t=10640
> I personally use the 3M cord bundler. It's one of those "command hooks" you put on the wall and can take down without damaging it. It isn't a traditional "hook shape," and it holds the hose just perfectly. For people who dont' have a headboard to help them in hanging the hose, it really works quite well. I like it because I can take it down and take it on trips with me.
> 
> If you want any more reading on these topics (as well as some reading on "fixes" other users have applied to the Swift, let me know and I can point you in the right directions. There is SO much information out there.



This is great information, thank you. My sweetie hangs his hose over the headboard of our bed and it works great. I'll definitely send him this information, in case he wants to tweak his set up. 



Les Toil said:


> Sometimes during the night my sweety's CPAP mask will reposition itself causing that loud "WHOOSH" sound in addition to her snoring. I'm torn between waking her so she can readjust the mask and not bothering her so she can continue to sleep while I put ear plugs in. When I tell her in the morning her mask was slipping slightly during the night, she insists I wake her and tell her so she can sleep properly. It's just that when I wake her to tell her, she's startled and grumpy and it gives me the imprerssion I've interrupted her sleep. And the poor woman has purchased numerous masks hoping there'll be one that stays in place.



Les, you definitely need to wake her up and get her to readjust her mask. And yes, if she's still snoring then it's not working. Either her pressure isn't high enough or she's not well fitted enough. She should keep talking to her sleep specialist to find one that WORKS. 



Violet_Beauregard said:


> Well, Day 4... a little better. Not so much discomfort while sleeping last night. I think I'm getting used to it. I'm not dragging AS MUCH when I wake up, so I think I'm getting there.



Yay for good news, Vi. I've not had anyone say it wasn't worth it, once they got used to it. I'm glad to hear you're doing better. And yes, if you have trouble with your setup go see the people who gave you the machine and have them help you find the right kind. Trial and error is normal, but you need the support to find a good set up for YOU. 

I have to tell you that in our case, it's worked wonders. Burtimus is working out more, he's got lots more energy, is in a better mood, and his blood pressure is much better. The change has been remarkable.


----------



## Violet_Beauregard

Thanks so much for the encouragement! I am getting more used to the nasal pillows. The plastic smell is kind of annoying, but I'm getting there.





Miss Vickie said:


> I'm the wife of a CPAP user. After MONTHS of suffering, on both our parts (his with loss of energy, poorly controlled hypertension, daytime sleepiness, etc and mine a total lack of sleep because of his snoring) my sweetie finally got a sleep study and not surprisingly was diagnosed with severe sleep apnea. His oxygen saturation got down to 68% and he had 200+ episodes of apnea before they woke him and fitted him with a mask. He slept the rest of the night while they titrated his pressures, and has slept with a CPAP since.
> 
> It wasn't like a light switch. That may be true for some, but I think if it's a long term problem, it will take awhile to get used to it and gain the benefits from it. It took a couple of weeks for him to really notice a difference in energy level, and for his hypertension to ease; however, he is a great patient and is totally compliant, and he's doing very well. They switched him from a mask to nasal pillows after a couple of weeks and he's doing much better; the nasal mask gave him a sore on the top of his nose so the pillows are an improvement. He has a brand new kind, wish I knew the name of it, but it's literally brand new, and he likes it a lot.
> 
> Did they give you Ambien to help you sleep while you're getting used to the machine? He's weaning himself off of it now, but it helped TREMENDOUSLY in the first few weeks.
> 
> Also, there are many many many systems out there. Full face masks, nasal masks, nasal pillows, and several kinds of each. There's also the size issue; it's important that your nasal pillows fit well, as BBMe said. They shouldn't go up your nose but rest at the nasal opening. We've found that they real key to success with a CPAP machine is having a good group who will help you with trial and error until you find the right set up for YOU. It's such an individual thing that it seems really rare to find the perfect fit the first time out, but it's SOOOOO worth going to the effort of continuing to look for what works. At the sleep clinic Burtimus went to, they give you a 30 day guarantee; you have 30 days to try out a new system and if you return it before those 30 days are over, they'll swap out a new one for you. It's been (literally) a life saver.


----------



## Violet_Beauregard

Well.... it seemed this morning it was a LITTLE easier waking up. I am getting more used to the nasal pillows...though the plastic smell is still kind of annoying!! LOL I like the ramping feature. It prevents the feeling of getting blasted with air right away. I think generally I'm getting more used to it. I'm hoping this will continue. I still am having problems with the "vanity" end of things. This is the one and ONLY time I'll say I'm glad I don't have a boyfriend sleeping over. I would HATE him seeing me wear this awful thing! LOL :doh:


----------



## imfree

Hahaha!!!, Violet, you need a boyfriend or husband that uses a CPAP or BiPAP, too. I visualize a bed with a nice tall headboard that has two outlets and two demand hooks on a shelf at the top of the headboard. I am somewhat of an engineering type rascal!
The Most
Adaptable,
Edgar


----------



## LillyBBBW

Violet_Beauregard said:


> Well.... it seemed this morning it was a LITTLE easier waking up. I am getting more used to the nasal pillows...though the plastic smell is still kind of annoying!! LOL I like the ramping feature. It prevents the feeling of getting blasted with air right away. I think generally I'm getting more used to it. I'm hoping this will continue. I still am having problems with the "vanity" end of things. This is the one and ONLY time I'll say I'm glad I don't have a boyfriend sleeping over. I would HATE him seeing me wear this awful thing! LOL :doh:



If I was with someone I really cared about and the doctors told him that he had to sleep with a live turkey dangling from his ankle I'd tie the knot myself Vi. I wouldn't let it bother you, not many people will care. They know it's just something you have to do.

EDIT: 'specially if he was cute and from Ohio.


----------



## Violet_Beauregard

Weeelllll, I suppose you're right there..... if he really cares, it won't much matter.... now, to just find that cute guy from Ohio... 




LillyBBBW said:


> If I was with someone I really cared about and the doctors told him that he had to sleep with a live turkey dangling from his ankle I'd tie the knot myself Vi. I wouldn't let it bother you, not many people will care. They know it's just something you have to do.
> 
> EDIT: 'specially if he was cute and from Ohio.


----------



## imfree

LillyBBBW said:


> If I was with someone I really cared about and the doctors told him that he had to sleep with a live turkey dangling from his ankle I'd tie the knot myself Vi. I wouldn't let it bother you, not many people will care. They know it's just something you have to do.
> 
> EDIT: 'specially if he was cute and from Ohio.


 Hi Lilly, the proverb says "true love does not think of self". You are
such a woman! I LOVE the way you stated it!!! May GOD richly bless you.
You Touched 
My Heart,
Edgar


----------



## Violet_Beauregard

Well, I was able to sleep in this morning (no work), so I wore the mask for a full 8 hours. I felt pretty good. I woke up, took it off...then laid back down for a little while, fell back asleep and woke up miserable. I felt sluggish. Obviously the CPAP is making some difference. 

I'm still getting used to wearing it, but it is getting better.


----------



## imfree

Hang in there, Violet, you're already doing GREAT! Some people can
take breathing for granted. Profound improvements have been in my life since I
took a multi-phased, pro-active stance toward my breathing, I am able to per-
form physical activities that I thought would never be possible again!!!
Blazing With
Life,
Edgar


----------



## Violet_Beauregard

Yes, Edgar, I do think I'm getting there.


----------



## imfree

Violet_Beauregard said:


> Weeelllll, I suppose you're right there..... if he really cares, it won't much matter.... now, to just find that cute guy from Ohio...


 Hahaha!!!, I wouldn't feel intimidated to have bed-partner who uses 
a CPAP, no, not at all. Before I got my BIPAP, I snored so loudly that no one 
could even sleep in the neighborhood around me!
The Silenced
Chain-Saw Snorer,
Edgar


----------



## Zandoz

LillyBBBW said:


> Thanks everybody for the information and advice, it has been really helpful and encouraging. In case anybody is keeping score I finally made my appointment for a consultation. It's not till March 30, plenty of time for me watch and write notable stuff down to tell the doctors. They may say, "Nah, you're not one of us," and then I'm free to go but at least I've got it out of the way. Thanks again.



Lilly, you're definitely on the right path...if there's any question, get checked. There really is no down side. If you do have apnea, it's the first step to dealing with it...if it turns out you do not, you get peace of mind...always a valuable commodity.


----------



## Zandoz

Violet_Beauregard said:


> Well.... it seemed this morning it was a LITTLE easier waking up. I am getting more used to the nasal pillows...though the plastic smell is still kind of annoying!! LOL I like the ramping feature. It prevents the feeling of getting blasted with air right away. I think generally I'm getting more used to it. I'm hoping this will continue. I still am having problems with the "vanity" end of things. This is the one and ONLY time I'll say I'm glad I don't have a boyfriend sleeping over. I would HATE him seeing me wear this awful thing! LOL :doh:




The plastic smell you're experiencing has me puzzled. With all the masks and hoses I've used over the years, I've never had that problem. One odor problem I have encountered, both with my own equipment and one of the sleep center's equipment, is an occasional burnt wood kind of smell. I've attributed it to using tap water instead of distilled for the humidifier.

On the vanity issue, look at it this way...if the person really cares about YOU, what you are wearing, especialy when what you are wearing is important to your well beiing, will not matter.


----------



## Violet_Beauregard

The smell isn't as bad. I don't have the humidifier yet, so that may help. 

And you are right about the vanity thing. Hopefully it won't matter! That would be IF I ever find "Mr. Right"...... LOLOL




Zandoz said:


> The plastic smell you're experiencing has me puzzled. With all the masks and hoses I've used over the years, I've never had that problem. One odor problem I have encountered, both with my own equipment and one of the sleep center's equipment, is an occasional burnt wood kind of smell. I've attributed it to using tap water instead of distilled for the humidifier.
> 
> On the vanity issue, look at it this way...if the person really cares about YOU, what you are wearing, especialy when what you are wearing is important to your well beiing, will not matter.


----------



## Violet_Beauregard

Very sore nose this morning... don't really know why. Right around the edges... kind of annoying, actually.... I have to admit, I'm feeling pretty good though, at 8:20 tonight. I had an active day today, and normally by now, I'd be whipped. Tonight I feel pretty good....

Gee, maybe there IS something to this CPAP thing..... LOLOL


----------



## imfree

Well, that's how we say it down here in Mid-Tn. You're begining to feel the difference the improved breathing makes. Mine was so bad that I was falling asleep at the wheel.
I really do think you're adorable, too.
HUGGZZ,
Edgar


----------



## Violet_Beauregard

I do think you might be right about finally feeling some effects. Tonight it will be a solid week of using it. We'll see how another solid week does. Fortunately I've never fallen asleep at the wheel, but I do doze off at work! LOL

I am pretty adorable, aren't I?? LOLOL




imfree said:


> Well, that's how we say it down here in Mid-Tn. You're begining to feel the difference the improved breathing makes. Mine was so bad that I was falling asleep at the wheel.
> I really do think you're adorable, too.
> HUGGZZ,
> Edgar


----------



## imfree

You ARE adorable, Violet!, I just didn't expect you to believe me
this quickly. Oh well. some lucky guy will end up with you and I'll have
the pleasure of knowing I contributed to your happiness!
Between A Laugh
And A Tear,
HUGGZZ,
Edgar


----------



## Violet_Beauregard

I probably don't really believe it yet.... I just had a good night tonight! I'm "feeling my oats" so-to-speak. Tomorrow morning I'll be back on the "I'm a loser" band wagon! I'll just be awake (thanks to my new CPAP) to think it! LOLOL

 Thanks darlin'..... 





imfree said:


> You ARE adorable, Violet!, I just didn't expect you to believe me
> this quickly. Oh well. some lucky guy will end up with you and I'll have
> the pleasure of knowing I contributed to your happiness!
> Between A Laugh
> And A Tear,
> HUGGZZ,
> Edgar


----------



## Violet_Beauregard

Eh... that's how I'm feeling today. Very tired...very sore. I had a big day yesterday...lots of walking in heels, lots of tension and being keyed up. I had trouble sleeping last night and trouble waking today. I don't think the CPAP had anything to do with it. I think it was me. I'm hoping tonight will be better.


----------



## imfree

Violet_Beauregard said:


> Eh... that's how I'm feeling today. Very tired...very sore. I had a big day yesterday...lots of walking in heels, lots of tension and being keyed up. I had trouble sleeping last night and trouble waking today. I don't think the CPAP had anything to do with it. I think it was me. I'm hoping tonight will be better.


 Sorry, Violet, all I can give you is verbal HUGGZZ, verbal cuddles, and
verbal shoulder massages. Sounds to me, though, real ones would hit the spot.
My bad day today was all mental, trying to fix earthlink, they failed to fix it, receiving the new DSL modem from bellsouth and having a world of hurt getting the new service to work. Mom and I went for a bundled-package from Bellsouth and the modem wasn't scheduled to arrive until Friday. I can't wait to tell earthlink where to go, hahaha!
I Pray Comfort
And Peace For
You,
Edgar


----------



## Violet_Beauregard

Thanks Edgar.... I'm hoping that tonight I'll be so exhausted I'll pass right out! (mask and all... LOL).

Good luck with the modem. It'll work out. It will just test your patience in the process.

Vi




imfree said:


> Sorry, Violet, all I can give you is verbal HUGGZZ, verbal cuddles, and
> verbal shoulder massages. Sounds to me, though, real ones would hit the spot.
> My bad day today was all mental, trying to fix earthlink, they failed to fix it, receiving the new DSL modem from bellsouth and having a world of hurt getting the new service to work. Mom and I went for a bundled-package from Bellsouth and the modem wasn't scheduled to arrive until Friday. I can't wait to tell earthlink where to go, hahaha!
> I Pray Comfort
> And Peace For
> You,
> Edgar


----------



## imfree

Violet_Beauregard said:


> Thanks Edgar.... I'm hoping that tonight I'll be so exhausted I'll pass right out! (mask and all... LOL).
> 
> Good luck with the modem. It'll work out. It will just test your patience in the process.
> 
> Vi


 Hahaha!!!, Violet, not only is BellSouth working great, but I've cancelled Earthlink and won't be billed again! I'm pretty sure the Earthlink modem failed, my second Earthlink modem failure in the 13 months I had DSL service through them. 
Hahaha!!!, Violet, as far as sleep goes, I give really soft, warm, squooshy HUGGZZ and cuddles, you probably wouldn't have too much trouble falling asleep im my arms........whoops!!!!..........BAD BOY, STOP THAT!!!
Sweet Dreams,
Edgar


----------



## Happy FA

One of the most amazing things about having sleep apnea is that you're tired all the time, except of course when you're thinking of going to bed in the evening. So, when you find that you have apnea and then begin to treat it with a CPAP or other wind machine you now discover that your body has flavors of feeling tired, rested, full of energy and everything in between. 

It is very easy to take the view that if you're feeling tired or run down, after you've gotten your cpap machine that it is the machine that's not working, or you're breathing through your mouth, or some other treatment issue. However, this isn't always the case. While the CPAP can be a magic bullet to make the effects of the apnea disappear and recapture your life, this is only part of the problem. 

Sleep like so many other areas of our life includes two components, quality and quantity. The CPAP only deals with the quality of the sleep you're getting. It doesn't deal with the quantity that you're receiving. Sometimes, the problem isn't the quality of the sleep, but how much of it you're getting. 

Thinking back to my college days, long before I had apnea, I used to pull all-nighters on a regular basis, usually for school work procrastinated to the last minute, but once just to learn how to flick a beer bottle cap across a room with accuracy with a snap of my thumb and middle finger. Usually, a day or two of all nighters would leave me in a weird mood until I made up the sleep debt. 

So, if you're a CPAP newbie and you're feeling really tired and wondering whether the problem is the treatment side, stop and think about what sort of physical and mental demands you've been putting on your body(with the new found energy and mental focus of a rested body/mind you tend to feel so good you overdo things to start), and the number of hours of sleep you've gotten. The answer may just be a matter of sleeping for an extra hour or two.


----------



## Violet_Beauregard

Excellent points and definitely something to think about. I have been burning the candle at both ends for a while, for an event that took place on Sunday. Perhaps now that I can relax, I'll be able to make the most of the advantages of the CPAP. 

Thanks for the info!!




Happy FA said:


> One of the most amazing things about having sleep apnea is that you're tired all the time, except of course when you're thinking of going to bed in the evening. So, when you find that you have apnea and then begin to treat it with a CPAP or other wind machine you now discover that your body has flavors of feeling tired, rested, full of energy and everything in between.
> 
> It is very easy to take the view that if you're feeling tired or run down, after you've gotten your cpap machine that it is the machine that's not working, or you're breathing through your mouth, or some other treatment issue. However, this isn't always the case. While the CPAP can be a magic bullet to make the effects of the apnea disappear and recapture your life, this is only part of the problem.
> 
> Sleep like so many other areas of our life includes two components, quality and quantity. The CPAP only deals with the quality of the sleep you're getting. It doesn't deal with the quantity that you're receiving. Sometimes, the problem isn't the quality of the sleep, but how much of it you're getting.
> 
> Thinking back to my college days, long before I had apnea, I used to pull all-nighters on a regular basis, usually for school work procrastinated to the last minute, but once just to learn how to flick a beer bottle cap across a room with accuracy with a snap of my thumb and middle finger. Usually, a day or two of all nighters would leave me in a weird mood until I made up the sleep debt.
> 
> So, if you're a CPAP newbie and you're feeling really tired and wondering whether the problem is the treatment side, stop and think about what sort of physical and mental demands you've been putting on your body(with the new found energy and mental focus of a rested body/mind you tend to feel so good you overdo things to start), and the number of hours of sleep you've gotten. The answer may just be a matter of sleeping for an extra hour or two.


----------



## Violet_Beauregard

Edgar, Edgar, Edgar....what am I going to do with you???

LOL 




imfree said:


> Hahaha!!!, Violet, not only is BellSouth working great, but I've cancelled Earthlink and won't be billed again! I'm pretty sure the Earthlink modem failed, my second Earthlink modem failure in the 13 months I had DSL service through them.
> Hahaha!!!, Violet, as far as sleep goes, I give really soft, warm, squooshy HUGGZZ and cuddles, you probably wouldn't have too much trouble falling asleep im my arms........whoops!!!!..........BAD BOY, STOP THAT!!!
> Sweet Dreams,
> Edgar


----------



## imfree

Violet_Beauregard said:


> Edgar, Edgar, Edgar....what am I going to do with you???
> 
> LOL


 Like the baby dinosaur in the 90's series said, "gotta' love me"!!!,
of course!!! I strive to be a delightful "nut-case"!
May You Laugh
As Much As I Do,
Edgar


----------



## Violet_Beauregard

Remember, you said it, not me!!







imfree said:


> Like the baby dinosaur in the 90's series said, "gotta' love me"!!!,
> of course!!! I strive to be a delightful "nut-case"!
> May You Laugh
> As Much As I Do,
> Edgar


----------



## imfree

Violet_Beauregard said:


> Remember, you said it, not me!!
> 
> [/QUOTE
> 
> Yep, I'm a "nut-case", alright, but, somehow, I think you kind'a
> like me that way. You're just fun to play with online and I like you:smitten: .
> HUGGZZ,
> Edgar


----------



## Violet_Beauregard

CPAP is.... OK...... I'm still hanging in there. I'm getting more used to it I think. My nose is incredibly sore, but I think I'll just have to learn to live with that. My energy level is up a little, though last evening I was fighting to stay awake in front of the TV. I still wake up several times at night, I'm not sure what might be causing that. Over all, the whole thing is tolerable.


----------



## Violet_Beauregard

Yeah, I like you kinda nutty.... you're not so bad.... 




> Yep, I'm a "nut-case", alright, but, somehow, I think you kind'a
> like me that way. You're just fun to play with online and I like you:smitten: .
> HUGGZZ,
> Edgar


----------



## imfree

Violet_Beauregard said:


> Yeah, I like you kinda nutty.... you're not so bad....


 Sounds to me that once you're past the sore nose, you'll be pretty well-adjusted to using the CPAP. Because your apnea is mild, it seems that it's OK for your short-term improvement to be modest. In the long run, you'll have better blood-pressure and heart-health. I'm sure even the modest improvement in energy level is welcome.
You're sweet, fun to interact with online, and I could
probably really love you if you need me.:happy: :kiss2: :smitten: :batting: :happy: 
HUGGZZ And Cuddles, 
Edgar


----------



## Violet_Beauregard

At this point a modest improvement in energy is better than none. I'm hoping with some long-term use, I'll see more results over the next few months.

Edgar, you're sweet too, and I love teasing with you.... I can always enjoy that!  :batting: 




imfree said:


> Sounds to me that once you're past the sore nose, you'll be pretty well-adjusted to using the CPAP. Because your apnea is mild, it seems that it's OK for your short-term improvement to be modest. In the long run, you'll have better blood-pressure and heart-health. I'm sure even the modest improvement in energy level is welcome.
> You're sweet, fun to interact with online, and I could
> probably really love you if you need me.:happy: :kiss2: :smitten: :batting: :happy:
> HUGGZZ And Cuddles,
> Edgar


----------



## imfree

Violet_Beauregard said:


> At this point a modest improvement in energy is better than none. I'm hoping with some long-term use, I'll see more results over the next few months.
> 
> Edgar, you're sweet too, and I love teasing with you.... I can always enjoy that!  :batting:


 Yep, Violet, you're BOTH fun AND adorable, ohhhh, what am
I going to do?
HUGGZZ
And Grinz,
Edgar


----------



## Violet_Beauregard

What are you going to do? Keep worshiping and adoring me, that's what!!





> Yep, Violet, you're BOTH fun AND adorable, ohhhh, what am
> I going to do?
> HUGGZZ
> And Grinz,
> Edgar


----------



## imfree

Violet_Beauregard said:


> What are you going to do? Keep worshiping and adoring me, that's what!!


 Sorry, Violet, I worship Christ. You REALLY are cute, and oh-so adorable. Can you accept being number one on Earth and let HIM be master of the universe? We can all take our proper place and be happy within that framework.
HUGGZZ n Cuddles,
Edgar


----------



## Violet_Beauregard

I'll concede to that, providing that you constantly remind me how wonderful I really am.... LOLOL 




> Sorry, Violet, I worship Christ. You REALLY are cute, and oh-so adorable. Can you accept being number one on Earth and let HIM be master of the universe? We can all take our proper place and be happy within that framework.
> HUGGZZ n Cuddles,
> Edgar


----------



## Violet_Beauregard

Back on topic.... my CPAP..... can anyone suggest something for my nose? I use the nasal air pillows and the edges of my nose are so raw... It's like I have a cold and I've been blowing for a week straight.... ugh.

BBMe...you're my resident expert.... any thoughts??


----------



## imfree

Violet_Beauregard said:


> I'll concede to that, providing that you constantly remind me how wonderful I really am.... LOLOL


 Violet, you've more than earned my continuing reminders that you
are wonderful, sweet. adorable, and certainly, most loveable. Email Dr
TJ about the nasal soreness. She lovelingly shares simple and inexpen-
sive solutions for such problems.
HUGGZZ,
Edgar


----------



## Violet_Beauregard

Thanks Edgar!

Edgar you use a BiPAP...what's the difference between a CPAP and BiPAP? 







> Violet, you've more than earned my continuing reminders that you
> are wonderful, sweet. adorable, and certainly, most loveable. Email Dr
> TJ about the nasal soreness. She lovelingly shares simple and inexpen-
> sive solutions for such problems.
> HUGGZZ,
> Edgar


----------



## imfree

Violet_Beauregard said:


> Thanks Edgar!
> 
> Edgar you use a BiPAP...what's the difference between a CPAP and BiPAP?


 Well Violet, the BiPAP, near as I can remember, has digitally controlled bi-level air pressure. One poster said that some BiPAPs could
"breathe" for a person with central sleep-apnea. Perhaps bi-level air pressure could encourage a person to resume breathing in an apnea episode.
About 10 years ago, my ex shook me awake violently one Saturday
morning and told me I hadn't breathed for almost 2 minutes.
Alive To Tell
& Give HUGGZ,
Edgar
*I have apnea episodes when I'm dreaming 
about Violet, do I need a BiPAP?


----------



## Violet_Beauregard

Does it hook up to oxygen as opposed to regular air? Maybe it senses the apena and forces the air to stop it? I was curious about the difference. Obviously my apnea isn't that severe, I just wondered what the difference was.

Thanks for the education!





imfree said:


> Well Violet, the BiPAP, near as I can remember, has digitally controlled bi-level air pressure. One poster said that some BiPAPs could
> "breathe" for a person with central sleep-apnea. Perhaps bi-level air pressure could encourage a person to resume breathing in an apnea episode.
> About 10 years ago, my ex shook me awake violently one Saturday
> morning and told me I hadn't breathed for almost 2 minutes.
> Alive To Tell
> & Give HUGGZ,
> Edgar
> *I have apnea episodes when I'm dreaming
> about Violet, do I need a BiPAP?


----------



## imfree

Violet_Beauregard said:


> Does it hook up to oxygen as opposed to regular air? Maybe it senses the apena and forces the air to stop it? I was curious about the difference. Obviously my apnea isn't that severe, I just wondered what the difference was.
> 
> Thanks for the education!


 Hi Violet, my BiPaP has a "tee" in the big hose that goes to the mask. The tee connects at the machine's outlet fitting and allows a 1/4" oxygen line
to mix oxygen with normal air as it comes out of the machine. I use 4 liters per minute at night on the BiPAP. I use 2 liters-per minute of oxygen during the day. At home, I use an oxygen concentrator, a 50lb machine that extracts oxygen from normal air. It has a compressor that pressureizes air, then a filter that removes all gasses, other than oxygen. I use a 2 ft tall tank on a cart when I'm out and a tank will run 8-9 hrs at 2 liters per minute.
I'm thinking that the BiPAP probably does sense and try to correct
episodes of apnea.
I'm still thinking that a headboard shelf set up for 2 PAP machines
would be EVER so sexy, hahaha!
Tender HUGGZZ,
Edgar


----------



## Violet_Beauregard

Interesting. So does your insurance pay for all that oxygen? What a pain in the ass that has to be dragging that thing around? I know you're happy with yourself and say that you're healthier now at 400 lb., but wouldn't getting off that oxygen make your life easier? Is that a goal?

I don't mean to be nibby, I'm just curious....








imfree said:


> Hi Violet, my BiPaP has a "tee" in the big hose that goes to the mask. The tee connects at the machine's outlet fitting and allows a 1/4" oxygen line
> to mix oxygen with normal air as it comes out of the machine. I use 4 liters per minute at night on the BiPAP. I use 2 liters-per minute of oxygen during the day. At home, I use an oxygen concentrator, a 50lb machine that extracts oxygen from normal air. It has a compressor that pressureizes air, then a filter that removes all gasses, other than oxygen. I use a 2 ft tall tank on a cart when I'm out and a tank will run 8-9 hrs at 2 liters per minute.
> I'm thinking that the BiPAP probably does sense and try to correct
> episodes of apnea.
> I'm still thinking that a headboard shelf set up for 2 PAP machines
> would be EVER so sexy, hahaha!
> Tender HUGGZZ,
> Edgar


----------



## imfree

Violet_Beauregard said:


> Interesting. So does your insurance pay for all that oxygen? What a pain in the ass that has to be dragging that thing around? I know you're happy with yourself and say that you're healthier now at 400 lb., but wouldn't getting off that oxygen make your life easier? Is that a goal?
> 
> I don't mean to be nibby, I'm just curious....


 Hi Violet, those words terrified me, back in 1973 when I joined the 
United States Air Force. I was honorably discharged from the Air Force after 28 months of service because I became obese. The VA provides my oxygen, medical care, and medicines. I saw Dr TJ because a former neighbor insisted that I have this wonderful Christian as my endocrinologist and PCP. I had TennCare before the state had a big move to drop everyone they could. TJ was my dr while I had TennCare. TJ and an attorney are working to get me put on SSDI, Social Security Disability.
The oxygen tank cart is easy to deal with. The VA has been supplying me with year-round decongestants and nasal spray for a few months. My nose and sinuses are finally completely clear. I think it is very likely that the pulmonologist will take me off oxygen when I see him in september. A CT scan back in August of last year showed no lung damage and no lung disease.
The pulmonologist thinks my central nervous system is failing to make me breathe deeply and frequently enough. My condition should improve or stay the same. Clear breathing passages may have been all I needed.
We did discover that I can quickly recover my oxygen saturation, even without oxygen, simply by deliberately breathing faster and more deeply.
HUGGZZ,
Edgar


----------



## Violet_Beauregard

Well, the insurance industry is so volatile anyway, it's good that they cover what they do for you.

I think it would make you more mobile without the oxygen, so hopefully that will happen for you in September. Good luck.....






imfree said:


> Hi Violet, those words terrified me, back in 1973 when I joined the
> United States Air Force. I was honorably discharged from the Air Force after 28 months of service because I became obese. The VA provides my oxygen, medical care, and medicines. I saw Dr TJ because a former neighbor insisted that I have this wonderful Christian as my endocrinologist and PCP. I had TennCare before the state had a big move to drop everyone they could. TJ was my dr while I had TennCare. TJ and an attorney are working to get me put on SSDI, Social Security Disability.
> The oxygen tank cart is easy to deal with. The VA has been supplying me with year-round decongestants and nasal spray for a few months. My nose and sinuses are finally completely clear. I think it is very likely that the pulmonologist will take me off oxygen when I see him in september. A CT scan back in August of last year showed no lung damage and no lung disease.
> The pulmonologist thinks my central nervous system is failing to make me breathe deeply and frequently enough. My condition should improve or stay the same. Clear breathing passages may have been all I needed.
> We did discover that I can quickly recover my oxygen saturation, even without oxygen, simply by deliberately breathing faster and more deeply.
> HUGGZZ,
> Edgar


----------



## imfree

Violet_Beauregard said:


> Well, the insurance industry is so volatile anyway, it's good that they cover what they do for you.
> 
> I think it would make you more mobile without the oxygen, so hopefully that will happen for you in September. Good luck.....


 Hi Violet, yes, I'd love the improved mobility. I used to shoot video at
church and on-location at other places and events. Mom bought me a small folding cart and I built an on-location, live DVD recording rig. I'm shooting 3 weddings in the next few months. It's in my heart to shoot on-location video.
I really missed it and I'm blessed to be able to resume my passion. I'll be even
further blessed when I go off oxygen and enjoy the improved mobility.
HUGGZZ,
The Video Guy,
Edgar


----------



## Violet_Beauregard

Well, being more mobile would enable you to be more active and to be able to that video stuff.... that will also boost your self esteem... (not that YOU need your self esteem boosted Edgar...yours is off the charts! LOL), but you know what I mean. It contributes to feeling like a "whole" person. Everyone needs that feeling.





imfree said:


> Hi Violet, yes, I'd love the improved mobility. I used to shoot video at
> church and on-location at other places and events. Mom bought me a small folding cart and I built an on-location, live DVD recording rig. I'm shooting 3 weddings in the next few months. It's in my heart to shoot on-location video.
> I really missed it and I'm blessed to be able to resume my passion. I'll be even
> further blessed when I go off oxygen and enjoy the improved mobility.
> HUGGZZ,
> The Video Guy,
> Edgar


----------



## imfree

Violet_Beauregard said:


> Well, being more mobile would enable you to be more active and to be able to that video stuff.... that will also boost your self esteem... (not that YOU need your self esteem boosted Edgar...yours is off the charts! LOL), but you know what I mean. It contributes to feeling like a "whole" person. Everyone needs that feeling.


 Hahaha!!!, Violet, you're so sweet, and so right. If you can role
play tugging an oxygen tank-cart....just extending the tubing from 7ft to 14ft
has given me freedom. I can pump gas without taking the cart out of the car.
I can move around in church with ease as I give/receive HUGGZZ or shoot video!
I live with the oxy and the cart well because I adapt well. You won't believe me until you see me. I'm extremely agile and move very fast for a man my size. I can stand straight up from a chair in a second, not even pushing up with my hands as I rise! Naturally, the house shakes when I do that. My wild movement DOES use a lot of oxygen at times! The human heart and lungs allow an average person to sustain a power output of .1 horsepower, long term. I produce .75 horsepower when I raise my upper body(about 300lbs) 18" out of a chair in a second. See for yourself, do the math!
The 400lb WildMan,
Edgar


----------



## imfree

Violet_Beauregard said:


> Well, being more mobile would enable you to be more active and to be able to that video stuff.... that will also boost your self esteem... (not that YOU need your self esteem boosted Edgar...yours is off the charts! LOL), but you know what I mean. It contributes to feeling like a "whole" person. Everyone needs that feeling.


 Hahaha!, Thanks Violet. TJ LIVES her Christian faith with such passion, love, and spirit that she compels me to do likewise. Unshakeable self-esteem is just one of the benefits of living a spirit-filled life.
Spirited HUGGZZ,
Edgar


----------



## Zandoz

Violet_Beauregard said:


> The smell isn't as bad. I don't have the humidifier yet, so that may help.
> 
> And you are right about the vanity thing. Hopefully it won't matter! That would be IF I ever find "Mr. Right"...... LOLOL



Not if....when!


----------



## Zandoz

Violet_Beauregard said:


> Back on topic.... my CPAP..... can anyone suggest something for my nose? I use the nasal air pillows and the edges of my nose are so raw... It's like I have a cold and I've been blowing for a week straight.... ugh.
> 
> BBMe...you're my resident expert.... any thoughts??



First off, it sounds like you may have the nasal pillows pressed too tightly to your nose, or they are the wrong size. On the rare occasion I've had any irritation I've used just a dab what ever aloe moisturizing lotion available


----------



## Zandoz

Violet_Beauregard said:


> Thanks Edgar!
> 
> Edgar you use a BiPAP...what's the difference between a CPAP and BiPAP?



The C of CPAP is for continuous...one continious pressure all the time. The Bi of BiPAP is for two pressures...one higher pressure while inhaling, and one lower while exhaling. The reason for the two pressures is that there is a limit to how high a constant pressure can be without inhibiting the ability to exhale. The problem is that for some people, the constant pressure limit is lower than what is needed to keep the airway open. The BiPAPs put out a considerably higher pressure, but have a sensing system to detect when inhaling stops, then very quickly drops the pressure to allow exhaling.

The systems that force people to breath work on a timing system...when there has been no change in pressure associated with inhaling, within a certain time, they automatically ramp up the pressure anyway...basically forcing the lungs into an inhale cycle.

Bored to sleep yet?


----------



## imfree

Zandoz said:


> Not if....when!


 Zandoz, I fully agree with you!
Edgar


----------



## Violet_Beauregard

Zandoz said:


> Not if....when!



Unfortunately, I haven't reached that positivity yet!




Zandoz said:


> First off, it sounds like you may have the nasal pillows pressed too tightly to your nose, or they are the wrong size. On the rare occasion I've had any irritation I've used just a dab what ever aloe moisturizing lotion available



I think the size is ok, but you might be right about loosening them. I'll try that. I did loosen them some, but I keep feeling like they're too loose. I've been putting some serious moisturizer on them. They are getting better. 




Zandoz said:


> The C of CPAP is for continuous...one continious pressure all the time. The Bi of BiPAP is for two pressures...one higher pressure while inhaling, and one lower while exhaling. The reason for the two pressures is that there is a limit to how high a constant pressure can be without inhibiting the ability to exhale. The problem is that for some people, the constant pressure limit is lower than what is needed to keep the airway open. The BiPAPs put out a considerably higher pressure, but have a sensing system to detect when inhaling stops, then very quickly drops the pressure to allow exhaling.
> 
> The systems that force people to breath work on a timing system...when there has been no change in pressure associated with inhaling, within a certain time, they automatically ramp up the pressure anyway...basically forcing the lungs into an inhale cycle.
> 
> Bored to sleep yet?



Absolutely not! Now at least I do know the difference. VERY interesting. I wonder if a BiPAP wouldn't be better for my boss. He has severe apnea, though he does say his CPAP has done wonders for him. Personally, I have some other factors that I think are inhibiting me from seeing the effects quite yet. I've been switching medications and I think that may be part of the issue.




imfree said:


> Zandoz, I fully agree with you!
> Edgar



Keep thinking positive for me Edgar...Mr. Right has *got* to be somewhere here in Ohio!


----------



## imfree

Violet_Beauregard said:


> Unfortunately, I haven't reached that positivity yet!
> 
> 
> 
> 
> I think the size is ok, but you might be right about loosening them. I'll try that. I did loosen them some, but I keep feeling like they're too loose. I've been putting some serious moisturizer on them. They are getting better.
> 
> 
> 
> 
> Absolutely not! Now at least I do know the difference. VERY interesting. I wonder if a BiPAP wouldn't be better for my boss. He has severe apnea, though he does say his CPAP has done wonders for him. Personally, I have some other factors that I think are inhibiting me from seeing the effects quite yet. I've been switching medications and I think that may be part of the issue.
> 
> 
> 
> 
> Keep thinking positive for me Edgar...Mr. Right has *got* to be somewhere here in Ohio!



Hahaha, Violet, well that rules me out since I'm at least 322 miles south of you! My love does not think of self and I love you, anyway. Please pray for me, that I'm united with my ms. right.
Lovingly
In Tears,
Edgar


----------



## Violet_Beauregard

Awww Edgar.... you can always be my long-distance loving admirer... count on that. :wubu: I don't think geography will allow otherwise! LOL I will pray that you find Ms Right... and if she has a brother in Ohio, send him my way!!




imfree said:


> Hahaha, Violet, well that rules me out since I'm at least 322 miles south of you! My love does not think of self and I love you, anyway. Please pray for me, that I'm united with my ms. right.
> Lovingly
> In Tears,
> Edgar


----------



## imfree

Violet_Beauregard said:


> Awww Edgar.... you can always be my long-distance loving admirer... count on that. :wubu: I don't think geography will allow otherwise! LOL I will pray that you find Ms Right... and if she has a brother in Ohio, send him my way!!


 Hahaha!!!, Violet, if we BOTH get lucky, I'll send him your way.
Other than a great church and doctor, I'm not really bolted-down in middle Tn.
Just about every major city has a VA hospital, too. TJ takes my sugars & BP's 
by email, anyway. My ex dissolved all our property and I live with my mother...
.......hahaha!
Your Long-Distance
Loving Admirer,
Edgar


----------



## Violet_Beauregard

I lost track of the day I'm on the CPAP..... Last night I was exhausted. I got up over an hour early yesterday to pick up my boss for work (he goes in earlier than me) as a favor. (he's a very nice guy, didn't have a problem doing the favor) And I was up later than usual, as my nephew is up visiting for the weekend (he's 13...we were watching a movie as I was goofing online). And it was a stressful/emotional day for a number of reasons. Any who, when I finally went to bed and got on the CPAP, I had a feeling I would sleep well, and I did. I only recall waking up once to turn over...I slept the rest of the night, until 7:00 am when I heard my nephew get up and come down the hall. I'm hoping that the good sleep continues.

The nasal pillows are still killing my nose, but I got some good cream that's helping. I loosened the straps a little bit and that's helped. I still absolutely HATE the head gear and what it does to my hair. I have very long hair (as you can see in my avatar) and that head gear can be a real problem. Most nights I pull it back into a ponytail to avoid it getting tangled in the head gear. I think I've left it free only twice...big mistake.


----------



## BigBeautifulMe

I have longer hair, too, Vi, and I also pull it back into a ponytail every night. Also helps keep the headgear in place.  The good news is that even with the velcro-y straps I have, there's no damage being done to my hair. People who have started to see damage with it have started wearing caps of various kinds under it. Keep in mind that's an option if you start worrying about that, and I'll do a little reserach and post ideas for you. Good luck, and glad you slept well last night!


----------



## Violet_Beauregard

Thanks! I don't think it's damaging my hair, but I hate that it's all smashed down the next morning. Some days I can get away with not washing and drying and flattening my hair, depending on how it looks in the morning... not with wearing the head gear! If you find anything interesting though, please let me know! 






BigBeautifulMe said:


> I have longer hair, too, Vi, and I also pull it back into a ponytail every night. Also helps keep the headgear in place.  The good news is that even with the velcro-y straps I have, there's no damage being done to my hair. People who have started to see damage with it have started wearing caps of various kinds under it. Keep in mind that's an option if you start worrying about that, and I'll do a little reserach and post ideas for you. Good luck, and glad you slept well last night!


----------



## Violet_Beauregard

Another good sleeping night last night. I'm hoping this keeps up!


----------



## BigBeautifulMe

Yay, Violet! Your cheering section is going wild!


----------



## Violet_Beauregard

Wooo hooo!! Me too!!!







BigBeautifulMe said:


> Yay, Violet! Your cheering section is going wild!


----------



## imfree

BigBeautifulMe said:


> Yay, Violet! Your cheering section is going wild!


 Count me as being in that cheering section!
Edgar


----------



## Violet_Beauregard

Last couple of nights have been.... eh..... Not feeling well at all today. I have mild migrane and I'm considering skipping the CPAP tonight. I just don't think I can deal with the head gear and noise tonight. 

Anyone else have that problem at times?


----------



## BigBeautifulMe

Don't skip it, Violet. You'll feel MUCH worse if you do. The effects of a night without CPAP are horriffic, once you get used to life with it. Trust me on this one. Also, one of the side effects of untreated apnea is headache, and you really don't want it to be worse. Not to mention the damage you do to your heart and...yes, you already know.  Stick with it!


----------



## Violet_Beauregard

Ohhh...Oookay... you talked me into it. I'll give it a try.... If I'm miserable, I'm taking it off!  BUT, I'll at least try it..... Just for you BBMe..... :batting: 





BigBeautifulMe said:


> Don't skip it, Violet. You'll feel MUCH worse if you do. The effects of a night without CPAP are horriffic, once you get used to life with it. Trust me on this one. Also, one of the side effects of untreated apnea is headache, and you really don't want it to be worse. Not to mention the damage you do to your heart and...yes, you already know.  Stick with it!


----------



## imfree

BigBeautifulMe said:


> Don't skip it, Violet. You'll feel MUCH worse if you do. The effects of a night without CPAP are horriffic, once you get used to life with it. Trust me on this one. Also, one of the side effects of untreated apnea is headache, and you really don't want it to be worse. Not to mention the damage you do to your heart and...yes, you already know.  Stick with it!


 She's right, listen to her.


----------



## Violet_Beauregard

Well I did wear it and I slept pretty good, but not because of the CPAP...I think I was just so damn tired.... My head was killing me. I'm better today. I'm surprised that the headgear and nasal pillows didn't bother me more, since I didn't feel well. Probably cause I was so tired. Either way, I wore it. 






imfree said:


> She's right, listen to her.


----------



## imfree

Violet_Beauregard said:


> Well I did wear it and I slept pretty good, but not because of the CPAP...I think I was just so damn tired.... My head was killing me. I'm better today. I'm surprised that the headgear and nasal pillows didn't bother me more, since I didn't feel well. Probably cause I was so tired. Either way, I wore it.


 Good, I'm glad you didn't give in to the temptation not to use
the CPAP. You probably needed it more than ever last night. In my case, with
my apnea being central nervous system related, I could possibly have a fatal
apnea episode if I was extremely fatigued and went to sleep without the
BiPAP.
Though my interaction is quieter now, be assured that I still
think you're most adorable and I want you to take good care of yourself.
Your Friend,
Edgar


----------



## BigBeautifulMe

So proud of you, Violet.  You totally did the right thing. 

Mwah!


----------



## Miss Vickie

Violet, I'm so happy and pleased that you're continuing to use the CPAP, even when it's not convenient. When you're not feeling good is probably the most important time to use it.

Just an update on my sweetie. He went in for his final check with the sleep people and his blood pressure was dead-on normal -- for the first time in... oh... forever.  He hasn't changed anything else but started using the CPAP so I give the credit to it, and to him for sticking with it. He's got an amazing amount of energy, is far more alert, and in general seems to be a much happier guy. And with any luck he'll be around for a long time to come.


----------



## Violet_Beauregard

Thanks Edgar....you're still too sweet to me.... 




imfree said:


> Good, I'm glad you didn't give in to the temptation not to use
> the CPAP. You probably needed it more than ever last night. In my case, with
> my apnea being central nervous system related, I could possibly have a fatal
> apnea episode if I was extremely fatigued and went to sleep without the
> BiPAP.
> Though my interaction is quieter now, be assured that I still
> think you're most adorable and I want you to take good care of yourself.
> Your Friend,
> Edgar






Thank you... I'm so happy you're proud!! 



BigBeautifulMe said:


> So proud of you, Violet.  You totally did the right thing.
> 
> Mwah!







Thanks! It's a pain in the a$$, but I am trying to stick with it.

Glad to hear your sweetie is seeing the effects! If he has marked improvement, that is terrific!!



Miss Vickie said:


> Violet, I'm so happy and pleased that you're continuing to use the CPAP, even when it's not convenient. When you're not feeling good is probably the most important time to use it.
> 
> Just an update on my sweetie. He went in for his final check with the sleep people and his blood pressure was dead-on normal -- for the first time in... oh... forever.  He hasn't changed anything else but started using the CPAP so I give the credit to it, and to him for sticking with it. He's got an amazing amount of energy, is far more alert, and in general seems to be a much happier guy. And with any luck he'll be around for a long time to come.


----------



## Violet_Beauregard

More CPAP thoughts.... I know it's still early, but I swear this CPAP isn't really doing much for me. I'm still a bit tired during the day, and still tired in the evenings when I'm watching TV. I still have to fight to stay awake at 7:00. And I'm sure not springing out of bed in the mornings. These are all things that I thought would improve. I expected it almost instantly, but I know that was somewhat unrealistic. Well here I am nearly 3 weeks on this thing and I'm really not seeing too much. Is it me?? Am I still expecting big results too soon? I swear I sleep worse *because* of it... messing the the headgear and the hose..what a pain.... I *know* I wake several times to deal with that stuff. WHAT AM I DOING WRONG HERE???


----------



## imfree

Violet_Beauregard said:


> More CPAP thoughts.... I know it's still early, but I swear this CPAP isn't really doing much for me. I'm still a bit tired during the day, and still tired in the evenings when I'm watching TV. I still have to fight to stay awake at 7:00. And I'm sure not springing out of bed in the mornings. These are all things that I thought would improve. I expected it almost instantly, but I know that was somewhat unrealistic. Well here I am nearly 3 weeks on this thing and I'm really not seeing too much. Is it me?? Am I still expecting big results too soon? I swear I sleep worse *because* of it... messing the the headgear and the hose..what a pain.... I *know* I wake several times to deal with that stuff. WHAT AM I DOING WRONG HERE???


 Violet, you could have other issues, bed, environment in the bedroom,
food eaten before bed, etc. One night, before I was on the BiPAP, my then GF
and I cuddled and caressed for a couple hours, fell asleep in each-other's arms, then woke up 4 hours later in the SAME position! I flailed my arms and
legs violently in my sleep study, yet I slept the same amount of time in my
GF's arms without moving at all! It makes me wonder.


----------



## Violet_Beauregard

Thanks Edgar.... I have thought of those things.... I do like the room dark and silent, and the sound of the CPAP has been kind of annoying, but not terrible. I do try to watch what I eat before bed, as I do know some foods tend to keep me awake.... sadly, chocolate being one of them!! I'll put some thought into it though, and see if there is something else that might be interfering.






imfree said:


> Violet, you could have other issues, bed, environment in the bedroom,
> food eaten before bed, etc. One night, before I was on the BiPAP, my then GF
> and I cuddled and caressed for a couple hours, fell asleep in each-other's arms, then woke up 4 hours later in the SAME position! I flailed my arms and
> legs violently in my sleep study, yet I slept the same amount of time in my
> GF's arms without moving at all! It makes me wonder.


----------



## imfree

Violet_Beauregard said:


> Thanks Edgar.... I have thought of those things.... I do like the room dark and silent, and the sound of the CPAP has been kind of annoying, but not terrible. I do try to watch what I eat before bed, as I do know some foods tend to keep me awake.... sadly, chocolate being one of them!! I'll put some thought into it though, and see if there is something else that might be interfering.


 Hahaha!!!, seriously though, as much as I would like to attribute the improved sleep to having an SSBBW bedmate and the emotional benefit therewith, It may have been better breathing that resulted from the improved support of my body, while in her arms.
The sound of the BiPAP actually helps me by masking out other sounds that could interfere with my sleep.


----------



## Miss Vickie

Violet_Beauregard said:


> More CPAP thoughts.... I know it's still early, but I swear this CPAP isn't really doing much for me. I'm still a bit tired during the day, and still tired in the evenings when I'm watching TV. I still have to fight to stay awake at 7:00. And I'm sure not springing out of bed in the mornings. These are all things that I thought would improve. I expected it almost instantly, but I know that was somewhat unrealistic. Well here I am nearly 3 weeks on this thing and I'm really not seeing too much. Is it me?? Am I still expecting big results too soon? I swear I sleep worse *because* of it... messing the the headgear and the hose..what a pain.... I *know* I wake several times to deal with that stuff. WHAT AM I DOING WRONG HERE???



Hey there,

I think maybe you are expecting too much, at least this early on. My sweetie still by no means springs out of bed, but most of the time he's far more alert than he was before the CPAP. The told him not to expect anywhere near the full benefits until 4-6 weeks after using it, since his body was so deprived of sleep for so long. So it's not surprising that you don't feel the magic yet, but even so, you're still reducing your risk of heart attack and stroke, which makes it worth it, even if nothing else changed. The data coming in seems to increasingly suggest that sleep apnea is behind a LOT of medical problems so you're prolonging your life by using the machine.

Also, do they have you on Ambien or anything to help you sleep? If not, that might be something to think about, especially if you're struggling to get/stay asleep.

Good luck, and keep on keepin' on, okay?


----------



## Violet_Beauregard

Thanks for the support, and the info. No one ever said it would take 4-6 weeks to see anything significant. I think the only thing I had to go by was my boss' experience, and he claimed to have overnight results, literally. I guess I will just have to stick with it and be patient.... 

Thanks though, I appreciate it!!!




Miss Vickie said:


> Hey there,
> 
> I think maybe you are expecting too much, at least this early on. My sweetie still by no means springs out of bed, but most of the time he's far more alert than he was before the CPAP. The told him not to expect anywhere near the full benefits until 4-6 weeks after using it, since his body was so deprived of sleep for so long. So it's not surprising that you don't feel the magic yet, but even so, you're still reducing your risk of heart attack and stroke, which makes it worth it, even if nothing else changed. The data coming in seems to increasingly suggest that sleep apnea is behind a LOT of medical problems so you're prolonging your life by using the machine.
> 
> Also, do they have you on Ambien or anything to help you sleep? If not, that might be something to think about, especially if you're struggling to get/stay asleep.
> 
> Good luck, and keep on keepin' on, okay?


----------



## Zandoz

I really think that the degree of dramatic effect of a CPAP is related a lot to just how bad off the person was in the first case...and to what degree the apnea was part of the sleep problem in the first place. The person who is near death because of apnea issues is going to see a more dramatic difference than the person who has a lesser case of apnea...And the person who has other sleep issues is going to see less dramatic change than the ones with single issues. No telling which or to what degree you fit in those categories. 

Yes, the sound is going to take a while to get used to...but in time it will be no different than sleeping in a room with a large fan or AC. 

The fiddling with the headgear is partially a "getting used to it" issue...and very likely partially a different issue all together. It sounds to me like you still have not hit on the right headgear/hose combo and set up. It may be a matter of mechanical adjustment...or it may be that you need a different setup all together.

One thing to consider...you may well need to take your issues...and maybe even your equipment...back to the sleep clinic and ask for help in making it right. My first mask and headgear were not right for me...and I tried to "tuff it out". In the end it took getting insistent with the clinic that more than enough money had been spent to justify my insistence that it be right. They finally sent someone to my house to examine the set up, and figure out the headgear that was right for me.


----------



## Violet_Beauregard

Thank you.... I do tend to agree with you about the affects being different for different levels of apnea. My case was mild. When my sleep study was done, I read the report and my oxygen level only dropped below 90% one time... to 86%. The remainder of the time my level averaged 94%. All of this is why I didn't think I needed it in the first place. 

You may be right about getting the right headgear as well. I'm a side sleeper, and using the nasal pillows is OK...I know I absolutely do not want the face mask covering my face. I think I'd feel smothered. The with the nasal pillows the hose connects to the side of the pillows. So when I sleep on that side, the hose is getting in the way. I alternate from side to side, so that is an issue. I've seen some nasal pillows with the hose going up over the head....not for me. 

I don't know.... I'm going to have to do some more searching and see if I find anything else that I think would work for me. I don't think switching would be an issue. The home health care place was very good and the woman told me to contact her if I had any issues with the machine or headgear. So hopefully if I find something else, they can take care of it.

Thank you so much for the thoughts and the suggestions. I very much appreciate it!







Zandoz said:


> I really think that the degree of dramatic effect of a CPAP is related a lot to just how bad off the person was in the first case...and to what degree the apnea was part of the sleep problem in the first place. The person who is near death because of apnea issues is going to see a more dramatic difference than the person who has a lesser case of apnea...And the person who has other sleep issues is going to see less dramatic change than the ones with single issues. No telling which or to what degree you fit in those categories.
> 
> Yes, the sound is going to take a while to get used to...but in time it will be no different than sleeping in a room with a large fan or AC.
> 
> The fiddling with the headgear is partially a "getting used to it" issue...and very likely partially a different issue all together. It sounds to me like you still have not hit on the right headgear/hose combo and set up. It may be a matter of mechanical adjustment...or it may be that you need a different setup all together.
> 
> One thing to consider...you may well need to take your issues...and maybe even your equipment...back to the sleep clinic and ask for help in making it right. My first mask and headgear were not right for me...and I tried to "tuff it out". In the end it took getting insistent with the clinic that more than enough money had been spent to justify my insistence that it be right. They finally sent someone to my house to examine the set up, and figure out the headgear that was right for me.


----------



## Miss Vickie

Violet_Beauregard said:


> Thanks for the support, and the info. No one ever said it would take 4-6 weeks to see anything significant. I think the only thing I had to go by was my boss' experience, and he claimed to have overnight results, literally. I guess I will just have to stick with it and be patient....
> 
> Thanks though, I appreciate it!!!



Yeah, it can be frustrating when people exaggerate their results. A buddy of my brother's said that he was home from the hospital in two days after a heart bypass, and playing golf the next week. Ummmmmmm, maybe miniature golf, but given the sternum guidelines, I doubt even that. But that set my brother up for feeling like a failure since his surgery took WAY longer to recover from. 

And I absolutely agree with Zandoz. If your headgear isn't working for you, take it back. It's not at ALL unusual to have to swap stuff out several times before finding the right combination.


----------



## Violet_Beauregard

Well, as Zandoz said, the results are not the same for everyone...as everyone's apnea levels are different. I feel like I sound like a whining baby about this, and I definitely have a negative attitude about it...I have from the start, but I am trying. I'll just have to keep working on it.

Thanks!!!!!





Miss Vickie said:


> Yeah, it can be frustrating when people exaggerate their results. A buddy of my brother's said that he was home from the hospital in two days after a heart bypass, and playing golf the next week. Ummmmmmm, maybe miniature golf, but given the sternum guidelines, I doubt even that. But that set my brother up for feeling like a failure since his surgery took WAY longer to recover from.
> 
> And I absolutely agree with Zandoz. If your headgear isn't working for you, take it back. It's not at ALL unusual to have to swap stuff out several times before finding the right combination.


----------



## BigBeautifulMe

Some people DO feel better that quickly. Some people (like me) also take as long as a year and a half to feel better. Some even take longer. The majority fall somewhere in between. It's a personal thing, and it depends on if you were titrated correctly and other variables, but a big part of it is how quickly you find the right mask and right setup for you. I do agree that you need to keep working til you find a mask that works for you and doesn't keep waking you up. You're really not sleeping WORSE, as unless you had less than one apnea event per hour, you were waking up MORE often with the apnea than you are now, PLUS doing physical damage. Remember that.  It is quite true that you have sleep debt to make up - just be patient with yourself, and don't give up.


----------



## Violet_Beauregard

Oh my lord, a year? Good heavens...whew, do I have a long way to go. :blink: I'll just have to put up with it and keep trying. 





BigBeautifulMe said:


> Some people DO feel better that quickly. Some people (like me) also take as long as a year and a half to feel better. Some even take longer. The majority fall somewhere in between. It's a personal thing, and it depends on if you were titrated correctly and other variables, but a big part of it is how quickly you find the right mask and right setup for you. I do agree that you need to keep working til you find a mask that works for you and doesn't keep waking you up. You're really not sleeping WORSE, as unless you had less than one apnea event per hour, you were waking up MORE often with the apnea than you are now, PLUS doing physical damage. Remember that.  It is quite true that you have sleep debt to make up - just be patient with yourself, and don't give up.


----------



## BigBeautifulMe

Like I said, most people see results much sooner than that (and you should - if you're not, there's some other problem going on. In my case, it was mistitration.)

Just don't give up.  It doesn't seem like you're going to.


----------



## MLadyJ

Violet...I just read your posts..kinda late but here is MHO. I have been on a CPAP for years. At first I had the nasal pillows and eventually quit using the machine altogether because of the nose sores. Later someone told me about the partial face mask and I've been using it ever since. The first few nights (on the new device) I had terrible headaches in the morning. I almost gave up again, but instead called the respitory folks and it turns out I had the wrong sized mask. Armed with the correct fitting mask, and properly adjusted, it works very well. I felt relief almost immediately. On the mornings I wake not feeling a whole lot better I discovered that I also had a dry mouth and throat and found out I was opening my mouth in my sleep, which kind of negates the whole function of the CPAP. Good luck..


----------



## Zandoz

Violet_Beauregard said:


> Thank you.... I do tend to agree with you about the affects being different for different levels of apnea. My case was mild. When my sleep study was done, I read the report and my oxygen level only dropped below 90% one time... to 86%. The remainder of the time my level averaged 94%. All of this is why I didn't think I needed it in the first place.
> 
> You may be right about getting the right headgear as well. I'm a side sleeper, and using the nasal pillows is OK...I know I absolutely do not want the face mask covering my face. I think I'd feel smothered. The with the nasal pillows the hose connects to the side of the pillows. So when I sleep on that side, the hose is getting in the way. I alternate from side to side, so that is an issue. I've seen some nasal pillows with the hose going up over the head....not for me.
> 
> I don't know.... I'm going to have to do some more searching and see if I find anything else that I think would work for me. I don't think switching would be an issue. The home health care place was very good and the woman told me to contact her if I had any issues with the machine or headgear. So hopefully if I find something else, they can take care of it.
> 
> Thank you so much for the thoughts and the suggestions. I very much appreciate it!



I'm a side sleeper to...and the nasal pillows are what worked for me...after being sure I had the right equipment and a bit of creativity on my part. First off, do you have a swivel between the hose and the part that actually holds the pillows? If not, you need one. My headgear is the type that the hose goes over the top of my head...but I do not use it as the manufacturer intended. 

I'm not sure how well I can explain my set up, but I'll give it a shot. As designed, there is a strap on my headgear that runs from my forehead, over the top of my head, to the back of my head...the hose is connected to that strap by two Velcro loops. The manufacturer intended that strap to be snug but not overly so to the top of the head. What worked for me was loosening that strap as much as I could. If I pull up on it, there is several inches between the top of my head and the strap. That swivel I mentioned is between the Velcro loop holding the hose closest to my forehead and the pillow holder at my nose....basically at my forehead. The pillow holder is held in place at my nose by another strap that fastens to the headgear above each ear. For me the rest of the headgear is not positioning the nasal pillows...it's not keeping the hose tight against the top of my head...it's simply keeping the hose near-by without binding. The swivel allows the movement of the hose as I turn side to side with minimal effect on the fit of the pillows. The other thing I had to do to facilitate using the CPAP/BiPAP was getting rid of the bed headboard...it interfered with the hose and therefore my ability to turn. Our bed sits several inches from the wall to keep from binding the hose as it comes over the end of the bed, over the pillow.

What it all boils down to is two things. Minimizing anything that can bind the hose, while allowing it to make connection to the point of the body that moves the least when turning side to side...the top of the head. And minimizing the effect of turning and hose positioning has on the point where the pillows meet your nose...the swivel.

BTW...you mentioned one huge factor that is inhibiting the effectiveness of the CPAP. There are reasons totally unrelated to apnea that necessitates you and I sleeping on our sides, and frequently rolling over...what ever that reason is for you, is one of, if not the "other factor" I've mentioned before. In my case, it's pinched nerves in the back that causes extreme burning sensations in my legs when laying flat and straight-legged...or in one position very long. For you I have no way of knowing. But it's a pretty safe bet that what ever it is, it's a gremlin in the works when it comes to you getting a good night's sleep.


----------



## Violet_Beauregard

Here is the mask that I have. I don't wear the hose up on the top. The CPAP sits on the right side of my bed, so the hose comes out of the right. If it were in the center, instead of the right or left, I could probably sleep on my side easier. Any suggestions after seeing the mask I use??

I'm not sure sleeping on my side is necessarily a physical issue. I've always slept on my side. As a matter of fact, if I lay on one side too long, my hip goes numb...sometimes. That's part of the reason I switch sides sometimes.


----------



## imfree

Hi Violet, I like my Respironics Comfort Gel. The hose fitting swivels.


----------



## Violet_Beauregard

Boy Edgar, I don't think I'd like the whole thing over my nose and mouth. I think I'd feel kinda of smothered. You are used to it though.





imfree said:


> Hi Violet, I like my Respironics Comfort Gel. The hose fitting swivels.


----------



## imfree

I've used both, but this one is a nose-only model.


----------



## Violet_Beauregard

Ah... I think my boss has the nose and mouth model.... he's a mouth breather though......





imfree said:


> I've used both, but this one is a nose-only model.


----------



## BigBeautifulMe

Hi Violet. If you hang the hose up at the center point of where you sleep, that will keep it to the center of where you're sleeping, and out of your way. I posted a bit on how to hang the hose up here: http://www.dimensionsmagazine.com/forums/showpost.php?p=363738&postcount=25

If you have any questions about that, feel free to ask.


----------



## Zandoz

Violet_Beauregard said:


> Here is the mask that I have. I don't wear the hose up on the top. The CPAP sits on the right side of my bed, so the hose comes out of the right. If it were in the center, instead of the right or left, I could probably sleep on my side easier. Any suggestions after seeing the mask I use??
> 
> I'm not sure sleeping on my side is necessarily a physical issue. I've always slept on my side. As a matter of fact, if I lay on one side too long, my hip goes numb...sometimes. That's part of the reason I switch sides sometimes.



Being a "side sleeper", the unit you have would drive me nuts. With the hose positioned as in the first pic I'd constantly be tangled in it...like the second it would be constantly pushed out of position by the pillow when sleeping on the side with the hose.

I've attached a pic of the kind of setup I have. No interference no matter which side I sleep on. 

View attachment headgear.jpg


----------



## Violet_Beauregard

I don't know what I'm going to do. I'm about to toss it out the window! LOL I may put the CPAP above my headboard. My bed is under the window and there's a large shelf under the window sill. Perfect place for the CPAP. I may put it there and have the hose going above me. That might help.

Thanks!!





BigBeautifulMe said:


> Hi Violet. If you hang the hose up at the center point of where you sleep, that will keep it to the center of where you're sleeping, and out of your way. I posted a bit on how to hang the hose up here: http://www.dimensionsmagazine.com/forums/showpost.php?p=363738&postcount=25
> 
> If you have any questions about that, feel free to ask.


----------



## Violet_Beauregard

I don't know.... I think having that hose right in front of my eyes would bug me.... even though they'd be closed! LOL.... 




Zandoz said:


> Being a "side sleeper", the unit you have would drive me nuts. With the hose positioned as in the first pic I'd constantly be tangled in it...like the second it would be constantly pushed out of position by the pillow when sleeping on the side with the hose.
> 
> I've attached a pic of the kind of setup I have. No interference no matter which side I sleep on.


----------



## Ho Ho Tai

Zandoz said:


> Being a "side sleeper", the unit you have would drive me nuts. With the hose positioned as in the first pic I'd constantly be tangled in it...like the second it would be constantly pushed out of position by the pillow when sleeping on the side with the hose.
> 
> I've attached a pic of the kind of setup I have. No interference no matter which side I sleep on.



My wife (Mrs Ho Ho) has used one like yours successfully for over four years. She feeds the hose down from above her with a clamp, and sleeps on her back. This has been quite successful, and is quiet enough not to interfere with my sleep.

However, if it gets a bit out of position, it sounds like this:





Sorry - couldn't resist.


----------



## imfree

Ho Ho Tai said:


> My wife (Mrs Ho Ho) has used one like yours successfully for over four years. She feeds the hose down from above her with a clamp, and sleeps on her back. This has been quite successful, and is quiet enough not to interfere with my sleep.
> 
> However, if it gets a bit out of position, it sounds like this:
> 
> 
> 
> 
> Sorry - couldn't resist.


 Hahaha!!!, I couldn't resis, either! 

"Don't be so proud of this technological terror you have 
constructed, the ability to destroy a planet is insignifigant, next 
to the power of the fowace!"
Darth Vader, Star Wars, 1977


----------



## Violet_Beauregard

Ok... THAT is funny..... and so TRUE!!!!






Ho Ho Tai said:


> My wife (Mrs Ho Ho) has used one like yours successfully for over four years. She feeds the hose down from above her with a clamp, and sleeps on her back. This has been quite successful, and is quiet enough not to interfere with my sleep.
> 
> However, if it gets a bit out of position, it sounds like this:
> 
> 
> 
> 
> Sorry - couldn't resist.


----------



## Violet_Beauregard

I've been watching all 6 star wars movies over the last few weeks..... it seems like that's all that is on the HBO's...... my CPAP DOES sound like Darth Vader!!!!!

LOLOLOL






imfree said:


> Hahaha!!!, I couldn't resis, either!
> 
> "Don't be so proud of this technological terror you have
> constructed, the ability to destroy a planet is insignifigant, next
> to the power of the fowace!"
> Darth Vader, Star Wars, 1977


----------



## imfree

Violet_Beauregard said:


> I've been watching all 6 star wars movies over the last few weeks..... it seems like that's all that is on the HBO's...... my CPAP DOES sound like Darth Vader!!!!!
> 
> LOLOLOL


 Hahaha!!!, you should see video of me doing Darth Vader in a mask!
I mic the hose for an echo-effect and mic the oxygen concentrator for
the machinery sounds.


----------



## Violet_Beauregard

No, not yet. Other than the soreness around the bottom edge of my nose, the inside hasn't been bad at all.





missaf said:


> Violet, do you have the humidifier for your CPAP yet?


----------



## Zandoz

Violet_Beauregard said:


> I don't know.... I think having that hose right in front of my eyes would bug me.... even though they'd be closed! LOL....



Actually, it's not that intrusive...kinda like the bridge of glasses...it's so close to your face that unless looking cross-eyed it's not noticed it that much. It definately does not make a fashion statement...except maybe at Halloween...LOL...but it is effective at minimizing hose interferance for side sleeping.


----------



## Zandoz

Ho Ho Tai said:


> My wife (Mrs Ho Ho) has used one like yours successfully for over four years. She feeds the hose down from above her with a clamp, and sleeps on her back. This has been quite successful, and is quiet enough not to interfere with my sleep.
> 
> However, if it gets a bit out of position, it sounds like this:
> 
> 
> 
> 
> 
> Sorry - couldn't resist.



No need for sorry...you're right on with that analogy...LOL


----------



## Violet_Beauregard

Hmmmm, definitely something to consider then.....




Zandoz said:


> Actually, it's not that intrusive...kinda like the bridge of glasses...it's so close to your face that unless looking cross-eyed it's not noticed it that much. It definately does not make a fashion statement...except maybe at Halloween...LOL...but it is effective at minimizing hose interferance for side sleeping.


----------



## Violet_Beauregard

Well, I have continued to wear the CPAP, though I still don't think it's doing any good, and if anything, it's keeping me up at night. Friday night I got so frustrated I took it off in the middle of the night and went back to sleep, and slept thru the night. Saturday night I didn't wear it at all, and had the best night's sleep I've had in weeks. Last night I wore it until nearly dawn. I don't know what I'm going to do tonight. I haven't made up my mind yet. I think it will depend on how I feel when I head to bed. I'm considering a different locale for my machine itself. Above me on a shelf under my window. It might be better for hose management. 

I know, I know....you're all annoyed...  ... I haven't given up yet...I'm just adjusting and working this out as best I can. I've had a stressful week...several things causing me grief, and I'm trying to stick with using the CPAP. I just need to get things straightened around. I hope that makes sense and you all understand.  

Feel free to give encouragement, kudos, support, praise.... LOLOL... just kidding....  Thanks for all the kind words so far....it is truly appreciated.


----------



## imfree

Violet_Beauregard said:


> Well, I have continued to wear the CPAP, though I still don't think it's doing any good, and if anything, it's keeping me up at night. Friday night I got so frustrated I took it off in the middle of the night and went back to sleep, and slept thru the night. Saturday night I didn't wear it at all, and had the best night's sleep I've had in weeks. Last night I wore it until nearly dawn. I don't know what I'm going to do tonight. I haven't made up my mind yet. I think it will depend on how I feel when I head to bed. I'm considering a different locale for my machine itself. Above me on a shelf under my window. It might be better for hose management.
> 
> I know, I know....you're all annoyed...  ... I haven't given up yet...I'm just adjusting and working this out as best I can. I've had a stressful week...several things causing me grief, and I'm trying to stick with using the CPAP. I just need to get things straightened around. I hope that makes sense and you all understand.
> 
> Feel free to give encouragement, kudos, support, praise.... LOLOL... just kidding....  Thanks for all the kind words so far....it is truly appreciated.



You can count on me. Be kind to that adorable bod of yours,
"it's the most wonderful instrument you'll ever own" (Baz Lurman-Sunscreen)
HUGGZZ, Edgar


----------



## Violet_Beauregard

Thanks Edgar..... I really do appreciate it....

Vi




imfree said:


> You can count on me. Be kind to that adorable bod of yours,
> "it's the most wonderful instrument you'll ever own" (Baz Lurman-Sunscreen)
> HUGGZZ, Edgar


----------



## Ho Ho Tai

Violet_Beauregard said:


> Well, I have continued to wear the CPAP, though I still don't think it's doing any good, and if anything, it's keeping me up at night. Friday night I got so frustrated I took it off in the middle of the night and went back to sleep, and slept thru the night. Saturday night I didn't wear it at all, and had the best night's sleep I've had in weeks. Last night I wore it until nearly dawn. I don't know what I'm going to do tonight. I haven't made up my mind yet. I think it will depend on how I feel when I head to bed. I'm considering a different locale for my machine itself. Above me on a shelf under my window. It might be better for hose management.



Violet - I see one thing in your statement, above, that sends up a warning flag. We use a bookcase as a headboard. The top shelf might be ideal for a CPAP, except for the chance of pulling it on top your head in the middle of the night, should you be tossing and turning with the mask and hose connected. My wife places hers on a nightstand, lower than her head, but runs the hose up through a clamp to a position about 8" above her head. This works very well. 

There are still several other conditions which can be troublesome, and of which you may already be aware. The first is called 'rainout' and refers to condensation in the hose, between the humidifier and the mask. The extend depends on both room temperature and humidity, and the temperature setting on the humidifier. If there is a 'saddle point' in the hose, i.e., an intermediate low point between humidifier and mask, the moisture will collect there and gurgle away. At first, I was concerned that Mrs Ho Ho would collect fluid in her lungs all night long, a few drops at at time, and drown in slow motion. There do not seem to be any recorded instances of this happening. 

The other condition is aphasia, in which excess air pressure results in a portion being forced into the esophagus and causing distension in the abdomen. Rather like overindulging in the church social baked beans. The distension can be quite uncomfortable, and not that easy to get rid of. If you need to get up in the morning and out to the job, you really want to avoid this. Mrs Ho Ho tells me that it is worst if she happens to turn on her side (she normally sleeps on her back.) If it happens consistently, you may need to have the delivery pressure adjusted.

One other suggestion: if your health provider and insurance permits, you may be able to get a finger-clip oxygen saturation monitor. If attached to a recording device (such as a Holter monitor) you could compare the peaks and valleys with and without the mask. If all is working as it should, it may give you a bit more confidence and persistence in using the equipment. 

Good luck.


----------



## Violet_Beauregard

Thanks for the info Ho Ho. The shelf above my headboard is about an inch lower than my headboard, so there would at least be a little bit of something to keep it from falling on my head. I've had it on my nightstand, but I was hoping to get it out of the way. 

On the other points, I don't have a humidifier yet. So far, the dryness hasn't been too bad. If I stick with the machine, I may end up getting the humidifier eventually.

As far as the aphasia, my air pressure is quite low, only a 7, so I don't think it will be too bad, but I'll definitely keep an eye on it.

Thanks so much for the info... I really appreciate it! I'm trying very hard to get used to this machine. My case of apnea was very, very mild, and honestly, I'm surprised my doctor recommended the machine. But, I'll see how it goes.

Thanks again!






Ho Ho Tai said:


> Violet - I see one thing in your statement, above, that sends up a warning flag. We use a bookcase as a headboard. The top shelf might be ideal for a CPAP, except for the chance of pulling it on top your head in the middle of the night, should you be tossing and turning with the mask and hose connected. My wife places hers on a nightstand, lower than her head, but runs the hose up through a clamp to a position about 8" above her head. This works very well.
> 
> There are still several other conditions which can be troublesome, and of which you may already be aware. The first is called 'rainout' and refers to condensation in the hose, between the humidifier and the mask. The extend depends on both room temperature and humidity, and the temperature setting on the humidifier. If there is a 'saddle point' in the hose, i.e., an intermediate low point between humidifier and mask, the moisture will collect there and gurgle away. At first, I was concerned that Mrs Ho Ho would collect fluid in her lungs all night long, a few drops at at time, and drown in slow motion. There do not seem to be any recorded instances of this happening.
> 
> The other condition is aphasia, in which excess air pressure results in a portion being forced into the esophagus and causing distension in the abdomen. Rather like overindulging in the church social baked beans. The distension can be quite uncomfortable, and not that easy to get rid of. If you need to get up in the morning and out to the job, you really want to avoid this. Mrs Ho Ho tells me that it is worst if she happens to turn on her side (she normally sleeps on her back.) If it happens consistently, you may need to have the delivery pressure adjusted.
> 
> One other suggestion: if your health provider and insurance permits, you may be able to get a finger-clip oxygen saturation monitor. If attached to a recording device (such as a Holter monitor) you could compare the peaks and valleys with and without the mask. If all is working as it should, it may give you a bit more confidence and persistence in using the equipment.
> 
> Good luck.


----------



## LillyBBBW

I've been enjoying reading your posts and expereinces with CPAP but now *I'M* beginning to get a little concerned. Surely I don't know enough about anything to be too critical but it has been quite a while now and you've still found no improvement. Seems it's making your sleep worse. I'm thinking maybe you need another machine or to work something out with your doctor and make sure your levels(?) are at the right number. Enough time as passed so that I hate to think you have to sit about and tolerate discomfort any longer than you have to. You never know just how bad you feel until you start feeling good. It's time for you to find out just how bad you feel.  Time to start feeling good cutie.




Violet_Beauregard said:


> Well, I have continued to wear the CPAP, though I still don't think it's doing any good, and if anything, it's keeping me up at night. Friday night I got so frustrated I took it off in the middle of the night and went back to sleep, and slept thru the night. Saturday night I didn't wear it at all, and had the best night's sleep I've had in weeks. Last night I wore it until nearly dawn. I don't know what I'm going to do tonight. I haven't made up my mind yet. I think it will depend on how I feel when I head to bed. I'm considering a different locale for my machine itself. Above me on a shelf under my window. It might be better for hose management.
> 
> I know, I know....you're all annoyed...  ... I haven't given up yet...I'm just adjusting and working this out as best I can. I've had a stressful week...several things causing me grief, and I'm trying to stick with using the CPAP. I just need to get things straightened around. I hope that makes sense and you all understand.
> 
> Feel free to give encouragement, kudos, support, praise.... LOLOL... just kidding....  Thanks for all the kind words so far....it is truly appreciated.


----------



## Zandoz

Violet_Beauregard said:


> I know, I know....you're all annoyed...  ... I haven't given up yet...I'm just adjusting and working this out as best I can. I've had a stressful week...several things causing me grief, and I'm trying to stick with using the CPAP. I just need to get things straightened around. I hope that makes sense and you all understand.
> 
> Feel free to give encouragement, kudos, support, praise.... LOLOL... just kidding....  Thanks for all the kind words so far....it is truly appreciated.



Certainly not annoyed...just want to help any way I can. In the end, you have to do what works for you, regardless of anyone's opinions or experiences. For now, the best advice that comes to mind is to tell you to get back with the folks that got you the machine, and let them know your experience thus far. {{{{Violet}}}}


----------



## Violet_Beauregard

Lilly thank you so much! My original complaint to my doctor was fatigue, all the time. I was literally falling asleep at work, and in the chair at home while watching TV in the early evening. She insisted I get the sleep study, which I did. As I said, my apnea was diagnosed as very mild. I tried to explain to my doctor that I didn't think this was my problem. But, I didn't spend 8 years in medical school, she did. So, I thought I would try the CPAP. Honestly since my apnea was so mild I would have thought that the CPAP would have taken care of the fatigue fairly quickly. Maybe not overnight, but at least by now. I still do not think the problem was apnea. I'm going to try and stick with the machine until my next doctor's appointment, which is April. I want to give it it's just due and make an honest effort. I want to feel good too! Since my first complaints of fatigue and the initial sleep study, which was last fall, my fatigue has gotten better, but not because of the CPAP. 

Sooo, thank you so much for your kind words of encouragement.... I'm hoping to get to the bottom of this yet still!! 





LillyBBBW said:


> I've been enjoying reading your posts and expereinces with CPAP but now *I'M* beginning to get a little concerned. Surely I don't know enough about anything to be too critical but it has been quite a while now and you've still found no improvement. Seems it's making your sleep worse. I'm thinking maybe you need another machine or to work something out with your doctor and make sure your levels(?) are at the right number. Enough time as passed so that I hate to think you have to sit about and tolerate discomfort any longer than you have to. You never know just how bad you feel until you start feeling good. It's time for you to find out just how bad you feel.  Time to start feeling good cutie.


----------



## Violet_Beauregard

Thanks Zandoz..... I do appreciate it. As I told Lilly, I am going to stick with the machine until my next doctor's appointment in April. I want to give it an honest and thorough effort. I do thank you for all the info and advice though... it has been VERY helpful. It really makes a difference getting info and advice from people like you, Edgar and BBMe who are CPAP/BiPAP users. You all speak from experience, which is so helpful. 

I'll keep giving updates.... who knows, I may end up writing a book about it!! 





Zandoz said:


> Certainly not annoyed...just want to help any way I can. In the end, you have to do what works for you, regardless of anyone's opinions or experiences. For now, the best advice that comes to mind is to tell you to get back with the folks that got you the machine, and let them know your experience thus far. {{{{Violet}}}}


----------



## Ho Ho Tai

Violet_Beauregard said:


> . . . . My original complaint to my doctor was fatigue, all the time. I was literally falling asleep at work, and in the chair at home while watching TV in the early evening. She insisted I get the sleep study, which I did. . . .



Violet -

Re-reading the history of your experience, I think that (IMHO) the doctor's suggestion for an apnea study was very appropriate. However, I have to ask if she tested for, and ruled out, other factors which can cause similar symptoms. I'm thinking things like oxygen transport, hemoglobin, thyroid issues - possibly even mononucleosis. And that doesn't exhaust the possibilities - in fact, "exhaust" could even be one of them. If you have chronic exposure to low levels of carbon monoxide - say, from improper combustion in a household appliance (along with inadequate venting), a leaky muffler, or a lot of time spent in heavy traffic - the gas can bind with your hemoglobin more persistently than oxygen, and thus interferes with oxygen transport. In larger doses, this is how the gas kills. In small, incremental ones, it can produce symptoms superficially similar to what you describe.

But I'm not a doctor. I don't even play one on TV.


----------



## imfree

Ho Ho Tai said:


> Violet -
> 
> Re-reading the history of your experience, I think that (IMHO) the doctor's suggestion for an apnea study was very appropriate. However, I have to ask if she tested for, and ruled out, other factors which can cause similar symptoms. I'm thinking things like oxygen transport, hemoglobin, thyroid issues - possibly even mononucleosis. And that doesn't exhaust the possibilities - in fact, "exhaust" could even be one of them. If you have chronic exposure to low levels of carbon monoxide - say, from improper combustion in a household appliance (along with inadequate venting), a leaky muffler, or a lot of time spent in heavy traffic - the gas can bind with your hemoglobin more persistently than oxygen, and thus interferes with oxygen transport. In larger doses, this is how the gas kills. In small, incremental ones, it can produce symptoms superficially similar to what you describe.
> 
> But I'm not a doctor. I don't even play one on TV.


 I had a gas furnace with a cracked heat-exchanger. Fortunately, I caught it in time and replaced that furnace before it hurt us.Have gas 
appliances inspected yearly.


----------



## Violet_Beauregard

Well, I do have a thyroid problem, but I've been treated for that for about 15 years. Other than that, she didn't really "test" for anything else. We went thru a battery of questions. As far as the other issues (venting, gas, carbon monoxide), I don't think they're the problem, but I'll check into them.

Thanks!!




Ho Ho Tai said:


> Violet -
> 
> Re-reading the history of your experience, I think that (IMHO) the doctor's suggestion for an apnea study was very appropriate. However, I have to ask if she tested for, and ruled out, other factors which can cause similar symptoms. I'm thinking things like oxygen transport, hemoglobin, thyroid issues - possibly even mononucleosis. And that doesn't exhaust the possibilities - in fact, "exhaust" could even be one of them. If you have chronic exposure to low levels of carbon monoxide - say, from improper combustion in a household appliance (along with inadequate venting), a leaky muffler, or a lot of time spent in heavy traffic - the gas can bind with your hemoglobin more persistently than oxygen, and thus interferes with oxygen transport. In larger doses, this is how the gas kills. In small, incremental ones, it can produce symptoms superficially similar to what you describe.
> 
> But I'm not a doctor. I don't even play one on TV.


----------



## Violet_Beauregard

Well, I've continued with the CPAP for the last week and my results have been primarily the same. BUT, I did try something a little different last night. I tried an over the counter sleep aid (Tylenol PM and Tylenol Simply Sleep). I've had a monster headache for the last week or so, strictly stress related, so I took two Tylenol PMs last night and wore the mask, and I slept like a dream. It woke right up this morning and felt great all day. So, perhaps it's a matter of the extra help of the sleeping pill in combination with the CPAP.

BBMe, do you have any info on that? I think previously you asked me if my Dr. precribed Ambien. Zandoz, do you take anything like that, or know of anyone who does? Edgar, what about you??


----------



## imfree

Violet_Beauregard said:


> Well, I do have a thyroid problem, but I've been treated for that for about 15 years.  Other than that, she didn't really "test" for anything else. We went thru a battery of questions. As far as the other issues (venting, gas, carbon monoxide), I don't think they're the problem, but I'll check into them.
> 
> Thanks!!


 Just be careful and take good care of yourself. Your cuteness
deserves to be around for a long time.


----------



## Violet_Beauregard

Thanks Edgar.... I'm sure trying!!! 

You are just to good to me!





imfree said:


> Just be careful and take good care of yourself. Your cuteness
> deserves to be around for a long time.


----------



## BigBeautifulMe

Well, I know that sleep doctors often prescribe sleep meds when a patient first starts CPAP to help them adjust to it. But if you're not feeling better after all this time (after you really do seem to have adjusted to it), that COULD very well indicate that there's something else going on with your treatment. If it's a comfort issue (how the mask feels, etc) that's something you just have to keep tweaking til you get it right.  But if you're sleeping adequate hours, and still not feeling rested, I would definitely be checking with your doc.  Just my two cents.


----------



## Violet_Beauregard

Hmmmm.... well, I'm going to keep wearing the CPAP and maybe take the sleep aid a couple of times a week when I need it. I go back to the doc in about a month, so I'll see what she says then. As far as the comfort, I'm pretty much OK with it. It's a pain in the butt and I still hate the thing, but it's livable. I think more than anything, I'm just questioning whether it's doing anything for me. But, like I said, I'm trying to give it a fair chance before I completely throw in the towel.

Thanks for the info!!





BigBeautifulMe said:


> Well, I know that sleep doctors often prescribe sleep meds when a patient first starts CPAP to help them adjust to it. But if you're not feeling better after all this time (after you really do seem to have adjusted to it), that COULD very well indicate that there's something else going on with your treatment. If it's a comfort issue (how the mask feels, etc) that's something you just have to keep tweaking til you get it right.  But if you're sleeping adequate hours, and still not feeling rested, I would definitely be checking with your doc.  Just my two cents.


----------



## Zandoz

Violet_Beauregard said:


> Well, I've continued with the CPAP for the last week and my results have been primarily the same. BUT, I did try something a little different last night. I tried an over the counter sleep aid (Tylenol PM and Tylenol Simply Sleep). I've had a monster headache for the last week or so, strictly stress related, so I took two Tylenol PMs last night and wore the mask, and I slept like a dream. It woke right up this morning and felt great all day. So, perhaps it's a matter of the extra help of the sleeping pill in combination with the CPAP.
> 
> BBMe, do you have any info on that? I think previously you asked me if my Dr. precribed Ambien. Zandoz, do you take anything like that, or know of anyone who does? Edgar, what about you??



I take Tylenol's multi-symptom night time sinus med...the night time part of it is coincidental but effective...my main reason for taking it is the sinus part. When I lay down, within seconds my sinuses will stuff up, making breathing through my nose difficult to impossible without the meds. Another one of those "other issues" that have been alluded to.


----------



## Zandoz

I had a reminder night before last of just how much "externals" can effect sleeping with a CPAP/BiPAP. We went to see my adopted daughter graduate from nursing school, and had to spend a night in a hotel. My normally "works like a dream" setup was totally wrong for the bed/pillow/nightstand/headboard setup there. I was fighting my hoses, mask & headgear all night.


----------



## VictoriaLeigh

I noticed this thread and thought you experienced folks might have some ideas. About 3 months ago I did the sleep study thing and thay said instead of multiple short apneas I have only a couple really long one where my oxygen drops below 70 for over an hour each time. Anyone else have this? I new there was a reason why at 25 my energy was nil but had no clue. Also because my insurance bites, they won't cover the obnoxious CPAP anyway. And even if they did I'm one of those sleep with my mouth open types who needs a full mask, they want it up on 10, and I can barely sleep with anything on me(even a bandaid makes me nutz....lol) HELP


----------



## BigBeautifulMe

Victoria, if your oxygen is dropping that low for that long, that is doing SERIOUS damage to your body (really. That's QUITE bad). You of all people REALLY, really need a CPAP. Don't give up on it. I've never heard of anyone's insurance NOT covering a CPAP before - are you positive about that? I'm close to your age (28) and I've learned to live with it, and it has made my life SO much better. Just do it. If you truly do have to buy it out of pocket, buy it online, and not from a local place. MUCH cheaper. I like cpap.com myself. Full face masks are not that bad, as long as you find one that works well for you. If you can't, there's always the option of using a nasal mask and taping your mouth (which sounds scary, but works really well). You get used to it, it just takes some adjustment, and tweaking. But seriously, do it - otherwise, you're damaging your body every time you sleep (heart, lungs, brain, etc), and greatly increasing your risk of stroke, heart attack, etc. The longer you go without CPAP, the worse things are going to get for you in regards to side effects of untreated apnea. Don't let that happen.

Again, for everyone starting out with CPAP, cpaptalk.com is a truly great resource (it's a forum for users with LOTS of experienced users on it).


----------



## Violet_Beauregard

I'd follow up with your insurance company...put in an appeal from your doctor. That should help. Also, if you apnea is that bad, you really should wear the mask and use the machine. Believe me, I hate mine too, but I'm still working with it. You may have to learn to live with it, in order to save your life. BBMe can give you some GREAT advice... she knows a lot about CPAP.... she'll be a huge help to you!!






VictoriaLeigh said:


> I noticed this thread and thought you experienced folks might have some ideas. About 3 months ago I did the sleep study thing and thay said instead of multiple short apneas I have only a couple really long one where my oxygen drops below 70 for over an hour each time. Anyone else have this? I new there was a reason why at 25 my energy was nil but had no clue. Also because my insurance bites, they won't cover the obnoxious CPAP anyway. And even if they did I'm one of those sleep with my mouth open types who needs a full mask, they want it up on 10, and I can barely sleep with anything on me(even a bandaid makes me nutz....lol) HELP


----------



## VictoriaLeigh

The dr is working on the appeal now, the problem with the insurance is they cover people who havean average 5 or more apneas a night, and since i have what the dr averaged at 3.5 they're giving me trouble. Figures they don't have a clause for how long your apneas are Why does everything have to be so damned difficult? Do any of you know what (other than weight loss) can help with this sleep apnea stuff? Thanks for your help so far


----------



## Zandoz

VictoriaLeigh said:


> The dr is working on the appeal now, the problem with the insurance is they cover people who havean average 5 or more apneas a night, and since i have what the dr averaged at 3.5 they're giving me trouble. Figures they don't have a clause for how long your apneas are Why does everything have to be so damned difficult? Do any of you know what (other than weight loss) can help with this sleep apnea stuff? Thanks for your help so far



In my early stages, elevating the head end of the bed helped. 

By the time I got done fighting my insurance company and got my first sleep test, the longest I would remain asleep was 113 seconds...that works out to 254 incidents in an 8 hour night. If you met the 5 criteria, they'd likely cook up some other tailor made rule to keep from paying out.


----------



## VictoriaLeigh

Zandoz said:


> In my early stages, elevating the head end of the bed helped.
> 
> By the time I got done fighting my insurance company and got my first sleep test, the longest I would remain asleep was 113 seconds...that works out to 254 incidents in an 8 hour night. If you met the 5 criteria, they'd likely cook up some other tailor made rule to keep from paying out.



Thanks i'll give that a shot not sure how yet but I'll figured somethin out  And yeah you're probably right, anything to save them money and cause me crap.


----------



## LillyBBBW

How are things going now Violet? I have my initial sleep disorder consultation appointment today! We'll see what happens.


----------



## imfree

LillyBBBW said:


> How are things going now Violet? I have my initial sleep disorder consultation appointment today! We'll see what happens.


 I've noticed, myself, how dead this thread has been. Are you still using your CPAP, Violet, and how are things going. HUGGZZ, Edgar


----------



## LillyBBBW

Well, aside from me and imfree it doesn't look like anybody gives a crap about this thread anymore.  But for what it's worth I had my consultation today and after being interviewed and examined by two separate people almost immediately both the interviewers ascertained that I had sleep apnea. So now I go back on the 19th of April for the actual sleep study to see how bad it is, but the doctor was talking about a bipap and not a cpap for me. Who knows?

Interestingly enough, I asked them about the auto cpap and she said that those tend to read too low and supply not enough pressure for people. Anyway, I don't get this vibe that they are just making up a disorder so they can give me unnecessary treatment and fleece the system. This is generally a great hospital with a fairly low quack record so we'll see.


----------



## Violet_Beauregard

Sorry all! I was cramming for finals and this poor little thread got sidetracked!! 



LillyBBBW said:


> How are things going now Violet? I have my initial sleep disorder consultation appointment today! We'll see what happens.





imfree said:


> I've noticed, myself, how dead this thread has been. Are you still using your CPAP, Violet, and how are things going. HUGGZZ, Edgar




I'm still using the CPAP and it's basically the same. I'm definitely used to it now and my nose isn't nearly as sore. I still fight the hose and wake up several times in the night as I turn over (I'm a side sleeper), so I really wonder about its value as far as that, but I think I'm getting more used to it. I try not to allow myself to completely wake up when that happens. My energy level is....eh..... about the same...no real great energy surge. But as BBWMe has pointed out, it may still take some time for that to come up. I believe she said it took almost a year for her total results to appear...so, I'm attempting to be very patient (thought patience is NOT one of MY virtues...LOL) 

Lilly I am SO glad you went for the consultation and are going to have the sleep test. It could really make a difference for you..your apnea may be more severe than mine. Edgar uses a BiPAP, he may be able to tell you more about it, as opposed to the CPAP. Or even BBWMe....she's very well versed on the whole topic. My apnea is very mild, so me seeing results could take a while I think. At least that's what I've gathered. 

 Thanks all for being patient with me, and I promise to keep the thread alive!! 

Vi





LillyBBBW said:


> Well, aside from me and imfree it doesn't look like anybody gives a crap about this thread anymore.  But for what it's worth I had my consultation today and after being interviewed and examined by two separate people almost immediately both the interviewers ascertained that I had sleep apnea. So now I go back on the 19th of April for the actual sleep study to see how bad it is, but the doctor was talking about a bipap and not a cpap for me. Who knows?
> 
> Interestingly enough, I asked them about the auto cpap and she said that those tend to read too low and supply not enough pressure for people. Anyway, I don't get this vibe that they are just making up a disorder so they can give me unnecessary treatment and fleece the system. This is generally a great hospital with a fairly low quack record so we'll see.


----------



## BigBeautifulMe

Lilly, a lot of doctors still don't know much about how auto cpaps work nowadays. They base their opinions on how autos worked when they first came out - and they're totally different machines now. What she said is just not true anymore - and hasn't been since the early 90's. Most people DO get treated just fine with just plain CPAP - but since an auto can be set to function in straight CPAP mode, too, there's no harm in having one, and only using the auto mode when you think your pressure needs might have changed. That being said, it sometimes is challenging to get DMEs to supply them, and ins.companies to pay for them, even with the doc's RX. I was lucky - it was easy for me, because my ins. co. rented my CPAP, and so five months into it when I wanted to trade it out for an auto, it was no problem. I got my doc's RX, and there was no hassle at all. 

Whatever you decide, learn all you can about apnea. It's important to do your own homework, as doctors and RTs in this area are woefully underinformed. (My RT at my DME never even told me there was more than one kind of mask - much less that there were DOZENS of different kinds out there). Good luck with your sleep study - let us know how it goes.

Violet - have you hung the hose up yet? That really helps eliminate fighting with the hose when you're tossing and turning.  Glad you're getting used to things.


----------



## Violet_Beauregard

I have hung it, and it has helped. I put the whole machine on this shelf above and slightly behind my headboard. The head board is a couple of inches higher than the front of the shelf, to prevent it from being pulled onto my head. Doing that, and having the hose coming from above me like that helped out a lot. I think the problem is that I'm a side sleeper, but I'm adapting.







BigBeautifulMe said:


> Violet - have you hung the hose up yet? That really helps eliminate fighting with the hose when you're tossing and turning.  Glad you're getting used to things.


----------



## LillyBBBW

The people I saw told me that the machine should be returned if you don't notice any results after about a month. I bought a brand new mobile telephone and had to return it just days after opening because it wouldn't work. Everyone could hear me on it fine but I could hear nothing but dead plastic. If your machine were faulty or malfunctioning you would have no way of knowing. I don't want to bully you as obviously you must do what's best. But I would seriously consider going back to your doctor and seeing about getting your machine replaced. It may be a manufacturers error and have nothing to do with you.


----------



## Zandoz

LillyBBBW said:


> Well, aside from me and imfree it doesn't look like anybody gives a crap about this thread anymore.  But for what it's worth I had my consultation today and after being interviewed and examined by two separate people almost immediately both the interviewers ascertained that I had sleep apnea. So now I go back on the 19th of April for the actual sleep study to see how bad it is, but the doctor was talking about a bipap and not a cpap for me. Who knows?
> 
> Interestingly enough, I asked them about the auto cpap and she said that those tend to read too low and supply not enough pressure for people. Anyway, I don't get this vibe that they are just making up a disorder so they can give me unnecessary treatment and fleece the system. This is generally a great hospital with a fairly low quack record so we'll see.



I'm kind of surprised that they are proposing a BiPAP before even doing a sleep study. As far as I know, the pressure required is not something they can tell reliably by visual examination....it takes trying different pressure levels to find what works for an individual. <shrug>


----------



## BigBeautifulMe

Zandoz, a BiPap is also often prescribed right off the bat for people with pre-existing lung conditions (like asthma) because its primary purpose is to help in exhalation. If they had reason to believe Lilly was going to have problems exhaling against the pressure, I could see them thinking she'd need one. But as strong as Lilly's respiratory equipment must be, given that she's an opera singer, I kind of doubt that.  I don't know, though - I was trained as an opera singer for a while, and I still had problems exhaling against the pressure. But I was never a pro like Lilly. 

Also, a BiPapST (a timed bipap device) would be prescribed for someone with Central Apnea, rather than obstructive. If they had reason to believe her apnea was central in nature, that would be another reason to be leaning towards a BiPap already. 

I'm still wondering what their line of reasoning is - but in all honesty, BiPaps are very nice machines, and there's absolutely no harm in Lilly having one, even if she doesn't truly "need" one (as long as her insurance is picking up the tab, that is, as they are definitely more costly). 

Lilly, I doubt that Violet's machine is defective. In two years on a CPAP message board, I've seen lots of people return their machines to their DMEs thinking they were "defective" because they weren't feeling better after a month. Every one of those machines worked properly. That's not to say it COULDN'T happen - just that it's a rarity. Vi, it wouldn't hurt to take it back to them and let them check it out, as Lilly said. 

But the vast majority of people not feeling better after a month usually either have one of four things going on: mouth-breathing (which negates therapy), an uncomfortable mask they just aren't sleeping well with, having the wrong pressure prescribed, or just having a lot of sleep debt they need to make up for. Sometimes it's a combination of more than one thing. If my insurance were renting my machine (I can't remember if yours is, Vi) I would talk to my doctor and tell him I wasn't feeling better, and ask him to RX me a machine with data capabilities so that we could both make sure the prescribed pressure was working for me. If your doctor is not up to date on his knowledge and is very anti-auto, and you don't want to fight him/her on it, you can always ask for either a (Respironics) Remstar Pro2 (pre-M Series) or a (Respironics) Remstar M-Series Pro. Both of these machines provide straight CPAP (NOT Auto), but also provide full data (meaning you can see how many apneas you're having per night, if you're mouth breathing, if excessive leaks are interfering with treatment, etc). 

If you want to give it some time, that's fine, but just make sure you don't wait too long to talk to your doc - insurance companies often rent-to-own machines (mine did) - so after a while, they buy it outright. Mine took more than six months to do that, but just in case - better to talk to the doc and insurance company sooner rather than later. Also, there are lots of side sleepers out there who do perfectly well with CPAP. So if you just can't keep this mask from leaking or get comfortable with it when you're on your side, it's probably time to look at different masks. You've already given it quite a good chance to work for you. 

Good luck, Violet. We're all pulling for you.


----------



## LillyBBBW

Zandoz said:


> I'm kind of surprised that they are proposing a BiPAP before even doing a sleep study. As far as I know, the pressure required is not something they can tell reliably by visual examination....it takes trying different pressure levels to find what works for an individual. <shrug>



I'm not sure why they came to that conclusion. They looked at my airway which was pretty small, noticed my tongue was fairly large and nearly obstructing the view of my tonsils, then the width of my neck and the description of my symptoms. The fact that I don't snore on my side and stomach yet I still feel the fatigue. Their assessment was merely a guess given what they've experienced in the past but no machine has been ordered as of yet. The test is April 19th and from then they will evaluate all things concerned and try to find the best fit. 

When I initially made the appointment over the phone the lady asked me if I wanted the sleep disorder doctors in the pulmanary or neurology division. :blink: How the hell am I supposed to know? I chose pulmanary because I've had issues with blood clots in my lungs in the distant past. When they listened to my lungs they were congested from seasonal allergies which caused a bit of concern. This could wiegh in to why they are considering a BiPAP instead of a CPAP, I'm not sure. Also they know I'm a singer and made a referrence to wanting to evaluate the strength in my chest cavity to breath in and out so all if that comes into play. We'll just have to wait and see. They made it clear that nothing is written in stone, these are just some ideas and the tests will be important. 

One thing I notice about the doctors at this hospital is that they are very vocal and communicative. They are not cocky or tight lipped as to what their educated guesses are even before test results are returned. They look you in the eye, tell you what they think and what's going to happen, listen to what you have to say and work with you to try and get to the bottom of things. The first doctor I met with spoke with me, wrote things down and examined me for about 30 minutes. Then she called in the guy who heads the whole thing up and in front of me, told my whole life's story to him including dates and time frames, no errors and completely from memory. *I* can't even remember the doctors' names. :blush:


----------



## Violet_Beauregard

I actually have a Dr. appointment with my family Dr. on Tuesday. She's the one who sent me for the sleep study. I'll talk with her then and see what she has to say. I don't think it's the machine... I think it's me... LOL 





LillyBBBW said:


> The people I saw told me that the machine should be returned if you don't notice any results after about a month. I bought a brand new mobile telephone and had to return it just days after opening because it wouldn't work. Everyone could hear me on it fine but I could hear nothing but dead plastic. If your machine were faulty or malfunctioning you would have no way of knowing. I don't want to bully you as obviously you must do what's best. But I would seriously consider going back to your doctor and seeing about getting your machine replaced. It may be a manufacturers error and have nothing to do with you.


----------



## Violet_Beauregard

Well, when I see the Dr. on Tuesday, I'll see what she thinks. Catching up on sleep debt might be it, but I'm not really sure. I don't think she'd be opposed to prescribing another machine...she's pretty good about everything. 

I'll let you all know what happens on Tuesday...... 






BigBeautifulMe said:


> But the vast majority of people not feeling better after a month usually either have one of four things going on: mouth-breathing (which negates therapy), an uncomfortable mask they just aren't sleeping well with, having the wrong pressure prescribed, or just having a lot of sleep debt they need to make up for. Sometimes it's a combination of more than one thing. If my insurance were renting my machine (I can't remember if yours is, Vi) I would talk to my doctor and tell him I wasn't feeling better, and ask him to RX me a machine with data capabilities so that we could both make sure the prescribed pressure was working for me. If your doctor is not up to date on his knowledge and is very anti-auto, and you don't want to fight him/her on it, you can always ask for either a (Respironics) Remstar Pro2 (pre-M Series) or a (Respironics) Remstar M-Series Pro. Both of these machines provide straight CPAP (NOT Auto), but also provide full data (meaning you can see how many apneas you're having per night, if you're mouth breathing, if excessive leaks are interfering with treatment, etc).
> 
> If you want to give it some time, that's fine, but just make sure you don't wait too long to talk to your doc - insurance companies often rent-to-own machines (mine did) - so after a while, they buy it outright. Mine took more than six months to do that, but just in case - better to talk to the doc and insurance company sooner rather than later. Also, there are lots of side sleepers out there who do perfectly well with CPAP. So if you just can't keep this mask from leaking or get comfortable with it when you're on your side, it's probably time to look at different masks. You've already given it quite a good chance to work for you.
> 
> Good luck, Violet. We're all pulling for you.


----------



## Zandoz

BigBeautifulMe said:


> Zandoz, a BiPap is also often prescribed right off the bat for people with pre-existing lung conditions (like asthma) because its primary purpose is to help in exhalation. If they had reason to believe Lilly was going to have problems exhaling against the pressure, I could see them thinking she'd need one. But as strong as Lilly's respiratory equipment must be, given that she's an opera singer, I kind of doubt that.  I don't know, though - I was trained as an opera singer for a while, and I still had problems exhaling against the pressure. But I was never a pro like Lilly.
> 
> Also, a BiPapST (a timed bipap device) would be prescribed for someone with Central Apnea, rather than obstructive. If they had reason to believe her apnea was central in nature, that would be another reason to be leaning towards a BiPap already.
> 
> I'm still wondering what their line of reasoning is - but in all honesty, BiPaps are very nice machines, and there's absolutely no harm in Lilly having one, even if she doesn't truly "need" one (as long as her insurance is picking up the tab, that is, as they are definitely more costly).



I did not even think of the central vs obstructive thing...I have both, so one or the other has never been an issue for me.



LillyBBBW said:


> I'm not sure why they came to that conclusion. They looked at my airway which was pretty small, noticed my tongue was fairly large and nearly obstructing the view of my tonsils, then the width of my neck and the description of my symptoms. The fact that I don't snore on my side and stomach yet I still feel the fatigue. Their assessment was merely a guess given what they've experienced in the past but no machine has been ordered as of yet. The test is April 19th and from then they will evaluate all things concerned and try to find the best fit.
> 
> When I initially made the appointment over the phone the lady asked me if I wanted the sleep disorder doctors in the pulmanary or neurology division. :blink: How the hell am I supposed to know? I chose pulmanary because I've had issues with blood clots in my lungs in the distant past. When they listened to my lungs they were congested from seasonal allergies which caused a bit of concern. This could wiegh in to why they are considering a BiPAP instead of a CPAP, I'm not sure. Also they know I'm a singer and made a referrence to wanting to evaluate the strength in my chest cavity to breath in and out so all if that comes into play. We'll just have to wait and see. They made it clear that nothing is written in stone, these are just some ideas and the tests will be important.
> 
> One thing I notice about the doctors at this hospital is that they are very vocal and communicative. They are not cocky or tight lipped as to what their educated guesses are even before test results are returned. They look you in the eye, tell you what they think and what's going to happen, listen to what you have to say and work with you to try and get to the bottom of things. The first doctor I met with spoke with me, wrote things down and examined me for about 30 minutes. Then she called in the guy who heads the whole thing up and in front of me, told my whole life's story to him including dates and time frames, no errors and completely from memory. *I* can't even remember the doctors' names. :blush:



The communicative thing is a big plus...with the exception of one doctor (and he retired after only a couple years) my doctors have been totally non-communicative all my life. All I know about most of the stuff that is supposed to be wrong with me is "The doctor said I have ____." A good example is something that came up with my new doc the other day. I was diagnosed with arthritis and "degenerative joint disease" about ten years ago...during that time I've had 3 doctors before this one. The original doc used both terms like it was two separate issues, and one each would talk about one or the other term (and to my uninformed view seemed to be ignoring the other problem). Wednesday was the first time I had a doctor actually explain that they were interchangeable terms for the same thing. Even after being diagnosed as diabetic, the only information I was given was essentially "cut out the sweet stuff and take these pills"...it was years before I knew that carbs in general were an issue...and that came from a conversation with another diabetic, not from the medical profession.


----------



## LillyBBBW

Zandoz said:


> I did not even think of the central vs obstructive thing...I have both, so one or the other has never been an issue for me.
> 
> 
> 
> The communicative thing is a big plus...with the exception of one doctor (and he retired after only a couple years) my doctors have been totally non-communicative all my life. All I know about most of the stuff that is supposed to be wrong with me is "The doctor said I have ____." A good example is something that came up with my new doc the other day. I was diagnosed with arthritis and "degenerative joint disease" about ten years ago...during that time I've had 3 doctors before this one. The original doc used both terms like it was two separate issues, and one each would talk about one or the other term (and to my uninformed view seemed to be ignoring the other problem). Wednesday was the first time I had a doctor actually explain that they were interchangeable terms for the same thing. Even after being diagnosed as diabetic, the only information I was given was essentially "cut out the sweet stuff and take these pills"...it was years before I knew that carbs in general were an issue...and that came from a conversation with another diabetic, not from the medical profession.



Yes, I was getting the same treatment at the old hospital that my family favors. After years of being looked down upon disdainfully, and constatnly finding that their staff and diagnostic equipment was inadequate for testing people of size I switched to this new hospital. I've met a jerk or two at the new place, but overall the difference is unmistakable. 

Recently my brother donated a kidney to my father. They treated my dad very well but were heinous towards my brother. They informed him of nothing. As he was recovering I went over to see him. He talked of his surgical wonds and I began to explain the incisions based on what I knew about gastric bypass and the possible reason his rib muscles were sore and spasming, making it difficult for him to sit up for long periods. He was so overwhelmed that he wept, NO ONE told him what was done to him or what to expect. He was having all kinds of physical reactions to what had happend to him during surgery and he didn't know if something was wrong, is he okay, will be be impaired for life, etc. Having never been in a hospital in his life he was very nervous. After surgery he had a fainting episode and called for help and no one came to him. When they did they flagged him off like he was nothing which left him very upset and with a sour taste. He kept quiet about his concerns because he didn't want to upset my parents, but to the people at the hospital he was merely a host body and nothing more. I Makes me so angry.  I told him why I left that wretched hospital and he is considering doing the same. I told my brother that maybe not telling him what was going to happen was deliberate on the part of the hospital becasue they didn't want to frighten him into changing his mind, but honestly there is just no excuse.


----------



## Violet_Beauregard

Well, I'm seeing my Dr. tomorrow and plan to discuss the CPAP situation. I'll let you all know how it goes.....


----------



## LillyBBBW

Good luck Violet!


----------



## Violet_Beauregard

Well the doctor visit went OK. I told her I didn't think the CPAP was doing much for me, and that I felt I slept better before. She asked me a lot of questions about the fit of the headgear and the machine itself. She was very good and said she felt that the fit was OK (which I tend to agree with) and that I just need to keep using it and get more comfortable with it. She said I just need to make it more routine and to the point of not even thinking about it. She did say that because my apnea is somewhat mild, that the results won't be overwhelming, and that it may take some time to see overly obvious results. She wants me to stick with it until I go back to see her in three months. She did say too, that being opposed to it mentally is part of my problem as well. She said that if it was something that I *wanted* to do, then I would be more prone to see the results more, as opposed to seeing the negativity. I can honestly say I agree with that. 

Soooo, I just need to bite the bullet and stick with it... and... adapt! I'm going to keep trying. I'm also going to try to get rid of my negative attitude about the whole thing. I think that in itself will be a big help.

Thanks to all of you guys for your encouragement.... they have been tremendously helpful. I appreciate it so very much!! Thank goodness for my Dims friends!!  :wubu:


----------



## BigBeautifulMe

Sounds like good advice, Violet.  Attitude is a big part of it. Good luck, and stick with it (I know you will).


----------



## Violet_Beauregard

Speaking of Dims friends, BBMe, you have been my biggest supporter with the CPAP. I cannot thank you enough for all the info, advice and encouragement. :bow: 

I promise to keep you filled in on my progress. Hugs to you for being a great friend.... ((((((BBMe)))))) 


Now... onto the next patient... Lilly!  




BigBeautifulMe said:


> Sounds like good advice, Violet.  Attitude is a big part of it. Good luck, and stick with it (I know you will).


----------



## BigBeautifulMe

Awww, thanks, Vi.  I really do wish you well. Anytime you need help, I'm here.


----------



## LillyBBBW

Great update Vi! I'm actually chomping at the bit and can't *wait* to get mine. I'm so tired of being tired, I just want to start feeling better. If I had to wear a helmet and goggles I'd do it.  I'm not allowed to drive until I get things straightened out.

By the way, what are you supposed to do if you catch a cold? Can you wear it while your sinuses are inflamed and/or runny?


----------



## Violet_Beauregard

I hope you have great results Lilly. Tired of being tired exactly describes the feeling. 

You know, I'm not sure about what to do when you have a cold. I rarely get sick, so I've not had that problem. BBMe may have a better answer for you on that one. I know I make a point of blowing my nose before I put it on. 







LillyBBBW said:


> Great update Vi! I'm actually chomping at the bit and can't *wait* to get mine. I'm so tired of being tired, I just want to start feeling better. If I had to wear a helmet and goggles I'd do it.  I'm not allowed to drive until I get things straightened out.
> 
> By the way, what are you supposed to do if you catch a cold? Can you wear it while your sinuses are inflamed and/or runny?


----------



## BigBeautifulMe

Most insurance plans allow the purchase of 2 masks per year - I made sure one of those purchases was a full face mask. A full face mask covers the mouth and nose, and so allows you to breathe through your mouth without losing treatment pressure. This is what I use when I get a cold.  This seems to work especially nicely for people who use a heated humidifier as well, as that often helps to clear congestion. My personal favorite is the Ultra Mirage Full Face mask. Of course, a full face mask isn't nearly as comfortable as nasal pillows, but I can put up with it for a few days when I'm sick and wouldn't be sleeping well, anyway. 

Good luck, ladies. And Lilly - I was exactly the same way. I would've stood on my head in the shower if they'd told me it would get rid of the tiredness.


----------



## imfree

Middle Tennessee weather and vegetation aggravate many people's allergies. I have felt a considerable improvement in breathing and
BiPAP performance since I went on year-round decongestants and nasal spray a few months ago.


----------



## Zandoz

LillyBBBW said:


> By the way, what are you supposed to do if you catch a cold? Can you wear it while your sinuses are inflamed and/or runny?



For me, if the sinus meds didn't cut through the crud, it's always been a matter of just wearing it anyway, and hoping something clears up in the night. I've found sleeping oon my side helps....gravity shifting crud sometimes clears the upside enough to help a bit.



Violet_Beauregard said:


> I know I make a point of blowing my nose before I put it on.



That's part of my bed time ritual to...along with a dose od Tylenol multisymptom night time.



BigBeautifulMe said:


> Most insurance plans allow the purchase of 2 masks per year - I made sure one of those purchases was a full face mask.



My insurance experiance has been the opposite...they won't pay for anything after the initial purchase. Filters, nasal pillows, hoses are all out-of-pocket.



imfree said:


> Middle Tennessee weather and vegetation aggravate many people's allergies. I have felt a considerable improvement in breathing and
> BiPAP performance since I went on year-round decongestants and nasal spray a few months ago.



What meds do they have you on? A couple of times the doc has given me nasal sprays like Rhinocort (sp), but they only seeem to work for about an hour...and stuff up the nose just creeps me out.


----------



## imfree

Hi Zandoz, I'm on Loratadine, decongestant and Fulnisoldide, nasal spray. They have provided clearing of breathing passages to the extent of
giving me great hope of being able to discontinue oxygen therapy after I see the VA pulmonologist in September.


----------



## Violet_Beauregard

I did find out my insurance plan will replace the nasal pillows, hoses and filters every three months, and head gear and a complete nasal mask replacement twice a year. The home health care place even gave me a sheet to sign and fill out and it's an automatic thing. I was pretty pleased with that. 



BigBeautifulMe said:


> Most insurance plans allow the purchase of 2 masks per year.


----------



## Violet_Beauregard

BTW, I have very good insurance....thank GOD!


----------



## LillyBBBW

Violet_Beauregard said:


> BTW, I have very good insurance....thank GOD!



Amen to that. My doctor seems secure in the fact that my insurance carrier will cover anything deemed necessary. Let's hope she's right.


----------



## Zandoz

imfree said:


> Hi Zandoz, I'm on Loratadine, decongestant and Fulnisoldide, nasal spray. They have provided clearing of breathing passages to the extent of
> giving me great hope of being able to discontinue oxygen therapy after I see the VA pulmonologist in September.



Hmmmm...I don't think I've tried either of those, unless it was under another name. The Tylenol multi symptom night time works well enough, but only for about 5 hours. If I take a second dose I end up sleeping till almost noon. I guess since I have a new doc, it might be time to ask her about new alternatives.


----------



## Violet_Beauregard

GREAT! I know this stuff can be expensive....



LillyBBBW said:


> Amen to that. My doctor seems secure in the fact that my insurance carrier will cover anything deemed necessary. Let's hope she's right.


----------



## Zandoz

Violet_Beauregard said:


> I did find out my insurance plan will replace the nasal pillows, hoses and filters every three months, and head gear and a complete nasal mask replacement twice a year. The home health care place even gave me a sheet to sign and fill out and it's an automatic thing. I was pretty pleased with that.





Violet_Beauregard said:


> BTW, I have very good insurance....thank GOD!



Must be nice...we've changed insurances several times in the last 5 years or so, and every one seems to opperate on the "It's not covered" standard.



LillyBBBW said:


> Amen to that. My doctor seems secure in the fact that my insurance carrier will cover anything deemed necessary. Let's hope she's right.



Be very careful there. We recently got tagged for about $400 in stuff that the provider assured was covered, but was not. And as is the case with most providers, before they take you on you sign a bunch of incomprehensible legalese that says you pay for it if the insurance doesn't...regardless. Their telling you wrong is irrelevant to them. I was surprised the other day when my new provider called to schedule a test, and actually were up front about the fact that they thought it would be covered, but they do not look into my coverage...that's up to me.


----------



## BigBeautifulMe

Zandoz, I'm so sorry to hear your insurance company doesn't cover anything. I'm sure you probably have - but you've double-checked, right? I have really bad insurance - they hardly pay for anything - but even the basic policy I have covers two masks a year. If it was your medical supplier that told you they don't cover it, call your insurance company directly. I had my DME (medical supplier) tell me once that my insurance company wouldn't cover something, and I said "Actually, I'm positive they do, it's on the paperwork they sent me." The medical supplier double-checked, and sure enough, it was covered. I've also had the insurance company give me inaccurate information - I have to call and call and call sometimes before I get someone who actually knows what's going on. It's frustrating to say the least.


----------



## Zandoz

BigBeautifulMe said:


> Zandoz, I'm so sorry to hear your insurance company doesn't cover anything. I'm sure you probably have - but you've double-checked, right? I have really bad insurance - they hardly pay for anything - but even the basic policy I have covers two masks a year. If it was your medical supplier that told you they don't cover it, call your insurance company directly. I had my DME (medical supplier) tell me once that my insurance company wouldn't cover something, and I said "Actually, I'm positive they do, it's on the paperwork they sent me." The medical supplier double-checked, and sure enough, it was covered. I've also had the insurance company give me inaccurate information - I have to call and call and call sometimes before I get someone who actually knows what's going on. It's frustrating to say the least.



The "not covered" comes from the insurance company. As far as the BiPAP stuff goes, all they will cover is the original purchase...all else is considered maintenance. I can get a whole new machine/headgear/mask set up...but only after we pay a monthly rent for a year that ends up being more than what I could buy the machine myself from one of the online outlets. 

Basically everything outside of basic doctors visits and prescription meds requires months of fighting, and then it's frequently not covered...or covered so minimally that it's ridiculous. A good example is my diabetes testing supplies. We had been paying out of pocket...one day the pharmacist asked why we'd not gotten a prescription for them, because most insurances would cover them. We got the prescription...submitted it...the insurance covered a whopping whole $2.48...and we could only get half the quantity at a time.


----------



## imfree

Zandoz said:


> The "not covered" comes from the insurance company. As far as the BiPAP stuff goes, all they will cover is the original purchase...all else is considered maintenance. I can get a whole new machine/headgear/mask set up...but only after we pay a monthly rent for a year that ends up being more than what I could buy the machine myself from one of the online outlets.
> 
> Basically everything outside of basic doctors visits and prescription meds requires months of fighting, and then it's frequently not covered...or covered so minimally that it's ridiculous. A good example is my diabetes testing supplies. We had been paying out of pocket...one day the pharmacist asked why we'd not gotten a prescription for them, because most insurances would cover them. We got the prescription...submitted it...the insurance covered a whopping whole $2.48...and we could only get half the quantity at a time.


 Hi Zandoz, I've seen you mention "wound clinic". Are you a veteran? If you are, the VA would be able to help. If you're low-income, you
should be able to get government help with your diabetic supplies. I know you
have probably already investigated these possibilities, but I just wanted to 
be sure, neighbor.


----------



## Zandoz

imfree said:


> Hi Zandoz, I've seen you mention "wound clinic". Are you a veteran? If you are, the VA would be able to help. If you're low-income, you
> should be able to get government help with your diabetic supplies. I know you
> have probably already investigated these possibilities, but I just wanted to
> be sure, neighbor.



Thanks for your concern. No, I'm not a vet. My wounds are from complications arrising from a combination of diabetes and venious stasis. 

On the government help front, that's a building catch-22 situation...because I am insured under my wife's policy, medicare won't come into play...and my wife's employer is trying to institute a policy where for family members other than the employee, they won't cover if there is another insurance. In other words it's heading for the situation where neither will pay because of the other. <shrug>


----------



## imfree

Zandoz said:


> Thanks for your concern. No, I'm not a vet. My wounds are from complications arrising from a combination of diabetes and venious stasis.
> 
> On the government help front, that's a building catch-22 situation...because I am insured under my wife's policy, medicare won't come into play...and my wife's employer is trying to institute a policy where for family members other than the employee, they won't cover if there is another insurance. In other words it's heading for the situation where neither will pay because of the other. <shrug>


 Sorry to hear about the insurance, Zandoz. I'm with you on the stasis, mine's also diabetes-related. I've been having my Mom put ProFour compression bandages on my legs since Sept. last year. The VA has not yet sent me the XL size inner liners I need for my thereputic compression stockings.


----------



## Zandoz

imfree said:


> Sorry to hear about the insurance, Zandoz. I'm with you on the stasis, mine's also diabetes-related. I've been having my Mom put ProFour compression bandages on my legs since Sept. last year. The VA has not yet sent me the XL size inner liners I need for my thereputic compression stockings.



I sent you a PM, so we do't get this thread any farther off topic...LOL.


----------



## LillyBBBW

I have a question. I have constant struggles with my sinuses. Is there a connection between frequent sinus disturbances and sleep apnea?


----------



## Zandoz

I can't say what the official line is on this, but to my mind, anything that would obstruct breathing would be a contributor.


----------



## Violet_Beauregard

I would have to agree with Zandoz on this one.... it would make sense to me....



LillyBBBW said:


> I have a question. I have constant struggles with my sinuses. Is there a connection between frequent sinus disturbances and sleep apnea?





Zandoz said:


> I can't say what the official line is on this, but to my mind, anything that would obstruct breathing would be a contributor.


----------



## imfree

Violet_Beauregard said:


> I would have to agree with Zandoz on this one.... it would make sense to me....


 Year-round decongestants and nasal spray are helping me.
Middle Tennessee causes a lot of people allergy problems, though.


----------



## Violet_Beauregard

Lilly, isn't your sleep study coming up? Next week, right?


----------



## LillyBBBW

Yes it is Vi! Next Thursday.  I'm getting over a bad cold right now and I'm all stuffy. I hope it's cleared up by then. 

How are you doing? Anything new?


----------



## Violet_Beauregard

I thought you said the 19th, but my mind is going these days, so I wanted to be sure. Yes, I hope your cold is over by then... I'm sure it will be. I know I was a little stuffy when I went for mine and I was afraid that it might make a difference.

I'm doing OK...nothing new..... I think I'm just sort of getting used to the mask and machine.... I still don't like it, but I'm not resenting it so much.. LOL

Let us know how things work out next week. I'm sure we'll all be checking in with you!


----------



## SummerG

LillyBBBW said:


> Yes it is Vi! Next Thursday.  I'm getting over a bad cold right now and I'm all stuffy. I hope it's cleared up by then.
> 
> How are you doing? Anything new?



hey lilly! i'm excited for you! i remember the night before my 1st sleep study... i was freaking out.. but that's because i am a big baby, lol.... it really was not a big deal... and i calmed down quite a bit after some kind words from some dimmers. for me the process of having the study done and having to wait 3 months for a dr's appt and then the machine and the ongoing appointments i've had to deal with have been worth all the anxiety. i'm adding you to my good vibes list... hoping your stuffiness subsides!



Violet_Beauregard said:


> I thought you said the 19th, but my mind is going these days, so I wanted to be sure. Yes, I hope your cold is over by then... I'm sure it will be. I know I was a little stuffy when I went for mine and I was afraid that it might make a difference.
> 
> I'm doing OK...nothing new..... I think I'm just sort of getting used to the mask and machine.... I still don't like it, but I'm not resenting it so much.. LOL
> 
> Let us know how things work out next week. I'm sure we'll all be checking in with you!



Violet... I'm proud of you for sticking with it.... I know I haven't been responding to the thread, but I have been keeping up with it... (cpap talk stalker maybe? lol) I've had problems with keeping the mask on... I wake up and find it on the opposite side of the bed. but last night i kept it on for 5 1/2 hours straight... i totally get the resentment thing... wouldnt it be nice to not have that 1 extra thing to worry about? and even though i havent had crazy life shattering results... i have noticed little differences... i've been able to keep a more normal sleep schedule... don't wake up with headaches... i dont fall asleep in the bathtub, lol.... i think you continuing treatment even with a mild case is great, because maybe early treatment will keep you from getting it worse later on. plus good oxygen levels can't be bad, lol. ok, i'm rambling now... but good stuff... keep it up.. YAY!


----------



## Violet_Beauregard

Hey Summer! It would definitely be nice not to have one more thing to worry about. My sleep schedule is the thing that is still off. I still swear I'm sleeping worse because of it. You are very right about early treatment too. I'm hoping it doesn't get worse.... then I'll REALLY resent it!! LOL

Thanks!




SummerG said:


> Violet... I'm proud of you for sticking with it.... I know I haven't been responding to the thread, but I have been keeping up with it... (cpap talk stalker maybe? lol) I've had problems with keeping the mask on... I wake up and find it on the opposite side of the bed. but last night i kept it on for 5 1/2 hours straight... i totally get the resentment thing... wouldnt it be nice to not have that 1 extra thing to worry about? and even though i havent had crazy life shattering results... i have noticed little differences... i've been able to keep a more normal sleep schedule... don't wake up with headaches... i dont fall asleep in the bathtub, lol.... i think you continuing treatment even with a mild case is great, because maybe early treatment will keep you from getting it worse later on. plus good oxygen levels can't be bad, lol. ok, i'm rambling now... but good stuff... keep it up.. YAY!


----------



## Violet_Beauregard

Hey Lilly, I wanted to wish you luck on your sleep test on Thursday. I was thinking about it now and wanted to do it before I got sidetracked. I hope it goes well for you and that you get the proper titration...etc. Let us know how you do!

Vi


----------



## LillyBBBW

Violet_Beauregard said:


> Hey Lilly, I wanted to wish you luck on your sleep test on Thursday. I was thinking about it now and wanted to do it before I got sidetracked. I hope it goes well for you and that you get the proper titration...etc. Let us know how you do!
> 
> Vi



I've been looking forward to it all this time and now all of a sudden I'm getting nervous. ACK! Over what, I don't know. Just the jitters.


----------



## SummerG

LillyBBBW said:


> I've been looking forward to it all this time and now all of a sudden I'm getting nervous. ACK! Over what, I don't know. Just the jitters.



**BUG HUGS** i know how ya feel.. my 1st sleep study i was stoked about, then the night before i was anxious and crying off and on. of course, i'm a bit on the melodramatic side... so i imagine for rational people jitters is the normal reaction. my 2nd sleep study i was still anxious, but because i knew what was gonna happen, i wasn't as freaked. i'm sending ya lots of good vibes!


----------



## Violet_Beauregard

I was like that too Lilly, but it will be fine. Just be prepared for them to wire you up everywhere and you'll probably not sleep, but it will be for a good cause! LOL..... Seriously though, you'll be fine. Just relax and it will all be great. 




LillyBBBW said:


> I've been looking forward to it all this time and now all of a sudden I'm getting nervous. ACK! Over what, I don't know. Just the jitters.


----------



## LillyBBBW

Violet_Beauregard said:


> I was like that too Lilly, but it will be fine. Just be prepared for them to wire you up everywhere and you'll probably not sleep, but it will be for a good cause! LOL..... Seriously though, you'll be fine. Just relax and it will all be great.



I have this vision of wires streaming off of every surface of my body connected to beeping whirring equipment, a collander on my head and a turkey baster in my mouth and surrounded by moving cameras, microphones and a crew of 127 people around me as still as statues waiting for me to fall asleep - then suddenly I have to get up to go pee.


----------



## Ho Ho Tai

LillyBBBW said:


> I have this vision of wires streaming off of every surface of my body connected to beeping whirring equipment, a collander on my head and a turkey baster in my mouth and surrounded by moving cameras, microphones and a crew of 127 people around me as still as statues waiting for me to fall asleep - then suddenly I have to get up to go pee.



. . . and you hear one of the techs say, "Hey, bring me that other turkey baster!"


----------



## Violet_Beauregard

Ummmm, drop the collander and you're right about there!! LOL 

Nah, it's not quite that bad. They do wire up your skull, so don't bother to do anything with your hair. They wire your face and chest. And they put one on each leg too. They put a pulse monitor on your finger. You will feel like an experiment though. The night I went, they put 3 students on me to wire... it took forever..... When I went back for the same thing to test the mask, it wasn't nearly as bad. They do ask you if you have to pee!

It won't be so bad.... Just relax and go with the flow... you'll be great!! Good luck sweetie!






LillyBBBW said:


> I have this vision of wires streaming off of every surface of my body connected to beeping whirring equipment, a collander on my head and a turkey baster in my mouth and surrounded by moving cameras, microphones and a crew of 127 people around me as still as statues waiting for me to fall asleep - then suddenly I have to get up to go pee.


----------



## Ho Ho Tai

Violet_Beauregard said:


> . . . . if you have to pee... Just relax and go with the flow... Good luck sweetie!



Well, it IS a partial quote anyway.


----------



## LillyBBBW

Ho Ho Tai said:


> Well, it IS a partial quote anyway.



I'll be sure to drink plenty of water before I go.


----------



## Violet_Beauregard

LOLOLOLOL.... That was great!!!!!






Ho Ho Tai said:


> Well, it IS a partial quote anyway.


----------



## Violet_Beauregard

Sending out good vibes to Lilly for her sleep study tonight!!! Anyone want to join in??


----------



## BigBeautifulMe

I already am!


----------



## Violet_Beauregard

You go girl!!  




BigBeautifulMe said:


> I already am!


----------



## LillyBBBW

Thank you so much everybody! It was a rocky experience. I consider it the best and the worst sleep I ever had in my life. The tech was really nice and very flirty. Had an accent. He smeared my scalp and forehead with some sort of epoxy paste and attached electrodes. then he attached wires to my chest and legs and put my finger in a vise that reads blood oxygen levels. then he put me in this bed that felt like a marble slab with a bed cover on it. It was wretched.

The night before my test I stayed up late. I remembered what you folks told me about all the wires and goo so I wanted to make sure I was dog tired. the bed felt like solid stone. Seriously, I was having a hard time getting comfortable. I tossed about gingerly, fearful I might dislodge a wire or the epoxy would yank my hair out. It was a light sleep and I felt my eyes pop open at every sound. I never sleep like that, usually I sleep like the dead. I was worried that I would not fall asleep, I would not snore, that it would appear I had no issues and then they would let me go. The flirty tech however confided that according to my readings I was asleep in less than 2 1/2 minutes, my usual drop time.

Some time later he came in and woke me to put a biPAP on my head. I woke with a headache but dutifully let him strap me in and make sure no air was escaping. So at this point I had ten electrodes, epoxy glue, a head harness and wind snorkel on my face. I tried to relax and do the best I could. As uncomfortable as I was, this portion of my sleep was far better than the earlier portion. I awoke several times, once to water dripping on my face from the snorkel humidifier, but then eventually dozed off. Finally at a little before 6 a.m. I had to go to the bathroom which was right on schedule for them. The testing was over. 
 
First thing I noticed was that I was ABLE to wake up. Usually I am like a dead dog and I have to lie there for at least an hour before I can get up to do anything. I was up and semi alert, no loopy sleepiness. I hit the streets, rode the subway, took a shower and I notice a significant difference. We'll see how I feel this afternoon, but so far I feel great - like Ripp VanWinkle and before this I was asleep all my life. 

From the bottom of my heart, thank you all. I think I'm going to weep. :wubu: At this point I wait 10 - 14 days to hear the results and go from there.


----------



## Happy FA

Lilly

How wonderful for you. You weathered the difficulties in the sleep study process like a champ. It sounds like what you had was a split study, where they do both the determination as to whether you have obstructive sleep apnea and then titrate the levels of pressure you need for good quality sleep in one night. 

Many sleep centers only do this if the tech clearly sees that you have significant apnea events and your blood oxygen is dropping very significantly. The titrating part of the night is when they try to figure out how much pressure you need and it can be at times uncomfortable and poor sleep, relatively speaking as they test different pressures. It sounds, however, that they zoned in on what you need and for at least a small portion of the night they had you running on "the right pressure" for you and you had really good quality sleep. 

I'm sad to report that tonight will probably be a lousy night of sleep for you because the apnea will still be there, but your body won't be so tired that you won't be aware that you keep waking up. For me, the one night between the titration session(I had separate sleep study and titration nights) and getting my cpap was about the worst night of sleep I can remember having because I felt like I was awake the whole night.

But, in any event it sounds like you're officially an OSA sufferer(huge surprise, lol) and on the way to good, refreshing sleep. 

Yay!!!


----------



## Violet_Beauregard

OMG Lilly how great for you!!! Yeah! I had mine done in two seperate nights, but Happy FA is right.... they saw your oxygen levels dropping and put it on you then to see the results. 

It is definitely an experience what they put you thru, but well worth it in the long run. I am so glad you saw noticeable results. This is going to be really great for you. I am so happy!

I'm hanging in with mine, but I'm more pleased that yours is going to really help you out!!

Congratulations!!! BIG HUGS!!!


----------



## imfree

Wow, Lilly, sounds like your apnea may be severe, like mine.
I think you'll be blessed by a major improvement in quality-of-life,
like I was, go Lilly!!!


----------



## LillyBBBW

I was told in advance that it was going to be a split study by the referring doctor. I thought everybody was tested like that so I thought nothing of it. Everyone was pretty sure I had OSA. Even the tech took one look at me and fitted me for a face mask in advance because he knew he was going to need it. I don't know how long I was out but he seemed pretty eager to get that mask on me when the time came.

I've had a cold so at some point in the middle of the night I woke up coughing. It was the strangest feeling like I was coughing with my head out of the window of a moving vehicle. I could not inhale through the mouth at all. I was okay, it was just a weird feeling is all.


----------



## Zandoz

LillyBBBW said:


> Thank you so much everybody! It was a rocky experience. I consider it the best and the worst sleep I ever had in my life. The tech was really nice and very flirty. Had an accent. He smeared my scalp and forehead with some sort of epoxy paste and attached electrodes. then he attached wires to my chest and legs and put my finger in a vise that reads blood oxygen levels. then he put me in this bed that felt like a marble slab with a bed cover on it. It was wretched.
> 
> The night before my test I stayed up late. I remembered what you folks told me about all the wires and goo so I wanted to make sure I was dog tired. the bed felt like solid stone. Seriously, I was having a hard time getting comfortable. I tossed about gingerly, fearful I might dislodge a wire or the epoxy would yank my hair out. It was a light sleep and I felt my eyes pop open at every sound. I never sleep like that, usually I sleep like the dead. I was worried that I would not fall asleep, I would not snore, that it would appear I had no issues and then they would let me go. The flirty tech however confided that according to my readings I was asleep in less than 2 1/2 minutes, my usual drop time.
> 
> Some time later he came in and woke me to put a biPAP on my head. I woke with a headache but dutifully let him strap me in and make sure no air was escaping. So at this point I had ten electrodes, epoxy glue, a head harness and wind snorkel on my face. I tried to relax and do the best I could. As uncomfortable as I was, this portion of my sleep was far better than the earlier portion. I awoke several times, once to water dripping on my face from the snorkel humidifier, but then eventually dozed off. Finally at a little before 6 a.m. I had to go to the bathroom which was right on schedule for them. The testing was over.
> 
> First thing I noticed was that I was ABLE to wake up. Usually I am like a dead dog and I have to lie there for at least an hour before I can get up to do anything. I was up and semi alert, no loopy sleepiness. I hit the streets, rode the subway, took a shower and I notice a significant difference. We'll see how I feel this afternoon, but so far I feel great - like Ripp VanWinkle and before this I was asleep all my life.
> 
> From the bottom of my heart, thank you all. I think I'm going to weep. :wubu: At this point I wait 10 - 14 days to hear the results and go from there.




I'm proud of you. You did well and from the sounds of it may be well down the path to getting some good sleep on a regular basis. 

I am surprised about the 14 day wait. Both times I've been through sleep studies I've gotten the results before I left.


----------



## Violet_Beauregard

I had to wait on mine too. I think about 2 weeks as well. I wasn't pushing for results...I was opposed to the whole thing...well, you guys all know that! LOL




Zandoz said:


> I am surprised about the 14 day wait. Both times I've been through sleep studies I've gotten the results before I left.


----------



## LillyBBBW

Zandoz said:


> I'm proud of you. You did well and from the sounds of it may be well down the path to getting some good sleep on a regular basis.
> 
> I am surprised about the 14 day wait. Both times I've been through sleep studies I've gotten the results before I left.



I remember reading a clause in the litterature saying that the techs who run the test are not allowed to share any information with you. they compile the info and forward it on to your lead doctor who handles all the particulars.

In one piece of litterature I was told to go to the 8th floor. I go there and the place is deserted exept way in the back in this lab where I find these two people in lab coats hanging around. They see me and come out and I explain what I'm looking for. They then tell me that they are the diagnostic team who evaluates the resutls. The actual testing is on the 7th floor and they were kind enough to direct me. 

Seems this thing goes through a lot of hands: the lab tech, the diagnostic team, the final report which then goes to the doctor in charge. 

By the by, I'm feeling sleepy this afternoon. It's not as bad as it was before but I'm sleepy nontheless. I suppose one should be sleepy after sleeping on a boulder cott like that one was.


----------



## SummerG

14 days sounds like a dream to me... i had to wait about a month before they finally sent the results of my 1st study to my PCP's office (they refused to tell me before my sleep dr appt), who then in turn mailed it to me, because *they* also refused to verbally give me the information or even discuss it with me. then another 2 months before i was able to get an appt for the sleep dr... then about 4 days for my machine, a month for titration sleep study appointment, and now another month till i see the dr for the titration results. 

an emotional rollercoaster of anxiety and anger that i am still recovering from, but still think was & is worth the effort.


----------



## BigBeautifulMe

Lilly,
I know it's going to sound weird that I'm happy for you - but I am.  If you hadn't had apneas at all, they wouldn't have put you on a BiPap - so it's obvious that you do. It also seems that you might have needed a high pressure if they put you on a BiPap. However, pressure does not correlate to severity, so I can't speculate as to haw severe your apnea is. I am just SO happy that you are finally going to have an answer to your sleep issues.  

Even though you felt good today (which is great!) don't expect to feel better right away. It can take a while to adjust to having this lovesick octopus on your face - be patient with yourself.  Feel free to PM me anytime you want. 

Congrats again on a successful sleep study.


----------



## LillyBBBW

BigBeautifulMe said:


> Lilly,
> I know it's going to sound weird that I'm happy for you - but I am.  If you hadn't had apneas at all, they wouldn't have put you on a BiPap - so it's obvious that you do. It also seems that you might have needed a high pressure if they put you on a BiPap. However, pressure does not correlate to severity, so I can't speculate as to haw severe your apnea is. I am just SO happy that you are finally going to have an answer to your sleep issues.
> 
> Even though you felt good today (which is great!) don't expect to feel better right away. It can take a while to adjust to having this lovesick octopus on your face - be patient with yourself.  Feel free to PM me anytime you want.
> 
> Congrats again on a successful sleep study.




Thank you thank you thank you for talking me into it.  I always discounted apnea because I don't snore. I was still drifting off later during the day but the morning was an eye opener to say the least. It will be a while before all the hands have been shook, papers have been signed and the ribbons have been cut before I get my BiPap but I'm looking forward to it. 

Thanks again everybody. :wubu: If you can stand anymore I may come in here from time to time with an update if anything interesting happens. And I'm still going to be looking around here for you Vi, and how things are going.  


(Pssst! Miss Toodles, now you.) *hint hint*

EDIT: The high pressure is needed probably because my sinuses are ALWAYS swollen. I have annoying allergies to everything so in general my breathig is always hindered in one nostril or another.


----------



## Violet_Beauregard

I'll be here Lilly, and we can all keep giving updates!





LillyBBBW said:


> Thank you thank you thank you for talking me into it.  I always discounted apnea because I don't snore. I was still drifting off later during the day but the morning was an eye opener to say the least. It will be a while before all the hands have been shook, papers have been signed and the ribbons have been cut before I get my BiPap but I'm looking forward to it.
> 
> Thanks again everybody. :wubu: If you can stand anymore I may come in here from time to time with an update if anything interesting happens. And I'm still going to be looking around here for you Vi, and how things are going.
> 
> 
> (Pssst! Miss Toodles, now you.) *hint hint*


----------



## Zandoz

Violet_Beauregard said:


> I had to wait on mine too. I think about 2 weeks as well. I wasn't pushing for results...I was opposed to the whole thing...well, you guys all know that! LOL





LillyBBBW said:


> I remember reading a clause in the litterature saying that the techs who run the test are not allowed to share any information with you. they compile the info and forward it on to your lead doctor who handles all the particulars.
> 
> In one piece of litterature I was told to go to the 8th floor. I go there and the place is deserted exept way in the back in this lab where I find these two people in lab coats hanging around. They see me and come out and I explain what I'm looking for. They then tell me that they are the diagnostic team who evaluates the resutls. The actual testing is on the 7th floor and they were kind enough to direct me.
> 
> Seems this thing goes through a lot of hands: the lab tech, the diagnostic team, the final report which then goes to the doctor in charge.
> 
> By the by, I'm feeling sleepy this afternoon. It's not as bad as it was before but I'm sleepy nontheless. I suppose one should be sleepy after sleeping on a boulder cott like that one was.





SummerG said:


> 14 days sounds like a dream to me... i had to wait about a month before they finally sent the results of my 1st study to my PCP's office (they refused to tell me before my sleep dr appt), who then in turn mailed it to me, because *they* also refused to verbally give me the information or even discuss it with me. then another 2 months before i was able to get an appt for the sleep dr... then about 4 days for my machine, a month for titration sleep study appointment, and now another month till i see the dr for the titration results.
> 
> an emotional rollercoaster of anxiety and anger that i am still recovering from, but still think was & is worth the effort.



I guess I was lucky both times...both times the person responsible for the evaluation did their thing that morning. My first test, they sent me home from the place with my CPAP equipment. I suppose it could be because of how bad off I was. The first one was supposed to be a 3 nighter, but they put me on a CPAP half way through the first night, played with the settings, and sent me home with it. Matter of fact, I got my evaluation in a hallway coming back from the restroom...LOL...I passed the guy, he asked my name, and then went over the results right there.


----------



## LillyBBBW

Mmkay, it's stupid question time folks. I think I know the answer so I'm just trying to hold it up to what you folks know and see if we're on the same page.

I was working yesterday. The phones were on fire so I was busy as hell when my mother called. She started getting on me about weight loss, something she doesn't really do anymore since I've chewed her out. But this time she seemed really panicked and scared. She seems to believe that if I use the BiPap long term I will eventually lose some of my faculites, like it will weaken my breathing muscles or some such thing. She seems to be confusing a CPAP/BiPAP with life suppport. I tired to calm her down but she seemed really frightened, something that doesn't happen to my mother very often. 

Now she's kinda got ME spooked a little. :blink: Will a CPAP/BiPAP make breathing at night so easy that whatever 'strength' or compensational methods I've developed over the years will be diminished or compromised? And what can I say to this woman to get her to understand the concept without her measuring my ass and calling my gym every week to see how many times I've been there and how long I stayed? I *so* don't need this. :doh: It's stressful.


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## Violet_Beauregard

I sincerely doubt it Lilly. All it does is force air to keep your breathing passage open. It's not working FOR your lungs, so your breathing muscles will still be doing their job. I'm no expert, but that's my opinion. BBMe may know better, as she has more experience than me. Let's wait for her to respond.

Vi


----------



## imfree

Hi Lilly and Violet, I have never heard or read of any such thing as CPAP/BiPAP use leading to weakening of breathing or breathing muscles.


----------



## Violet_Beauregard

Hi Edgar,

I didn't think so either. I can't imagine that it would.




imfree said:


> Hi Lilly and Violet, I have never heard or read of any such thing as CPAP/BiPAP use leading to weakening of breathing or breathing muscles.


----------



## LillyBBBW

Thanks Vi and Edgar! I did some research online and found a paper written by a pulmanary expert who deals with patients with PALS who talked about using BiPap. If a patient has slightly dimishished breathing muscle function they will sometimes give them a BiPap which can aid and even reverse the progression, strengthening the breathing process. If a person's breathing function is more seriously compromised they can't even give them a BiPap or CPAP. I called my mom and explained it to her, telling her that she is confusing the machine with life support and that the two aren't related. This seemed to clear everything up for her. I'm glad because she was freaking out. LOL I've never seen her like that. At the end of it all she said, "Well I'm glad you found out more, for you, so you will feel more at east." *smirk* She's something else.


----------



## Violet_Beauregard

Good.... I'm glad you found some good, solid information... for your mom AND for you. It's interesting that it will help strengthen the breathing process. hmmmm......

I'm glad your mom feels better... and you too!!


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## LillyBBBW

My mum leaves the house twice a day to work as a school crossing guard helping little tykes cross the street. Otherwise she sits at home glued to the TV watching CNN and MSNBC all day. She sees a program where people in Botswana are falling out all over the place and she calls me up saying, "Oh my god, wear a hat!" I thought maybe she was nodding off in front of the television and some program came on denouncing the BiPap and that's what gave her the gumption to call me. I'm always okay untill she calls me. All these years and she still has to ability to reduce me to a stammering ninny.


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## BigBeautifulMe

Sorry I didn't see this til now. I was going to answer and say "Actually, if it affects anything at all, it strengthens breathing muscles."  Often people will actually feel "sore" at first, like you can when you're using any muscle more often. It's good for you, and it will keep you breathing night after night, beautifully (and once you get used to it, effortlessly). 

Good luck, L.


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## Violet_Beauregard

BBMe, I knew you would know the proper info! Yeah for BBMe!! 




BigBeautifulMe said:


> Sorry I didn't see this til now. I was going to answer and say "Actually, if it affects anything at all, it strengthens breathing muscles."  Often people will actually feel "sore" at first, like you can when you're using any muscle more often. It's good for you, and it will keep you breathing night after night, beautifully (and once you get used to it, effortlessly).
> 
> Good luck, L.


----------



## Zandoz

LillyBBBW said:


> Mmkay, it's stupid question time folks. I think I know the answer so I'm just trying to hold it up to what you folks know and see if we're on the same page.
> 
> I was working yesterday. The phones were on fire so I was busy as hell when my mother called. She started getting on me about weight loss, something she doesn't really do anymore since I've chewed her out. But this time she seemed really panicked and scared. She seems to believe that if I use the BiPap long term I will eventually lose some of my faculites, like it will weaken my breathing muscles or some such thing. She seems to be confusing a CPAP/BiPAP with life suppport. I tired to calm her down but she seemed really frightened, something that doesn't happen to my mother very often.
> 
> Now she's kinda got ME spooked a little. :blink: Will a CPAP/BiPAP make breathing at night so easy that whatever 'strength' or compensational methods I've developed over the years will be diminished or compromised? And what can I say to this woman to get her to understand the concept without her measuring my ass and calling my gym every week to see how many times I've been there and how long I stayed? I *so* don't need this. :doh: It's stressful.



If anything it should strengthen you...you are exhaling against the pressure of the CPAP/BiPAP...more of a work out than breathing normally. Mentally it's another matter all together...mentally just can not sleep laying down without my machine.


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## Violet_Beauregard

Would it be safe to say we're going to turn into Pavlov's dog? We're going to be conditioned to sleep with the machines?? LOL Eh... there's worse things I guess, huh?? LOLOL





Zandoz said:


> ...mentally just can not sleep laying down without my machine.


----------



## BigBeautifulMe

Worse things than breathing while you're asleep? Well, considering it's up there on the list of "Top Five Things You Need to Stay Alive," I'd say that yes, there are many things that are worse than that.


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## LillyBBBW

*gleefully whines* I can't wait to get mine! :bounce:


----------



## Happy FA

Lilly:

I suspect your mom is confusing the CPAP/BiPap with an iron lung which actually breathes for you if your own muscles don't work to do so. As others have noted all that the Cpap does is provide pressure down the airway to keep it open(like the neck of a balloon if you gently blow into it so it doesn't get kinked and close up). You need to actually breathe in(though there's actually air in the airway due to it being kept open rather than blocked, which is what apnea is). Breathing out you have to breathe out against the pressure of the machine. The BiPap machine senses when you're breathing out and reduces the pressure a bit(the lower number) to make the pressure that you're breathing out against lower and a bit easier. Though easier it's actually harder to breathe out then if there was no pressure at all, so you're actually working your diaphragm, something I'm sure you're familiar with.

Hope that helps

Happy FA


----------



## Zandoz

Violet_Beauregard said:


> Would it be safe to say we're going to turn into Pavlov's dog? We're going to be conditioned to sleep with the machines?? LOL Eh... there's worse things I guess, huh?? LOLOL




Woof.....errrrrr...I mean Yup.


----------



## jkssbbw

my brother has that and he say he feels so much better and its been almost two yrs.But it take awhile to get use to it.


----------



## LillyBBBW

I *just* heard from Dr. K!! She threw some numbers at me that I mostly didn't understand. :huh: Something about 87 episodes an hour? Then something about 17 per hour?  I'm not sure if she was talking about interrupted sleep or interrrupted breathing. She said that I would have to be at least a 5 or more to warrant a machine, mine was 17 therefore I'm in the moderate category. I'm getting a BiPap set at 12 cm? The BiPap people will contact me and make an appointment to come to my house, set it up and show me how to use it. So now I'm FORCED to race around and clean my apartment, it's a dump. 

At one point in the night my oxygen levels dropped to about 88%. No wonder I can't remember anything she told me. :blink: I wrote down everything I could but I'm at work and there's so much rough housing and yip yapping going on in here that I could barely concentrate.


----------



## Happy FA

LillyBBBW said:


> I *just* heard from Dr. K!! She threw some numbers at me that I mostly didn't understand. :huh: Something about 87 episodes an hour? Then something about 17 per hour?  I'm not sure if she was talking about interrupted sleep or interrrupted breathing. She said that I would have to be at least a 5 or more to warrant a machine, mine was 17 therefore I'm in the moderate category. I'm getting a BiPap set at 12 cm? The BiPap people will contact me and make an appointment to come to my house, set it up and show me how to use it. So now I'm FORCED to race around and clean my apartment, it's a dump.
> 
> At one point in the night my oxygen levels dropped to about 88%. No wonder I can't remember anything she told me. :blink: I wrote down everything I could but I'm at work and there's so much rough housing and yip yapping going on in here that I could barely concentrate.


\

Lilly:

I'm curious why they're giving you a bipap with 12cm of pressure. That's not a hugely high value. I have 13 on my cpap and don't have any problem breathing against it. Never had and its been more than a decade. Oxygen levels of 88% are not great, but a fairly minor reduction over what's expected. 95% is considered normal, less than 90% is generally something to start being concerned about. When I had my first study many years ago I was down below the point the equipment accurately measured things(about 70%). With the cpap it's always well over 95%.

The number of apnea events is generally per hour. Though in your case if you slept 5 hours and had 85 apnea events that would average out to 17. Maybe this explains it since you had a split study with first sleeping without the BiPap and then with it. 

Hope this helps.

Happy FA

PS For reference, when I had my first sleep study I had 60 apnea events an hour and that was considered serious but not the worst they'd seen by far.


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## Zandoz

Actually, the fact that you are starting out with a relatively low pressure setting is a good thing. It gives you wiggle room in case the problem worsened. My BiPAP is set at the maximum setting, and I was told at the time it was given to me that this is it...there is nothing more they can do for me if I get worse.


----------



## BigBeautifulMe

Lily, that's great news.  A lot of people with a pressure of 12 (that's a pretty "average" pressure) don't need BiPaps, but the fact is that it will be a machine that will make things more comfortable for you - and there is NOTHING wrong with that.  It could be, as FA said, that you had 87 events total during the night for a total of 17 AHI - or, if you're sure she said 87 per hour, it's probably that you just had 87 hypopneas (which are not a total cessation of flow, and so don't count as a full apnea). It's confusing - but the important thing is that, yes, you should do just fine with your BiPap.  I'm so excited for you!


----------



## LillyBBBW

Happy FA said:


> \
> 
> Lilly:
> 
> I'm curious why they're giving you a bipap with 12cm of pressure. That's not a hugely high value. I have 13 on my cpap and don't have any problem breathing against it. Never had and its been more than a decade. Oxygen levels of 88% are not great, but a fairly minor reduction over what's expected. 95% is considered normal, less than 90% is generally something to start being concerned about. When I had my first study many years ago I was down below the point the equipment accurately measured things(about 70%). With the cpap it's always well over 95%.
> 
> The number of apnea events is generally per hour. Though in your case if you slept 5 hours and had 85 apnea events that would average out to 17. Maybe this explains it since you had a split study with first sleeping without the BiPap and then with it.
> 
> Hope this helps.
> 
> Happy FA
> 
> PS For reference, when I had my first sleep study I had 60 apnea events an hour and that was considered serious but not the worst they'd seen by far.



Dr. K spoke as if there were some things that were unclear in the test I had. I got the impression that my breathing and sleep patterns were eratic and it was hard for them to nail anything down. I told her that usually I sleep like a stone but that night I was like a cat in a room full of rocking chairs. I wasn't surprised the readings were tough to figure. She told me to try the machine at that level, give it some time, try to work with it and if Im just not feeling it to give her a call and they would try to work something out. She even suggested that if the level doesn't work maybe they will bring me back :shocked: for another sleep test where I would wear the BiPap all night this time. Man, I don't want to sleep on that green vinyl mattress again with all those plugs hanging off of me. I had nightmares about that mattress the night after.


----------



## Violet_Beauregard

It's so funny you say that Lilly. When I went for my first sleep study, I had a single, hospital type bed. Mine was done in the hospital sleep lab. When I went back for the second night with the CPAP machine, I got a full-size regular bed.... MUCH more comfy.

I'm glad your results seem to support the BiPAP. I think it will do you a world of good once you get it and get going with it. You have got to be looking forward to it... (more than I was! LOL)





LillyBBBW said:


> Man, I don't want to sleep on that green vinyl mattress again with all those plugs hanging off of me. I had nightmares about that mattress the night after.


----------



## LillyBBBW

I can't believe how fast things are moving along. For anyone who's been keeping score, a company called me this morning to tell me that they got the script for my CPAP (not a BiPap) and they want me to come in on Saturday for a fitting and demonstration. So I suspect that Saturday night will be my first night's sleep with the CPAP. And I'm told that my insurance is picking up the full tab so there's no out of pocket cost for me.


----------



## BigBeautifulMe

Hmm, if your doctor/sleep lab titrated you on a Bipap, and told you you were getting a BiPap, you should be receiving one. If I were you, I would call my sleep doc's office back and be like "What's up with this? I was titrated on a BiPap, but I'm getting a CPAP?" Stand up for yourself - the BiPap will be more comfortable.


----------



## LillyBBBW

BigBeautifulMe said:


> Hmm, if your doctor/sleep lab titrated you on a Bipap, and told you you were getting a BiPap, you should be receiving one. If I were you, I would call my sleep doc's office back and be like "What's up with this? I was titrated on a BiPap, but I'm getting a CPAP?" Stand up for yourself - the BiPap will be more comfortable.



Thanks Missaf & BBM! I've put in a call so I'll confirm with Dr. K when I hear from her.


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## Violet_Beauregard

YAY! That is really quick! And your insurance must be like mine... no out of pocket for me either. I'll be curious to see how your first few days are after being on the machine. 

congrats!





LillyBBBW said:


> I can't believe how fast things are moving along. For anyone who's been keeping score, a company called me this morning to tell me that they got the script for my CPAP (not a BiPap) and they want me to come in on Saturday for a fitting and demonstration. So I suspect that Saturday night will be my first night's sleep with the CPAP. And I'm told that my insurance is picking up the full tab so there's no out of pocket cost for me.


----------



## Happy FA

Lilly:

You should also make sure when you call that there will be some sort of humidification with the cpap or bipap. Without the humidification(whether heated, passover--no, not a Jewish thing, but the air passes over the water on its flow from the machine to your lungs) your throat and nasal passages will tend to dry out from the passage of the air.

When you get your mask or nasal pillows be sure that you are laying down as you would at home when you go to sleep since the fitting must be in that position or positions(if you move around) and not sitting up or standing(unless that's how you sleep). The masks fit differently depending on your position and I know that while I usually sleep on my back, if I want to sleep on my side for some reason(like I have a head cold and find that I can breathe better through my nose on my side) I need to tweak the fitting of my mask and the straps.

Please let us know how it goes.

Happy FA


----------



## LillyBBBW

It just so happens that aI did ask about the humidifier when they called. It is very dry in my apartment so it was in the forefront of my mind to ask since I loved it at the sleep center.

I can't tell you how much I appreciate all of your collective advice. I know NOTHING so your knowledge is giving me things to ask about and helping me tremendously. 




Happy FA said:


> Lilly:
> 
> You should also make sure when you call that there will be some sort of humidification with the cpap or bipap. Without the humidification(whether heated, passover--no, not a Jewish thing, but the air passes over the water on its flow from the machine to your lungs) your throat and nasal passages will tend to dry out from the passage of the air.
> 
> When you get your mask or nasal pillows be sure that you are laying down as you would at home when you go to sleep since the fitting must be in that position or positions(if you move around) and not sitting up or standing(unless that's how you sleep). The masks fit differently depending on your position and I know that while I usually sleep on my back, if I want to sleep on my side for some reason(like I have a head cold and find that I can breathe better through my nose on my side) I need to tweak the fitting of my mask and the straps.
> 
> Please let us know how it goes.
> 
> Happy FA


----------



## LillyBBBW

Got my CPAP and used it last night!  It's blue and pale gray and says Elite on it and possibly manufactured by ResMed. Looks like a little wet 'n dry vac which is basically what it is except in reverse.  He showed me how to use it, I hit him with all my questions and then he stuck it in a case, I signed the forms and I carried it out to the car. After that I went to pick up my VERY pregnant little sister and take her to the mall and suddenly I got nervous that someone would think it was a laptop and smash the window in and steal it from the car. It was safe and sound when I returned though.

I stopped at Walmart, bought four huge jugs of distilled water and headed home. I used the CPAP last night and I took an over the counter sleep aid just to take the edge off. I feel great!  I've made a couple of observations though.

I was concerned that it was programed only to go as high as 12 cm. I feared it may have been too low but I feel it was just right. It may work out differently for different people according to all kinds of factors. The fact that I'm a singer may have worked a lot more in my favor than I realize. I get the impression that when they initially sized me up visually they assumed I would have certain issues that weren't present as strongly as expected, hence the CPAP and the low setting. 

This morning my ribcage feels like I've been singing Wagner for four hours while suspended in air swinging down from a tightrope. The muscles are spasming all over the place and I believe it is because the CPAP pushed air into my lungs all night to a capacity I had never reached before and the susequent work I was doing to push the air out against the CPAP. At one point in the night I woke up and decided to fiddle with the nose mask. I loosened the strap and removed it from my face and immediatley felt a VAST change. Seemed my entire body collapsed in on itself and I was not getting near the air in my lungs that I was with the CPAP on. I was very comfortable with the CPAP on considering it was my first night and I accustomed myself to the airflow relatively quickly. A few times I had to open my mouth and attempt to breath out to see if it was still working and lo and behold, it was. I woke up and started singing "Der Hirt auf dem Felsen" like I've never sung it before. 

 *hugs her CPAP*


----------



## Violet_Beauregard

WOW WOW WOW!!!! How wonderful! I am SO glad for you.... clearly the CPAP is going to make a huge difference for you. What a great first night... I can only imagine how much better it's going to get for you after some regular use! Can you imagine how much better your ability to sing will be? This CPAP is definitely a life saver for you....  Congratulations sweetie... I am THRILLED for you!!! BIG HUGS!!!!!


Vi


----------



## Ho Ho Tai

LillyBBBW said:


> Got my CPAP and used it last night! . . . . I woke up and started singing "Der Hirt auf dem Felsen" like I've never sung it before.
> 
> *hugs her CPAP*



" Je weiter meine Stimme dringt,
Je heller sie mir wieder klingt
Von unten."

A good choice, Lilly, under the circumstances - and an old favorite. When, when, when are you going to attach some audio clips to your website?

That's wonderful, and I'm calling your experience to the attention of Mrs Ho Ho (who does follow the thread anyway, despite her infrequent submissions.) After four or five years, she does feel that it helps her a lot (and me too, since I can sleep with her, and not in the spare bedroom.) But she does still have issues occasionally. She will take it off at night, barely conscious of the act, and I will have to cajole her into putting back on. In the morning, she'll remember none of that.

A CPAP may not cure everything, but it does remove some major issues, so that other issues become more evident and addressable.


----------



## Zandoz

Way to go Lilly!!!!


----------



## LillyBBBW

Ho Ho Tai said:


> " Je weiter meine Stimme dringt,
> Je heller sie mir wieder klingt
> Von unten."
> 
> A good choice, Lilly, under the circumstances - and an old favorite. When, when, when are you going to attach some audio clips to your website?
> 
> That's wonderful, and I'm calling your experience to the attention of Mrs Ho Ho (who does follow the thread anyway, despite her infrequent submissions.) After four or five years, she does feel that it helps her a lot (and me too, since I can sleep with her, and not in the spare bedroom.) But she does still have issues occasionally. She will take it off at night, barely conscious of the act, and I will have to cajole her into putting back on. In the morning, she'll remember none of that.
> 
> A CPAP may not cure everything, but it does remove some major issues, so that other issues become more evident and addressable.



Yes, it was that kind of morning.  It's a song I haven't heard in ages. I was surprised I still remembered it but it was the first thing that popped into my head when I ripped off the mask and noted how open my sinuses were.


----------



## Ho Ho Tai

LillyBBBW said:


> Yes, it was that kind of morning.  It's a song I haven't heard in ages. I was surprised I still remembered it but it was the first thing that popped into my head when I ripped off the mask and noted how open my sinuses were.



. . . while wearing a CPAP. Singing through your nose wouldn't work.

As an aside, did you happen to catch Stephanie Blythe this past weekend, in all three of the Met's Il Trittico pieces?


----------



## BigBeautifulMe

Lilly, I am SO happy things went so well for you with your new best friend! Sounds like you have the Resmed S8 Elite. If so, your machine does have EPR, which is ResMed's form of exhale relief (it's equivalent to Cflex, which we discussed earlier on this thread). If you find it at all difficult to breathe out against the pressure, you can adjust the EPR (or turn it on, if your technician forgot to do that for you). Even better news? Your machine is data-capable. This means that if you start having problems with your therapy, you can purchase the download cable and software and check your own data, including information like how many apnea events you had, what your leak rate was, etc. I *believe* there's even a way to check some of this information on the LCD display of your machine, though I'm not as familar with ResMed machines as I am with Respironics, so I could be wrong. If you want me to, I can post that question on my cpap message board and find out for you.  And remember: If the mask isn't comfortable, there are lots of other choices, and you'll probably want to get a full face mask when your insurance will pay for it (or you can buy one out of pocket online) so that when you're sick, you won't have to go without CPAP.


----------



## LillyBBBW

Ho Ho Tai said:


> . . . while wearing a CPAP. Singing through your nose wouldn't work.
> 
> As an aside, did you happen to catch Stephanie Blythe this past weekend, in all three of the Met's Il Trittico pieces?



I was driving along and searching the radio channels when I came across an opera broadcast. The voice of the mezzo was not familiar to me but now that you mention it it could have been the robust tones of Stephanie Blythe. Unfortunatley I reached my destination too quickly to find out. 

I've been keeping my eyes open to catch a MET performance in one of the local movie theaters here in Boston. I want to support that endeavor.


----------



## LillyBBBW

The guy who demonstrated the machine went over all buttons except for two. I asked about them and he skimmed over an answer that I didn't quite understand. Later I zeroed in on him and questioned him more directly and he downplayed it as if I didn't need to concern my pretty little head with them but basically he showed me that one was a way to check diagnostic data and the other was to work the warmup for the humidifier. I assumed he was either not sure himself, he was insulting my intelligence by assuming I wouldn't understand the technology or he was trying to hide the functions so I wouldn't figure something out and change the settings or get nervous if I saw something troubling. I paid it no attention. I didn't want a fight, I just wanted the machine. The manuals are in the bag and I intended to read them cover to cover so his explanation was probably unnecessary.

I also asked about a full face mask and he said that according of my coverage budget I should be able to get one free of charge but that I should contact the company and inquire since he has no control over that aspect. He did mention something about the machine being a rental for ten months. 

I've been considering getting a duplicate mask anyway because the one I'm currently using looks to me to be a bit fragile, like the plastic they use to make disposable eating utensils. One false move and the plastic bridge secures could get cracked or some other piece could get broken and I'd have to wait days before I could get a replacement under the warranty. I don't want to go a SINGLE night without this thing so I want a backup for just in case.




BigBeautifulMe said:


> Lilly, I am SO happy things went so well for you with your new best friend! Sounds like you have the Resmed S8 Elite. If so, your machine does have EPR, which is ResMed's form of exhale relief (it's equivalent to Cflex, which we discussed earlier on this thread). If you find it at all difficult to breathe out against the pressure, you can adjust the EPR (or turn it on, if your technician forgot to do that for you). Even better news? Your machine is data-capable. This means that if you start having problems with your therapy, you can purchase the download cable and software and check your own data, including information like how many apnea events you had, what your leak rate was, etc. I *believe* there's even a way to check some of this information on the LCD display of your machine, though I'm not as familar with ResMed machines as I am with Respironics, so I could be wrong. If you want me to, I can post that question on my cpap message board and find out for you.  And remember: If the mask isn't comfortable, there are lots of other choices, and you'll probably want to get a full face mask when your insurance will pay for it (or you can buy one out of pocket online) so that when you're sick, you won't have to go without CPAP.


----------



## imfree

Hi Lilly, it looks like you're doing well with your CPAP and I'm
very proud for you.


----------



## LillyBBBW

imfree said:


> Hi Lilly, it looks like you're doing well with your CPAP and I'm
> very proud for you.



Thanks Edgar! Things seem to be going very well so far.


----------



## BigBeautifulMe

That's great, Lilly! Sounds like you have everything under control.  Now, if the manual you have doesn't tell you how to access that data, let me know. There's a separate clinician's manual that most DMEs don't give to patients that explains how EVERYTHING works. You can usually buy copies of these on eBay, or, alternately, I can get you any information you need from users on the cpaptalk.com message board (or, of course, you could always go post yourself! ) And it's ALWAYS a good idea to have a spare mask. I'd give yourself at least a couple of weeks with this one first, though, just to make sure you like it, before you buy another one just like it.  Just my two cents. 

It's great that your insurance company rents your machine - that way if you decide you want another one (though the only "step up" for you would be an auto-adjusting one) you can just trade it in without quite as much hassle. 

And did your DME tech mean to contact your insurance company? I don't understand why he told you that, but whatever. As long as you get the masks you need.


----------



## LillyBBBW

BigBeautifulMe said:


> That's great, Lilly! Sounds like you have everything under control.  Now, if the manual you have doesn't tell you how to access that data, let me know. There's a separate clinician's manual that most DMEs don't give to patients that explains how EVERYTHING works. You can usually buy copies of these on eBay, or, alternately, I can get you any information you need from users on the cpaptalk.com message board (or, of course, you could always go post yourself! ) And it's ALWAYS a good idea to have a spare mask. I'd give yourself at least a couple of weeks with this one first, though, just to make sure you like it, before you buy another one just like it.  Just my two cents.
> 
> It's great that your insurance company rents your machine - that way if you decide you want another one (though the only "step up" for you would be an auto-adjusting one) you can just trade it in without quite as much hassle.
> 
> And did your DME tech mean to contact your insurance company? I don't understand why he told you that, but whatever. As long as you get the masks you need.



He was referring to the distribution company that is renting me the machine. He said that they would be able to tell me what I need to do and what cost is involved if any. I'm going to take your advice and wait on the mask. The mask seems fairly comfortable but I believe I am over zealously strapping it on too tight fearing that air will escape. I need to be a little less intense.


----------



## Ho Ho Tai

LillyBBBW said:


> Yes, it was that kind of morning.  It's a song I haven't heard in ages. I was surprised I still remembered it but it was the first thing that popped into my head when I ripped off the mask and noted how open my sinuses were.



Lilly - MPR in the background as I peruse the board. A fragment from Porgy & Bess caught my ear and I realized that it would be the perfect response.

*"One of these mornings
You're going to rise up singing
Then you'll spread your wings
And you'll take to the sky"*​
Sing all you want to, gal, but don't fly off too far!


----------



## LillyBBBW

*takes a deep breath* I'm almost afriad to post this because I fear I'll jinx it.

Sunday morning was a good morning. Usually in the afternoon I become so drowsy that I have to go back to bed. By 12:30 I felt the heavy load of extreme drowsiness coming over me. I was a little disappointed but I fixed up the CPAP and took the usual nap which almost accounts to me sleeping the whole day away. I woke up four hours later, pittered around and then took to my usual bedtime. Usually I fall dead asleep immediatley but this time it took a while to finally doze off.

Today at work I looked at my watch at 11:30 and felt fine. 1:30, still alert. 3:00 is the close of the day for me and I hadn't had a single episode of falling asleep or wanting to close my eyes and nap.  I left work and took the subway home, did not fall asleep in the subway nor did I feel the urge to. It is now 7 p.m. and I've felt not a stitch of drowsiness ALL DAY!!  There needs to be a YIPEE icon. :bounce: I called my mother, my sister - I'm just so happy.  I hope I'm not making everybody sick by talking about this all the time but I'm just so happy, I feel an episode of deep weeping sobs of relief coming on. 

I just had to tell someone.


----------



## Violet_Beauregard

Lilly you should be very happy and we are happy for you..... you should feel free to post whatever you would like to. We will always celebrate with you!!


----------



## Miss Vickie

Lilly, I'm so glad you're doing so well with the CPAP. That is marvelous news!


----------



## LillyBBBW

Violet_Beauregard said:


> Lilly you should be very happy and we are happy for you..... you should feel free to post whatever you would like to. We will always celebrate with you!!



I feel like I've hijacked your thread, Vi. If I could rep you a zillion trillion times I would. Thank you so much for starting this thread. :wubu: :happy: :blush::bow: :kiss2:


----------



## BigBeautifulMe

*does the happy dance for Lilly* Isn't it an AMAZING thing? People in my family don't get why I'm so "uptight" about CPAP - they don't understand how life-changing it truly is when it all comes together.


----------



## Violet_Beauregard

Don't you dare feel like that!! You are absolutely welcome to post anything you want here!! This thread helped me....and that's what it's here for.... to help other new CPAP users.... You are very welcome!! 

Thanks for the reps! 

(((( Lilly ))))






LillyBBBW said:


> I feel like I've hijacked your thread, Vi. If I could rep you a zillion trillion times I would. Thank you so much for starting this thread. :wubu: :happy: :blush::bow: :kiss2:


----------



## missaf

missaf said:


> After about a month, you might notice some increased air volume while you're singing, too


 

See, I told ya so


----------



## LillyBBBW

missaf said:


> See, I told ya so



Thanks for that Missaf. I knew someone had mentioned it but I couldn't quite remember who. I already notice a small difference and it has only been three days. 

I'll tell you a little secret. I've had this strange fatigue that has plagued my singing for years. I could see it whenever I watched playbacks of my performances and I could never get rid of it. No matter how much I practiced or how long I've been at it I always looked like an amateur. There was a 'sluggishness' to me that wasn't present in others that I'd observed. As the years have gone on it has gotten a bit harder to mask. There was just something about my breathing and physical capability that belaboured the process and made me look and sound like I was dragging a plow behind me in the dirt. 

I haven't done any singing in months and was near ready to quit altogether because I had gotten so tired of it. It became a chore. I've spoken repeatedly of quitting for years now. Fatigue was squeezing the joy right out of it but somehow I knew that if I quit I would be miserable and regret it so I have been sticking it out. I hadn't told anyone this but I was planning on quitting in September and seeking out other interests. I just felt that I had gone as far as I could go and that this was the best I could do and it was time to stop. It's too early to tell yet. I may still quit in September but I'm beginning to suspect that apnea has robbed me of a whole lot more than just a good night's sleep.


----------



## Happy FA

Lilly:

I'm so excited and happy for you. Your experiences are very similar to mine when I got the machine. The changes were immediate and profound. 

For me what came back first and most obviously were my abilities to do higher level creative thinking and to organize my thoughts in my head. The other thing it allowed me to do was to go back to the gym and work out. Prior to that I had been so tired that the thought of going to the gym and exhausting my body further would have knocked me out for days.

On the tightening of the mask. Everyone initially tightens the straps too much. The seal is usually better if you don't snug it down too much. You have to play with it yourself by loosening it until it fits right for you. However, if when it's on it feels tight on your face and head, it's too tight. Counterintuitively, tighter gives a worse seal then a bit looser. I'm sure you'll get it right since you're open to enhancing your experience.

I don't know whether you will give up singing or not, but I suspect that you'll find that your experience of singing will change with the changes in your body due to it being more rested. It took your body a long time to reach the rundown, exhausted state that it operated in the last few years that your sleep apnea robbed you of your energy and focus. It will take some time until the sleep debt and its debilitating longer term effects start to fade away. While the changes that you'll notice will be more subtle than those you've noted already, they will continue for some time. From time to time you'll probably realize that something you've come to know for a long time which related to being tired or fuzzy mentally no longer exists and you're doing things you would never have considered attempting without even thinking about it. 

After I had a similar experience 11 years ago I've been like all converts and zealously urge others with sleep apnea to get treatment in the hopes that they can share the same amazing experience of reclaiming one's life and living it with both eyes open and brain sharp and focused. It sounds like you've got the relief, now with your newly refreshed mind and rested body look around you and see how many others are staggering through life fighting bodies that never get any quality rest.


----------



## Zandoz

Lilly, happy is contagious. It makes me happy to hear about your happiness. There's something wrong with someone who would be upset at you expressing and spreading yours around.


----------



## Violet_Beauregard

Lilly.... update?? How's the machine?? Even more improvements?


----------



## LillyBBBW

Eh, it's been an odd mix of things. Most definitley the CPAP has made an immediate difference. I no longer fall asleep during the day. I never realized how truly bad it was till now that it's gone. I still however have the general body fatigue and the 'habit' of falling asleep. I noticed that I ride the train and feel the urge to close my eyes, shut down and doze simply because it's what I'm used to? No dice though. The day at work seems to drone on endlessly because I usually spent most of it in a fog of numbing half sleep but now I'm totally alert and aware and it takes some getting used to. 

Last night I got 4 hours sleep. I had a long late day and had to get up at the buttcrack of dawn for work as usual. I'm tired but not sleepy if that makes any sense. I'm still not dozing, not like I used to. Again, I had no real understanding for how bad I was till now. 

I cleaned the CPAP attachments and humidifying module yesterday and it turned out to be a lot easier than I envisioned.


----------



## Violet_Beauregard

Well, it sounds like you are improving. I think with regular use, that general body fatigue will improve. And you will probably lose that falling asleep habit. 

Why only 4 hours of sleep? Cause you had to get up early, or do you just not sleep longer than that? Maybe that will improve as well.... you will get 5 or 6 and that will take care of the body fatigue. 

I'm so glad it's working for you....  


Me, on the other hand, I still don't see any great improvement. I'm definitely used to the mask and the machine. I don't have the nodding off during the day, but still am tired a lot. Honestly, I don't think the CPAP has done me any good at all, but I'm sticking with it. Maybe one of these days it will catch up with me and all of a sudden I'll feel like a million bucks! LOL






LillyBBBW said:


> Eh, it's been an odd mix of things. Most definitley the CPAP has made an immediate difference. I no longer fall asleep during the day. I never realized how truly bad it was till now that it's gone. I still however have the general body fatigue and the 'habit' of falling asleep. I noticed that I ride the train and feel the urge to close my eyes, shut down and doze simply because it's what I'm used to? No dice though. The day at work seems to drone on endlessly because I usually spent most of it in a fog of numbing half sleep but now I'm totally alert and aware and it takes some getting used to.
> 
> Last night I got 4 hours sleep. I had a long late day and had to get up at the buttcrack of dawn for work as usual. I'm tired but not sleepy if that makes any sense. I'm still not dozing, not like I used to. Again, I had no real understanding for how bad I was till now.
> 
> I cleaned the CPAP attachments and humidifying module yesterday and it turned out to be a lot easier than I envisioned.


----------



## LillyBBBW

I had a big day yesterday. My sister's baby shower was that day and I helped carry all her baby booty from the shower up the stairs which took three cars to deliver it all. Then I had laundry to do which took forever to dry and fold. I've been enforcing the habit of getting at least 7 hours of sleep with CPAP but this was an extreme circumstance.

Vi before I went in the direction of apnea I joined a gym and started weight training thinking that lifting weights would make me stronger and help my symptoms. It didn't, but it improved a whole lot of other stuff despite wearing me out. Maybe something like that or even 10 minutes of yoga or some body stretches will help you with the tiredness? It wouldn't be worth the bother without CPAP but it may take some of the edge off of the tiredness. Also I take tons of vitamins. Expensive habit but worth it for me.



Violet_Beauregard said:


> Well, it sounds like you are improving. I think with regular use, that general body fatigue will improve. And you will probably lose that falling asleep habit.
> 
> Why only 4 hours of sleep? Cause you had to get up early, or do you just not sleep longer than that? Maybe that will improve as well.... you will get 5 or 6 and that will take care of the body fatigue.
> 
> I'm so glad it's working for you....
> 
> 
> Me, on the other hand, I still don't see any great improvement. I'm definitely used to the mask and the machine. I don't have the nodding off during the day, but still am tired a lot. Honestly, I don't think the CPAP has done me any good at all, but I'm sticking with it. Maybe one of these days it will catch up with me and all of a sudden I'll feel like a million bucks! LOL


----------



## Violet_Beauregard

Ah... so the 4 hours was an extreme... OK... Yeah, I need at least 7 hours myself, or I'm a zombie. 

I've recently started taking a multivitamin in hopes that it will help me all around. Now that the weather has improve, I'm going to try going for a walk a few times a week. I'm hoping that between the two, it will make a difference. Sometimes getting the blood really pumping is what we all need! 






LillyBBBW said:


> I had a big day yesterday. My sister's baby shower was that day and I helped carry all her baby booty from the shower up the stairs which took three cars to deliver it all. Then I had laundry to do which took forever to dry and fold. I've been enforcing the habit of getting at least 7 hours of sleep with CPAP but this was an extreme circumstance.
> 
> Vi before I went in the direction of apnea I joined a gym and started weight training thinking that lifting weights would make me stronger and help my symptoms. It didn't, but it improved a whole lot of other stuff despite wearing me out. Maybe something like that or even 10 minutes of yoga or some body stretches will help you with the tiredness? It wouldn't be worth the bother without CPAP but it may take some of the edge off of the tiredness. Also I take tons of vitamins. Expensive habit but worth it for me.


----------



## LillyBBBW

Let us know how it goes, that may be the culprit. It takes a little while to see results with vitamins.



Violet_Beauregard said:


> Ah... so the 4 hours was an extreme... OK... Yeah, I need at least 7 hours myself, or I'm a zombie.
> 
> I've recently started taking a multivitamin in hopes that it will help me all around. Now that the weather has improve, I'm going to try going for a walk a few times a week. I'm hoping that between the two, it will make a difference. Sometimes getting the blood really pumping is what we all need!


----------



## Tad

Violet_Beauregard said:


> Ah... so the 4 hours was an extreme... OK... Yeah, I need at least 7 hours myself, or I'm a zombie.
> 
> I've recently started taking a multivitamin in hopes that it will help me all around. Now that the weather has improve, I'm going to try going for a walk a few times a week. I'm hoping that between the two, it will make a difference. Sometimes getting the blood really pumping is what we all need!



The other thing about taking walks is: never underestimate the power of the sun. It helps regulate our internal clocks, and apparently these days most north americans are not getting enough vitamin D--we are inside so much, and when we go outside we slather on the heavy sun screen. It takes a moderately intense sun to make vitamin D, so the farther north you are the less of the year/day is bright enough to make a difference.

Best of luck!

-Ed


----------



## Violet_Beauregard

I will!



LillyBBBW said:


> Let us know how it goes, that may be the culprit. It takes a little while to see results with vitamins.




I despise exercise, so doing this will be a big step (literally, LOL) for me... I'm hoping it helps!





edx said:


> The other thing about taking walks is: never underestimate the power of the sun. It helps regulate our internal clocks, and apparently these days most north americans are not getting enough vitamin D--we are inside so much, and when we go outside we slather on the heavy sun screen. It takes a moderately intense sun to make vitamin D, so the farther north you are the less of the year/day is bright enough to make a difference.
> 
> Best of luck!
> 
> -Ed


----------



## LillyBBBW

Well, I'm definitely better off now than I was almost two weeks ago. I can feel a difference even though my sleep habits this week have been less than stellar. I feel much better but I'm not at the point where I feel like running barefoot through the daisies like I felt the first two days of using CPAP. I usually have no difficulty falling asleep but last night especially falling asleep seemed a bit harder to accomplish. Not only that but I was more aware of the mask on my face last night than any other night and at one point I took the mask off to go to the bathroom and forgot to put it back on - slept with it off for about an hour or so before I woke up again and replaced it. I'm less tired yet still a little fatigued though not as much as before. 

I'm thinking of returning to the gym next week. I've stopped temporarily because I wanted to focus on the CPAP regimine and didn't want to over do it. I think I'm coming to the point now where it's safe to incorporate exercise back into my routine. Last nights fitful sleep made me glad that I've held off on the exercise. I'm still struggling to regulate a sleep pattern around CPAP.

I do notice I'm very achy during the day around my neck and my back has been acting out too. I had a pinched nerve that caused some surface numbness in my thigh yesterday and I beleive it's due to the strange sleep positions i've been finding myself in trying to get used to the mask and the tubing draped all around. Has anyone else expereinced anything similar? I think I'm having aparatus dysfunction.


----------



## BigBeautifulMe

Lilly,
What you describe is actually common. There's a "good" reason behind it, though. When you have apneas, and you're constantly waking up, you're constantly changing positions, and so you don't sleep in the same position for very long. When you're sleeping through the night, you're not changing positions as many times, and so muscles have a chance to get sore. I've experienced the same thing, as have many, many others.  

Also, if it's JUST your upper back and neck, it can be the fact that you're holding your neck and head in a strange position while you're sleeping in order to keep pressure off the cpap mask and keep it from leaking. In that case, possible solutions include a pillow that will help you do that, or a different mask. I know I used to experience this a lot before I got the nasal pillows I currently have, as I am a side/tummy sleeper, and mosts masks don't handle tummy sleeping very well. Pillows that can help take some of the pressure off the mask include the Shapeable Pillow from Target (availble online or in-store). People report this allows them to create little "divots" for the mask so that there's no pressure on it. If that doesn't work, there's the more expensive pillow that's made specifically for cpap users - the papillow. This one actually has cut outs in the sides of it so that you can hang your mask off while still supporting your head and neck. This one can be found here: http://www.papillow.com/ . I have the double-edged one myself, and I use it when I have a cold and have to sleep with a full face mask.

ETA: As I've told Violet on this thread before, hanging my hose up above my head keeps it out of the way at night and saves my life! LOL. I used to hate fighting with it. I think I've already put some ideas here somewhere on how to do that, but can repost again if you like. 

Hope some of this helps! And stick with it!  You're doing great!


----------



## Zandoz

LillyBBBW said:


> Well, I'm definitely better off now than I was almost two weeks ago. I can feel a difference even though my sleep habits this week have been less than stellar. I feel much better but I'm not at the point where I feel like running barefoot through the daisies like I felt the first two days of using CPAP. I usually have no difficulty falling asleep but last night especially falling asleep seemed a bit harder to accomplish. Not only that but I was more aware of the mask on my face last night than any other night and at one point I took the mask off to go to the bathroom and forgot to put it back on - slept with it off for about an hour or so before I woke up again and replaced it. I'm less tired yet still a little fatigued though not as much as before.
> 
> I'm thinking of returning to the gym next week. I've stopped temporarily because I wanted to focus on the CPAP regimine and didn't want to over do it. I think I'm coming to the point now where it's safe to incorporate exercise back into my routine. Last nights fitful sleep made me glad that I've held off on the exercise. I'm still struggling to regulate a sleep pattern around CPAP.
> 
> I do notice I'm very achy during the day around my neck and my back has been acting out too. I had a pinched nerve that caused some surface numbness in my thigh yesterday and I beleive it's due to the strange sleep positions i've been finding myself in trying to get used to the mask and the tubing draped all around. Has anyone else expereinced anything similar? I think I'm having aparatus dysfunction.



If you have not found a combination of equipment and positioning that is not causing interference, then that may well be the issue. Getting that "just right" combination frequently takes trial and error. 

Also, you may well be like me...you may have the need to move periodically to keep stiffness and such from setting in. Every once in a while, if I'm really drained, I'll sleep through all or a good part of the night without changing positions...when I do go to move or try to get up, I'm so stiff I can hardly move, sometimes to the point of muscle cramping. I've had it take an hour or more to get up, moving a bit at a time, when the stiffness and/or cramps were bad.


----------



## LillyBBBW

It was sitting on the table and I somehow moved the wrong way and the tubing pulled it forward and it fell on its nose, spilling water all over the place. I unplugged it, sopped up all the water and prepared myself for work as usual. When I got home and tried to use it the latch wouldn't stay closed. It kept popping open and air was spilling out all around and never concentrating into the tube. I tried to see if I could fix it but no dice. It's broken.  

I taped it shut and used it anyway. This morning I called the company and somebody is going to bring me a new one on Tuesday. *sigh* I was really hoping this would all be as low maintenence as possible. I hope they don't give me hard time about the tape.


----------



## BigBeautifulMe

Aww, Lilly, sorry to hear that  I can tell you right now all of us have done that at some point (yanked it off the nightstand by accident). I actually used to do that frequently, until I hung the hose up above my head. That keeps the tubing from yanking on the machine. I hope they don't give you a hard time about the machine.


----------



## Zandoz

LillyBBBW said:


> It was sitting on the table and I somehow moved the wrong way and the tubing pulled it forward and it fell on its nose, spilling water all over the place. I unplugged it, sopped up all the water and prepared myself for work as usual. When I got home and tried to use it the latch wouldn't stay closed. It kept popping open and air was spilling out all around and never concentrating into the tube. I tried to see if I could fix it but no dice. It's broken.
> 
> I taped it shut and used it anyway. This morning I called the company and somebody is going to bring me a new one on Tuesday. *sigh* I was really hoping this would all be as low maintenence as possible. I hope they don't give me hard time about the tape.



Something simple that came to mind that might help prevent this from happening again. Velcro. They make those stick on pads...and they make Velcro strips with a hole in one end for tying up extension and computer cords. Loop one of the strips around the hose, near the unit, then stick the "tail" to one of the pads fastened to the shelf. I used a similar approach once for a troublesome computer cord that kept getting yanked and putting the equipment in peril.


----------



## Ho Ho Tai

LillyBBBW said:


> I taped it shut and used it anyway.



Was that nasal duct tape?


----------



## LillyBBBW

Ho Ho Tai said:


> Was that nasal duct tape?



*groans* You silly.  I taped the lid down with clear packing tape. I keep rolls of it around and happend to have just purchased a new roll to reinforce the areas around my window unit AC. Good stuff! Not as strong as Duct tape but much more attractive.


----------



## Violet_Beauregard

Hey Lilly! What's up lady? How's the mask and machine? Did you get your replacement? Did they give you a hard time with it? Any more improvements?


----------



## LillyBBBW

Violet_Beauregard said:


> Hey Lilly! What's up lady? How's the mask and machine? Did you get your replacement? Did they give you a hard time with it? Any more improvements?



They never showed up.  I blew off a night at the opera to wait for these jokers and they never showed so I'm still using the old CPAP with tape over it every night. I just haven't had the time to call them again because I had something going on every night and couldnt be around. 

I'm having a hard time witht he mask. Last week on Friday my top lip was cold and numb all day because of the tightness of the mask at night. I sleep on my side or my stomach so the pillow mashes the mask into my face causing the fatigue trauma. I wake up to the mask whistling in my eye sometimes. I'm going to call again this week and mention the mask issue so we'll see how it goes.

I slept at my parents Friday night and brought my CPAP with me. I wrestled with the mask and hose all night long.  Last night when I got home I was so tired I fell right to sleep and didn't feel like pulling the CPAP out of the case so I slept without it. Slept all day today without it too and I definitley feel the difference. I feel like a punch drunk prize fighter.


----------



## imfree

WOW!, Lilly, I hope you get that mask situation resolved soon. I've "limped" on a bad mask, myself, a couple times and could hardly stand it until 
the new one arrived.


----------



## BigBeautifulMe

Sorry to hear that, Lilly.  I'm a stomach/side sleeper also, and the only mask I've found to be truly comfortable (mash your face in the pillow comfortable) is the Invacare TwilightNP. It's not perfect (it requires "tweaking" a little with a leg of pantyhose and/or a couple of rubber bands) but once you get it right (and it only took me a couple of nights to figure out how it fit best) it's amazing. I got mine here: http://www.cpap.com/productpage.php?PNum=1717&PAID=215


----------



## Violet_Beauregard

Awwweee Lilly.... what a shame! Definitely make a point of calling and getting both devices resolved. You were doing so good!! You need to get back on track! 

Come back with reports!!


----------



## LillyBBBW

Well one thing is for certain, the CPAP is definitley working. I slept with it last night and feel much better today than I did yesterday. I am really thinking I need to get rid of this mask though. Too much leakage and whistling in my eye. I thought my eyeball was going to pop out at one point. I'm calling the CPAP people today.


----------



## Violet_Beauregard

Yeah, I think you definitely need to get that mask corrected.


----------



## LillyBBBW

I just called them ten minutes ago. I'm supposed to bring the machine back on Thursday and they will swap out the machine and the mask so we'll see what happens.


----------



## Violet_Beauregard

YAY!! A light at the end of the tunnel!! I'm glad you called....


----------



## LillyBBBW

SHAZZAM!!! I went to see the people at the sleep place. the guy swapped out my faulty CPAP part and also gave me a brand new nasal pillow system. HUGE improvment!! I slept like a baby last night with no interruptions. I didnt wake once.  I do think the thing is a bit noisier than the old mask. You can really hear the air hissing out of the vents in the front. Despite that I do feel that I'm getting optimum pressure from this new mask with little to no irritation. I LOVE IT!!  And he gave me an extra filter when I asked for it. yay!

http://www.cpap.com/viewImage.php?PNum=2485&Image=mirage-swift-ii.jpg


----------



## Zandoz

Congrats on another big step.


----------



## Tad

LillyBBBW said:


> I slept like a baby last night with no interruptions.



Awesome! Nice to hear when things work out.

Hey, does anyone have a picture of what these 'masks' look like? My mental picture is sort of like the anesthesia masks they use in hospitals, but i'm sure they arean't as extensive as that.

-Ed


----------



## Zandoz

edx said:


> Awesome! Nice to hear when things work out.
> 
> Hey, does anyone have a picture of what these 'masks' look like? My mental picture is sort of like the anesthesia masks they use in hospitals, but i'm sure they arean't as extensive as that.
> 
> -Ed



The styles are widely varied. cpap.com is a good place to check out a variety of what's out there.


----------



## imfree

Wow!, that's awesome, Lilly!

Here's a picture for Edx. It's a picture of my nose-only Comfort Gel
by Respironics.


----------



## Tad

imfree said:


> Wow!, that's awesome, Lilly!
> 
> Here's a picture for Edx. It's a picture of my nose-only Comfort Gel
> by Respironics.



wow, is that as small as it looks?

-Ed


----------



## imfree

edx said:


> wow, is that as small as it looks?
> 
> -Ed



The Comfort Gel is reasonably small, the main body of the mask
is about 3" tall.


----------



## LillyBBBW

Oop! Ed I'm just about to skitter out of town for the weekend. when I come back I will paste up a picture of me with my sleep snorkel on.  Edgar, you charm me with your cpap bedroom gaze. :batting: 

Have a great weekend everybody!


----------



## imfree

LillyBBBW said:


> Oop! Ed I'm just about to skitter out of town for the weekend. when I come back I will paste up a picture of me with my sleep snorkel on.  Edgar, you charm me with your cpap bedroom gaze. :batting:
> 
> Have a great weekend everybody!



Hahaha!!!, Lilly, there'll never be another CPAP/BiPAP mask again!!! From
now on, they are all sleep-snorkels! Congratulations, Lilly, you've invented
a great new word! Thank you ever so much for the kind comment about
my charming sleep-snorkel bedroom gaze, LOL.


----------



## Violet_Beauregard

YAY! That's what I use... I don't think I could take the full face mask, but I supposed it's all in what you can tolerate.  Congratulations!!





LillyBBBW said:


> SHAZZAM!!! I went to see the people at the sleep place. the guy swapped out my faulty CPAP part and also gave me a brand new nasal pillow system. HUGE improvment!! I slept like a baby last night with no interruptions. I didnt wake once.  I do think the thing is a bit noisier than the old mask. You can really hear the air hissing out of the vents in the front. Despite that I do feel that I'm getting optimum pressure from this new mask with little to no irritation. I LOVE IT!!  And he gave me an extra filter when I asked for it. yay!
> 
> http://www.cpap.com/viewImage.php?PNum=2485&Image=mirage-swift-ii.jpg


----------



## Mrs Ho Ho

It's past time I post to this thread, although I don't have much new to offer - there has been so much good info on here already. I've had my cpap for 5 years. I did not experience the instant relief. I did get much less sleepy during the day, which was a relief! The main difference I've noticed is that I feel better when I wake up. I used to wake up groggy and headachy all the time, and would feel better within a couple of hours. With the cpap that's gone. Hurray!

My main problem is that I take it off at night and am not really aware of doing so. I'll wake up to go to the bathroom and realize it is off. Or my poor husband will try to get me to wake up enough to put it back on. I'll say sure, and fall asleep before I even reach out to get it - and have no memory of any of this in the morning. Plus I believe I may be a bit on the cranky side if I am woken in the middle of the night.  

I have other mostly minor irritations, but it does enough good I put up with them. I struggle with the humidifier - especially as the seasons change it is hard to keep enough humidity so my nose doesn't dry out, but not so much I get rainout. Plus I am a stomach sleeper, but whenever I tried that with my cpap I got aerophagia (sp?). That was enough to convince me I needed to learn to sleep on my back! But I have adapted and that doesn't bother me.

I can get by without my cpap, although it depends. Last year I was doing a number of overnight trips - and stopped bringing my cpap if it was just one night. Especially when the security people started checking it for explosives every time I carried it on!

Hmm. Hard to compress 5 years experience in one short post!


----------



## Violet_Beauregard

Hi Mrs. Ho Ho!

Well, I sure glad your CPAP is working for you. I'm still wearing mine, but quite honestly, I just don't feel any different whether I wear it, or not. Periodically, if I just don't feel like dealing with it, I'll skip one or two nights, and I feel absolutely no difference without it. I sincerely, don't think I'm getting anything from it. If anything, I get a better nights sleep without it! I'm not dealing with the nasal pillows or tubing. 

I go back to my Doctor in August, and I'm going to talk with her about it more, and see what she thinks, but I may just stop using it. Why bother and lose more sleep if it's not making a difference?

I'm so glad the CPAP has worked out for everyone else who's posted here. I only wish it was making a difference for me!


----------



## Mrs Ho Ho

Violet,

I'm sorry your CPAP isn't doing much good for you. I thought I'd comment on one aspect of the good night's sleep. I used to think I was a good sleeper. I was asleep within ten seconds of my head hitting the pillow. I almost never woke up during the night. I could fall asleep any time any where. When I got my cpap I struggled to adjust to it. It took me longer to fall asleep and I woke up a lot more often during the night. So it didn't seem as if I slept any better.

What has been interesting to me is how much better (or maybe less bad) I feel during the day with the cpap than without. So the sleep I do get at night is better quality. Sounds weird but seems true. When I had my sleep study they also indicated that I got very little REM sleep. And I also noticed that with the cpap I started dreaming a lot more. And had a lot more vivid dreams. In fact sometimes I think the dreams impact my use of the cpap. I have woken up and been aware that I was dreaming some complicated thing that meant I shouldn't have my cpap on. Some small part of my brain knows this is wrong, but it can't override the dream. I will need to get up and walk around for a few minutes to wake up sufficiently to be aware that I was in a dream and really should have the cpap!


----------



## LillyBBBW

Great to finally see you chiming in Mrs. Ho Ho!  I was trying to wait before I posted so that I could give my newly acquired sleep snorlkel a try. I can honestly say that I get a better sleep now than before CPAP but it is not the miracle cure I had hoped. The first time with using it I felt infinitley better, like something miraculous had occured. Then it seemed I settled back into a midway feeling of tiredness. I still wake up a little sluggish and still get sleepy during the day but not NEARLY as bad as before CPAP. I went to sleep one night without it and could really feel the difference but I still have some tiredness and fatigue during the day. I am hoping that as time goes on I will slowly improve.


----------



## imfree

Hey, Lilly, I'm just DYING to see a picture of your sexy
sleep-snorkel bedroom gaze!!! HUGGZZ


----------



## BigBeautifulMe

Violet, you may not SEE the benefits, but they're there. Damage to your internal organs is slowly being reversed - but you do even more damage when you sleep without it again. All you're doing by going without it is prolonging the time it takes for you to start to feel good. It's counterprodcutive. It's actually pretty common to feel more tired at first, but as I've said, you won't see the visible benefits until you start using it all night, every night. Keep up with it - don't give up. And if you can figure out what about your treatment is uncomfortable for you (if any of it is), I can always give you some great suggestions that should work. Don't give up.


----------



## Violet_Beauregard

Thanks BBMe.... I sooo appreciate that.... I think I just needed a little pep talk.... I'm keeping up with it, but I just get so discouraged. I'll surely make the effort to use it every night.... I'll pay close attention too, so see what exactly is my issue...what's really bothering me about it. 

Thanks!! You're great!!

Hugs,
Vi




BigBeautifulMe said:


> Violet, you may not SEE the benefits, but they're there. Damage to your internal organs is slowly being reversed - but you do even more damage when you sleep without it again. All you're doing by going without it is prolonging the time it takes for you to start to feel good. It's counterprodcutive. It's actually pretty common to feel more tired at first, but as I've said, you won't see the visible benefits until you start using it all night, every night. Keep up with it - don't give up. And if you can figure out what about your treatment is uncomfortable for you (if any of it is), I can always give you some great suggestions that should work. Don't give up.


----------



## BigBeautifulMe

That's what I'm here for.  I never would've gotten through the first six months of my treatment without other supportive people.  I'm just paying a little back.


----------



## LillyBBBW

Ok, granted CPAP pictures aren't the most flattering pics one can take, in the interest of science and the common good I'm going to post these pictures of myself seated among the carnage and chaos that is my bedroom and art studio all rolled into one.






Here is a picture of the new nasal pillows that I got a few weeks ago. It's really just a roll of plastic with nasal plugs on it, wrapped around a tube with a barrette that secures it. Air escapes from the barrette that allows you to breathe out I'm told.





Here I've pressed my finger against the nasal pillow portion so that you can see that the pillows are not actually hard plastic but soft flexible plastic meant to mold securely yet gently to your nose. I wipe them down with Lysol wet wipes in between cleanings. They come in three sizes: small, medium and large. These are a medium.





Here's me with the apparatus on my face. The pillows shove right up your nose just as you would imagine and the whole thing is held in place by an adjustable harness, the blue straps you see going 'round the back of my head. There are buckles in the back that you can use to adjust the tightness to your liking.





Here's me lying down with the nasal pillows pointed outward so you can see just how the thing lines up.





And here's me again with them in. If you squint past my 'thumbs up' hand you can see the actual CPAP sitting there on the table with the hose coming out and leading to my new sleep snorkel. Now that you see the whole shebang you can understand why I call it a sleep snorkel. ​


----------



## imfree

Wow Lilly, your cute sleep snorkel smile has my sexy sleep
snorkel bedroom gaze beat, hands down!!!


----------



## BigBeautifulMe

Great pics of the Swift, Lilly!  I'd show you photos of me and my Aura, but I've modified it so much it's barely recognizable! LOL

BTW, if the buckle in the back of your head on the Swift bugs you, I remember seeing a thread on my cpap forum about helping to make that more comfortable. I'd be happy to find that for you if you like.


----------



## LillyBBBW

BigBeautifulMe said:


> Great pics of the Swift, Lilly!  I'd show you photos of me and my Aura, but I've modified it so much it's barely recognizable! LOL
> 
> BTW, if the buckle in the back of your head on the Swift bugs you, I remember seeing a thread on my cpap forum about helping to make that more comfortable. I'd be happy to find that for you if you like.



I don't think I need it for now BBM.  I wasn't hugely uncomfortable but I was slightly disturbed with how tight I have to strap the thing on in order to keep it in right. After I took those pictures I was inspired to do a little extra inspecting and noticed that the nasal pillow is not straight but slightly curved.





I realized that I was affixing the nasal pillows to my face backwards. It was such a subtle thing that I hadn't even noticed it before. I popped out the ends, turned it around, reattached and it made a HUGE difference. I don't need as much tension to get the nasal pillows to feel secure. Now it actually contours to my face instead of bumping up against my nose. Much more comfortable. At this point there's no need to go out of your way to locate the strap info but if anything else arises I may just bug you for it in the future.


----------



## Violet_Beauregard

Lilly that's the same thing I have! I couldn't imagine the whole face mask, but I'm sure it's better for some. If I HAVE to do this CPAP thing, I'm happy to have the nasal pillows rather than the whole mask. 

So now we can be twins with our nasal pillows! 

I'm so glad it's working for you better. Hopefully you'll be more comfortable when sleeping and can take advantage of the good the whole system is doing for you!

YAY Lilly!!


----------



## Tad

LillyBBBW said:


> Ok, granted CPAP pictures aren't the most flattering pics one can take, in the interest of science and the common good I'm going to post these pictures of myself seated among the carnage and chaos that is my bedroom and art studio all rolled into one.



Lilly, as usual, you are awesome. I think that may be really helpful to anyone thinking they may need a CPAP but who are envisioning a Darth Vader mask! And I totally can see why you call it a sleep snorkel, it does look like that.

I just hope I never end up needing one, because with how little air I can usually take in through my nose I'm sure I'd have to use the whole face model. *sigh*

-Ed


----------



## BigBeautifulMe

Someone PMed me this question, and told me I could repost it here so that everyone could benefit from the answer.

Here's the question:


> I've been on CPAP a year and a half and am at 13. My apnea is mild and the sleep studies showed hypopnea more than apnea. The other night I woke up gasping for air with the CPAP on. The seal on the mask was good and there was no leaking.
> 
> Any ideas why this would happen? Does my pressure need to be increased? Could it be from having my mouth open and not knowing? Any ideas you have would be appreciated.



Yes, gasping for air can indeed be indicative of "breakthrough apneas," apneas that still happen despite treatment. If it happens frequently, that can definitely be indicative of a need for higher pressure. 

However, mouth breathing itself can be a cause of breakthrough apneas, and it sounds quite possible that you were indeed breathing through your mouth. If you're leaking treatment air out of your mouth, it is not keeping your airway open as it is supposed to, and your airway closes, causing apneas. Some signs of frequent mouth breathing include dry mouth (even with humidifier use) and sore throat.

If I were you (and remember, again, I'm not a doctor or a health professional, just another user like you ) I would start by addressing the possible mouth breathing. If that doesn't work and you're still finding yourself having signs of apnea (waking up with your heart racing, dreams of drowning, etc) I would call your doctor and explain your symptoms and ask for a higher pressure. 

*Options for mouth-breathers:*
1) The best option is usually a *full face mask*. This covers the mouth and nose, maintaining pressure even when one breathes through the mouth. There are different brands and models of full face masks, so if one doesn't work for you, don't give up - try another.

2) If for some reason you absolutely can't get a full face mask to work for you (or if the cost of a new full face mask would be prohibitive), you can try a *chin strap*. MOST people on the forum I belong to report that chin straps just don't work, because they just keep the jaw closed - nothing prevents air from escaping through the teeth. For some people, chin straps DO indeed cause the tongue to stay in the place where it maintains a seal - but many find it does not. Additionally, people with jaw problems can have issues with these, and people whose apnea is a result of an overbite can find that the chin strap moves the lower jaw further back, resulting in more apneas. 

3) The last option for mouth breathers is one that doctors would never okay or recommend, but one that many find effective - *taping* the mouth. I know, it sounds crazy, but it works. I found that strips of Johnson & Johnson waterproof tape, 1/2", overlapped over my mouth, worked the best (turn your lips inward before applying so the tape won't take your skin off when you remove it in the morning). I also like to leave a little extra part at the end and fold it over to make a "tab" for easy removal. Now, if you ever get passed-out drunk, or if you are nauseous, have the stomach flu, etc. do NOT do this, because if you vomit while the tape is over your mouth, you could aspirate that vomit. Personally, I've never vomited WITHOUT waking up first - and if you're drunk enough to pass out, I doubt you're going to have the presence of mind to affix the tape - but it's a potential danger nonetheless. Other people have had some success with using *Polident Strips* instead of tape (they wet the strips, place them on their lips, and close their mouths) but I could never get it to work, personally. 

I hope that helps.


----------



## LillyBBBW

Air escapes through my teeth all the time and I wake up with pasty dry mouth. It's better since I switched to the nasal pillow but still there. You think that can be a sign of too little pressure? I'm supposed to make my appointment with the doctor soon according to the message on my home answering machine. I will bring this up with the doctor.


----------



## BigBeautifulMe

No, Lilly, that's a sign of mouth-breathing.  You'll just want to let your doctor know that it's happening, and (if he's worth his salt) he'll try to help you solve it (full face mask or chin strap).


----------



## LillyBBBW

*bump*

So here we are nine months later after recieving my CPAP and usig it religiously. The times I've slept without it can be counted on one hand and I've noticed a few changes. I still get tired but I think that is attributed more to my insane sleep schedule, being a musician and all the trappings that go with it. Between that and holding down a 7am-3pm job I'm just grateful to still be alive, there's only so much a CPAP can do for me. However I do feel a whole lot better. No more falling asleep on stage and behind the wheel of the car. The heart tremoring tiredness is gone.

I'm a bad girl though. I got my CPAP and gave a good suyonara salute to the folks at the sleep center. I've not been back since my sleep study though I've been beckoned quite a few times. Too many things going at once. Here are some things I've noticed since using the CPAP. I don't know if they are just random or resultant from the CPAP's effects:


30 pound weight loss
episodes of pain in the joints have all but disappeared
less morning headaches
more frequent trips to the bathroom (I barely went before)
less water retention
a twinge more pep
blood pressure reduced

I've been noticing this stuff with a variant of astonishment and complete alarm. Now I'm wondering if these all aren't the corrective results of the CPAP over time? 

The other day I fell asleep withouth the CPAP. I just crawled into bed with the intention of putting it on but I fell asleep before I could, that's how tired I was. I woke up and had this bizarre pain in my neck, my head, my arm, my back, my chest. I used to wake up with these vague pains every now and then but hadn't in a long time. I never knew what it was from but now becuase of the CPAP I recognize that it is body strain. Without the CPAP my whole body is straining to suck in air to breath at night. It feels like I have a gas bubble in my chest or my neck when I wake up but it's merely pulled muscles. Rediculous.


----------



## imfree

LillyBBBW said:


> *bump*
> ..................snipped..........................
> . I don't know if they are just random or resultant from the CPAP's effects:
> 
> 
> 30 pound weight loss
> episodes of pain in the joints have all but disappeared
> less morning headaches
> more frequent trips to the bathroom (I barely went before)
> less water retention
> a twinge more pep
> blood pressure reduced
> 
> I've been noticing this stuff with a variant of astonishment and complete alarm. Now I'm wondering if these all aren't the corrective results of the CPAP over time? .......................snipped.......................



Yep, Lilly, with people our size, changes in our bodies' 
hydration level can easily account for weight 
changes of 30 lbs. My doctor advises me to weigh 
myself weekly to help monitor my hydration. Loss of
excessive retained water could do all those things.
See what your doctor thinks. I'm not totally sure, 
but I think the lack of ability to fully expel CO2,
hypercapnia, causes water retention, too. 
Metolazone, a strong diuretic, is said to help breathing.


----------



## BigBeautifulMe

Hey Lilly,

All of those, except for one, are common benefits/side effects to continued CPAP use. Great job!!  

The only one that isn't is MORE frequent urination - in the vast majority, it's much LESS frequent. You might want to check with your doc. Maybe it has something to do with the fluid you've lost? I used to get up two times a night, now it's not at all. 

With the side effects you're happy about though, I'm SO thrilled for you! Congrats.


----------



## LillyBBBW

BigBeautifulMe said:


> Hey Lilly,
> 
> All of those, except for one, are common benefits/side effects to continued CPAP use. Great job!!
> 
> The only one that isn't is MORE frequent urination - in the vast majority, it's much LESS frequent. You might want to check with your doc. Maybe it has something to do with the fluid you've lost? I used to get up two times a night, now it's not at all.
> 
> With the side effects you're happy about though, I'm SO thrilled for you! Congrats.



I was just the opposite. I rarely went to the bathroom. Now it seems I am making normal visits. I will ask about it anyway though.


----------



## Happy FA

Lilly You're the new poster child for CPAP. You have all the positive effects that so many of us old timers have been telling people about for years. The unwillingness to sleep without the machine is another symptom of how much it's changed our lives.

I agree with BBMe that the more frequent nightime urination is unusual. I also went the other way from getting up a lot to virtually never. Must be something different that's working on you. It was explained to me that when you're sleeping there is something that your body either does or doesn't produce which takes the having to urinate system offline. 

Anyhow, great news on all the other things you've experienced. I experienced many of the same thing more than a decade ago and haven't spent much more than one or two nights without the cpap since. Truly a "don't leave home without it" commercial.

Happy FA


----------



## liz (di-va)

It's very funny - I was looking for the CPAP thread so I could ask those of you who use them: what have been the benefits of them for you? "Side benefits," people might call them, but really more direct benefits. And there is Lillly's list.

Are there any other benefits you've experienced worth nothing? I am really curious. Thanks to anybody who might have time to respond.


----------



## BigBeautifulMe

Liz,

I know I'm omnipresent on this thread, but CPAP changed my life. 

I don't sleep 18 hours a day more.
I'm not always "groggy" and out of it anymore.
My short-term memory is improving (I was untreated for decades, so it's taking a long time to come back fully, but it's getting there). 
I can think better.
I don't fall asleep behind the wheel, or in movies, or anywhere else quiet anymore.
I don't get the carb cravings I used to 24/7.
I don't get up to pee at night anymore.
I don't wake up at night anymore.
I don't have mood swings anymore.
I'm not clinically depressed anymore.
I actually have energy now.

CPAP has really and truly changed my life. That's why it's so important to me to share it with others - because I know what a huge difference it makes.


----------



## Violet_Beauregard

I love that this thread has helped so many people. 

I noticed the date my original post when I started this thread... 2/19/07... a year from tomorrow. WOW. A year. 

That said... let me give a bit of an update. 

I used my CPAP faithfully for 6 months solid. I used it under protest and with complete disgust, but I used it. At the end of those 6 months, I talked to my doctor about my progress. Or, in my case, my lack of progress. 

In the 6 months I used my CPAP, I slept worse and felt worse every day, than BEFORE I got the CPAP. Or since for that matter!

She and I discussed the entire situation... all aspects of it, and she agreed that I should not use the CPAP. She feels I probably do have Sleep Apnea, but not severly enough to need the CPAP. She said when I complained of fatigue initially, that is was probably more stress related AND I was in need of my thyroid meds being adjusted. (which they were at the time) I kind of complained about having to go thru the sleep study and get the CPAP (I had to pay a small portion of the cost) for nothing, and she said that she's not sorry she had me do the sleep study or get the CPAP. Personally, I think it was a waste of my time and money and was completely unnecessary, but... what's done is done. 

So... the CPAP wasn't for me... but again... I'm THRILLED that it's been helpful to others!


----------



## LillyBBBW

liz (di-va) said:


> It's very funny - I was looking for the CPAP thread so I could ask those of you who use them: what have been the benefits of them for you? "Side benefits," people might call them, but really more direct benefits. And there is Lillly's list.
> 
> Are there any other benefits you've experienced worth nothing? I am really curious. Thanks to anybody who might have time to respond.



My singing has improved tremendously. I'm a soloist singing a part that I never would have gotten a year ago due to tension and fatigue that sapped away from my vocal tone and stamina. Now I use merely a fraction of the effort to achieve more voice than I would have gotten singing with all my strength before.

Quicker reaction time when people try to lull me into doing things I don't want to do. Being caught off guard and then kicking myself later because my thinking wasn't sharp enough to say what needed to be said in that instant. Those incidents are happening much less than before.


----------



## Happy FA

For me, as someone who's been using CPAP for more than a decade I can point to a list of positives.

1. More energy.
2. More Mental sharpness
3. Better quality sleep.
4. Don't wake up tired unless I don't get enough sleep(and I need less)
5. Don't wake up in the middle of the night to go pee.
6. Don't doze off in boring meetings(kinda wish I would)
7. Don't fall asleep in the movies or watching tv or whenever I sit in a comfy spot
8. Blood pressure went down a bit.
9. Asthma seemed to essentially disappear.
10. Allergies seemed to recede in severity.
11. Started to dream again(would occasionally wake up in the middle of a dream-with the sleep apnea there is virtually no dream sleep).
12. No worries about dozing at the wheel.
13. Much more energy to be active and work out/play sports.
14. Not so tired that I fall asleep when I want to do something in bed other than sleep.
15. Better higher level brain functioning 
16. Much less late night eating to stay awake. 
17. Lost about 50 pounds without dieting within the first year after I got the machine(probably due to the reduction in late night eating-since eating keeps you awake and you tend to eat to keep you up).
18. Much less strain on my heart(the apnea events are essentially a shot of adrenalin to wake up your heart and body, in my case 480 times in an 8 hour sleep study).

I know there are more, but that will give a good sense of how wonderful CPAP has been for me and how it gave me back my life in important ways. The few years before I got the machine are still fuzzier than any other time in my memory.

Happy FA


----------



## liz (di-va)

Thank you so much for responding to my question...boy, oh boy, those are some lists! I want so much to get this workin for me...I may be back for help.

The things that strike me the most at the moment? Everything's crucial, but the things leaping out at me in my current mood: what Lilly said about singing (that's really amazing) and what FA said about...dreaming. I miss dreaming.

Thank you again. I don't like making promises I can't keep, so I won't say anything too specific, but I would really love to be back here again with good news, or at least questions.


----------



## BigBeautifulMe

Good luck, Liz, whatever you decide.  We're here for you if you need anything. And if you need a advice/answers/a shoulder/support, you can always feel free to call me. Seriously. I'm always glad to help.


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## LillyBBBW

*bump*

Ok, that took almost a year but I finally made it in for my followup with the docs at the sleep center. I learned that I have what is called complex sleep apnea. I have the obstructive kind combined with the kind that is induced via the brain. The brain inself will cause me to hold my breath and stop breathing. I've noticed for years that I even do this during the day but never gave it much thought. This is why the auto cpap machine wouldn't work for me, at least that is what I was told. 

Also I'm getting a new full face mask.


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## BigBeautifulMe

Ahhh, sounds like you have CSDB (Complex Sleep Disordered Breathing). I hope they're getting you a new machine. If you have central apneas as well as obstructive, that's a whole different animal.


----------



## LillyBBBW

BigBeautifulMe said:


> Ahhh, sounds like you have CSDB (Complex Sleep Disordered Breathing). I hope they're getting you a new machine. If you have central apneas as well as obstructive, that's a whole different animal.



They gave me a choice. They said they would schedule another sleep study or I could just keep on doing what I'm doing if I feel it works for me. I teetered about it for a minte but then decided to just let it go. Do you think I should go back for another study? They said that the incidence of central apnea was mild and they didn't seem overly worried or concerned. I figured I would just see what happens with the full mask.


----------



## BigBeautifulMe

Hmm, if it's mild it might not be worth pursuing if you're feeling better - but if you ever start NOT feeling good again, I think it would definitely be worth another sleep study.


----------



## LillyBBBW

BigBeautifulMe said:


> Hmm, if it's mild it might not be worth pursuing if you're feeling better - but if you ever start NOT feeling good again, I think it would definitely be worth another sleep study.



I feel like there might be some room for improvement but things are far and away better than what they were. Thanks BBM, I think I'm going to proceed with the plan and keep watch on things.


----------



## BigBeautifulMe

Loves you, Lill. :wubu: Just let me know if you have any issues - if I don't know the answer (CSA is not my area of expertise), I can find it! lol.


----------



## LillyBBBW

BigBeautifulMe said:


> Loves you, Lill. :wubu: Just let me know if you have any issues - if I don't know the answer (CSA is not my area of expertise), I can find it! lol.



I'm pretty sure I know even less than you do. He explained it pretty well but I don't know what they do for people with that kind of apnea. I know that during the day today I have been making concerted efforts to practice breathing. He said that sometimes the brain has the wrong idea as to what constitutes the right oxygen saturation for the blood and will shut off breathing to compensate. Their way of measuringhow it occurs in me would be to do another sleep study and watch my oxygen levels carefully to see how things go. I have this feeling that whatever it is it would be minor. I do wonder how they treat CSA though, if not through CPAP.


----------



## BigBeautifulMe

It is through PAP, it's just not _C_PAP. It's a special kind of machine that automatically pushes air into your lungs if you haven't taken a breath after a predetermined amount of time. There's a better explanation than that somewhere, i'm sure, but that's the general idea.


----------



## LillyBBBW

BigBeautifulMe said:


> It is through PAP, it's just not _C_PAP. It's a special kind of machine that automatically pushes air into your lungs if you haven't taken a breath after a predetermined amount of time. There's a better explanation than that somewhere, i'm sure, but that's the general idea.



The simpler explanations are often the best. Thanks for that BBM!  I might actually like that to be honest. My current CPAP is really pretty though. I'd be disappointed to have to trade for an industrial looking thing. That would be my only beef.


----------



## Zandoz

LillyBBBW said:


> *bump*
> 
> Ok, that took almost a year but I finally made it in for my followup with the docs at the sleep center. I learned that I have what is called complex sleep apnea. I have the obstructive kind combined with the kind that is induced via the brain. The brain inself will cause me to hold my breath and stop breathing. I've noticed for years that I even do this during the day but never gave it much thought. This is why the auto cpap machine wouldn't work for me, at least that is what I was told.
> 
> Also I'm getting a new full face mask.



I too have the condition where my body literally forgets to breath...day and night...combined with the obstructive apnea. Do not put off doing anything you can do to correct this. I am living proof of how the oxygen deprivation long term can really screw you up. From years of it, I've lost most of my short term memory ability, and almost all ability to concentrate. It is often..bordering on the norm for me...not to be able to hold a thought long enough to complete a sentence. I had degrees in Computer Science and Physics, but mentally almost all of that is gone now. Take care of your self, good lady.


----------



## imfree

LillyBBBW said:


> *bump*
> 
> Ok, that took almost a year but I finally made it in for my followup with the docs at the sleep center. I learned that I have what is called complex sleep apnea. I have the obstructive kind combined with the kind that is induced via the brain. The brain inself will cause me to hold my breath and stop breathing. I've noticed for years that I even do this during the day but never gave it much thought. This is why the auto cpap machine wouldn't work for me, at least that is what I was told.
> 
> Also I'm getting a new full face mask.



I'm with you, Lilly, that's what I have. I might have
been shocked too many times or been passed out
drunk too many times. It could even be hereditary.


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## MissToodles

not directly cpap related but have a few questions. had a sleep study last night, saw bits of the report. there was mention of bradycardia during my sleep (a slowing down of the heart rate?) and the saturation levels, which I know is how much oxygen you take in, but what are considered "bad" levels? So tired still, they didn't try out a cpap on me, I have to back again to sleep with one.


----------



## TheMildlyStrangeone

Anyone ever have a problem with dry air making you wake up from choking? ( I don't have the humidifier set-up with my CPAP)


----------



## Happy FA

I've been using cpap for more than a dozen years and have always had a passover humidifier. On the more frequent occasions than I'd wish when the reservoir has been allowed to go dry I always find it uncomfortable. The humidified air is a major benefit in maintaining a comfort level for me.

I'm not sure that I recall waking up because of the dry air, but I sure know that when I do wake up I feel like my nose and mouth are parched and often scratchy from the flow of dry air.

I'd strongly recommend either the passover(the air passes over the reservoir of water being humidfied by that contact) or a heated/active humidifier. Many folks really prefer the heated humid air and the greater degree of control over the humidity and temperature that the heated/active humidifier provides.


----------



## BigBeautifulMe

Sorry it took me so long to answer, Toodles. I'm not sure off the top of my head - you can ask on the cpaptalk.com forums, they'll know, or I can ask for you. 

Mildly, if you're sure it's the dryness of the air that's the problem, definitely get your doc to RX you a heated humidifier. The good thing about the heated kind is that you can leave the heat off and use it as a passover (cool) humidifier if you want, or you can plug it in/turn it on and use the heat, too. It gives you more options than just the passover.


----------



## BigBeautifulMe

Bumping this thread for anyone who might find it useful.


----------



## Risible

Ginny, I think this thread is very important, and I included it in the Health Forum's Most Useful Threads sticky at the inception of that thread. Thanks for all your valuable input in this thread, BTW.


----------



## BigBeautifulMe

It's the least I can do for my Dims friends.  I'm glad you added it to the sticky, Ris - thanks!


----------



## Your Plump Princess

I am supposed to use a CPAP Machine, but I just cannot bring myself to.

The First night, Yes, I used it.
I woke up continuesly... Most of those times I was sitting up, hunched over, with the mask in my hands. 


I Felt HORRIFIC the next day. I could not even remember the word "Clock" "TV" or anything else for that matter. 



I'm going to try it again though. Seeing this thread has convinced me to.


----------



## BigBeautifulMe

That's great, PP...don't give up. We're here for ya.


----------



## LillyBBBW

Lately I've been falling asleep without the CPAP. I find myself dreading putting it on, it feels so cumbersome now. I really need a new mask or something.


----------



## vardon_grip

LillyBBBW said:


> Lately I've been falling asleep without the CPAP. I find myself dreading putting it on, it feels so cumbersome now. I really need a new mask or something.



If it hasn't been suggested already...

You may want to try a nasal pillow mask. It is lighter and less cumbersome on your face. On the downside, it is a little easier to become dislodged if you toss and turn in your sleep.

Good Luck, better sleep and sah-weet dreams!

Okay, back on my high horse!
(The image is of the Mirage Swift LT)


----------



## LillyBBBW

vardon_grip said:


> If it hasn't been suggested already...
> 
> You may want to try a nasal pillow mask. It is lighter and less cumbersome on your face. On the downside, it is a little easier to become dislodged if you toss and turn in your sleep.
> 
> Good Luck, better sleep and sah-weet dreams!
> 
> Okay, back on my high horse!
> (The image is of the Mirage Swift LT)



Thanks vardon. Actually that's what I wear right now is the nose pillow mask. Mine has the tube coming out of the side though. The problem is I sleep on my stomach. The thing mashes into my pillow and dislodges when I completley relax in sleep. In order to keep this from happening I spend a considerable amount of time jimmying the thing around so it wont do that. Ultimately it's jammed in to my face all night long and I wake up with a sore nose. The same goes for the face mask, my pillow pushes it off my face somewhat when I sleep. If its not one thing its another. I tried for a while to teach myself to sleep on my back but my mouth opens when I do that so I have to put tape on my mouth at night. Yes yes, I'm sure tape over my mouth comes as a pleasnt thought to many here on the board but its annoying having to do it each night. Plus I have an allergy to adhesive. 

High maintenence me.


----------



## vardon_grip

LillyBBBW said:


> Thanks vardon. Actually that's what I wear right now is the nose pillow mask. Mine has the tube coming out of the side though. The problem is I sleep on my stomach. The thing mashes into my pillow and dislodges when I completley relax in sleep. In order to keep this from happening I spend a considerable amount of time jimmying the thing around so it wont do that. Ultimately it's jammed in to my face all night long and I wake up with a sore nose. The same goes for the face mask, my pillow pushes it off my face somewhat when I sleep. If its not one thing its another. I tried for a while to teach myself to sleep on my back but my mouth opens when I do that so I have to put tape on my mouth at night. Yes yes, I'm sure tape over my mouth comes as a pleasnt thought to many here on the board but its annoying having to do it each night. Plus I have an allergy to adhesive.
> 
> High maintenence me.



Again, this may have been discussed before so excuse my lazy, non-past post reading butt.

For people who sleep in any position other than on their back, using a cpap is difficult. There is a soft chin strap that is secured with velcro to keep the mouth shut. It is sometimes included with the masks. It would replace the need for tape and eliminate the allergic reaction. You may have tried it already, but if you haven't.....


----------



## SummerG

heh, i'm a side sleeper too... and have recently switched from a nasal mask to nasal pillows. I like them more, but do end up with sore nostrils sometimes. I also sometimes wake up with extreme dry sinuses which causes a searing pain that goes away in a minute or so. I have a heated humidifier too, so I think it is just my own extreme sensitivity of the epithelial tissues that cause that.

One thing I noticed about sleeping on my back with the cpap, is that I am more likely to mouth breath. I would have to tape too (but also have that adhesive allergy) because it's not just a matter of my jaw dropping, but sometimes the air will escape past my teeth and I wake up making raspberries. I don't sleep on my back regularly anyhow as it hurts my back, so maybe the raspberries serve a good purpose in waking me up to turn over, hehehe.

So side sleeping for me, helps with the cpap wearing as I tuck my hands under my chin in that position. 

I wonder if anyone here has tried those pillows that have a carved out area for the mask. I've seen them on amazon, and wondered if they are worth the purchase.


----------



## vardon_grip

Have any of you guys that have sinus problems tried a neti pot for nasal irrigation?

I started to use one and I have noticed that my allergic reactions to pollen, dust and pet dander is way down. It also cuts down on sinus dryness for me.


----------



## LillyBBBW

*sigh* I don't know. It seems the remedy is a bit worse than the problem when it comes to this issue. A special pillow sounds promising though.


----------



## liz (di-va)

I have had my CPAP for 4 years but barely used it...so I think I quality as new. I have a few questions...if anybody here has the time/inclination to answer! 

FYI I have the Darth Vader kind of mask that comes over your head and ends in nasal pillows. And it's a Humidaire something or other. It's not a bi-thingie...bipap. CPAP.

- Is it just totally gnarly to buy a new air hose for my CPAP off of eBay? Brand-new and in packaging, of course, but....but. Have any of y'all done that?

- Have any of y'all tried the protective thingie that goes around the hose? (Two words here--and for the question above: CPAP and CATS. Not a good mix.)

- Should my machine be making different pitched-noises on the inhale/exhale? Sort of....siren-y, in a way (only of course not that loud!)

- Has anybody noticed that your body gets very cold while sleeping this way? I can't tell that if my body is not used to REM sleep and reacting, but I've been trying the machine at least one a day for a week and somewhere in the middle of sleeping with the mask I inevitably wake up for a moment really really cold, get more blankie, than go back to sleep.

- How often do you have the machine/your needs calibrated? I got this four years ago and am using the settings created for me...not sure if that's cool.

I really need to get better at reading the data for this machine...I'm worried that, you know, it's not working! Or...that I wouldn't know how to recognize, or god forbid, sleep through something bad. I have a sneaking suspicion it might be working though. I mean...it feels *different,* at least. 

BTW, the reason - other than fear/laziness/worry/cats/whatever - that kept me from using this thing for the most part has been allergy problems. I tend to go from nose-breathing to stuffed up in 15 seconds. But nasal irrigation really has helped with that, or least my ability to fight it. I think.

I have a feeling I have asked questions I should find the answers to myself...if so, please free to tell me! I have been reading my manuals over and over and they're just not that great, but I haven't been re-reading this thread, I admit.

I am determined to make this machine work in the new year...if it does I think it could have an enormous influence on my health to get my hormones back in whack (among all the other stuff). I'm hoping. Maybe I'm putting too much hope in it, but I definitely have to put a lot of work into making it a habit/giving it a good try.

Anyhow, glad to finally be joining this thread.


----------



## BigBeautifulMe

liz (di-va) said:


> I have had my CPAP for 4 years but barely used it...so I think I quality as new. I have a few questions...if anybody here has the time/inclination to answer!
> 
> FYI I have the Darth Vader kind of mask that comes over your head and ends in nasal pillows. And it's a Humidaire something or other. It's not a bi-thingie...bipap. CPAP.
> 
> - Is it just totally gnarly to buy a new air hose for my CPAP off of eBay? Brand-new and in packaging, of course, but....but. Have any of y'all done that?
> 
> - Have any of y'all tried the protective thingie that goes around the hose? (Two words here--and for the question above: CPAP and CATS. Not a good mix.)
> 
> - Should my machine be making different pitched-noises on the inhale/exhale? Sort of....siren-y, in a way (only of course not that loud!)
> 
> - Has anybody noticed that your body gets very cold while sleeping this way? I can't tell that if my body is not used to REM sleep and reacting, but I've been trying the machine at least one a day for a week and somewhere in the middle of sleeping with the mask I inevitably wake up for a moment really really cold, get more blankie, than go back to sleep.
> 
> - How often do you have the machine/your needs calibrated? I got this four years ago and am using the settings created for me...not sure if that's cool.
> 
> I really need to get better at reading the data for this machine...I'm worried that, you know, it's not working! Or...that I wouldn't know how to recognize, or god forbid, sleep through something bad. I have a sneaking suspicion it might be working though. I mean...it feels *different,* at least.
> 
> BTW, the reason - other than fear/laziness/worry/cats/whatever - that kept me from using this thing for the most part has been allergy problems. I tend to go from nose-breathing to stuffed up in 15 seconds. But nasal irrigation really has helped with that, or least my ability to fight it. I think.
> 
> I have a feeling I have asked questions I should find the answers to myself...if so, please free to tell me! I have been reading my manuals over and over and they're just not that great, but I haven't been re-reading this thread, I admit.
> 
> I am determined to make this machine work in the new year...if it does I think it could have an enormous influence on my health to get my hormones back in whack (among all the other stuff). I'm hoping. Maybe I'm putting too much hope in it, but I definitely have to put a lot of work into making it a habit/giving it a good try.
> 
> Anyhow, glad to finally be joining this thread.



Hi Liz! Glad to see you here.  

Okay, I'm going to take a stab at these as best I can. 

First, we need to figure out what kind of CPAP you have.  Then maybe I can give you more helpful info on it. The Humidaire is actually a stand-alone humidifier (at least, to my knowledge - that's definitely all they make that's called "humidaire" now - not sure about 4 years ago), so that's not the kind of machine you have, most likely. You're looking for something that says "Resmed" or "respironics" or "remstar" (REMStar is also respironics) or Puritan Bennett or something similar. Then you're looking for a model of some kind. This might be on the top of your machine, the back, the bottom, anywhere really. Just tell me what it says, and I'll tell ya if it rings any bells. 

Now, as far as identifying your mask, that's going to be a little harder, as those often don't have any kind of identifying information on them. If you're having any issues with it, you can go to cpap.com and see if you can figure out what kind of mask it might be by looking at the pictures - and then I can see if I can find some helpful tips for you, depending on what kind of issues you're having with it. There are a bunch that fit the criteria you described. One thing I'm thankful for is that there are SO many different kinds of masks out there! 

If your CPAP is 4 years old, and you didn't specifically ask for a data-capable machine when you got it, it's probably not going to give you any useful information about how you're sleeping, anyhow, so I wouldn't stress about that too much. 

I think you have insurance, yes? If so, they usually cover a new machine ever 5 years. Do your homework before purchasing, though, to make sure you get the best machine for your needs, and one that can give you actual useful information. I can help you with this when you're ready to look at new ones. Another important thing is to figure out what your copay will be if you buy through your insurance - you can get a good machine that's data-capable for $459 brand new, or a top-of-the-line auto-adjusting machine for $589 brand new. There's also cpapauction.com - it's like eBay, but specifically for cpap stuff. As on eBay, though, be careful - check the seller's ratings out first, because you never know - there are unscrupulous people everywhere. As for buying a new hose on eBay - if it's packaged, I would probably go for it myself, though a doc/professional would probably tell you not to. You can get a brand new one on cpap.com for $9.99, though, just FYI. 

I've never bought a snuggle hose cover, but my cats leave my hose alone (thankfully). Of course, I probably just jinxed myself.  Haha. It does warm the air up a little, though, which might help you with the next thing - waking up cold.

Your humidaire - I don't know which kind you have. Is it just a passover humidifier? If it doesn't heat the air, it's just a passover. If it does heat the air, it's an (aptly-named) heated humidifier. lol. If it's not heated, you may want to invest in a heated one. I betcha that will help. Another possibility is this: Folks with untreated sleep apnea often have night sweats - it could be that you're just finally sleeping "normally" without being overheated due to the apnea. One caveat: I personally don't like heated humidifiers, though I'm one of the few. I have asthma, and heat and humidity are both a trigger for it - so heated humidifiers just make my asthma flare up. As with anything, YMMV!  

Yeah, your machine will definitely sound different on inhale/exhale, especially if you have one with exhale relief of some sort (Respironics calls it C-flex, and Resmed calls it EPR). That means that when you exhale, it drops the pressure (just a little) to make it easier to breathe out. It's not harmful treatment-wise, as the vast majority of apneas happen on inhale rather than exhale. 

I have an auto-adjusting machine that is data-capable, so I haven't gotten re-titrated myself, but my original titration was SO far off it was ridiculous. Your machine itself is likely fine without being recalibrated at all, but if you want to, you can take it into a DME and they can make sure it's blowing the pressure it's set for - I can't remember what they use to check that - magnometer? Some kind of meter. LOL. If you feel like your treatment pressure is not working for you (if you sleep with it all night every night and you're still constantly fatigued would be a good sign) you would probably want to be retitrated again. 

The "poor man's" way of retitrating is to change pressure just a half a cm at a time, leave it like that for a week, and see if that helps, then go up another half, and on and on until one feels better. This is made much easier with a data-capable machine, as you can see exactly what kind of apneas you're having at what pressure. Changing your pressure yourself is usually a "no-no" to finger-wagging DMEs and some docs - but if you're careful, there's no real harm that can be done that way. 

Nasal irrigation is a good way to go about handling nighttime congestion - a lot of CPAPers swear by it. If that alone doesn't work, there are always sprays like Nasonex, etc. that you can get from your doc. Just stay away from using Afrin on any kind of regular basis - that stuff is BAD news. 

Alright, Liz, if I missed any questions, let me know! And if you have any more - keep 'em coming!  

:kiss2::kiss2::kiss2:


----------



## HollyGirl

i work in cpaps. For those of you having a hard time adjusting to the masks, resmed just came out with some awesome hybrid masks. we have loads of patients using them and having amazing results.


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## LillyBBBW

HollyGirl said:


> i work in cpaps. For those of you having a hard time adjusting to the masks, resmed just came out with some awesome hybrid masks. we have loads of patients using them and having amazing results.



What do they look like, what do they do, how do they work? Some more info please.


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## HollyGirl

the one i'm thinking of, goes over the mouth, and into the nostrils. its not like the canula types. uhm.. think of the pillows on a regular cpap mask, the pillows cover the inside part of the nostrils and then cover the mouth. it takes away a lot of all the head stuff. there are still straps, but its not as cumbersome. not to mention, the tube on the front swings and so you can move around in your sleep without fear of it coming off while your asleep. 

let me see if i cant find a picture to post


----------



## HollyGirl

ok they dont have the pictures out yet. but it is this sort of nasal part, but it is connected to the bottom of what looks like a full face mask. 


oh and the above picture is resmeds new mask for women. ive tried it at work and let me tell you ladies. HUGE difference. its so confortable.


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## LillyBBBW

HollyGirl said:


> the one i'm thinking of, goes over the mouth, and into the nostrils. its not like the canula types. uhm.. think of the pillows on a regular cpap mask, the pillows cover the inside part of the nostrils and then cover the mouth. it takes away a lot of all the head stuff. there are still straps, but its not as cumbersome. not to mention, the tube on the front swings and so you can move around in your sleep without fear of it coming off while your asleep.
> 
> let me see if i cant find a picture to post



Wow, that does sound interesting. I'm glad to hear that research and developement of newer options are still in the works. Thanks Holly!


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## HollyGirl

your welcome! and if any of you have any questions, feel free to ask. If i dont know i can find out!


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## BigBeautifulMe

Just FYI - people who own the Swift LT and the "Swift LT For Her" report that the only difference is the color of the straps and the fact that it comes with extra small nasal pillows instead of larges (the actual nasal pillows themselves are inexpensive to purchase, and many women - like me - use the large, anyway). Unfortunately (according to quite a few users) the sizing of the headgear has not changed (and that was what most people were hoping for since a lot of women have issues with headgear being too big). If the Swift LT doesn't work for you, the LT for Her likely won't make any difference.

Holly, I'd love to hear about the new Resmed hybrid mask - what is it called? Thanks!


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## MissToodles

How much money do insurance companies typically contribute to a cpap? I have insurance through the state, so it is pretty comprehensive. As you all keep mentioning, DME's try to pawn cheaper machines off on you. I'm probably getting a small tax refund as well this year, but figure I could use it towards an auto-tirating machine, since health is never a bad investment!


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## liz (di-va)

Gin thankee for your response to my querstions! I will have a more detailed answer for your answer as soon as I finish getting answers for the answer .


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## HollyGirl

we only carry resmed and respironics machines and we only accept medicare and tricare. We get 80 percent from tricare and write off the other 20% so the military people dont have to pay anything for supplies or the machine. medicare im not sure right now because they are about to change. I know that as of jan 1, if you dont use your cpap 80% of the time, they will not pay for it and your either responisble for payment or it gets taken away. also, they lowered thier reimbursment rates by i think 9% which doesnt sound like much, but its a huge chunk down the line...


----------



## HollyGirl

BigBeautifulMe said:


> Just FYI - people who own the Swift LT and the "Swift LT For Her" report that the only difference is the color of the straps and the fact that it comes with extra small nasal pillows instead of larges (the actual nasal pillows themselves are inexpensive to purchase, and many women - like me - use the large, anyway). Unfortunately (according to quite a few users) the sizing of the headgear has not changed (and that was what most people were hoping for since a lot of women have issues with headgear being too big). If the Swift LT doesn't work for you, the LT for Her likely won't make any difference.
> 
> Holly, I'd love to hear about the new Resmed hybrid mask - what is it called? Thanks!



the swift straps are positioned differently ( lower in the back to accomidate womens hairstyles) and the mask is smaller. 

the new hybrid mask i think is called the liberty....i think...


----------



## BigBeautifulMe

HollyGirl said:


> the swift straps are positioned differently ( lower in the back to accomidate womens hairstyles) and the mask is smaller.
> 
> the new hybrid mask i think is called the liberty....i think...



That's not at all what I've heard from a bunch of users of both the LT and the LT for Her, Holly - interesting. I'll have to check it out for myself sometime (though I'd never buy one, anyway, as I'm a devoted AEIOMed Headrest user). Could be that the differences just aren't...different enough to be noticeable for end-users.  

Yes, the Liberty I've been hearing about for quite some time now (since mid-2007 - I think May of 07 is when it originally came out). I was hoping they were coming out with something even newer. :happy: Ah, well. The Liberty definitely has a decent-sized contingent of fans!


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## HollyGirl

that must not be what its called then. i didnt think i was right. i'll have to go grab one from the warehouse on monday! lol


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## BigBeautifulMe

MissToodles said:


> How much money do insurance companies typically contribute to a cpap? I have insurance through the state, so it is pretty comprehensive. As you all keep mentioning, DME's try to pawn cheaper machines off on you. I'm probably getting a small tax refund as well this year, but figure I could use it towards an auto-tirating machine, since health is never a bad investment!




Unfortunately, there's no "typically" kind of answer, J. It depends solely on your insurance company. Definitely find out what your co-pay would be, and then check online for lower prices. I like cpap.com, but I fully admit I'm biased since the forums they host (cpaptalk.com) are where I spend a lot of time learning about cpap.  They do price-matching, though you have to call and ask for it. Also, make sure you follow their instructions on each item for getting the ACTUAL price and not the ADVERTISED price - they (along with all other reputable cpap sites) have been required by manufacturers to only use one "advertised price" even if what they actually charge is lower. (I think you actually have to add it to your cart to see the "real" price, or something like that). The reason being that local DMEs were losing customers to online retailers, who charged *reasonable* prices for machines. Dumb, I know.


----------



## MissToodles

got back from my titration study. I'm still groggy but the tech told me she had to change settings on the machine because I couldn't tolerate the cpap setting. So it was changed to a bipap one. still a bit confused.


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## BigBeautifulMe

That's a good thing, J. That means you needed a very high pressure, but could not breathe out against it comfortably. A Bipap gives you a separate pressure for inhale and a separate one for exhale, so it makes things more comfortable for you.  Congrats on completing your titration!


----------



## MissToodles

I need to get my lazy buns over to cpap talk. I'm confused, because apparently, and this is what two techs & the doctor told me, my apnea is mild and really not too severed (I'm surprised because of my weight distribution. I also know over 50% of osa sufferers are not considered 'overweight'.) If I suffer from mainly hyponeas not apnea, why would I need such a high pressure? Okay, I need to find my first report and ask on the other board, and to question my doctor as well! Although I only had around 5 hours of sleep in total, I felt less groggy in the morning, like the fog lifted from my brain. I was quite amazed and can only imagine how constant use will continue to help me. I have terrible short term memory and literally forget words/concepts at times. 

It explains why I had trouble falling asleep with the mask on, I felt like I couldn't breathe. I've had panic attacks in the past and it wasn't a panic attack. I want my machine, already but have to wait for the new findings to be compiled.


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## BigBeautifulMe

Good question! Actually, what pressure you need to keep your airway open has nothing to do with how severe your OSA is. You can have severe OSA and need only a pressure of 5 or 6, and have mild apnea and need a bipap and a pressure of 20. It's all in the structure of your airway and how much physical force is needed to keep it open. 

As an example, I have very severe OSA (~100 events per hour) and I only need a pressure of 11.


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## LillyBBBW

When I went to my initial appointment the doctors looked me up and down and were asserting that I have apnea and that I would need a bipap before any testing was ever done. After the testing was over they alluded to some discrepencies in their results and that I might have two kinds of apnea but they set me up with a cpap with a guage of 12. They wanted me to go back and get another sleep study which I am thinking about doing. I just wanted to see how things fared with what they gave me. It's 'ok' but I still feel there are some issues. I may go back and opt for another study.


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## liz (di-va)

I just got back from a sleep study (my second; last one was four years ago) and WOW do I have apnea. Which I already knew, but still! Just to note! Bloody hell! This is not an intelligent or informative post--I just need to say...DANG!! Bring on the new CPAP. More soon.


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## BigBeautifulMe

This is going to sound sadistic (LOL) but I'm happy for you, Liz!  As you already know, this is the first step in feeling much, much better. Just let me know if/when/how I can help! :wubu:


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## LillyBBBW

BigBeautifulMe said:


> This is going to sound sadistic (LOL) but I'm happy for you, Liz!  As you already know, this is the first step in feeling much, much better. Just let me know if/when/how I can help! :wubu:



Same here. I had the urge to clap and sqeal yelling, "Oo, ooh ooh, schleep schnorkels for evry-vun!!" but felt it would be mildly inappropriate. I am happy for you though Liz. You will feel a lot better getting a resolution underway.


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## liz (di-va)

Heheheh...schleep schnorkels!!! YOU crazy apnea goofs!

Okay, like I said..it's NOT like I didn't know I had apnea, but I am newly launched for dealin with it and practically tap-danced out of there I was so encouraged. This is how bad it is: I slept for _16_ hours the day before/of the study, which means I arrived there three hours after I had woken up. After getting settled for the study it took me *10 minutes* to fall back to sleep, not just sleep but deep REM sleep--this after "sleeping" 16 hrs. 

Today? I'm like bouncin around the walls. I think we got a mask I can tolerate and a new level titrated and I should be getting new data-capable machine next week-ish. Can use my old one in the meantime. I've never in my life awoken dewily refreshed, even when I had great quality of sleep--I'm just not that kinda person--but I can tell what a huge difference everything made last night. I felt it very soon after leaving the sleep center. Just so much better.

I know that the trickier parts are coming--getting adjusted, doing this on my own, the day-to-day-slog, whatever--not to mention I am not going to fix years of a problem in one night--but I sure am excited to feel like I am on the right path. I am probably going to lurk and read and try to start trying a bit quietly...I'm going to have to see how this works on my own for a while. I know myself well enough to know that I need to guard new habits carefully to let them stick. But I'm so glad all this help is here...I look forward to getting caught up with the info.

The sleep tech, btw--y'all probably know this--said that the reason I was having so many dreams/nightmares when I was trying to use my CPAP in recent months was probably the sleep deficit--bounceback. Dream festival.

Okay, I'm done kvelling--until a problem arises, right? (hah). Didn't mean to interrupt bipappin chattin. Thanks y'all. YAY TO OXYGEN!


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## BigBeautifulMe

YAY! I'm so glad, Liz. Be careful they don't try to give you a "RemStar Plus" and tell you it's data capable. It has a "smart card" in it, but that will only give you compliance data [i.e., how many hours per night you use it], not actual useful data (you've probably already seen me say this a gazillion times...but just in case! ) Not tryin to make you paranoid - but there are soooo many DME horror stories out there I'm very wary! lol


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## Donna

I've read through this entire thread and didn't see if this question has been asked/addressed. I had my titration sleep study last night and it was pretty successful. Despite my panic attacks (the sleep tech said my doctor will give me something to help with that), I did pretty well with the mask. I should be getting my machine in the next week. 

My concern is that the seal around the mask they used irritated my skin to the point I have a lovely red rash where it laid on my skin. I am not normally *this* sensitive, even on my face. I admit I haven't Googled anything looking for answers yet (I am sure there have to be some sort of hypoallergenic masks,) and I will be doing that later. 

But I wanted to know if anyone had any personal experience with this type of issue? Any advice or questions I should ask the person who comes out to set up my machine and deliver the mask?


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## BigBeautifulMe

Donna, there are lots of residual chemicals on new masks from the silicone rubber, many of which it's possible to be allergic to. Whichever mask you get, I would suggest soaking it for long periods of time in warm soapy water for the first week or so whenever you're not wearing it. This will help dissipate the chemicals and lessen any reaction you're having. You may want to insist on a different mask to start with, though, if you've already reacted badly to this one, or you can try the soaking I just talked about on this one. There's no way to predict what's going to work for sure, though, obviously. I'm sorry - what a pain!


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## Miss Vickie

Donna, Burtimus experienced what you describe and he ended up switching to nasal pillows. That made a huge difference. Keep experimenting until you find something that's comfortable and doesn't thrash your skin.


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## GenericGeek

For those of you new to CPAP, here are a couple of things I've learned over the years...

1) If you need a high pressure -- which might be as little as 10-12 cm H2O -- be *sure* they give you a heated humidifier! When my pressure was first bumped up, I spent the next two weeks sneezing almost constantly, and my nose was running like a faucet. I thought that I'd somehow come down with the worst case of hay fever ever recorded, which seemed weird, because I'd *never *had allergies before.

Finally, it dawned on me that this problem didn't start until after my CPAP pressure was increased, and I called the sleep clinic. And the tech immediately said, "Oh, with _*that *_pressure, they should've made sure you had a humidifier." Sure enough, once I got that little item added to my system, bye-bye runny faucet-nose.

(I guess the airflow dries out & irritates your nasal passages & sinuses, or something, and making sure that your CPAP is pumping moist air into you makes all the difference in the world.)

2) Don't be afraid to experiment and/or complain to your provider until you get something that works for you! There are literally _*hundreds *_of different kinds of equipment on the market, and more is being added all of the time. For example, I _*hated *_nasal pillows at first & always used a mask -- until somebody came out with a style that worked for *me*. Now I vastly prefer them to a mask.

3) Be creative! Many of the best systems on the market were invented by people who were _*themselves *_ CPAP users, so if you're so inclined, go for it. And you don't have to limit yourself to using stuff that's marketed as "CPAP gear", either. Sometimes, you can find items at the local hardware store -- or fabric emporium -- that works as well, without the hefty medical gear markup. For example, I was having problems with "rainout" in my hose, so my wife made me a nice little hose cozy out of tie-dye fleece she found at her favorite shop...


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## BigBeautifulMe

Good tips, GenericGeek.  

I'd just like to say - people with low pressures can need/enjoy heated humidifiers, too. I think it's always good to have your doc Rx one if your insurance covers it - nothing says you have to use it, but you'll have it as an option if you want it.  I personally never use mine - for some reason it nearly sends me into asthma attacks. But I'm weird in every other way, so why not this one?


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## sierrak

I like using the heated humidifier when it gets so cold and dry here in the midwest during the winter. It's also great when you have a cold, too.


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## fatgirlflyin

Once you have a sleep study, and are diagnosed with sleep apnea how do you get your machine? When you get your prescrpition do you take it to the pharmacy and they fill it like medicine or do you go online and buy the machine then fight with the insurance company for your portion of the money back? My plan covers 80% so that's quite a bit.


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## Risible

Ella, I have an HMO and a primary care physician. I requested my sleep study through him, and the sleep center handled the rest once they got the approval. After the sleep study I was contacted by the health care products company that set me up with the CPAP; I had to schedule an appointment to pick it up following a seminar they held for about ten people receiving their own CPAP. So, I would contact your PCP if you have one, or the sleep center to see what you do next.


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## fatgirlflyin

Risible said:


> Ella, I have an HMO and a primary care physician. I requested my sleep study through him, and the sleep center handled the rest once they got the approval. After the sleep study I was contacted by the health care products company that set me up with the CPAP; I had to schedule an appointment to pick it up following a seminar they held for about ten people receiving their own CPAP. So, I would contact your PCP if you have one, or the sleep center to see what you do next.



Thanks sleep study is next week, just wanted to have a game plan.


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## Risible

Oh, what fun! I remember I was like, how am I supposed to sleep wired up like this? There were wires and electrodes everywhere. But, yeah, before I knew it, there was the technician shaking me awake to put on the CPAP midway through the night, and then waking me up in the morning ... early ... morning. 

Good luck with yours!


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## LillyBBBW

Risible said:


> Oh, what fun! I remember I was like, how am I supposed to sleep wired up like this? There were wires and electrodes everywhere. But, yeah, before I knew it, there was the technician shaking me awake to put on the CPAP midway through the night, and then waking me up in the morning ... early ... morning.
> 
> Good luck with yours!



That's exactly how it happend for me too. They smeared my scalp with this silicone past though to attach some kind or electrodes to my brain. Don't go to the hairdresser beforehand.


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## Shosh

Risible said:


> Oh, what fun! I remember I was like, how am I supposed to sleep wired up like this? There were wires and electrodes everywhere. But, yeah, before I knew it, there was the technician shaking me awake to put on the CPAP midway through the night, and then waking me up in the morning ... early ... morning.
> 
> Good luck with yours!




Hey Ris,

I had a sleep study done prior to the insertion of my lap band. The tech was pissed off with me coz I announced that I needed to go to the toilet after he had put the electrodes on me. All four million of em.

I had to go in a bed pan.


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## BigBeautifulMe

Most of the time, Ella, you go to a Durable Medical Equipment provider (DME). I would contact your insurance company to see which local DMEs they work with. The DME is likely going to try to pawn off the cheapest model on you - if you care at all about being able to get useful data from your machine, I would go in there knowing what kind of machine you want, and not settle for what they're going to try to give you. (Hint: just because it has a "smart card" doesn't mean it's going to give you useful data. The most basic machines have those, but only record "compliance data," i.e. how many hours you use it per night. Not helpful.)

I know I'm a broken record, but cpaptalk.com is a good resource for figuring out what kind of machine you want and dealing with the DME in getting it.


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## MissToodles

Finally saw the pulmonologist today re : the cpap. I have mild osa ( a 6 on the osa scale, I go up to a 7 when in REM sleep) but despite that, she wants to give the bipap (which I responded better to) a try. Apparently, I also have very large tonsils (but not infected nor swollen) which doesn't help my breathing. I felt she attempted to steer me away from surgery by saying it cures snoring in most people but doesn't always help with OSA. I want to give the machine a chance, anyway. Who wants to undergo what amounts to an elective surgery. Not me! Anyone here ever had their tonsils/adenoids removed, has it helped?


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## BigBeautifulMe

Yeah, surgery is generally considered a baaaaad idea, at least on the forum I frequent. Most people see some improvement, but not enough to get off cpap, others see no improvement at all, and SOME have even had their OSA WORSENED by surgeries, to the point where they can't even use CPAP, and just have to live with untreated apneas.  That's not something I personally would ever risk.

An AHI of 6 is pretty darn low (just one apnea event per hour more than normal), but it definitely doesn't hurt to try the bipap. A friend of mine only has an AHI of 5 but swears her CPAP helps her.


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## BeautifulPoeticDisaster

Well hello everyone. Today, I have joined the club.

I did a simple sleep test about two weeks ago. They put a watch like thing on my wrist and had a pulse monitor on my middle finger. 

I got my results today, which is incredibly fast for the NHS. It appears I stop breathing 17 times an hour. I have no idea if that is minor or major. But letter does talk about an appoint for CPAP.

I'm such a light sleeper and I sleep on my belly as sleeping on my back is not comfy.....so I dunno how I'm ever going to sleep with a noisy thing on my face


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## BigBeautifulMe

17 is mild apnea, Donni.  Of course, that doesn't necessarily mean you'll have a low pressure to work with (pressure/severity don't necessarily correspond). 

I sleep on my belly as well.  The absolute key to getting something you can work with is getting the right mask. This thread on cpaptalk.com is all about masks for stomach sleepers.

The mask Gumby links to in the third post - the Headrest - is the mask I use and love. 

Stick with it, ask questions, and don't just take what you're given - stick up for yourself and your therapy.  Let me know if I can help in any way!


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## JerseyGirl07093

Donni, you'd be surprised how easy a CPAP mask is to get used to. And I have heard that women are so much better at this than men, they tend to be big babies about the mask, etc. Also, my CPAP machine is pretty quiet, you can hardly hear a thing. I almost wish it were noisier sometimes, kind of like a sound machine. Good luck with the CPAP! Once you start to use it you'll wonder how you ever did without it.


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## sierrak

When I first got my CPAP, I was a little nervous about using it not thinking that I would get a good night's sleep. The first night went ok, but the second night I slept like a baby. It was so amazing how well I slept with it. I haven't gone a night without it since and that was about 2 years ago.


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## BigBeautifulMe

That's great, sierra.  Today is actually my 4 year anniversay on cpap. I can't believe it's been that long! I've only missed one night with it - and that was unintentional (I left it somewhere six hours away and didn't realize until it was too late to rent a loaner from a local cpap place).


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## Adrian

I also used the CPAP for a couple years back in the mid-1990s. When I slept it was solid but, as a restless sleeper, it did not function well. Keeping the mask in the best position was my greatest problem. No matter how I adjusted the mask, it would move when I moved and would wake me up. Nasal pillows were no better, in that I would wake up with the pain of where the nasal pillows had irritated the opening of my nose.
I gave it up because it was not helping me! Waking up three or four times per night canceled out any benefit the CPAP might have provided.




JerseyGirl07093 said:


> I have heard that women are so much better at this than men, they tend to be big babies about the mask, etc.


Men aren't babies but, they will not tolerate something that is either not working or intensely bothering them!


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## BigBeautifulMe

Adrian - I disagree very strongly with that. It takes some time to adjust, and the important part is finding the RIGHT mask. There are dozens of kinds of masks - and it takes patience in finding the right one for you. You may be more tired at first while you're adjusting to wearing your mask, but it's not "cancelling out the effects" of the CPAP - the CPAP is keeping you from damaging your body every time you sleep. Your heart and your brain, just for starters. Every time you sleep without it, you're putting yourself at risk (Just ask Reggie White.) Also, CPAP technology and comfort has greatly improved since you tried it - give it a try again, and don't give up so easily. Your health is important. 

Edit: Look at it this way. If you're waking up four times a night to adjust your mask, that's WAY fewer times than you do without it. You're just not cognizant of it happening - but if you've been diagnosed with apnea, it is. Say you have moderate apnea - waking up 30 times an hour is way more than just three or four times all night.


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## Donna

I've been doing pretty well with my mask...but it really does take some time to adjust. Too tight and I wake up with horrible red marks. Too loose and it slips like Adrian described. I am getting good sleep, but I have noted that when I do wake up in the middle of the night (my bladder wakes me at least twice, sometimes three or four times) it's a little longer for me to get back to sleep than before the BiPAP machine. I was concerned briefly, but the sleep I am getting is so much more restful than without the machine.


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## BigBeautifulMe

That's great, Donna. I'm glad you're sticking with it.  By the way - the nighttime bathroom breaks are called nocturia, and that should subside somewhat after you've been on CPAP for a while. I used to get up twice a night - I don't at all anymore.


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## Adrian

BigBeautifulMe said:


> Adrian - I disagree very strongly with that. It takes some time to adjust, and the important part is finding the RIGHT mask. There are dozens of kinds of masks - and it takes patience in finding the right one for you. You may be more tired at first while you're adjusting to wearing your mask, but it's not "cancelling out the effects" of the CPAP - the CPAP is keeping you from damaging your body every time you sleep. Your heart and your brain, just for starters. Every time you sleep without it, you're putting yourself at risk. Also, CPAP technology and comfort has greatly improved since you tried it - give it a try again, and don't give up so easily. Your health is important. CLOSE


I spent a little over two years trying to get the mechanism to function as advertised. It was causing me to wake up three to five times per night. Any benefit was offset by the broken sleep. By the time I stopped using it, my doctors (pulmonary specialist, PCP, and psychiatrist) had no objections! (If one of the doctors had objected, my wife would have sided with them!)
I fought the good fight and simply lost!

I am fortunate in that my body's 'trip point' was around 235-lbs. I had been on a continuous weight gain due medication and, it was figured out by my pulmonary doctor. By that time my weight topped at 252-lbs. Below, 230-lbs to 235-lbs my problemS (arthritis in my knee, hyper-tension, snoring, etc.) all subside. It took four years for my weight to come down to the 205-lb to 215-lb, where it has oscillated ever since.


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## BigBeautifulMe

It could be that there weren't as many mask options back then, I don't know. But there are dozens now, and sleep apnea often does NOT go away with weight loss. Damage can continue to be done without any external symptoms at all. I say this not because I'm trying to annoy you - but because I've seen what untreated sleep apnea does. If nothing else, if you find yourself with heart problems down the road, you might consider another sleep test. Just my two completely unsolicited cents. My apologies.


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## Adrian

No offense taken, despite the tone of my response. Thank You, for the up dated information, I appreciate it. (I was born ignorant, there is no need for me to die that way!)
Getting another sleep test makes sense!

Again thanx -Adrian


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## liz (di-va)

It's been almost two months, exactly, since I started using my CPAP regularly (despite having one for over four years) and posted this report on the new sleep study. I wanted to follow up. It has actually been an extremely tumultuous two months, in a way that highlights how crucial sleep is, and how bumpy the transition from bad/no sleep to good sleep can be. (Pardon me if I repeat many things others have said, here.)

The most dramatic effect was psychological. In a weird twist, I ended up being very vulnerable to a bad depressive break _because_ I was suddenly getting good quality sleep and oxygen while I was sleeping. That first week I was flying high (as in that post!) from oxygen when I woke, but then I'd crash terribly. I ended up in a horrible depressive state that's taken a huge amount of time and attention to manage.

It's infinitely better now, but the whole experience pointed out how I *had* been living--pre-CPAP. I was used to being constantly--CONSTANTLY--exhausted and oxygen-deprived, in a generally depressed (physically, emotionally) state. When I suddenly got enough oxygen--bam. It was great, but then--crash. It's kind of the opposite of how people talk about sleep-related depression and how they gradually come out of it as the CPAP works. The CPAP definitely "worked," but the transition was brutal. Still dealing with fall-out from that.

It also caused a short period (less than a week) where I was loathe to use my CPAP because I was afraid it would make me more (more) vulnerable to all this, and didn't use it very regularly, but I just kinda plugged ahead eventually and kept using it.

General logistics:

My new CPAP machine (I think it's this one) is good, better than the old one--easier to fill up with water, etc. I also really like that it just starts when you put the mask on , and stops when you take it off. No flailing around to mash buttons on the machine while you're half-awake (in any direction).

I got this kind of mask. I liked it better in the beginning--now I'm not such a huge fan. It's very lightweight, but the truth is I think I like more stiffness/support in the mask structure, because what happens is that to keep it in place you end up needing more pressure and tightness than I'm comfortable with...hurts my nose, despite jerry-rigged stuff I do with foam and things to not have it push so much. Also - it rests *right* on my upper lip while I sleep, covers the whole thing when it's in the right position, and I don't like that feeling. 

My old mask--which I understand they don't make anymore--had a harder plastic support down the nose (ending in nasal pillows) that was less irritating, ultimately. This one is a really mixed bag. Also, the air release bit is louder than the other one, so it took me a while to not associate the sound with a leak, rather than just regular air flow.

The whole machine is generally quieter than the other one, but I still seem to do better with earplugs.

Another (common, I'd guess) side effect from beginning the CPAP:
My body was not used to laying in one knocked-out position for so long and I developed a complication from lying on my back in combination with a reaction to a drug I was taking--had a heat rash that got very irritated and hasn't allowed me to lie on my back for the last month, actually, as it's healed (it's doing okay, just verrry slowly).

I also had a couple days of a cold that made using the CPAP impossible, despite my best efforts, due to congestion. That was pretty miserable, and made me realize how very dependent I am on it.

Generally:

I am still getting used to things. I'm still kind of...catching up on sleep! I am not on a regular schedule, yet, despite trying. I am still figuring out how much time I need to allow for sleep, when sleep *works*. When I should go to bed, how much I want to sleep, etc. Last night, for instance, I slept almost 12 hours! Some nights...more like 7. My whole life I've been terrible at having a regular bed time, so I am slowly figuring this out.

The positive side-effects are invaluable. I don't get tired during the day. I feel better. I look--according to others as well as myself--much better; I used to be incredibly pale and washed-out, and my color has returned in my face. I feel like whatever blood sugar issues I had are starting to normalize (in my totally amateurish opinion)--I am not getting tired after eating certain foods. My eyes look clearer. I am after two months still figuring out what other effects will develop. It's absolutely helping my lymphedema--more so when I can lie flat.

Altogether, I am very glad I am using it and have persevered in doing so, as you can see, despite a very scary and bumpy transition and a lot of set-backs. I like getting good quality sleep.

FYI I also happened to start doing breathing exercises most days--yoga breathing and general deep/relaxed breathing--around the time I started using my CPAP. I can't recommend them enough for your state of mind and physical health. I think they probably help me use the CPAP well. 

The CPAP is a magic bullet, in some ways. But now that I'm a little more used to it, I am aware that it's not...perfect. I would rather be able to just sleep without it. However, I am very committed to using it--it has kinda changed my life. I wish I had had ANY sense that the transition might be so disturbing, though. It made it clear how much sleep affects neurochemistry, psychology, emotions, metabolism, everything.

p.s. Washing the mask is a bloody hassle! Just sayin.


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## BigBeautifulMe

Liz,

That is SO wonderful. I'm so glad to hear you're succeeding with it, despite all the obstacles you've had to overcome (and it seems that you've been through way more than most). That shows...spunk. Which I already knew you had. But still. Strength. 

You will always have support here - I am sooooooooooooooo proud of you for sticking with it. Tis not easy, sometimes. Though it does get easier. Or, at least it did for me.

If the best thing for you right now is just support, just quit reading here. On the other hand, if you want my (as always) my completely unsolicited CPAP advice, keep reading. 

The Swift is a good mask, and the Elite (if that's what you actually have) is a great machine! It will actually give you _useful_ data, should you wish to access it. Your user manual should tell you how to do that, but if not, I can find out for you easily. I'm really happy this is what they set you up with, as it's a sign you have a good DME - they didn't try to pawn off the el cheapo stuff on you. 

The "auto on" feature I like, too, but the "auto off" I have disabled. The reason for that is that if you experience really big leaks during the night for an extended period of time, your machine could potentially turn itself off, thinking you're not on the other end of that mask. So if you have leak issues, if you start waking up with your machine off, that's a really easy setting to tweak.

If you don't like your Swift and it's been less than 30 days, I would take it back and exchange it. Something DMEs are loathe to tell you is that every mask has a 30-day manufacturer's warranty (for all the major manufacturers, anyway, and that includes Resmed). So if it's not working for you, they SHOULD (keyword: should) take it back and let you try something else, without charging you anything more. 

The cold+cpap combination is indeed the pits. What I do is make sure I have a full face mask on hand for those occasions, so I can breathe through my mouth. Obviously this isn't possible for everyone, esp. folks paying out of pocket, but - it's good thing to have for just such an occasion, if it's every manageable for you to do. I still find it the absolute pits to wear because I'm a stomach sleeper, and I don't sleep as well with the full face mask on, but I do it. 

Finally, you really don't have to wash your mask as often as they tell you you do. People will say "ewwww, gross" but they actually last longer if you don't wash them that often. Use your own best judgment, of course.


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## liz (di-va)

Oh! (and I forgot to add) No more waking up to pee a million annoying times in the night. Totally gone. Unbelievably fabulous.

Thanks so much for the support, BBM.

This: 


BigBeautifulMe said:


> The cold+cpap combination is indeed the pits. What I do is make sure I have a full face mask on hand for those occasions, so I can breathe through my mouth. Obviously this isn't possible for everyone, esp. folks paying out of pocket, but - it's good thing to have for just such an occasion, if it's every manageable for you to do. I still find it the absolute pits to wear because I'm a stomach sleeper, and I don't sleep as well with the full face mask on, but I do it.


...is a great idea. I had actually thought about it while I was all stuffed up, so I'm really glad to hear that it could work.

And don't worry--I don't wash my mask enough . But sometimes it just...needs it.


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## LillyBBBW

Liz I have that same machine and mask and I didnt know the machine had an auto on and off feature.


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## liz (di-va)

LillyBBBW said:


> Liz I have that same machine and mask and I didnt know the machine had an auto on and off feature.



I only know because the DME rep showed it to me! It takes about 5 seconds for it to start or stop.


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## Risible

This one's for Liz and most especially Ginny.

After my sleep test over a year ago, I got my Respironics cpap machine and a nose mask. I was never able to adjust to that nose mask - it leaked constantly; it freaked me out because I felt I was suffocating what with the chin strap; I'm a mouthbreather (which I told the DME people from the gitgo), so my mouth found a way to breathe despite the chin strap, with very sleep-disturbing results; and, finally, the amount of condensation the next morning seemed enough to drown me if I respirated it.

Anyhoo, after that experience I felt that sleeping without it (and the dreadful consequences of untreated OSA) was preferable to the extremely disturbed and disturbing sleep I got with the nose mask.

I managed to put off the inevitable (getting fitted with a face mask and taking the cpap plunge) for a year.

Went yesterday to the DME people again, and this time came away with an Ultra Quattro, after trying on several others for comparison. I tried to come up with excuses to postpone using it yet again ... but last night I just did it. And you know what? It wasn't bad. I had to adjust it again and again (it kept sliding around - I'll have to research tips on how to keep it in place as much as possible), but I got some real sleep, had me some vivid dream time, and, best of all, I didn't have that feeling like I was struggling to breathe in a wind tunnel (my pressure is 16)!

This morning I feel a little more rested than usual. I'm still sleepy, not full of energy like many people claim on their first morning after cpap therapy, but Chuck says my eyes look clearer and I'm a little more alert. The biggest differences were I didn't have to get up 2-3 times (or more some nights) to pee, and - no headache! Wonderful!

Thanks, Ginny, for all your encouragement and help. You are a wonderful cpap advocate! :wubu:


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## cupcakediva

I have a cpap now just the kind you put over the nose, at first it was creepy feeling very clostaphobic(dunno if i spelled that right) now im ok but i now have 2 absessed lower back teeth and my face is swollen and im having trouble having it on all nite


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## BigBeautifulMe

Oh, Dee, I am SO happy to hear that! :wubu: If you ever have any additional problems, feel free to ask - if I don't know the answer, I can almost always find out!  

Cupcake, I'm sorry, that sounds awful.  I'm not sure what I would do in that situation. Are you getting those teeth taken care of soon? My mom had a tooth abscess this year that the dentist said could have killed her - those suckers are dangerous.


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## liz (di-va)

That's so fabulous, Ris!  Congrats on taking the risk and giving it a whirl. I'm so glad you got some rest....!


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## Risible

Well, four nights now with my FF mask, and I haven't been able to wear it for more than a few hours at a time because leaks crop up. I take it off, sleep for an hour or two with it off, then put it back on ... the seal gets progressively worse throughout the night, so by 4,5,6 in the morning I've been having to take it off in frustration and leave it off. Either that or fiddle with it constantly, causing the mask to seal just until I start to doze off, then - _hisssssss_.

So I looked on cpaptalk.com for some possible solutions. I'm going to try the silicone ear plug trick, and I ordered a sample pack of Remzzzzs face cloths. Hopefully one of these will work for me. Anyone else here have the same issue? What did you do about it? I've slept with and without night lotion. I haven't tried an astringent applied just before putting the mask on, but I'm going to try that tonight.

Once I get the seal to take throughout the night, I don't think I'll have further problems adjusting to the FF mask. I was started on cpap therapy with a nasal mask, which did not work for me at all, and in fact was counterproductive - I was afraid to try again with the FF mask. However, the feeling/fear of suffocation I had with the nasal mask, and the forceful pressure of 16 up my nose isn't a problem with the FF mask. No rainout. No feeling like I can't breathe out sufficiently, causing me to hold me breath. So, yeah, I think I'll be fine (sans leaks).

I'm feeling a tiny bit more energetic, though I'm still excessively sleepy throughout the day. I am tired today, though; not enough therapy last night, I think.

Ginny, I have a Resmed M series Plus Cflex; it did not come with a smartcard. I don't see any slot to insert a smartcard if I had one. I don't see a USB port. I see people with similar/same machines refer to their "numbers" all over cpaptalk.com - I want numbers too! I want to quantify my therapy.

Do you know if my machine can accommodate a smartcard? Any comments?


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## BigBeautifulMe

Okay, yeah, then the one you linked to isn't quite the one you have. The one you have won't give you data at all. If you want data, you need at least an M Series Pro, or an M Series Auto. 

Usually the Plus machines do have a smartcard slot - but the only info you'll get off of it will be compliance data. That's the only kind of data that machine records. And all that will tell you is how many hours per night you're using it. Not very helpful. 

As to the mask, try adjusting it while lying down. Do you use the ramp button? If you're adjusting your mask at ramp pressure, it's probably starting to leak when it gets up to 16. If you're not using ramp, then like I said - try it already lying down. And if you're still having leaks, try the usual - making sure it's not TOO tight (a lot of people overtighten, and that can cause leaks). Sometimes it takes a few nights to find the "sweet spot" where it's not too lose and not too tight and won't leak. 

Failing all that, it could be you have the wrong size mask, or that this mask simply isn't working with your particular face shape. The BIG sucky part about cpap masks is that you can't really know until you try it. Your DME SHOULD take it back within 30 days...should. 

Another trick - buy a pair of cheap ladies' tights at walmart or something. Cut off the leg, and tie it around your head with the mask on. It kind of holds the mask in place, like an extra strap. Just make sure you don't block the vent holes where the mask expels c02. 

Hope some of that helps.


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## Risible

Ginny, I took your advice and tried the pantyhose trick - that works pretty well, though during sleep the mask seems to shift around some and I'll wake up with cold air (I prefer unheated air) blasting my closed eye, or leaking around my chin. But - much better.

I'm also using the ramp feature, which helps when nodding off.

I also ordered the Pur-Sleep aromatherapy kit, as I dread the stuffy CPAP air; I like my sleeping environment on the cool side (40s,50s) with nice, clean, spring-scented air, which I'm fortunate to be able to enjoy (well, pre-CPAP, at least) by leaving the french door(s) open. So, it's gonna take awhile to adjust, if not appreciate, the CPAP air quality. Hopefully aromatherapy will help.

I read your post way upthread (I think on page 1) about hose management; I'm gonna try your 3M cord bundler. That'll help, as well.

I'm gonna talk to my doctor about upgrading my machine to a Pro; after doing some more research on cpaptalk.com I want to be able to quantify my CPAP results. The machine I have now is only compliance data.

So, a week on the CPAP, and still adjusting. However, I can say I feel "lighter", less dragged down, during the day. I'm still prone to nod off; I've taken several naps, one of which was three hours after a 10-hour night mostly on CPAP. I suspect I have a huge sleep debt; I've snored for 15+ years, and was diagnosed with mild OSA (not enough to be treated) some 25 years ago.

Thanks, Ginny, for all your help.


----------



## BigBeautifulMe

Woooohoooo Dee! I am Sooooooo PROUD of you.  Great job taking charge of your own therapy - when one is sleep deprived, that's often the hardest thing to do. I'm so happy things are improving! 

Glad you find cpaptalk.com as good a resource as I do. It has its good and bad points like any other forum - but I've truly found it to be the best cpap forum out there. 

Anything you need - just holler.


----------



## MissToodles

I didn't think that my bipap would work, because it's titrated at such a low pressure. But after two weeks of using it, I feel so much better. My mind is less foggy when I wake up, I don't constantly get up to use the bathroom in the middle of the night and I'm told I don't snore. I'm a cynic at heart, so had those lingering doubts, but now I don't want to be without it. bipap, I love you. :smitten: :wubu:


----------



## BigBeautifulMe

Wooohooo! Yay!  I'm so glad to hear that, Toodles.


----------



## Risible

You're lucky, Miss T, to have a low pressure; mine's 16, and I'm always struggling with leaks.

Glad to hear you've benefited from it, and that you're now a convert! Me, I'm still adjusting to it, but I'd much rather sleep with it on than without it.

Here's to better sleep quality, and better quality of life!


----------



## Risible

So I've been using my CPAP steadily for, what, about a month now, keep it on all night and it's all good. Since I got the Remzzzzs cloth liners to help minimize leakage and the Pur-Sleep aromatherapy thing to promote lovely sleep, using the CPAP is almost a pleasant experience.

Last night, just as I was winding up a long novel, after which I was going to mask up and go to sleep, the power fails. So I try to sleep _without_ the CPAP - turns out, I can't! I tossed and turned, dozed off and woke up gasping, what a difference the CPAP makes! The power came back on about two hours later and I happily - and appreciatively - masked up and got some very restful sleep after that.

So it seems I'm a convert, folks!


----------



## BigBeautifulMe

I can't sleep without mine, either. It's a very, very scary feeling. 

FYI, they do make battery backups for CPAPs - you can find 'em on cpap.com, for instance. I want one, but they're kinda pricey - I haven't had the bucks to shell out yet. Fortunately we don't get many power outages here.


----------



## Risible

Power outtages are not uncommon in So Cal, and I was a very unhappy camper last night (okay, make that spoiled); Chuck and I were talking about getting a battery backup anyhoo, so I think I'll encourage him to hasten up that project. I don't think it'll be terribly expensive, maybe $100-200 for materials (a deep-cycle marine battery, for one)? I'll let you know what we do, k.

Speaking of camping, I am definitely going to get one of the power converter cords so I can bring Mr. CPAP along with us on our camping trips (we have a travel trailer, and the CPAP needs to be converted to 12v so I can use it without running the generator). We have a camping trip coming up in June with some of the Dims kids.


----------



## BigBeautifulMe

Woohoo!  You might have already seen them, but there are tons of threads on cpaptalk about doing that deep-cycle marine battery thing - I bet if you search for "marine" you'll find them, if you haven't already.


----------



## Risible

Well, happily, our travel trailer uses deep-cycle marine batteries, so Chuck not only knows about them, he's very enthusiastic about them, how they work, how they hook up, theories, etc. All fun and games, in his book.


----------



## disconnectedsmile

hello everyone. i am here because i am a concerned boyfriend who is researching the CPAP for my girlfriend.
i just have a few basic questions, because i know _nothing_ about CPAP (other than they are awesome).

1) does anyone have any recommendations on which brands/types are worth the money and which brands/types should be avoided? i should also note that a smaller size would be awesome, if possible. something that could be transported easily and possibly used where there is no electricity.
2) where could you buy one? i don't really see them being sold at Target. i mean, online outlets are fine, but are there any brick and mortar stores that sell them? maybe medical supply stores?
3) how much can i expect to pay for this? cost is not an issue for my girl's health, i just wanna know what i can expect to pay.

thanks everyone for taking the time to hear me out :happy: (sorry if the questions are stupid)


----------



## Risible

Well, BigBeautifulMe is the CPAP Queen in these parts, and I'm sure she'll be along directly to specifically answer your questions, DisconnectedSmile, but I wanted to impress upon you that sleep apnea is a very serious medical condition that should be supervised by a doctor. The CPAP is prescribed according to criteria gathered during a sleep study (again, prescribed by an MD). If your gf is indeed ceasing to breathe during sleep (apnea), she should see a doctor about this. Believe it or not, sleep apnea can be fatal if left untreated.


----------



## LillyBBBW

CPAP machines run for round about $1100 on average. I've seen them being sold on ebay for less and one being given away on Freecycle once. What they do is blow air up into the sleeping person's airway to keep it open at night. In a sleep study their airway function is measured so that they know exactly how much pressure the machine needs to give out in order to keep the airway open. It can't be too much, can't be too little. It is set specifically for the individual so you should know what level pressure your gf needs so the machine can be preset. It's like a prescription which is why you can't just go and buy one at Target. They have to be given through a distributor that acts like a pharmacy and you have to have a prescription from a doc unless you go the ebay/craigslise route. You can cheat the system but I don't know exactly how, never tired. My insurance ponied upt the cash. I've only owned one and like it well enough. That's all I can tell you brand wise. It's a ResMed Swift I think? Cute little thing looks like a Dirt Devil hand held water vacuume that sits on the table. I travel with it all the time. Unfortunately these things need electricity to run so you couldn't take it with you in the woods or something like that.


----------



## disconnectedsmile

LillyBBBW said:


> CPAP machines run for round about $1100 on average. I've seen them being sold on ebay for less and one being given away on Freecycle once. What they do is blow air up into the sleeping person's airway to keep it open at night. In a sleep study their airway function is measured so that they know exactly how much pressure the machine needs to give out in order to keep the airway open. It can't be too much, can't be too little. It is set specifically for the individual so you should know what level pressure your gf needs so the machine can be preset. It's like a prescription which is why you can't just go and buy one at Target. They have to be given through a distributor that acts like a pharmacy and you have to have a prescription from a doc unless you go the ebay/craigslise route. You can cheat the system but I don't know exactly how, never tired. My insurance ponied upt the cash. I've only owned one and like it well enough. That's all I can tell you brand wise. It's a ResMed Swift I think? Cute little thing looks like a Dirt Devil hand held water vacuume that sits on the table. I travel with it all the time. Unfortunately these things need electricity to run so you couldn't take it with you in the woods or something like that.


$1,100!? i don't have that money  this is sincerely, massively heart-breaking.
and it's something that you need a prescription in order to get?
there has to be an easier way. someone please tell me there's an easier way.
i mean, if i get something on ebay/craigslist, who's to say it'll work 100%?



Risible said:


> Well, BigBeautifulMe is the CPAP Queen in these parts, and I'm sure she'll be along directly to specifically answer your questions, DisconnectedSmile, but I wanted to impress upon you that sleep apnea is a very serious medical condition that should be supervised by a doctor. The CPAP is prescribed according to criteria gathered during a sleep study (again, prescribed by an MD). If your gf is indeed ceasing to breathe during sleep (apnea), she should see a doctor about this. Believe it or not, sleep apnea can be fatal if left untreated.


she doesn't have any health insurance or coverage of any kind, so i really don't know what to do at this point.

someone _please_ tell me there's some feasible solution out there, CPAP or otherwise.


----------



## LillyBBBW

disconnectedsmile said:


> $1,100!? i don't have that money  this is sincerely, massively heart-breaking.
> and it's something that you need a prescription in order to get?
> there has to be an easier way. someone please tell me there's an easier way.
> i mean, if i get something on ebay/craigslist, who's to say it'll work 100%?
> 
> 
> she doesn't have any health insurance or coverage of any kind, so i really don't know what to do at this point.
> 
> someone _please_ tell me there's some feasible solution out there, CPAP or otherwise.



Yes, unfortunatley the system is set up so that you need a prescription to buy a CPAP. They will ask you for it wherever you go. The best way to do it is to buy a used one. I notice they aren't being sold on ebay anymore, only the parts and accessories so they are really trying to crack down. I do see that they are being sold on craigslist though for round about $100 - $500. I don't know if it includes everything though. You can look there.


----------



## Risible

LillyBBBW said:


> ... Unfortunately these things need electricity to run so you couldn't take it with you in the woods or something like that.



Well, we're working on that; got a trip to the beach coming up next month and I find I can't sleep without my CPAP! Apparently my CPAP is 12v and uses a transformer to step down the 110v voltage it's plugged into. I need to find a couple of devices that will allow me to plug my CPAP (with its 110v power cord setup) into our travel trailer's outlet, which is 12v.

Other than that, I could buy a rechargeable battery pack that I've read good stuff about, but retails at $320 or so.


----------



## BeautifulPoeticDisaster

I get my CPAP on Monday and I am hoping it is as good as you all say it is. I'm looking forward to deep blissful sleep!!!!


----------



## Risible

Donni, if you haven't already, there are some very helpful posts in this here thread for a newbie user. I've been using mine a month and a half or so now, and I find I can't sleep without it.


----------



## BigBeautifulMe

disconnectedsmile, 

Yes, you have to have a prescription, and she'll have to have a sleep test first in order to get that. She needs to go to her doctor, who will refer her to a sleep center, and then once she has the sleep test she'll get a prescription for a CPAP. Don't let them tell her where to take it, though - get them to give it to you (DON'T let them argue on this, it's your right) and then shop around at reputable places online. I would suggest cpap.com, because they have excellent customer service. If she doesn't need a special kind of machine (most people don't) you can actually get the most basic models for around $300. I wouldn't recommend those, because they don't have exhale relief, and she might not be able to adjust to it very well, but at least they're an option. The most basic one I'd recommend runs about $699. And then there are other things she'll need in addition to that...mask (she'll probably have to buy more than one before she finds one that works), heated humidifier...

This whole proposition is insanely expensive without insurance, but as Risible said - apnea can be fatal if not treated. It can lead to strokes, heart attacks... it's not something you want to mess around with. It's worth getting a loan or whatever you have to do to be able to afford it.

That being said... IF you guys are really low income, there's a group that may be able to help you - Awake in America. They can help with the sleep study and the machine. It's worth looking into. 

I'm sorry - I agree this disorder is a bitch to treat and insane as all hell...and it really, really sucks when you don't have insurance. But it's not just a quality of life, make her feel more awake issue. It's a serious health concern.  Wish I had better news for you.


----------



## liz (di-va)

I'm so glad it's working for you, Ris. I use mine every time I sleep now, too. I find that my sleep (is this true for you too?) is still in the process of normalizing after so many years without (it's almost like my sleep habits are going back to pre-apnea), but the machine is crucial.


----------



## Risible

To be honest, I don't remember what my sleep habits were like pre-apnea! I had my first sleep test, what 25 years ago? And I was found to have OSA, but so mild that there was no followup. I let the OSA, which got steadily worse, slide for, well, years before bringing it up to my PCP to get that CPAP ball rolling.

Getting used to the CPAP wasn't easy, took a few weeks, but what's most remarkable to me (besides, oh, say - no morning headache, no irresistable daytime sleepiness, no more suffocation nightmares) is the quality of my dreams - they're much more vivid and (usually) pleasant; that, and no more getting up multiple times to pee! Whee!

I've read that it takes a while (weeks, months) to sleep off that "sleep debt," so I figure life will improve more as times goes on. I can say that my pulse rate has dropped, which is great!


----------



## liz (di-va)

Risible said:


> To be honest, I don't remember what my sleep habits were like pre-apnea! I had my first sleep test, what 25 years ago? And I was found to have OSA, but so mild that there was no followup. I let the OSA, which got steadily worse, slide for, well, years before bringing it up to my PCP to get that CPAP ball rolling.
> 
> Getting used to the CPAP wasn't easy, took a few weeks, but what's most remarkable to me (besides, oh, say - no morning headache, no irresistable daytime sleepiness, no more suffocation nightmares) is the quality of my dreams - they're much more vivid and (usually) pleasant; that, and no more getting up multiple times to pee! Whee!
> 
> I've read that it takes a while (weeks, months) to sleep off that "sleep debt," so I figure life will improve more as times goes on. I can say that my pulse rate has dropped, which is great!



Oh man, dreams! My subconscious is so busy....pulling out stuff from 20 years ago to play with. It's wild, isn't it?

I hear you about the not peeing thing. It's so much saner/better.

I keep hearing about the sleep debt thing too. Will be interesting to see how it gets paid off .

Very glad things are working well for you!


----------



## Risible

And me, you, Liz.

Yeah, the dreams! Seems they're more technicolored, or something. And, weird, my dreams are pulled from the archives of my mind also. I didn't expect that.

Oh, and sometimes I wake up to shift position and body parts that I was laying on feel absolutely crushed, painful, even, apparently because I was so heavily asleep.


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## BigBeautifulMe

When we have apneas, we toss and turn, keeping parts/sides of our bodies from getting sore (but of course also having awful sleep). When we have cpap, we stop tossing and turning, so we start getting sore b/c we don't flip as much. It's actually something a lot of people notice when they start CPAP. I think it's interesting!


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## Risible

I have to say, though, my daytime joint aches and pains have greatly decreased. Am able to cut back on an NSAID I take.


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## BigBeautifulMe

wooohoo! That's great news, too.


----------



## BeautifulPoeticDisaster

Ok, I'm on the CPAP now...have been since Monday night.

Monday night was ok, Tuesday kept waking up every hour with leeks and air blowing into my eyes and then last night I woke up at midnight with the mask on my bedside table and the machine turned off!!!!! I don't remember doing it AT ALL. It's weird. I know I went to bed with it on.

I'm not sure yet if I like it or not. I got the full face one cos I know for sure I am a mouth breather. I don't like it that the air is warm, lol, I would prefer it air conditioned! I do like the fact that after years I can now seem to sleep on my back ok.

The jury is still out. All I know is I am the sleepiest I have ever been. I'm not getting much sleep at night because I keep having to readjust my mask. It is on hella tight, but somehow I still manage to get leaks.


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## LillyBBBW

BigBellySSBBW said:


> Ok, I'm on the CPAP now...have been since Monday night.
> 
> Monday night was ok, Tuesday kept waking up every hour with leeks and air blowing into my eyes and then last night I woke up at midnight with the mask on my bedside table and the machine turned off!!!!! I don't remember doing it AT ALL. It's weird. I know I went to bed with it on.
> 
> I'm not sure yet if I like it or not. I got the full face one cos I know for sure I am a mouth breather. I don't like it that the air is warm, lol, I would prefer it air conditioned! I do like the fact that after years I can now seem to sleep on my back ok.
> 
> The jury is still out. All I know is I am the sleepiest I have ever been. I'm not getting much sleep at night because I keep having to readjust my mask. It is on hella tight, but somehow I still manage to get leaks.



I'm having trouble with mine. When it works it's fantatic! The other night though I had a dream that I was having an asthma attack at work. A co-worker looked on in horror as I couldn't get air in through my nose and my lungs couldn't take in air. I was about to rally myself to go to the ER when I woke up, face slumped deep into the pillow and my nasal tubes mashed up and to the side of my face blocking my nostrils almost completely. I've been trying to position myself better at night so this doesn't happen again. I do feel better when I sleep with it the right way so it pays to keep at it. When you sleep your body just goes slack in a way that you are not aware of when you lie down initially and the pillow and the general collapse of your face can cause the mask to slip away a bit from the secured position you had it. It seems no matter what mask I use it's going to be an issue.


----------



## Risible

BigBellySSBBW said:


> Ok, I'm on the CPAP now...have been since Monday night.
> 
> Monday night was ok, Tuesday kept waking up every hour with leeks and air blowing into my eyes and then last night I woke up at midnight with the mask on my bedside table and the machine turned off!!!!! I don't remember doing it AT ALL. It's weird. I know I went to bed with it on.
> 
> I'm not sure yet if I like it or not. I got the full face one cos I know for sure I am a mouth breather. I don't like it that the air is warm, lol, I would prefer it air conditioned! I do like the fact that after years I can now seem to sleep on my back ok.
> 
> The jury is still out. All I know is I am the sleepiest I have ever been. I'm not getting much sleep at night because I keep having to readjust my mask. It is on hella tight, but somehow I still manage to get leaks.



Sounds familiar, Donni. I had that same problem - mask leakage - my first week or two. Drove me crazy! I'd _just_ start to doze off then have to wake up to adjust the damn mask. Again. Over and over. 

I found this product through the forum at cpaptalk.com, and have been using them nightly ever since I got them (I ordered the sample to make sure they'd work for me). Expensive, yes, but well worth a restful night's sleep for me.

I still have to cinch my mask pretty tight, though lately the straps seems to have stretched out and are not quite as tight; in fact, the forehead straps are downright loose. But the seal still holds very good with the Remzzzs.

I like very cool air also. My Remstar Plus series M has a humidifier and a heater; I keep it at the very lowest setting so the air doesn't heat, and it's fine for me. In fact, the air blowing in (I have a pretty high pressure of 16) is kinda like having a fan directed at my face; it feels good.

Lilly, before I began using my CPAP I used to have dreams of suffocation, etc., all the time. Scary, aren't they?


----------



## BeautifulPoeticDisaster

I'm on the highest setting....so when it finally kicks in it feels like I am in a tornado, lol. 

Those RemZzzs look good....do they make your face hot? I am very anti heat when I sleep...must be cool to cold at all times.


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## Risible

I like it cold myself, especially at night. I leave the bedroom door open sometimes in the winter, and the ceiling fan starts running nonstop beginning in May usually. My ideal nighttime room temp is in the 40s or low 50s. So, I'm with ya on that. 

No, the liners don't add to the heat load, at least not with me. I barely notice they're there. Like I said, try the sample pack, it's worth the ten bucks or whatever to see if they work for you. They are *the* answer to minimize mask leaks for me, with no side effects.

What kind of machine do you have? Does it have a "ramp" feature? If it does, use that to get used to the blowing sensation. It lowers the pressure (on my machine from 16 down to 9, which is, like, barely blowing IMO) for a half hour or so to allow the user to drift off, while it incrementally increases to full pressure. I started with a nose mask and, with my high pressure setting, it was so uncomfortable I couldn't tolerate it. I felt like I was having to gulp air, and it wasn't a good feeling at all. Once I got a full-face mask (a Mirage Quattro) and began using the ramp button, that blowing my face off sensation was minimized, and I was able to get to sleep before the machine ramped up to full pressure.

These days I don't even use the ramp feature anymore; I guess I've gotten used to the air pressure. Now it feels good and comfortable.

Another trick that I've been using to become accustomed to my CPAP (which I've been using for almost two months now) is aromatherapy. I prefer the lavendar scent, "Peace." The scent lasts just long enough to carry me off to sleep. It is indeed soothing, as the website claims. At least, it is for me. Again, I ordered the sample pack with three full-size scents.


----------



## Geektastic1

Risible said:


> I found this product through the forum at cpaptalk.com, and have been using them nightly ever since I got them (I ordered the sample to make sure they'd work for me). Expensive, yes, but well worth a restful night's sleep for me.



Thanks for posting this--I just sent a link to this product's website to my friend who uses a full-face mask, which she's had no end of problems with. When I first started CPAP, I had a full-face mask. I really had an awful time with it, and could just not use it at all. I was so tired after a night full of wrangling with that mask. The leakage was really horrible. 

Luckily, I found out that I can use a nasal pillows style mask. I thought before that I probably breathed through my mouth and needed a full-face mask, but it turns out that I don't and that I can use the nasal pillows just fine. I only have a bit of trouble if my nose is congested. I'm so glad there is a product now that will help people who have to use a full-face mask.


----------



## BigBeautifulMe

BigBellySSBBW said:


> Ok, I'm on the CPAP now...have been since Monday night.
> 
> Monday night was ok, Tuesday kept waking up every hour with leeks and air blowing into my eyes and then last night I woke up at midnight with the mask on my bedside table and the machine turned off!!!!! I don't remember doing it AT ALL. It's weird. I know I went to bed with it on.
> 
> I'm not sure yet if I like it or not. I got the full face one cos I know for sure I am a mouth breather. I don't like it that the air is warm, lol, I would prefer it air conditioned! I do like the fact that after years I can now seem to sleep on my back ok.
> 
> The jury is still out. All I know is I am the sleepiest I have ever been. I'm not getting much sleep at night because I keep having to readjust my mask. It is on hella tight, but somehow I still manage to get leaks.


Donni, you don't HAVE to have warm air, you know that, right? I don't use my humidifier at all, but if I did, I would use it with the heat OFF (just as a passover humidifier). I don't like warm air, either.


----------



## Risible

Geektastic1 said:


> Thanks for posting this--I just sent a link to this product's website to my friend who uses a full-face mask, which she's had no end of problems with. When I first started CPAP, I had a full-face mask. I really had an awful time with it, and could just not use it at all. I was so tired after a night full of wrangling with that mask. The leakage was really horrible.
> 
> Luckily, I found out that I can use a nasal pillows style mask. I thought before that I probably breathed through my mouth and needed a full-face mask, but it turns out that I don't and that I can use the nasal pillows just fine. I only have a bit of trouble if my nose is congested. I'm so glad there is a product now that will help people who have to use a full-face mask.



You're very welcome! BigBeautifulMe has been very, very helpful to me in my CPAP journey - both through this thread and others and through PM. She's been fantastic in getting me oriented, making suggestions, answering my questions and calming my fears, so I guess I'm just paying it forward to others now. I hope your friend finds the liners as helpful as I do.

I started with a nasal mask myself along with a chin strap, but that combo didn't work well for this mouthbreather; oy, it was very annoying and I got hardly any sleep. After I switched to the full-face, started with the liners and the aromatherapy, everything fell into place, and now I wuv my CPAP! :wubu:


----------



## BigBeautifulMe

By the way, Donni - it's counterintuitive, but, actually, tightening straps TOO much is a common way to make a mask leak. Keep trying - and if you absolutely can't get it to leak, you may not have the right mask to fit your face. Don't give up - you'll find one! Finding a mask that works with your face is the hardest part of the whole process. It can be tedious, expensive, and frustrating - but it's worth it. It really is. 

FYI, Lilly - I had that problem until I found the mask I'm using now. I love it because it vents UPWARD (towrads the headboard) instead of outward, so no matter how I bury my face in the pillow, I never find myself blocking the vents.


----------



## Risible

The hosing for my mask also swivels upwards, in fact, 360 degrees. I have no problem lying on my side; I just crank the hose up and over my head. I've never had a problem with that.


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## LillyBBBW

Its not the hose that's the problem, it's the aparatus withthe nasal pillows on it that gets mushed to the side of my face when my face rests in to my bed pillow. The nasal pillows are presssed askew and I'm basically trying to suck in air around mangled plastic though my mind makes me dream that my nose is stuffed up.


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## BeautifulPoeticDisaster

I had a misreable nights sleep last night.  I kept choking and coughing with the mask on. I slept with it on from 9-12pm and then took it off. When I woke up for the day at 7 I had a huge headache My fault, I know. I had to call into work because I could not function. Everytime I stopped moving, I fell asleep. So I went back to bed with the mask on from 8:30-12:30 and woke up and didn't feel like I had slept much, but I coughed nearly the entire time.

Please tell me it gets easier. I'm really struggling here.


----------



## LillyBBBW

BigBellySSBBW said:


> I had a misreable nights sleep last night.  I kept choking and coughing with the mask on. I slept with it on from 9-12pm and then took it off. When I woke up for the day at 7 I had a huge headache My fault, I know. I had to call into work because I could not function. Everytime I stopped moving, I fell asleep. So I went back to bed with the mask on from 8:30-12:30 and woke up and didn't feel like I had slept much, but I coughed nearly the entire time.
> 
> Please tell me it gets easier. I'm really struggling here.



Is it the mask, the air, dust, a funky smell that's making you gag like that D?


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## BeautifulPoeticDisaster

LillyBBBW said:


> Is it the mask, the air, dust, a funky smell that's making you gag like that D?



I think it is the air. I'm asthmatic and breathing in warm air makes me choke. The mask seems to be ok, I guess, aside from leaks and the fact that I cannot sleep in a comfy position.


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## LillyBBBW

BigBellySSBBW said:


> I think it is the air. I'm asthmatic and breathing in warm air makes me choke. The mask seems to be ok, I guess, aside from leaks and the fact that I cannot sleep in a comfy position.



I was told that I could only use distilled water in the CPAP chamber. I used tap water when I traveled and it was fine so I used the tap water when I got home too. Unfortunately the tap water at home is gnarley because I woke up with chest congestion every morning till I went back to distilled. Which has nothing to do with nothing but I'm mentioning it anyway.

Last night I slept with the humidifier on the lowest setting just to see if I'd like cool setting better. I woke up gagging with a tonsil so dry I could barely swallow. So much for that. I turned the CPAP thermostat up and did much better. I don't have _terribl_e asthma but the humidifier doesn't do much for it. It helps other things though.


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## BeautifulPoeticDisaster

LillyBBBW said:


> I was told that I could only use distilled water in the CPAP chamber. I used tap water when I traveled and it was fine so I used the tap water when I got home too. Unfortunately the tap water at home is gnarley because I woke up with chest congestion every morning till I went back to distilled. Which has nothing to do with nothing but I'm mentioning it anyway.
> 
> Last night I slept with the humidifier on the lowest setting just to see if I'd like cool setting better. I woke up gagging with a tonsil so dry I could barely swallow. So much for that. I turned the CPAP thermostat up and did much better. I don't have _terribl_e asthma but the humidifier doesn't do much for it. It helps other things though.




I don't have the humidifier with mine...it's just the air blowing bit. I think it might just be the dryness of it all that is giving me the coughs. The throat always feels scratchy and no matter how much I drink my throat and mouth feel like a desert. And this is only day 4, lol. I'm not doing too well!


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## Risible

I don't use my humidifier. Yeah, the mouth dries out and everything (not so much the nose), but that only seems to make it easier for me to breathe.

All I can say, Donni, is using the CPAP did get easier, after a couple of weeks, but I didn't have the choking/coughing sensations that you are having.


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## LillyBBBW

Yes, I totally gag without the humidifier. I turned it almost off admittedly because Ris said she doesn't use hers. I wanted to see how it would work for me. After my eye started watering and I nearly spit my tonsil out I knew it was a bad idea.  Even after I turned the humidifier up I woke with a nostril full of mucus. I definitely need it, maybe that's an issue for you too BBSSBBW.


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## BigBeautifulMe

Yeah, if you don't have a humidifier and the air is too dry and causing you to choke, I would definitely get one. I don't know how the UK health system works - hopefully that won't be too hard. It might help. Keep in mind that you can use it with the heat on OR off, if you get a heated one. I'd try to push for that so you have the option and can see which works best for you.

ETA: Also, I really don't understand why the air seems warm to you. The air always feels SUBSTANTIALLY cooler to me coming out of my CPAP. I've never heard someone describe it as warm that didn't have a heated humidifier or a heated hose.


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## BeautifulPoeticDisaster

I SLEPT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I'm so excited! I SLEPT!!!!!!!!!

I have learned a couple of things. I HATE the ramp feature and turned it off last night. I would get my mask adjusted and I would get all comfy and then after the 20 min ramp I would have leaks all over the place. So I turned it off last night and it was glorious.

I went to bed about 11pm and I was determined. I put my mask on, got comfy on my tummy and turned in on. I was ready for WWIII and I was determined to win. I have discovered once the CPAP is on, you can pull the mash towards your chin....it kinda hurts the bridge of your nose, but it stops the leaks!!! It was amazing going to sleep on my belly. AMAZING. I know I slept good because disgustingly, my mask was full of drool when I went to put it back on after the loo. eww. 

I woke up twice last night to use the loo and then once this morning about 7 when Mike got up to go pick up his son. I went back to sleep with the mask on and slept til 10. What a refreshing night! 

It was still annoying somewhat as I am still coughing a lot, but this is a good start me thinks.


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## BigBeautifulMe

OMG - YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Donni, I am SO happy for you! 

I can't believe I didn't think to tell you that - yes, you should always adjust your mask to your face at full pressure, because it will leak later if you only adjust it to the ramp pressure. Good job figuring that out on your own since stupid me didn't think to mention it. :doh: Some help I am. lol.

I am so, so glad you're sticking with it and making it work. It's so hard - I'm soooo proud of you.


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## Russell Williams

I have been very lucky with my CPAP. I have been using it for perhaps seven years now and have never had any serious problems. There are times when I use the dehumidifier but often I do not. In winter I like to open the window and pull the covers over my head. Because the CPAP is providing air I do not get carbon dioxide buildup under the covers. It makes me feel all snuggly.

I have a device that can be plugged into a cigarette lighter in a car and turn battery voltage into 110 V and then I can plug the CPAP into it. This way, if someone else is driving, I can sleep in the car. About two years ago I took an 8000 mile train trip and used my CPAP every night and every nap. My biggest fear was that someone might steal it or that it might break down when I was 3000 miles away from home.

While I still take many naps I am not as tired as I used to be.

The water here has so much limestone in it that, once when I ran out of distilled water and used tap water for several days, I started getting limestone deposits in the bottom of my dehumidifier.

I know that I am fortunate that I have had no major problems with my CPAP and I hope that all of you develop the same good fortune.

Russell Williams


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## BigBeautifulMe

Russell - just checking. You're more experienced than I am, even, so I'm sure this has occurred to you, but you don't put the covers over the mask vent, do you? The mask vents flush out the C02 you're breathing out, and if it all gets trapped under there with you, well... it wouldn't be good.


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## BeautifulPoeticDisaster

ok question. I slept good last night.....all 14 hours of it. I slept with my mask on for all of it, but shouldn't I be sleeping less????


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## BigBeautifulMe

No, Donni, not right away. You've got YEARS of sleep deprivation to make up for. Depending on how long you've been untreated, it will take you quite some time of sleeping normally to start sleeping less.


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## LillyBBBW

*bump*

Well I had to go back to the sleep doctor. Im still having issues with tiredness. For those not up to speed, the old sleep test showed I had Obstructive Sleep Apnea (OSA), but when they put me on a cpap there was also evidence of Central Sleep Apnea (CSA). The test was a little murky though so they weren't sure. They gave me a cpap anyway and we just figured we'd see how it goes. And my conclusion is, not as well as it could. 

So I went for my appointment today and I'm scheduled for another sleep study in September. The doc explained that CSA is when your brain tells your body that you have too much oxygen when you actually don't, so it sends signals to close your nose and throat. Then when your oxygen gets low it starts the breathing back up again. Apparently these episodes take place rapidly allowing for rises and drops, mostly drops, in oxygen levels. I asked what the treatment for CSA was and the doc said they give you a different kind of mask. A non vented mask. He compared it to breathing in a bag rather than the current system where the mask has vents to allow air to escape. There is nothing anyone can do to fix the brain but this new fangled mask will keep my oxygen levels stable regardless of what I do in my sleep. They're going to do another sleep study where I sleep half the night with the normal cpap and the other half with this non ventilated mask to see what my bio reads are. At least that's what I understood it to mean. 

Just thought I'd share in case someone is curious.


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## BigBeautifulMe

Hmmm - if you have significant CSA as well as OSA, you should be given a different type of machine, not just a different kind of mask. A machine that will "force" you to breathe every so often if you don't do it naturally. I've never heard of a mask that doesn't vent? Carbon dioxide would build up, and that's very dangerous, at least to the best of my knowledge. But I'm not a doc. Still, I'm pretty confused by this.


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## Risible

I know nothing of it, Lilly, but I know that Ginny does, so following up on her comment - did you ask the doc about the recycling of air issue? How would that do a body good when it's known to be harmful?

Sorry to hear you're still having sleep issues.


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## LillyBBBW

I really don't know. Those were the phrases the doctor used and he did describe it like putting a bag over the face and breathing in to the bag that would be supplying me with air. But he said it was a mask.  Possibly this mask has less ventilation to it than the one I use currenty? I don't know. Somehow I feel confident that they're not going to try to asphyxiate me.  It seemed more like they wanted to have more control over the levels of oxygen in the air I was receiving so that no matter how I was breathing I would always have enough? It was probably a cheap explanation they gave. I was really in a rush to get out of there because I had dinner reservations with OneWickedAngel and Leesa so I was trying not to take too long in there.


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## BigBeautifulMe

If they want to control oxygen levels in the air you're getting, they'd have to add an oxygen tank to your regimen. CPAP itself doesn't push oxygen into you - just straight air. 

Let me know when you find out more - I'm curious because I've never heard anything like this before.


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## LillyBBBW

BigBeautifulMe said:


> If they want to control oxygen levels in the air you're getting, they'd have to add an oxygen tank to your regimen. CPAP itself doesn't push oxygen into you - just straight air.
> 
> Let me know when you find out more - I'm curious because I've never heard anything like this before.



Will do cutie pie!  My appointment is for September 6 but I'm on the cancellation list and may go sooner.


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## LillyBBBW

One more thing I should mention. The doctor's I spoke with regarding the cpap/sleep apnea were really trying to play up the merits of weight loss surgery. I swatted them away but has anyone else had this hard sell run by them when going through the motions?


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## BigBeautifulMe

What usually works is "Oh really? The most recent study I saw said most people who have weight loss surgery who are sleep tested again afterwards still need their CPAP. They may need a lower pressure, but it's still the same machine and mask, so what's the difference?"

That usually shuts them up.


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## Never2fat4me

LillyBBBW said:


> One more thing I should mention. The doctor's I spoke with regarding the cpap/sleep apnea were really trying to play up the merits of weight loss surgery. I swatted them away but has anyone else had this hard sell run by them when going through the motions?



Hi Lilly,

My doctor actually did the opposite: when I asked whether losing weight would improve my sleep apnea, he told me that I may want to lose weight for other reasons, but that it would not help my apnea. Now I know medical advice is different for everyone - I am heavy but not at weight where weight loss surgery has been recommended; my sleep apnea is caused by very large tonsils/generaly fleshiness at the back of the throat; and I don't have total obstruction of the airway (doctor described my episodes as like breathing through a straw, which eventually forces me to breathe deeply - about 67events/hour) - but it was really refreshing to see a doctor who doesn't automatically prescribe weight loss as the panacea for fixing everything wrong with me.

Chris


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## Linda

A little off the topic but not too far. Were any of you single when you got your C-Pap and then started dating someone? That terrifies me. "Umm excuse me while I put on this mask so I can live through the night." I don't know why I am having a hard time with this. It is probably the number one reason why I haven't started dating since the divorce...and that was over a year ago now.


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## BigBeautifulMe

I've never had a problem. Any guy worth sleeping with will care more about your health than about mask-less sleep. Besides, he'll sleep better with you masked up than with you snoring and choking and gasping. Trust me on this.


----------



## Linda

BigBeautifulMe said:


> I've never had a problem. Any guy worth sleeping with will care more about your health than about mask-less sleep. Besides, he'll sleep better with you masked up than with you snoring and choking and gasping. Trust me on this.




LOL That is true.


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## Risible

Linda said:


> A little off the topic but not too far. Were any of you single when you got your C-Pap and then started dating someone? That terrifies me. "Umm excuse me while I put on this mask so I can live through the night." I don't know why I am having a hard time with this. It is probably the number one reason why I haven't started dating since the divorce...and that was over a year ago now.



I'm married and I was shy about donning the mask around my own husband; I can see why it would be difficult to wear it in a dating relationship. Nevertheless, as Big Beautiful Me points out, a real man, one who cares about _you_, isn't going to react negatively.


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## BigBeautifulMe

I'll be open and honest here - I've had a couple of just casual encounters as well as a few relationships - not one person has ever flinched.


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## Linda

Ok well I will let you know how it goes when I finally have my first post married sleep over. Might be a very long time though....there is no line forming. haha


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## LillyBBBW

Linda said:


> A little off the topic but not too far. Were any of you single when you got your C-Pap and then started dating someone? That terrifies me. "Umm excuse me while I put on this mask so I can live through the night." I don't know why I am having a hard time with this. It is probably the number one reason why I haven't started dating since the divorce...and that was over a year ago now.



Long before I had ever been diagnosed with apnea a friend of mine was told she had sleep apnea and had to wear a cpap to bed. She was practically rolling on the ground in agony over it for the very same reason you posted. I was young, I was stupid, I was clueless but strongly empathetic and wanted to console my friend. I sat up straight and tall and told her what I believed. I told her that these guys weren't going to give a crap about that mask, they're too busy looking at all her other junk. Anyone who get's that far with her will be so happy to be there she could wear headress from the Copacabana and he wouldn't care. I don't think she was fully convinced but it was what it was. Later though she took me aside and exclaimed, "You were SO right! Nobody cares about it at all."

I am like a leper in this town so I've had no action since I got my cpap however I do travel a lot with the choral group I sing in. I get assigned a roommate each time and not a single person has batted an eye over it. A few marveled at how quiet it was and some even peppered me with questions as soon as they saw it. There was a personal interest because either they or someone they cohabitate with needs to go and get one but they'd been putting it off. I don't think there's anything scary behind wearing your cpap when entertaining a sleepover. I would be less concerned with what he thinks when I'm wearing it than what he hears if I'm not.


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## Never2fat4me

Linda said:


> A little off the topic but not too far. Were any of you single when you got your C-Pap and then started dating someone? That terrifies me. "Umm excuse me while I put on this mask so I can live through the night." I don't know why I am having a hard time with this. It is probably the number one reason why I haven't started dating since the divorce...and that was over a year ago now.



BBMe beat me to the punch and pretty much summed up what I was going to say. Unless a guy is really shallow, he shouldn't be bothered by this. Much better to have a funny looking machine on than to be kept up all night by your snoring! 

Now what really would be a sight is if he used one and you both are using one on each side of the bed. Kind of romantic in a bizarre way...  

Chris


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## LillyBBBW

*bump*

Just wanted to check in here. I'm having a follow up sleep study tonight! :shocked: In the whirlwind of the Jersey bash I completley forgot about it. I had a late night class last night and I'm operating on less than 4 hours sleep so I'm exhausted. Should be a gas tonight. I'll let you all know how it went tomorrow.

Hey Linda, are you still out there? How are you doing with your CPAP?


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## Risible

*groan* sleep study - i hates 'em.

Well, Lilly, have fun gettin' all hooked up with that 5-pound wiring harness that practically immobilizes when one is trying to get some sleep ... if you can get sleep, knowing that someone is watching you on CCTV and listening to every breath you take ... or don't.  Oy. Buckets of fun.


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## BigBeautifulMe

Yeah, sleep studies are NOT fun. I'll be thinking of you. Good luck, Lilly!!


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## LillyBBBW

Well, they moved the sleep study place to this slowcation way out in Needham. The only way to get there is by car or horseback, and it was raining.  My sister brought me in the dead of night and I had no dinner. There was a McDonald's close by so we swept in the drive-thru really quick and I got a burger. By the time we got to the sleep study place I was sitting in the lobby gulping down a McDonald's burger. When the sleep tech came to get me he kept looking at me and glancing at the empty burger container in my hand as he lead me along to the testing place. Nice.

Now I'm finally back home and jumped in front of the computer with epoxy paste*** still stuck in my hair. Before I was wired up I discussed my reason for being there with the tech and he proclamed that I'm probably a mouth breather and that's why the masks weren't working for me. He fitted me with a full mask, wired me up with wires and paste, strapped my chest and waist with some strap things that measure my breathing, taped a blood gas reader to my finger and set that box with all my wires coming from it right next to me on the table. The room was warm and comfortable with a REAL mattress, unlike the last place I was tested with the thick vinyl matt. I was so tired that I fell asleep relatively quickly even with all that stuff glued and strapped to my body. A tech came in twice in the night to fix the mask because it was leaking. I think once it was to adjust the pressure in the cpap, up or down I couldn't tell you. My guess would be up. 

I was shaken awake a little before 6am, unplugged and unwrapped, given MORE forms to fill out and then allowed to leave. I guess I'll find out the results when I see my doctor in a few weeks so we can discuss what's next but it is beginning to look like it was simply a bad mask and not central SA. The tech is not allowed to say. I woke up disappointed because I wanted to sleep more, I was still tired and could have slept another hour and a half I'm sure. Do I feel better with the mask? I don't notice any remarkable difference. I didn't wake with dry mouth or a sore throat so that's a good sign. We'll wait to see what the doctor says about the results but as of now I'm alive. He wouldn't let me keep the mask.  

One thing though, I didn't have dry mouth or a sore throat when I woke but I did wake up thirsty. I'm rarely ever thirsty but I woke up jonesing for a drink. Also I'm usually sprinting for the bathroom as best a fat girl can do at this rate and that didn't happen either. I didn't have to go till after I was unwired and filled out all the forms. It seems I woke up like a normal person for once. Odd. Then I went in search of water. The full face mask will most likely be a part of the solution whatever my results are. It may be all really.

Here's a fun bit of triva. When I was waiting for my dad to pick me up I sat in a deserted lobby. There was a little zine on the table that was called "Gripe." I got really excited and was thinking, "Now THAT'S what I'm talking about!" I picked it up thinking it was some kind of cynical irreverent zine with interesting perspectives and news of things going on in the world. I opened it and couldn't make out any of the words. Turns out the word "Gripe" is Portuguese for "Flu." There's a large Brazilian community that uses that hospital and the zine is a publication that teaches how to arm yourself from flu and treat others in your household who have it. 

**Some of you say they didn't put epoxy paste on your head in your study but in mine they attach electrodes to your head by smearing the paste on either side of your scalp at the base of your neck, your crown, your frontal lobes, your ears and your temples. The doctor complained about my thick thick carpet of super curly hair, saying he had difficulty finding my scalp through all that forrestry. It took him quite some time just trying to get my head wired up and I could tell it was frustrating for him. If you get a sleep study in Needham expect to be pasted on your head. The other woman who came in for the study left with her hair sticking up straight and tall with the epoxy still in her hair. She didnt know about the epoxy and had to go to work like that. I've never seen my curls with better hold though. They ought to sell that stuff, I would have used it in my punk days.​*​


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## Risible

Lilly, what kind of mask are you using now - a nose mask? I was originally given a nose mask, though I was clear and up front that I'm a mouthbreather. Though I used a chin strap my mouth still managed to get open when I fell asleep, causing all kinds of uncomfortable sensations and rude noises. I became quickly disenchanted with the whole CPAP thing and refused to use it for a year while I worked up the wherewithal to try a full face mask.

Turns out, the full face mask is my sweet savior for a good night's sleep, and once I got one I quickly became accustomed to it; we're good buds now. I hope it's the same for you.

I hope your hunch that your's is not central SA comes true; OSA would probably be easier to deal with, I would think.

Had to laugh at your epoxy story - oh, yeah, I remember pulling that gummy stuff from my hair.


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## LillyBBBW

Yes, I'm using a nose pillow now. It's funny because I suspected I might be a mouth breather at one point. I started putting a verticle strip of tape over my mouth to keep my lips closed but got tired of doing that. One night I recall being wakened because I blew a huge puff of air out of the sides of my mouth around the tape. The tech says that was probably the way I slept each night and that was the one time I was wakened by it.


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## olwen

I've been diagnosed with mild sleep apnea and I'm going for the titration tonight. I had hoped I wouldn't have to worry about all that gunk in my hair again since I just got it done last week but it looks like it'll get messed up and gummy. I wondered the same thing about my hair when I went for the first study. There were no problems tho from the sleep tech. Lilly, I'm sorry you got grief from yours. I am however wondering about if the straps from whatever mask I try will actually fit over my hair and not slip off....I guess I'll find out soon enough.


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## BigBeautifulMe

Lilly, even though it sounds like it wasn't the _best_ experience, I'm glad they've (hopefully) figured out what's going on.  Good luck with your new full face mask!  Let us know how it goes.


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## LillyBBBW

olwen said:


> I've been diagnosed with mild sleep apnea and I'm going for the titration tonight. I had hoped I wouldn't have to worry about all that gunk in my hair again since I just got it done last week but it looks like it'll get messed up and gummy. I wondered the same thing about my hair when I went for the first study. There were no problems tho from the sleep tech. Lilly, I'm sorry you got grief from yours. I am however wondering about if the straps from whatever mask I try will actually fit over my hair and not slip off....I guess I'll find out soon enough.



I couldn't really get too upset with him olwen. I have a LOT of hair. Even I don't like digging around in it. No twists of braids for me, it would take me forever. God forbid I should ever get sick but if I ever do I could experience a major hairloss and no one would know. I will say though that the note told me to bring my mask and stuff. I brought the whole cpap and the tech never even looked at it. I feel like I carried that thing around everywhere for nothing. I was told the same when I had knee surgery back in March. The case was never even opened.


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## liz (di-va)

Hope the new mask works well, L! Good for you for tackling the sheer fun of another sleep study.


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## olwen

LillyBBBW said:


> I couldn't really get too upset with him olwen. I have a LOT of hair. Even I don't like digging around in it. No twists of braids for me, it would take me forever. God forbid I should ever get sick but if I ever do I could experience a major hairloss and no one would know. I will say though that the note told me to bring my mask and stuff. I brought the whole cpap and the tech never even looked at it. I feel like I carried that thing around everywhere for nothing. I was told the same when I had knee surgery back in March. The case was never even opened.



LOL I know what you mean. I have a lot of hair too and now that it's locked it seems even thicker than before, which I didn't think was possible. It's long enough to put into a pony tails and when I tried that I could only get the little scrunchy to wrap around once. I've had that same thought you have about loosing my hair. We may get old gray and wrinkly but we'll still have a head full of nappy hair. LOL


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## LillyBBBW

olwen said:


> LOL I know what you mean. I have a lot of hair too *and now that it's locked *it seems even thicker than before, which I didn't think was possible. It's long enough to put into a pony tails and when I tried that I could only get the little scrunchy to wrap around once. I've had that same thought you have about loosing my hair. We may get old gray and wrinkly but we'll still have a head full of nappy hair. LOL



 Pictures or it aint true!!! lol I've been thinking of locking mine but I'm not sure what it would look like, how long it would take or what the maintenance would be. Especially if I get epoxy all stuck up in it.


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## olwen

LillyBBBW said:


> Pictures or it aint true!!! lol I've been thinking of locking mine but I'm not sure what it would look like, how long it would take or what the maintenance would be. Especially if I get epoxy all stuck up in it.



so I tried to take them so you can see the locks, but since I just got it done it's all braided and neat, which helps it lock faster.


So at least if I have to have the electropad doohickeys on my head again tonight the goo will be easier to wash out than last time.


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## olwen

I can't seem to delete the second pic, so sorry about that. Here's the other one:

View attachment 72099


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## LillyBBBW

SUPER Rep for you! I know you're there now so I'm thinking of you and sending you good sleep vibes.


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## LillyBBBW

By the way, the tech said that the goo dissolves better with conditioner. I massaged some Alberto V05 in to the goo spots on my dry hair and the goo loosened and broke apart in my hands just like that. A single shampoo and it was all gone.


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## olwen

Thanks for the sleep vibes Lilly. I think it helpedsince I was actually able to sleep this time. But I wish I had known about the conditioner trick before I showered this morning. :doh: I'm going to try it anyway tho since there is a small amount of dried up paste stuck in my braids still.


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## ohiofa

I have a question to everyone else in this "club".... 

I have severe sleep apnea and was just prescribed Provigil last week to help pick me up in the morning. I was hopeful after the first couple of days, but it doesn't seem to be helping anymore. I know they can up the dosage, but I'm concerned about the "whats next" or what if that doesn't work. Has anyone else ever experienced this? If so, what could they do to help you? Or is there some other medicine they can prescribe? 

Thanks, in advance, for your help.


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## BigBeautifulMe

There are other meds similar to Provigil (nuvigil is one, I believe). But Provigil, as expensive as it is, never did a damned thing for me. The only thing that helped was just hanging in there with my CPAP therapy. How long have you been on CPAP? If you've been on it a while and aren't feeling better, my suggestion would be to make sure you're not breathing through your mouth at night (assuming you have a nasal mask). If you're leaking air from your mouth, your airway is not being stented open and you're not being treated.


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## ohiofa

Hi BBM,
I've been using it religously since February of this year. I do use a mask that goes over my mouth and has two prongs that go up to my nostrils. I had the mask that went over both your nose and mouth and couldn't handle it. I think though that I breathe at night through both my nose and mouth...if that makes sence.


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## BigBeautifulMe

You sound a lot like me. Doing everything to make your therapy work.. no results. I kept telling my sleep doc I thought I hadn't been titrated properly - he refused to listen. Finally I went around him and went to my GP and asked for an Auto CPAP that would automatically adjust my pressure and tell me how many apneas I was having. They titrated me at 6... I needed 11-12. HUGE difference when the range is only 4-20. If you're still not feeling well... and you're not having a lot of mask leaks.... don't just accept "there's nothing we can do for you," do what you can to get a machine that will give you useful data and find out exactly what is going wrong. Just my two cents.


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## LillyBBBW

BigBeautifulMe said:


> You sound a lot like me. Doing everything to make your therapy work.. no results. I kept telling my sleep doc I thought I hadn't been titrated properly - he refused to listen. Finally I went around him and went to my GP and asked for an Auto CPAP that would automatically adjust my pressure and tell me how many apneas I was having. They titrated me at 6... I needed 11-12. HUGE difference when the range is only 4-20. If you're still not feeling well... and you're not having a lot of mask leaks.... don't just accept "there's nothing we can do for you," do what you can to get a machine that will give you useful data and find out exactly what is going wrong. Just my two cents.



A GP can do that?


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## BigBeautifulMe

Yep. As long as you've had a sleep study and titration, any doc can Rx a machine for you. Though I don't know that I'd try, say, a gynecologist.  LOL. Whether or not they WILL is another matter - but after I explained to my GP I'd been 100% compliant for months and still felt terrible and my sleep doc refused to help me, and showed up with research on the machine I wanted, she was happy to help me.


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## LillyBBBW

BigBeautifulMe said:


> Yep. As long as you've had a sleep study and titration, any doc can Rx a machine for you. Though I don't know that I'd try, say, a gynecologist.  LOL. Whether or not they WILL is another matter - but after I explained to my GP I'd been 100% compliant for months and still felt terrible and my sleep doc refused to help me, and showed up with research on the machine I wanted, she was happy to help me.



LOL! I'm curious what your sleep docs reaction was to this? Any commentary on the apparent improvements you made by moving past him/her?


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## BigBeautifulMe

I never went back to him after he refused to admit there was a possibility the sleep lab he worked with had messed up my titration. Any doctor who refuses to believe mistakes are possible is a dangerous doctor to have.


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## LillyBBBW

i*BUMP*!

AYE CARUMBA!! I have been feeling SO FANTASTIC lately!! I just assumed it was because of this new way of eating I've been following and didn't think any more of it. But over time I have been feeling better and BETTER! Man I can't even describe. My groove/swagger is BACK in a HUGE way. Over the last week or so I fell off the wagon with my eating habits and still... I feel like a million bucks. I jumped on the scale and weight 4 pounds more than I did last time. :-/ I'm starting to think that way of eating may have nothing to do with my improved state. Ever since I went back and had that sleep study I've been taping my mouth closed at night with the cpap. I was allergic to the tape so I went out and bought some for sensitive skin and have been using it religiously. OMG, I think it's the bullet! I feel like the sexay beeotch I was 10 years ago!

omg. Go get a cpap. I swear. Even if you don't NEED one.... *GET A CPAP*! _RUN_!!! Every American should have one. I'm writing a letter to congress.


----------



## BigBeautifulMe

LOL! Yay, Lilly!  Not mouth-leaking is sooo important to treatment. 'swhy I won't shut up about it.  If the air leaks out of your mouth, it's not keeping your airway open and you're not getting treatment. As you can now testify to. I'm sooooooooooo glad it's working for you!  Here's hoping you and your new best friend have many long, happy years together. lol.


----------



## Risible

That's great, Lilly! I'm glad you found the magic bullet to your CPAP experience - with me it was the face mask, as opposed to the nasal mask I was started with. Have you tried a full-face mask? It's no picnic, but the tape doesn't sound fun, either.

I have to say, I've been using the CPAP since April and I feel a very noticeable improvement in my energy level (still low, but at least I have some!). I'm also working on getting my diabetes under control, so between the good sleep and the lower blood sugars I'm feeling so much better. Just got back from a camping trip, during which I had a great time; in the past the trips have wiped me out, was barely able to function.


----------



## LillyBBBW

Risible said:


> That's great, Lilly! I'm glad you found the magic bullet to your CPAP experience - with me it was the face mask, as opposed to the nasal mask I was started with. Have you tried a full-face mask? It's no picnic, but the tape doesn't sound fun, either.
> 
> I have to say, I've been using the CPAP since April and I feel a very noticeable improvement in my energy level (still low, but at least I have some!). I'm also working on getting my diabetes under control, so between the good sleep and the lower blood sugars I'm feeling so much better. Just got back from a camping trip, during which I had a great time; in the past the trips have wiped me out, was barely able to function.



Yes, the preliminary conclusion is that I need a full face mask. I had the sleep study but I have to wait a few weeks before all the results are compiled so that I can see my doctor and obtain the final analysis. I expect then he is going to prescribe a full mask but till then I have been working with the tape to see what it does. Stupid me I didnt put two and two together till today. I couldn't figure out why I was feeling so damned good all of a sudden. I truly believe it's the tape. My appointment with the sleep doc is December 11 which I felt was too long to wait so I started with the tape over my mouth the moment my sleep study was over. Guess I'll be 'sticking' with it!


----------



## olwen

Count me in as someone who's feeling better because of the CPAP. We should have have a party.  I actually wake up in the morning and I'm not stiff or in total pain and I have energy to get thru the day, my brain isn't foggy. I'm honestly shocked at the improvement. It's crazy.


----------



## Risible

olwen said:


> Count me in as someone who's feeling better because of the CPAP. We should have have a party.  I actually wake up in the morning and I'm not stiff or in total pain and I have energy to get thru the day, my brain isn't foggy. I'm honestly shocked at the improvement. It's crazy.



I feel the same way, Olwen. When I started using it regularly with the full face mask, I thought I'd never get used to it - the mask felt claustrophobic, the straps are uncomfortable, having to be mindful of the tubing, the fear of the machine losing power while in a deep sleep and suffocating (I don't have that fear anymore; turns out, I can still breathe with the mask on and tubing connected and the machine off). Now I can't sleep _without_ my CPAP for fear of the OSA! Now my fear is - what if my machine breaks and I have to do without it?

It _is _crazy!


----------



## BigBeautifulMe

That's why I have a backup machine, Ris.  I have the same fear. When I switched insurance companies I learned my new company would cover a new cpap right away. So even though my old one was only 3 years old (usually ins. companies will only pay for a new one every FIVE years) I got a new one, and now I have a working spare should anything ever happen to this one. I realize I'm very fortunate that I have insurance and not everyone does. I'm grateful.


----------



## Risible

I believe my insurance covers a new one every five years; new mask twice a year.

Now I know what I want for Xmas.


----------



## BigBeautifulMe

What I love is when people say "I think CPAP is addictive. It's like a drug. Isn't it dangerous, that you get so dependent on it?" My answer is "Are you addicted to breathing during the day? Why would you be any less addicted to breathing at night?" lol.


----------



## Risible

CPAP - the new addiction.  Guess I'd rather give up chocolate, myself ...


----------



## JerseyGirl07093

What type of tape do you use Lilly? My mouth is always opening at night. I know I probably need to get a new sleep test too. I have a mask that goes over my nose only and I love it, if only I could get my mouth to stay shut! I have a chin strap that is supposed to keep my mouth closed but it doesn't really do much.


----------



## BigBeautifulMe

Yeah, chin straps are useless for MOST people unfortunately (not all, of course - but most). 

Johnson & Johnson 1" medical tape worked for me back when I taped. Not sure what Lilly uses. 

Make sure you don't use duct tape, though. It SHOULD go without saying, but...sometiems it doesn't. LOL


----------



## olwen

Risible said:


> I feel the same way, Olwen. When I started using it regularly with the full face mask, I thought I'd never get used to it - the mask felt claustrophobic, the straps are uncomfortable, having to be mindful of the tubing, the fear of the machine losing power while in a deep sleep and suffocating (I don't have that fear anymore; turns out, I can still breathe with the mask on and tubing connected and the machine off). Now I can't sleep _without_ my CPAP for fear of the OSA! Now my fear is - what if my machine breaks and I have to do without it?
> 
> It _is _crazy!



I've only had mine for a little over a week and I've already had that what if it breaks fear, especially since i was travelling with it. I almost left it behind twice and panicked a little each time. 

I'm also finding the nasal mask rather comforting, and I am starting to have an established sleep ritual, which I never ever had before. It's forcing me to try to plan out my day better and I look forward to sleeping in a different way than I did before, tho I can't quite explain the difference...


----------



## Risible

I think I mentioned this before ... but speaking of CPAP Love, one of the things I love most about my CPAP experience? My dreams - they're ever so much more warm and friendly. Sometimes when I wake up, I want to withdraw back into them.

By the time I finally started using my CPAP, after getting the full face mask, my dreams were frequently nightmares, with suffocation and drowning type dreams occurring several times a week. They were scawy.  Fortunately, they're a thing of the past.


----------



## LillyBBBW

JerseyGirl07093 said:


> What type of tape do you use Lilly? My mouth is always opening at night. I know I probably need to get a new sleep test too. I have a mask that goes over my nose only and I love it, if only I could get my mouth to stay shut! I have a chin strap that is supposed to keep my mouth closed but it doesn't really do much.



I bought some bandage/gauze tape from CVS for sensitive skin. At first I was using bandaids but my skin was reacting badly to those. This paperesque tape for sensitive skin seems to do the trick though. I purse my lips together, apply the tape and then relax and this seems to hold.

Although I must say of late I've been feeling like crap again. *sigh*  I don't know what it is. My allergies are terrible and for a week or so I haven't been taking my medication for it because I ran out. I'm wondering if maybe my sinues have something to do with the lapse in feeling better? But yeah, for a while there I was springing out of bed with a whole lot less aches and pains. Now I'm falling asleep on the subway agian.


----------



## olwen

Lilly you bring up something I've been meaning to ask about. What does everybody who uses the nasal mask/pillows do to open their sinuses? I've been taking cough medicine at night before bed, and that actually works, but I don't think I can keep that up for long. I'm not at all familiar with nasal spray and I've heard some things about some nasal sprays ruining your nasal passages, tho I can't remember which ones at the moment...


----------



## LillyBBBW

olwen said:


> Lilly you bring up something I've been meaning to ask about. What does everybody who uses the nasal mask/pillows do to open their sinuses? I've been taking cough medicine at night before bed, and that actually works, but I don't think I can keep that up for long. I'm not at all familiar with nasal spray and I've heard some things about some nasal sprays ruining your nasal passages, tho I can't remember which ones at the moment...



My doctor prescribed for me some kind of steroid nasal spray, I can't remember what it was. I never filled the prescription because I feared the same thing about becoming dependent or the stuff might simply stop working after a while. What helps me is nasal saline, like Ocean Nose. That stuff is gawd awful but it does open my nasal passages in about an hour or so. I've also used it to stave off a cold or limit it's scope of carnage at the first sign. Good stuff. That and Sudafed, the hard stuff.


----------



## olwen

LillyBBBW said:


> My doctor prescribed for me some kind of steroid nasal spray, I can't remember what it was. I never filled the prescription because I feared the same thing about becoming dependent or the stuff might simply stop working after a while. What helps me is nasal saline, like Ocean Nose. That stuff is gawd awful but it does open my nasal passages in about an hour or so. I've also used it to stave off a cold or limit it's scope of carnage at the first sign. Good stuff. That and Sudafed, the hard stuff.



thanks. I'm gonna look for that nasal saline stuff.


----------



## Risible

olwen said:


> Lilly you bring up something I've been meaning to ask about. What does everybody who uses the nasal mask/pillows do to open their sinuses? I've been taking cough medicine at night before bed, and that actually works, but I don't think I can keep that up for long. I'm not at all familiar with nasal spray and I've heard some things about some nasal sprays ruining your nasal passages, tho I can't remember which ones at the moment...



While my CPAP has a humidifier, I don't use it; I did to begin with but quickly found the "rainout" (I think that's what it's called?) was a bigger problem for me then dry mouth, so I stopped using it.

I can go to bed with a stuffy nose, but at some point the stuffiness clears up (I guess my nasal passages dry out without the humidifier going) and I'm able to breathe through my nose. However, I haven't been sick with a cold or congestion-type problem since I've been on the CPAP, so I don't know how my sinuses will react under sick conditions.


----------



## olwen

Risible said:


> While my CPAP has a humidifier, I don't use it; I did to begin with but quickly found the "rainout" (I think that's what it's called?) was a bigger problem for me then dry mouth, so I stopped using it.
> 
> I can go to bed with a stuffy nose, but at some point the stuffiness clears up (I guess my nasal passages dry out without the humidifier going) and I'm able to breathe through my nose. However, I haven't been sick with a cold or congestion-type problem since I've been on the CPAP, so I don't know how my sinuses will react under sick conditions.



The thing with me is that I am a smoker and have been for years so that on top of allergies and just a sensitive nose in general means I'm always blowing my nose even when I'm not sick. I use the humidifier because my nose will dry out without it and that isn't comfortable for me for the rest of the day. One thing about having to use the CPAP is that it is really making me smoke less especially right before bed. If I do it means my nose will be a little clogged and I won't be able to breathe well while wearing the mask. So I'm finding that if I have to blow my nose right before bed and I wear the mask it's just tough to breathe. 

I've tried to quit smoking sooooooooooo many times over the years and it never took for long, but now it will probably work. Being able to breathe is kinda nice. LOL


----------



## JerseyGirl07093

Thanks for the tape suggestions BBMe and Lilly. :bow:
I have the problem of having a stuffy nose as well as a dry nose (especially in winter) while using the CPAP. Mine doesn't have a humidifier. Not a heated one at least. I have what is basically a bowl of room temp. water that the air passes over before it gets to me. Don't even think it does any good. I use nose drops way too much but I can't help it. I think if I had a heated humidifier and got a new sleep study (I think I need the CPAP set at a higher number) I would be a lot better. Have to start working on that.


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## BigBeautifulMe

I agree. A heated humidifier might make a huge difference for you. Good for you for knowing what you need and planning to work on getting it!


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## liz (di-va)

olwen said:


> Lilly you bring up something I've been meaning to ask about. What does everybody who uses the nasal mask/pillows do to open their sinuses? I've been taking cough medicine at night before bed, and that actually works, but I don't think I can keep that up for long. I'm not at all familiar with nasal spray and I've heard some things about some nasal sprays ruining your nasal passages, tho I can't remember which ones at the moment...



This problem was the main reason I had a CPAP machine for FOUR YEARS and didn't use it, despite terrible apnea (gah...four years! just...not good). I have allergies and my sinuses would suddenly get congested and I'd wake up with the mask flung off on the floor... This was hands down the biggest obstacle for me using my machine. When I talked to my doctor about this problem at the time, she prescribed a Flonase or something, but I didn't find that a great fix in my case--I didn't want to have to take medicine regularly to sleep.

Several things allowed me to use a CPAP with nasal pillows (my body prefers to sleep/breathe with mouth closed):

- regular sinus irrigation (I'm not a big neti pot person; I use Simply Saline or NeilMed )
- semi-regular breathing exercises
- a better CPAP heated humidifier, and increasing the temp as necc
- better attention to my allergies
- propping myself up as necessary. I try to avoid it, but if I have to I will start out that way.
- when my congestion gets really bad, I will take a Sudafed, and that will help

Also: using the machine regularly, once you can start, helps. Both for getting your body used to breathing through temporary periods of congestion, and for improving your immune system so that you don't get as congested. Kind of a more/more-better situation.

Sometimes I will have to sort of "breathe down" at the beginning of a period of sleep...consciously work on diaphragmatic breathing and clearing congestion, regulating my breathing with the machine.


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## LillyBBBW

*CPAPPETITE (n):* a change in the desire to eat induced by therapeutic use of a cpap.​
I'm so hungry.  Anybody else notice a change in their appetite after using the cpap? Less? More?


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## Risible

No change here, Lilly. I thought I heard weight loss might be a consequence, as increased energy might lead to more exercise? Maybe the increase of energy requires more fuel, thus stimulating the appetite?


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## BeautifulPoeticDisaster

LillyBBBW said:


> *CPAPPETITE (n):* a change in the desire to eat induced by therapeutic use of a cpap.​
> I'm so hungry.  Anybody else notice a change in their appetite after using the cpap? Less? More?




YES!!!!!!!!!!!!!!!!!!!!!!!! I thought I was the only one cos everyone talks about losing weight when they get put on CPAP. I gained 30lbs!!!!!


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## LillyBBBW

Risible said:


> No change here, Lilly. I thought I heard weight loss might be a consequence, as increased energy might lead to more exercise? Maybe the increase of energy requires more fuel, thus stimulating the appetite?





BeautifulPoeticDisaster said:


> YES!!!!!!!!!!!!!!!!!!!!!!!! I thought I was the only one cos everyone talks about losing weight when they get put on CPAP. I gained 30lbs!!!!!



I don't know. It just feels like since getting more therapeutic results from the cpap everything has come alive. My energy, my interests, my awareness and my appetites -- ALL of them.  I won't be stopping the treatment but I just wondered if I was the only one or if anyone had ever heard of this before. 

ETA: And I've been going to the bathroom a lot, excess fluid. That has been going on for only a short while so it may be something else. I went to the doctor about it though and he says everything about me checks out normal.


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## BeautifulPoeticDisaster

LillyBBBW said:


> ETA: And I've been going to the bathroom a lot, excess fluid. That has been going on for only a short while so it may be something else. I went to the doctor about it though and he says everything about me checks out normal.



I find that when I wake up I HAVE TO GO NOW! It's because I'm not getting up 1 or 2 times in the night. As for day time, I haven't noticed cos I always pee alot since I drink loads.


----------



## olwen

LillyBBBW said:


> *CPAPPETITE (n):* a change in the desire to eat induced by therapeutic use of a cpap.​
> I'm so hungry.  Anybody else notice a change in their appetite after using the cpap? Less? More?





LillyBBBW said:


> I don't know. It just feels like since getting more therapeutic results from the cpap everything has come alive. My energy, my interests, my awareness and my appetites -- ALL of them.  I won't be stopping the treatment but I just wondered if I was the only one or if anyone had ever heard of this before.
> 
> ETA: And I've been going to the bathroom a lot, excess fluid. That has been going on for only a short while so it may be something else. I went to the doctor about it though and he says everything about me checks out normal.



My appetite has gone down a bit since I started using it and I have been going to the bathroom less often. I actually started having trouble figuring out my hunger cues a few weeks before I started using the CPAP and now it's all normal again. I can tell when I'm hungry and when I'm full. I'm also a little less stressed out now too, tho I don't know if it's because I'm getting better sleep or if it's because I got rid of some of the things that were stressing me out (tho not all  ). So I'm not sure if the hunger changes were due to stress levels and the CPAP or just one of those things or both.


----------



## MissToodles

Has anyone here used this type of pillow with any success? I'm a side sleeper and hate how my regular pillow sort of jabs into my face and mask. $70 does seem awfully pricey to pay for a pillow though. Rip off?


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## Risible

MissToodles said:


> Has anyone here used this type of pillow with any success? I'm a side sleeper and hate how my regular pillow sort of jabs into my face and mask. $70 does seem awfully pricey to pay for a pillow though. Rip off?



I bought that pillow after starting on CPAP, as I'm also a side sleeper. It's much too firm for me, though, and I gave up on it after a night or two. Now I use a soft down pillow on top of a medium firm pillow and that combo works well; I have no problem sleeping on my side with it. I swivel the tubing over the top of my head and out of the way. During deep sleep, the mask does sometimes get knocked a little out of place, but I think it would with the side-sleeping pillow as well.


----------



## Linda

MissToodles said:


> Has anyone here used this type of pillow with any success? I'm a side sleeper and hate how my regular pillow sort of jabs into my face and mask. $70 does seem awfully pricey to pay for a pillow though. Rip off?



Oh please if you want to try and use a pillow like that do not pay that price. Have someone sew you one.


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## liz (di-va)

When I sleep in my side I just use a neck pillow/bolster.


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## olwen

I also sleep on my side, but I just use a standard down pillow and mash the side out of the way of the mask and it works out fine.


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## LillyBBBW

Linda said:


> Oh please if you want to try and use a pillow like that do not pay that price. Have someone sew you one.



Yeah, I'm loath to pay that price for that pillow. I'd rather spend 10 minutes punching the hell out of the one I have and making do. At least for now.


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## Never2fat4me

MissToodles said:


> Has anyone here used this type of pillow with any success? I'm a side sleeper and hate how my regular pillow sort of jabs into my face and mask. $70 does seem awfully pricey to pay for a pillow though. Rip off?



I am a side-sleeper too and I use this pillow, currently on sale for $22.49, and it works great for me.

Chris


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## Linda

Never2fat4me said:


> I am a side-sleeper too and I use this pillow, currently on sale for $22.49, and it works great for me.
> 
> Chris





God I love me a man who bargain shops. :wubu:


----------



## liz (di-va)

My least favorite thing about my CPAP machine, after almost a year of use? The way the mask mashes my nose out of shape. Must figure out a diff option.


----------



## JerseyGirl07093

liz (di-va) said:


> My least favorite thing about my CPAP machine, after almost a year of use? The way the mask mashes my nose out of shape. Must figure out a diff option.



I love all those lines that I have all over my face from the mask, the straps and the chin strap.  Sometimes it takes a while for those to go away and I just have to go out with marks on my face.


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## BigBeautifulMe

You can try a new mask (that worked for me) and/or try wearing something between your head and the mask. I do that to help prevent strap marks on my forehead, and it has the added benefit of keeping my hair from being damaged by the straps. You want a really thin kind of ski cap, OR you can do what I do (don't laugh... well, okay, you can laugh). I took a pair of tights and cut the legs off. I use one leg tied around my head to help stabilize the mask if I need it, and the "panty" part that's left I wear on my head.  Yep, I'm a fashion plate!


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## liz (di-va)

I use foam earplugs under the nasal pillow on either side of my nose to try to lift the nose-pushing pressure a bit. Maybe I can rig something bigger...

The strap-marks aren't too bad on my face, although I definitely notice them!


----------



## LillyBBBW

For goodness' sake, I thought I would NEVER get that mask! Holy Toledo, I can't even tell you what an ordeal it has been trying to get this stinkin' mask.  Not that it stinks, mind you. I finally got the clearance and everything and the mask arrived in the mail yesterday.




(click photo for link)​

I slept with it last night and it wasn't cumbersome at all. The doc said I needed a small sized one which I was skeptical about but it fit perfectly. No leaks from what I can tell and the mask did not mash up against my pillow as I had feared. At first I strapped it all too tight fearful of leaks but once my eye started pounding I knew that it was a bad idea to have it clamped on like that. Loosening the straps didn't seem to effect the seal though. I was impressed that the thing seemed to fit well with very little pressure. I turned the CPAP up to it's highest programmed setting and it was still squarely in place with no air leakage. I got the mask, headgear, new tubing and some new filters and so far everything has worked out. We'll see how we feel in a week or so. In the mean time I feel very relieved and excited just getting this thing finally. *phew* I didn't notice any strap marks this morning but suddenly I'm worried about deepening the lines in my face that run from my nose to the corners of my mouth with the full face mask.

And here's a side note. I take my CPAP with me whenever I travel and had it with me on one of my choral tours to the Berkshires. I shared a room with a woman who began to pepper me with questions about the CPAP. She's a snorer and her husband had been pushing her to get a sleep study. Well I inspired her and she finally got her CPAP two weeks ago. She said she and her husband are very pleased with the results. The CPAP world takeover is well underway folks.


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## BigBeautifulMe

LOL @ CPAP takeover. It's contagious, eh?  Glad that mask is working for you, Lills! I know with the ComfortGel nasal masks people have a lot of issues with it eating the bridge of their nose up, but I haven't heard whether the full face versions are the same. Hopefully not! Just wanted to let you know so you could keep an eye out for any irritation there. If some does happen, a little moleskin on the mask where it hits the bridge of your nose might help.


----------



## LillyBBBW

BigBeautifulMe said:


> LOL @ CPAP takeover. It's contagious, eh?  Glad that mask is working for you, Lills! I know with the ComfortGel nasal masks people have a lot of issues with it eating the bridge of their nose up, but I haven't heard whether the full face versions are the same. Hopefully not! Just wanted to let you know so you could keep an eye out for any irritation there. If some does happen, a little moleskin on the mask where it hits the bridge of your nose might help.



Thanks for the heads up BBM. I will keep an eye on it. I still have some of that paper tape for sensitive skin that I've been using to keep my mouth shut at night. If things get weird I may place a strip of it on the bridge first and see if that helps.


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## Risible

Glad to hear the FFM works out well for you, Lilly. I went from the nasal to the FFM as well, with outstanding results. I've got the Mirage Quattro, no bridge problems with that one; it's also a size small ... yeah, small. Who knew I'd take a size small in anything ...


----------



## Funnygirl

Hi Violet,

I am a 2 month user of a C-Pap and I was not happy with having to sleep with a mask but I must say that after a month or so my energy level has increased. One month ago I also started a 1600 calorie per day program and have lost only 7 lbs. It is possible that the weight loss is helping too. Wearing that mask is weird but remember the life you save may be your own.

If your partner doesn't like it, then he or she is not concerned with your health and should be.

I am still adjusting to it and yes it is awkward to share our disabilities but real relationships are about intimacy and believe me EVERYONE has a disability, some are obvious and some are not seen.

You will feel better soon, give it some time.

Funnygirl


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## AlethaBBW

Count me in as the newest member of the club. My sleep study showed 24 arousals per hour plus periodic limb movement, so I'm getting a cpap in 5-10 days. I'm actually looking forward to it. It's been so long since I felt anything other than exhausted.


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## LillyBBBW

AlethaBBW said:


> Count me in as the newest member of the club. My sleep study showed 24 arousals per hour plus periodic limb movement, so I'm getting a cpap in 5-10 days. I'm actually looking forward to it. It's been so long since I felt anything other than exhausted.



24 arousals! :smitten::wubu::blush: 

oh, and welcome Aletha.


----------



## Risible

AlethaBBW said:


> Count me in as the newest member of the club. My sleep study showed 24 arousals per hour plus periodic limb movement, so I'm getting a cpap in 5-10 days. I'm actually looking forward to it. It's been so long since I felt anything other than exhausted.



Welcome to our club!  One of the worst parts is behind you ... the sleep study. Jeepers, but I hated that.  It was tough getting used to the mask, but after a couple of weeks it was love-city for my CPAP; let's see, if I had to choose between sleeping with my husband (don't laugh. I've been married almost ten years, and he ... gropes), my warm, soft-as-a-chamois little dog, and my CPAP ...


----------



## Linda

AlethaBBW said:


> <snip> My sleep study showed 24 arousals per hour plus periodic limb movement <snip>QUOTE]
> 
> 
> 
> Can I volunteer somewhere for 24 arousals with periodic limb movement?
> hehe
> 
> Welcome to the club.


----------



## Steve O

Just got my CPAP yesterday. I guess I finally needed one, with an 18inch neck, and carrying 280lbs. ( plus more than a few bruised ribs..)I had to have 2 sleep studies, not enough to put the mask on, but 16 arousals an hour, I needed to have one. It's a ResMed, top-of the line, $1100 for the machine, humidifier, and mask and tube. I am fortunate that the insurance company purchased it, didn't cost me a penny, one of the benefits to working in the public sector. I woke up with a bump across my forehead, and I guess I'll have to get used to sleeping on my back, after being a stomach sleeper for years.


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## Linda

Steve O said:


> Just got my CPAP yesterday. I guess I finally needed one, with an 18inch neck, and carrying 280lbs. ( plus more than a few bruised ribs..)I had to have 2 sleep studies, not enough to put the mask on, but 16 arousals an hour, I needed to have one. It's a ResMed, top-of the line, $1100 for the machine, humidifier, and mask and tube. I am fortunate that the insurance company purchased it, didn't cost me a penny, one of the benefits to working in the public sector. I woke up with a bump across my forehead, and I guess I'll have to get used to sleeping on my back, after being a stomach sleeper for years.



Get easier over time Steve. Hang in there.


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## Risible

Steve O said:


> Just got my CPAP yesterday. I guess I finally needed one, with an 18inch neck, and carrying 280lbs. ( plus more than a few bruised ribs..)I had to have 2 sleep studies, not enough to put the mask on, but 16 arousals an hour, I needed to have one. It's a ResMed, top-of the line, $1100 for the machine, humidifier, and mask and tube. I am fortunate that the insurance company purchased it, didn't cost me a penny, one of the benefits to working in the public sector. I woke up with a bump across my forehead, and I guess I'll have to get used to sleeping on my back, after being a stomach sleeper for years.



It will get easier, Steve, like Linda says above.

BTW, I'm a side sleeper myself, and I worried that I'd have to give that up. Turns out, I can sleep on my side just like I did before mask. I think Big Beautiful Me, who posts in this thread, mentioned that she's a stomach sleeper? Someone did anyway, upthread, if I'm not mistaken.


----------



## BigBeautifulMe

Yep, I'm a stomach sleeper. Steve, there are soooo many kinds of masks out there - if the one you're using now doesn't work for you, the only thing to do is try others. I use the AEOIMed Headrest. Many stomach sleepers love it, including me. It's this one: http://www.cpap.com/productpage/aeiomed-aura-nasal-cpap-interface.html

As with all CPAP masks, everyone's mileage varies, so what works for one person might not work for another, unfortunately. There's no "guaranteed" answer of which mask will work for everyone. But at least that's a place to start if you're like me and absolutely can NOT sleep on your back.


----------



## olwen

I haven't been sleeping with my cpap machine since I caught a cold a few days ago. I have started having really vivid dreams and I think it's cause I'm sleeping without the machine. Does anyone else have vivid dreams if they don't sleep with their machine or is it just me?


----------



## LillyBBBW

olwen said:


> I haven't been sleeping with my cpap machine since I caught a cold a few days ago. I have started having really vivid dreams and I think it's cause I'm sleeping without the machine. Does anyone else have vivid dreams if they don't sleep with their machine or is it just me?



Might just be the change in sleep pattern. I got a new mask over a month ago. The results of using it have not been good. I was more tired than ever and thought I might have to go back to the doc again. I decided to tighten the mask a little and see if that helped. Since tightening, it seems things are starting to turn around. In addition to that I'm having vivid dreams where before I never remembered my dreams.


----------



## BeautifulPoeticDisaster

Steve O said:


> Just got my CPAP yesterday. I guess I finally needed one, with an 18inch neck, and carrying 280lbs. ( plus more than a few bruised ribs..)I had to have 2 sleep studies, not enough to put the mask on, but 16 arousals an hour, I needed to have one. It's a ResMed, top-of the line, $1100 for the machine, humidifier, and mask and tube. I am fortunate that the insurance company purchased it, didn't cost me a penny, one of the benefits to working in the public sector. I woke up with a bump across my forehead, and I guess I'll have to get used to sleeping on my back, after being a stomach sleeper for years.




I have a permanent dip in my forehead on the lefthand side from my mask....but it is worth it for the awesome sleep I get! I was 17 times an hour so not to far and I have the same machine.

I cannot sleep on my back...it is downright painful. I still sleep on my stomach....what you do is...learn to sleep with your face in a hole. I sleep with two pillows under the left side of my head/face and two under my right arm....in between those sets of pillows is a valley for my mask.  It is wonderful.


----------



## BeautifulPoeticDisaster

olwen said:


> I haven't been sleeping with my cpap machine since I caught a cold a few days ago. I have started having really vivid dreams and I think it's cause I'm sleeping without the machine. Does anyone else have vivid dreams if they don't sleep with their machine or is it just me?



I can't sleep without my machine now, I'm an addict.

However, I have crazy vivid dreams because of my anti depressant. Zoloft. Holy cow are they WEIRD dreams...always involving people I know. And I recall parts of past dreams in my current dreams. I dream so vividly that I enjoy it because it is like every night I take a vacation from life as I know it.


----------



## olwen

BeautifulPoeticDisaster said:


> I can't sleep without my machine now, I'm an addict.
> 
> However, I have crazy vivid dreams because of my anti depressant. Zoloft. Holy cow are they WEIRD dreams...always involving people I know. And I recall parts of past dreams in my current dreams. I dream so vividly that I enjoy it because it is like every night I take a vacation from life as I know it.


Believe me I would prefer to use the machine since I'm tired, but I just can't breathe right and I'm coughing still. Plus I'm afraid of getting my cold germs in the tube and whatnot. I know you can clean it, but then I'd still be grossed out about sleeping with parts I was sick in.

My vivid dreams are freaking me out tho cause I keep dreaming that I'm waking up and small details about my life are different and I think it's for real, then I wake up for real and everything is normal. It's freaky.


----------



## LillyBBBW

olwen said:


> Believe me I would prefer to use the machine since I'm tired, but I just can't breathe right and I'm coughing still. Plus I'm afraid of getting my cold germs in the tube and whatnot. I know you can clean it, but then I'd still be grossed out about sleeping with parts I was sick in.
> 
> My vivid dreams are freaking me out tho cause I keep dreaming that I'm waking up and small details about my life are different and I think it's for real, then I wake up for real and everything is normal. It's freaky.



Girl your brain is getting messed up due to lack of oxygen. Between the stuffed upedness and the apneas, your mind is mash when you wake up. I bet you woke up thinking you won a swimsuit competition on Mars while trying to fix mini tricycles with black and orange gymp.


----------



## olwen

LillyBBBW said:


> Girl your brain is getting messed up due to lack of oxygen. Between the stuffed upedness and the apneas, your mind is mash when you wake up. I bet you woke up thinking you won a swimsuit competition on Mars while trying to fix mini tricycles with black and orange gymp.



LMAO. 

This time I dreampt that I woke up and my hair was straight and shiny and I wondered what happened to my locks, like did I dream I had locks for a year and everyone let me think I had locks cause they didn't want to hurt my feelings? Then I dreampt my bookcase which is all messe up just fell apart and everything on it, books and random stuff fell all over the floor and instead of cleaning it up I just decided to move...I woke up for real and the first thing I did was touch my hair and I was relieved to find I still had locks and that my bookcase was still intact. It just felt soooo real. 

I've also dreampt (maybe a month ago) that I have taken off my mask cause it was time to get up, but then when I get up for real the mask is off...I gotta wonder why I didn't get up for real when I thought it was time to get up....I just have days where I wake up and the mask is on the side of the bed and I don't remember taking it off. It's screwing with my head a little bit.


----------



## LillyBBBW

olwen said:


> LMAO.
> 
> This time I dreampt that I woke up and my hair was straight and shiny and I wondered what happened to my locks, like did I dream I had locks for a year and everyone let me think I had locks cause they didn't want to hurt my feelings? Then I dreampt my bookcase which is all messe up just fell apart and everything on it, books and random stuff fell all over the floor and instead of cleaning it up I just decided to move...I woke up for real and the first thing I did was touch my hair and I was relieved to find I still had locks and that my bookcase was still intact. It just felt soooo real.
> 
> I've also dreampt (maybe a month ago) that I have taken off my mask cause it was time to get up, but then when I get up for real the mask is off...I gotta wonder why I didn't get up for real when I thought it was time to get up....I just have days where I wake up and the mask is on the side of the bed and I don't remember taking it off. It's screwing with my head a little bit.



ROFLMAO! That really did make me laugh!  The other night I dreamt that my nose was stuffed and I could not breath through it. I was in a theater, started to panic and opened my mouth to get some air because I was suffocationg and woke myself up. Turns out my nose blocked in my sleep and trying to get air startled me awake. Looks like saline nasal spray isn't cutting it anymore.


----------



## olwen

LillyBBBW said:


> ROFLMAO! That really did make me laugh!  The other night I dreamt that my nose was stuffed and I could not breath through it. I was in a theater, started to panic and opened my mouth to get some air because I was suffocationg and woke myself up. Turns out my nose blocked in my sleep and trying to get air startled me awake. Looks like saline nasal spray isn't cutting it anymore.



I've been using the saline spray and it's been working for me. What else could you use besides that nasal spray that makes you loose your sense of smell?

I think we're well overdue for nanobot technology. Shoot some up your nose and it cleans all the mucus and junk. That and hover cars. We were promised hover cars by 2000. Well it's 2010 and we're still waiting.


----------



## BeautifulPoeticDisaster

olwen said:


> I've also dreampt (maybe a month ago) that I have taken off my mask cause it was time to get up, but then when I get up for real the mask is off...I gotta wonder why I didn't get up for real when I thought it was time to get up....I just have days where I wake up and the mask is on the side of the bed and I don't remember taking it off. It's screwing with my head a little bit.



I did that for the first 2 weeks. It was really starting to make me wonder if I could be compliant. I didn't dream about it or anything, but I would wake up and the mask was put back nicely on my bed side table and turned off. I had no memory of it what so ever. If finally subsided in week 3 for me, thank goodness.

When I'm sick with a stuffy nose, I put some vicks rub on my chest and a little bit under my nose and then I put the mask on. Even when I am full of cold, I use the mask. Better to feel awkward breathing awake than asleep and not breathing at all.


----------



## BigBeautifulMe

Yeah, I use mine when I'm sick, too. I have a full face mask I use specifically for when I'm sick. I get MUCH more oxygen that way than if I try to sleep without it, and I get rid of the cold or whatever I have more quickly because my immune system isn't being comprimised all night by apneas.

Olwen, I used to have a shit ton of crazy dreams pre-cpap. I finally found out that we ALWAYS have bizarre dreams - it's just that when we're waking up a gazillion times with apneas we remember more of them, because we're waking up long enough to process what we were dreaming about. 

Get well soon!


----------



## olwen

I've been using my machine for about two or three months now. I guess I'm still getting used to it.

I don't have a full face mask. When I tried to use it during the titration I started hyperventillating. I'm kinda scared of that mask. I did try to sleep with my nasal mask the first night I caught a cold, but my nose was all drippy and I kept taking it off to blow my nose so I just kept it off. Then the thought of little droplets of runny snot all over the tube and mask just grossed me out. 

I have always been able to remember my dreams. For years I would write them down in the mornings and I got to a point where I could briefly control my dreams. My dreams however were never this vivid to where I'm not sure if the dreams are real or not until I'm fully woken up. I'm hoping I'll be able to get a full night with the machine in a day or two. Maybe by then I'll have stopped coughing.


----------



## BeautifulPoeticDisaster

olwen said:


> I've been using my machine for about two or three months now. I guess I'm still getting used to it.
> 
> I don't have a full face mask. When I tried to use it during the titration I started hyperventillating. I'm kinda scared of that mask. I did try to sleep with my nasal mask the first night I caught a cold, but my nose was all drippy and I kept taking it off to blow my nose so I just kept it off. Then the thought of little droplets of runny snot all over the tube and mask just grossed me out.
> 
> I have always been able to remember my dreams. For years I would write them down in the mornings and I got to a point where I could briefly control my dreams. My dreams however were never this vivid to where I'm not sure if the dreams are real or not until I'm fully woken up. I'm hoping I'll be able to get a full night with the machine in a day or two. Maybe by then I'll have stopped coughing.



I can't recommend a full face mask enough.

It wasn't always easy though. When they tried it on me and turned on the air I panicked and almost started crying. It was so forceful and it felt like I couldn't breathe against the current of air. I also started gagging. It wasn't fun.

Now I can talk with it on and cough with it on.

And anti bacterial wipes are my best friend.


----------



## Risible

BeautifulPoeticDisaster said:


> I can't recommend a full face mask enough.
> 
> It wasn't always easy though. When they tried it on me and turned on the air I panicked and almost started crying. It was so forceful and it felt like I couldn't breathe against the current of air. I also started gagging. It wasn't fun.
> 
> Now I can talk with it on and cough with it on.
> 
> And anti bacterial wipes are my best friend.



That's my experience, too, BPD - I thought I was gonna suffocate the first time I tried a full face mask on, and I was mildly panicking at the thought of having to wear it while sleeping. I thought, what if the machine loses power or whatever, and the air flow is cut off - how can I breathe? Turns out, the mask has vents to allow expired air to escape, so I can breathe adequately with the machine off. That helped, knowing that.

It took a week or two to get used to the full face mask, but now I don't even feel the air being pumped in - my setting is 16, so pretty strong - and I'm also addicted to my CPAP and mask. I feel anxious at the thought of it breaking down and having to sleep without it, in fact.


----------



## BeautifulPoeticDisaster

Risible said:


> It took a week or two to get used to the full face mask, but now I don't even feel the air being pumped in - my setting is 16, so pretty strong - and I'm also addicted to my CPAP and mask. I feel anxious at the thought of it breaking down and having to sleep without it, in fact.




Me too!!! I can barely feel the air now and at my appointment in March I'm going to ask if they can up it a little...I miss the full on feeling, lol.


----------



## BigBeautifulMe

LOL. I doubt they'll up your pressure just because you've gotten used to it, silly girl.  You're supposed to eventually get to where it doesn't feel like a hurricane force gale... that's _good_. lolol.  If your pressure is substantially higher than you need, some people can start having a different kind of apnea (central apneas) as a result. So I think professionals are generally hesitant to up you if your treatment is otherwise working perfectly.


----------



## BeautifulPoeticDisaster

BigBeautifulMe said:


> LOL. I doubt they'll up your pressure just because you've gotten used to it, silly girl.  You're supposed to eventually get to where it doesn't feel like a hurricane force gale... that's _good_. lolol.  If your pressure is substantially higher than you need, some people can start having a different kind of apnea (central apneas) as a result. So I think professionals are generally hesitant to up you if your treatment is otherwise working perfectly.



Dang it, lol. I'm hooked!


----------



## BigBeautifulMe

By the way, Ris, full face masks not only have exhalation ports, they also have special emergency valves (there's a name for them... blanking on it) to allow you to breathe fully and exhale your CO2 in just such a case.


----------



## Risible

BigBeautifulMe said:


> By the way, Ris, full face masks not only have exhalation ports, they also have special emergency valves (there's a name for them... blanking on it) to allow you to breathe fully and exhale your CO2 in just such a case.



Thanks, Ginny, that's reassuring to know ... I think I mention upthread that I postponed getting fitted for a full face mask _for a year_ (had my CPAP sitting bedside, unused, the while) because I was so uneasy about that panicky, suffocating feeling from wearing the mask. And when I finally went in to the medical supply place to get fitted (postponed the appointment at least a couple times) I felt like I was between a rock and hard place - on the one hand, I was having nightmares about suffocating, drowning, not being able to inhale (commonplace dreams for the apneic, I understand), and, on the other hand, I thought wearing that mask was gonna be a death sentence in itself. The respiratory therapist finally explained about the vents, and I immediately felt better about wearing it. Nevertheless, thanks for letting me know about that escape valve thingy - the RT may have mentioned it, but it's good to know.


----------



## Never2fat4me

BigBeautifulMe said:


> By the way, Ris, full face masks not only have exhalation ports, they also have special emergency valves (there's a name for them... blanking on it) to allow you to breathe fully and exhale your CO2 in just such a case.



I think they call it an anti-asphyxia valve.

And while I prefer to use just the nasal pillow (seems to do me fine as a side-sleeper), I have a full face mask for when I have a cold and it works like a charm too (it actually is what I first used when I got my CPAP as I had a cold at the time - come to think of it, I haven't had a cold since - I wonder if there is a correlation here?).

Chris


----------



## SocialbFly

it is a pop off valve, to allow a place for exhalation so pressure doesnt build up too far, we have them on most breathing machines...


----------



## JerseyGirl07093

I have a rash on my face from the CPAP mask.  I just put hydrocortisone on it to try and heal it. Any other suggestions? It's not like I can stop wearing the mask at night so it just keeps getting irritated again and again.


----------



## BigBeautifulMe

Eek! Is it an actual rash, like you're allergic to it, or is it lines from where the mask is pressing against your skin? If it's an allergy, sounds like you need a new mask. If it's marks on your face from the mask pressing against your skin, there are a few possibilities: 1) You might be wearing your mask too tightly. Try loosening it. There's a "sweet spot" between killer tight and so loose you don't get a seal. If that doesn't work, you might need a new kind of mask because it could be yours doesn't fit. IF you think it fits well, it's just leaving marks, there are a couple of other options: 

1) Stick-on moleskin you can pick up at pharmacies. Put it on the mask where you're getting the lines. 

2) And these are my favorite option: Pad-a-Cheeks. These are made by a friend of mine, and they're absolutely excellent. If you don't see something there you think will help, you can e-mail her, and she'll try her best to come up with something that will work for you. She's very, very helpful, and the quality of her products is outstanding. 

Edited: By the way, if it's an actual allergy and you need a new mask, almost all the mask manufacturers have a 30-day return policy, so if you've had it for less than 30 days, make the DME take it back and give you a new one.


----------



## LillyBBBW

I'm having the same problem. My face is dry and scaly around my nose where the mask sits. I'm going to call my doc and see what he says.


----------



## JerseyGirl07093

BigBeautifulMe said:


> Eek! Is it an actual rash, like you're allergic to it, or is it lines from where the mask is pressing against your skin? If it's an allergy, sounds like you need a new mask. If it's marks on your face from the mask pressing against your skin, there are a few possibilities: 1) You might be wearing your mask too tightly. Try loosening it. There's a "sweet spot" between killer tight and so loose you don't get a seal. If that doesn't work, you might need a new kind of mask because it could be yours doesn't fit. IF you think it fits well, it's just leaving marks, there are a couple of other options:
> 
> 1) Stick-on moleskin you can pick up at pharmacies. Put it on the mask where you're getting the lines.
> 
> 2) And these are my favorite option: Pad-a-Cheeks. These are made by a friend of mine, and they're absolutely excellent. If you don't see something there you think will help, you can e-mail her, and she'll try her best to come up with something that will work for you. She's very, very helpful, and the quality of her products is outstanding.
> 
> Edited: By the way, if it's an actual allergy and you need a new mask, almost all the mask manufacturers have a 30-day return policy, so if you've had it for less than 30 days, make the DME take it back and give you a new one.



It's not an alllergy, I've had the same mask model for all the years I've had the CPAP. It's just all of a sudden where the mask presses on my face it has gotten red, then a little redder, then all of a sudden it was a full blown itchy, bumpy, red rash.  The hydrocortisone has seemed to help a little. I'm going to try the moleskin next. I tried to use tissues the other day and that didn't work out so well. Thanks for the tips! I'll let you know how it goes.


----------



## BigBeautifulMe

It is possible to develop an allergy to a material after a time, I think. I hope that's not what it is, though.


----------



## JerseyGirl07093

I just found these and ordered a sample. Looks like they might work pretty well. I'll report back once I try them. My little red cheeks and I can't wait! 

http://www.remzzzs.com/


----------



## LillyBBBW

JerseyGirl07093 said:


> I just found these and ordered a sample. Looks like they might work pretty well. I'll report back once I try them. My little red cheeks and I can't wait!
> 
> http://www.remzzzs.com/



Please do! Looks like something I might need.


----------



## BigBeautifulMe

I've heard some good things about those, Jersey.  I hope they work for you!


----------



## Risible

JerseyGirl07093 said:


> I just found these and ordered a sample. Looks like they might work pretty well. I'll report back once I try them. My little red cheeks and I can't wait!
> 
> http://www.remzzzs.com/



I use those, JerseyGirl. When I first started using the CPAP, I had a hard time adjusting the mask so the air wouldn't leak; I hate that whooshing sound, it was disrupting my sleep. So I ordered a sample pack of the Remzzzs to give them a try. They cut the air leakage quite a bit, so I started using them regularly. I also like that they keep my face dry; they soak up excess moisture created by the mask seal against my skin. They're expensive, though (I think $25 for 30 or something like that? Plus shipping), so I use one over two nights; past that and they get too stretched out.

The drawback is sometimes it moves around and I have to wake up and sit up to adjust it; also, I still wake up with red mask marks on my face - the Remzzzs don't significantly reduce that.


----------



## BeautifulPoeticDisaster

I got a bigger mask!!!! I was having issues with the other one cause gum/tooth pain on my lower teeth. My appointment yesterday I asked for the next size up and it is glorious.  I'm sleeping better than ever and I am able to sleep in my contacts again!!!! The smaller one musta been having leaks when I slept. I'm a happy girl.


----------



## LillyBBBW

BeautifulPoeticDisaster said:


> I got a bigger mask!!!! I was having issues with the other one cause gum/tooth pain on my lower teeth. My appointment yesterday I asked for the next size up and it is glorious.  I'm sleeping better than ever and I am able to sleep in my contacts again!!!! The smaller one musta been having leaks when I slept. I'm a happy girl.



OMG I'M HAVING THE _SAME_ PROBLEM!!!!! My lower front teeth have sore gums from this stupid mask, and the thing farts in the middle of the night waking me up. Gees! And sometimes one eye is totally swollen closed from air leakage. I want to hurl the thing straight at the wall. I don't know WHAT to do.


----------



## BigBeautifulMe

Yeah, getting the right size mask makes a HUGE difference, Donni.  Glad you found the right one!

Nothing's harder than finding the right mask in the right size. Once you find it, it's fabulous though. I use the same mask time after time, and only ever switch (to a full face mask) when I have a cold so bad I can't breathe through my nose at all. It's like finding the holy grail. I'm so sorry you're having such a hard time, Lills.  Have you had it longer than 30 days? If not you might want to take it back and try something else.  *supportive hugs!*


----------



## LillyBBBW

Hey I'm wondering about those Remzzz's. I don't know what the materal is made out of but couldn't someone feesably take a paper towel and cut it around to do the same thing? You got a whole roll to work with. Or even buy some fabric and make a bunch of those things with a cotton muslin material? They'd all be machine washable. Just wondering what makes these things in particular so special?


----------



## Risible

LillyBBBW said:


> Hey I'm wondering about those Remzzz's. I don't know what the materal is made out of but couldn't someone feesably take a paper towel and cut it around to do the same thing? You got a whole roll to work with. Or even buy some fabric and make a bunch of those things with a cotton muslin material? They'd all be machine washable. Just wondering what makes these things in particular so special?



It's a very thin, stretchy cotton material (I don't know if it's 100% cotton; feels like it to me). You could absolutely make them yourself; me, I've got the carpal tunnel syndrome thing goin' on, and the thought of scissoring out all those lil things makes my hands hurt just thinking about it. I don't think washing would work as they get so stretched out they lose their shape, even after just one night.


----------



## olwen

I use dishwashing liquid to clean my mask and hose, but the smell is starting to get to me. Does anyone know of some non-mosturizing cleaning fluid that is odorless?


----------



## Never2fat4me

I use Charlie's Laundry Soap (liquid). It is environmentally friendly and hypoallergenic. Here is link to it on Amazon, but it is available lots of places and in different sizes.

Chris


----------



## olwen

Never2fat4me said:


> I use Charlie's Laundry Soap (liquid). It is environmentally friendly and hypoallergenic. Here is link to it on Amazon, but it is available lots of places and in different sizes.
> 
> Chris



Thanks. I'll look around for it in health food stores. Someone else suggested baby soap too. I was just wondering if there was some cleaner especially made for cpap machines.


----------



## Risible

olwen said:


> Thanks. I'll look around for it in health food stores. Someone else suggested baby soap too. I was just wondering if there was some cleaner especially made for cpap machines.



Hey, Olwen, I got some cleaning wipes from this place a while ago ... They have a disinfectant solution there, but, damn, it's expensive. Dunno how well it works or if it has an odor.


----------



## olwen

Risible said:


> Hey, Olwen, I got some cleaning wipes from this place a while ago ... They have a disinfectant solution there, but, damn, it's expensive. Dunno how well it works or if it has an odor.



Thanks for the link. I saw they have a cleaning kit. I think I'm going to try that. Oh and the site has a tool to measure your face for the right size mask. I had been wondering if there was a size smaller than "small," since that size seems to big for my face. Now I can find out. Yay.


----------



## BigBeautifulMe

Yeah, cpap.com is where I always go. They're awesome.  I've said it a gazillion times in this thread, but their forum cpaptalk.com is the bees knees.


----------



## olwen

BigBeautifulMe said:


> Yeah, cpap.com is where I always go. They're awesome.  I've said it a gazillion times in this thread, but their forum cpaptalk.com is the bees knees.



Oh I just realized I already have the forum bookmarked in my browser. :doh: I should probably spend some time reading thru it.


----------



## JerseyGirl07093

LillyBBBW said:


> OMG I'M HAVING THE _SAME_ PROBLEM!!!!! My lower front teeth have sore gums from this stupid mask, and *the thing farts in the middle of the night waking me up.* Gees! And sometimes one eye is totally swollen closed from air leakage. I want to hurl the thing straight at the wall. I don't know WHAT to do.



I hate when that happens and it wakes me up! Sometimes it's so noisy it scares me! lol 



LillyBBBW said:


> Hey I'm wondering about those Remzzz's. I don't know what the materal is made out of but couldn't someone feesably take a paper towel and cut it around to do the same thing? You got a whole roll to work with. Or even buy some fabric and make a bunch of those things with a cotton muslin material? They'd all be machine washable. Just wondering what makes these things in particular so special?



I was thinking the same thing. They are too expensive for me to buy all the time (if they work) and I was hoping that maybe once I got one and saw how it was made that I could maybe copy it. 
I think what makes these things in particular so special is that whoever invented them thought of it first! lol It seems like a great idea and when I saw it I thought "Wow, it looks like something I could make and why didn't I think of this?"
Someone crafty could probably make some and sell them online.


----------



## LillyBBBW

JerseyGirl07093 said:


> I hate when that happens and it wakes me up! Sometimes it's so noisy it scares me! lol
> 
> 
> 
> I was thinking the same thing. They are too expensive for me to buy all the time (if they work) and I was hoping that maybe once I got one and saw how it was made that I could maybe copy it.
> I think what makes these things in particular so special is that whoever invented them thought of it first! lol It seems like a great idea and when I saw it I thought "Wow, it looks like something I could make and why didn't I think of this?"
> Someone crafty could probably make some and sell them online.



I've been cutting paper towels to see if that will make a difference.  One paper towel makes two of those things from what it looks like. It works well enough so that I feel inspired to keep with it to see if it works out.


----------



## adasiyan

So,

I guess i'm the newest member to the cpap club.
I've had apnea for years but only just started to do something about it in the lead up to WLS.
Initially after my consultation with the sleep specialist, they sent me home with a blood oxygen monitor to wear overnight, and from the results from that they had me in for a sleep study.
The doc said i averaged 112 episodes per hour and diagnosed me with severe central obstructive sleep apnea ( he said its the most severe case hes seen in someone my age - i'm 27)
I did the sleep study ( with all the icky wires and uncomfy hospital bed) and because i'm a mouth AND nose breather, i wore a full face mask.
It was horrible!
The humidity in the air and the warmth of it that was coming through completely threw me off balance, it was making me so mucus-y so the technician had to turn the heat off the humidifier which made it a little better,however it still didn't help overall lol
I kept dozing off and choking and then waking up.
My specialist had an oxygen level blood test (the vampire took it from one of my arteries the morning after the study) and the results said my o2 levels were around 54% after the night on the cpap.
So, he's arranged for me to borrow a machine and got me a new mask to keep for a week, hoping that using it at home will help me become more accustomed to it (and so he can get the results from the machine) - i pick it up in about 2 weeks... definately not looking forward to it.
After i return it and get the results.. its another round of poking, prodding, heart and chest ultrasounds and xrays and a lung function test.
BLEH

Ps. it too 4 washes to get the goo out of my hair from the electrody things!


----------



## Risible

Adasiyan, just know that you're not alone with your sleep apnea and your struggles getting accustomed to a CPAP. I had a tough time getting used to mine after enduring years of disrupted, bad quality sleep (I finally submitted to the machine after almost nightly suffocation/drowning dreams, when I'm sure I was, in reality, suffering from lack of oxygen); now I love my CPAP, don't know what I'd do without it (never sleep again, I guess).

I can't stand the humidity and heat, so I've cranked them both down to zero. My mouth does dry out a bit, but that's preferable to the mucous-y alternative.

Good luck with your CPAP journey; be sure and read through this thread to pick up some good tips and to find support.


----------



## imfree

Risible said:


> ...snipped...
> 
> I can't stand the humidity and heat, so I've cranked them both down to zero. My mouth does dry out a bit, but that's preferable to the mucous-y alternative.
> 
> ...snipped...



Yes Mam'e, Ms. Ris., If I don't have heat and
humidity off, on my BiPAP, woo-hoo!, my 
sinuses swell up and cut off my air!


----------



## BigBeautifulMe

I'm with you guys. No heat or humidity for me either.

adasiyan - you'll get really good advice on cpaptalk.com. Lots of experts there on central apnea, severe apnea, and autocpap trials. Go post!


----------



## adasiyan

BigBeautifulMe said:


> I'm with you guys. No heat or humidity for me either.
> 
> adasiyan - you'll get really good advice on cpaptalk.com. Lots of experts there on central apnea, severe apnea, and autocpap trials. Go post!



Thanks for that -i've had a poke around and when im feeling a bit better ( major toothache atm) i'll chuck some posts on and see what people say.


----------



## imfree

adasiyan said:


> Thanks for that -i've had a poke around and when im feeling a bit better ( major toothache atm) i'll chuck some posts on and see what people say.



Oh my, hahaha!!!, I just noticed your signature 
statement! :doh:Even with ADD, my life is
not as difficult as sucking meatballs through a 
straw. I hope yours is going better than that.:bow:


----------



## adasiyan

imfree said:


> Oh my, hahaha!!!, I just noticed your signature
> statement! :doh:Even with ADD, my life is
> not as difficult as sucking meatballs through a
> straw. I hope yours is going better than that.:bow:



LOL thanks, i love my signature.. i don't know where i heard it from but i remember i totally fell in love with it and had to use it. even if it doesnt apply most of the time 

I see my sleep doc next week after having used a CPAP at home for a week, even through i couldnt keep the thing on all night, the few hours a night that i did have it on made a major difference in how awake i was the next day.
I didn't notice the difference until the day after i gave the machine back to have the recordings analyzed by my doc - i felt bloody awful and lethargic after a night without it..
Despite how uncomfortable it was most of the time, i think with using it over time that i'll get used to it and be a million times better the next day.


----------



## Risible

adasiyan said:


> LOL thanks, i love my signature.. i don't know where i heard it from but i remember i totally fell in love with it and had to use it. even if it doesnt apply most of the time
> 
> I see my sleep doc next week after having used a CPAP at home for a week, even through i couldnt keep the thing on all night, the few hours a night that i did have it on made a major difference in how awake i was the next day.
> I didn't notice the difference until the day after i gave the machine back to have the recordings analyzed by my doc - i felt bloody awful and lethargic after a night without it..
> Despite how uncomfortable it was most of the time, i think with using it over time that i'll get used to it and be a million times better the next day.



I'm pretty sure that taking time getting accustomed to your new CPAP mask and machine is a common experience. I know it was with me; I wasn't able to keep the mask on all night for the first week or so. Upthread, other posters have described their own adjustment experiences.

Now I loves my CPAP. :wubu: Prolly couldn't sleep without it.


----------



## Never2fat4me

adasiyan said:


> I see my sleep doc next week after having used a CPAP at home for a week, even through i couldnt keep the thing on all night, the few hours a night that i did have it on made a major difference in how awake i was the next day.
> I didn't notice the difference until the day after i gave the machine back to have the recordings analyzed by my doc - i felt bloody awful and lethargic after a night without it..
> Despite how uncomfortable it was most of the time, i think with using it over time that i'll get used to it and be a million times better the next day.



Good luck at the doc, adasiyan! 

I still am not sleeping great, but the problem for me now is I wake up after too few hours of sleep. But I really notice the difference when I sleep without my CPAP - I have only done so twice since getting the CPAP, once when I forgot my cord at a hotel once, and once when the power was out - as I wake up very frequently during the night. Same thing with napping - when I need a nap, I can easily sleep 45 minutes with the CPAP, but no more than 10-15 minutes without it. I never noticed it before I got mine last year, but now I certainly do! 

May yours bring you many years of improved sleep.

Chris


----------



## Famouslastwords

I breathe through my nose, but is severe drooling a sign of sleep apnea? I swear I drool every night and there's like a load of dried gunk on both sides of my face when I'm done sleeping. :blush: I will be scheduling a sleep study soon, as soon as I can get into the doctor's office, apparently he has been given a lot of new patients and you have to schedule an appointment months in advance, I only get my schedule 2 weeks in advance and if I request any days off then it's considered an unapproved absence and three of those in 90 days and you get fired. I have some other symptoms too.


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## BigBeautifulMe

I don't know that it's really a symptom, but it's not a sign you DON'T have it or anything, either. I definitely do the same thing... lol.


----------



## Famouslastwords

Like, do you drool in your mask or anything? Because I could imagine that would get real uncomfortable quick.


----------



## BigBeautifulMe

Mine is just a nasal mask, so no.


----------



## Never2fat4me

Famouslastwords said:


> I breathe through my nose, but is severe drooling a sign of sleep apnea? I swear I drool every night and there's like a load of dried gunk on both sides of my face when I'm done sleeping. :blush: I will be scheduling a sleep study soon, as soon as I can get into the doctor's office, apparently he has been given a lot of new patients and you have to schedule an appointment months in advance, I only get my schedule 2 weeks in advance and if I request any days off then it's considered an unapproved absence and three of those in 90 days and you get fired. I have some other symptoms too.



I drool sometimes, but normally it means I'm getting good sleep. But like BBMe said, it doesn't mean anything when it comes to sleep apnea.

Also, with respect to the sleep study, you shouldn't need to take any time off for it (unless you work nights, and even then, I am sure you could work something out with the clinic). Mine took two nights - once to observe me sleeping and then the next night to observe me with CPAP. Unless you have to travel a long way to get to the clinic and cannot physically make it back to work the next day, it really is no different than having a poor night's sleep (and with sleep apnea, we have plenty of experience with those!).

Good luck with the study! Hopefully it will bring good results for you.

Chris


----------



## Linda

Before I was diagnosed with sleep apnea and got my mask/machine combo I drooled bad. I would wake up in puddles of nastiness. After I started wearing the mask and sleeping better the drooling stopped. I don't know if it is a true correlation but it was my situation.


----------



## BigBeautifulMe

Hmmm, I don't necessarily agree - I would take a day off the next day, if at all possible. I was so exhausted after my sleep study (I slept really, really badly) there was no way I could have gone to work.


----------



## Risible

FLW, I used to drool something fierce during sleep (what little I got of it) prior to starting on my CPAP; now I don't drool at all. While my machine has a built-in humidifier and heater, I don't use either - I don't know if that has anything to do with it (the continuous air pressure would serve as a drying effect without the humidifier on).


----------



## Famouslastwords

Honestly, it's disgusting, I wake up with puddles of drool...and sometimes it's after wiping it on my pillow, when I still wake up with drool all across my face. I was just wondering if there was a correlation. I just have to get in to see my doctor to see if he'll schedule a sleep test. He took on some new patients recently and he's booked for a month and a half in advance. Well I don't get my schedule that early and taking a day off for a doctor's appointment is considered an unscheduled absence (even if you request it beforehand) and 3 of those and you're out. I have already taken one because I slept so poorly the night before and I just physically could not get up. Yesterday, I went into work slurring speech and everything because I was so tired, they probably thought I was on drugs. I almost quit because of that day.


----------



## selina

That's tough.Who are new to the technology, learning to sleep with a CPAP machine can take some time. It's not the most comfortable thing in the world to have constant air pressure being forced down your lungs.


----------



## Risible

selina said:


> That's tough.Who are new to the technology, learning to sleep with a CPAP machine can take some time. It's not the most comfortable thing in the world to have constant air pressure being forced down your lungs.



Actually, I no longer experience that forced-air feeling; after the initial adjustment to the CPAP, which lasted several weeks, I don't even notice the air pressure. The mask continues to be uncomfortable somewhat, though.


----------



## Famouslastwords

The verdict's out. I've had my sleep test done and I don't have sleep apnea. I'm a shallow breather while I sleep and my oxygen levels drop during sleep. They delivered the oxygen today.


----------



## BigBeautifulMe

Hey y'all! Just a friendly reminder to all my cpap-using friends as the "perfect storm" approaches the east coast - there will probably be a LOT of power outages. Do you have battery backup for your CPAP? There are actual battery backup packs you can purchase from your CPAP supply store. Alternately, I was told today by my CPAP supplier that you can also plug it in to one of those car jumper battery packs if there's an outlet on yours! I'll be looking into that further and making sure it's safe today. I'll let you guys know what I find out.


----------



## Never2fat4me

BigBeautifulMe said:


> Hey y'all! Just a friendly reminder to all my cpap-using friends as the "perfect storm" approaches the east coast - there will probably be a LOT of power outages. Do you have battery backup for your CPAP? There are actual battery backup packs you can purchase from your CPAP supply store. Alternately, I was told today by my CPAP supplier that you can also plug it in to one of those car jumper battery packs if there's an outlet on yours! I'll be looking into that further and making sure it's safe today. I'll let you guys know what I find out.



You can also use a car or marine battery, though you will need an inverter to convert direct current (DC) to alternating current (AC). CPAPs are finicky, and they like a smooth wave, so you should invest in a sine wave inverter (regular inverter is not smooth - the wave it creates basically looks like stairs going up and down; sine wave inverter creates AC that is just like what comes out of the socket in the wall, and sometimes the AC they produce is even cleaner). Downside with this is that they are expensive, but they will help protect your investment. (Also, they are good for running other sensitive elctronics like computers.) 

Myself, I have a marine deep cell battery - main reason is that it serves double duty as power source for a trolling motor, but they are also better for longer term use than car batteries (which are really intended for surge power - e.g., starting the car) - and a Sammlex Pure Sine Wave Inverter (I bought one with more capacity than needed for a CPAP so that I can use it for running other appliances.)

Hope everyone stays safe over the next few days, and that any power outages may be brief.

- Chris


----------



## activistfatgirl

I remembered seeing this thread years ago and figured I'd log into Dims and check-in. Just got my sleep study results, I have severe obstructive w/ 30 up to 67 (yes, 67!!) episodes an hour. My blood oxygen went down to 72% which has got to be hurting me for real.

My question for you smarties is: if this is so dangerous why does it take so long to get help? I have to wait 2 weeks to get my cpap study and then "up to 2 months" to get the actual machine, and if my insurance doesn't pay for the good kind I'll be forced into an auto flow kind. 

What should I do to stay safe and breathing at night until then? Am I in danger?

Also please tell me "everything is going to be alright!" ha :bow:


----------



## BigBeautifulMe

> My question for you smarties is: if this is so dangerous why does it take so long to get help? I have to wait 2 weeks to get my cpap study and then "up to 2 months" to get the actual machine, and if my insurance doesn't pay for the good kind I'll be forced into an auto flow kind.



The auto kind is actually the best kind, because you can use it as either straight-up cpap or allow it to auto-titrate (i.e., adjust your pressure based on your breathing needs). I'd suggest going to cpaptalk.com and asking what the top-of-the-line machines are at the moment, and don't let your supplier give you anything else. 



> What should I do to stay safe and breathing at night until then? Am I in danger?



There's always danger with untreated sleep apnea, but your body develops certain slight coping mechanisms when you've lived with it for a long time. You'll likely be okay, but sleep sitting up if you can - in a recliner or with a wedge pillow in bed - until you get your machine. Failing that, sleep on your stomach -- you definitely don't want to sleep on your back, as for most people, apneas are worse in that position. After you have your machine, though, don't ever sleep without it, not even for naps, because, once it's actually used to getting air while you sleep, your body rids itself of those coping mechanisms in favor of allowing you to actually breathe. 



> Also please tell me "everything is going to be alright!" ha



It will be. Make sure you get a great machine with the ability to collect ALL your data so you can problem-solve when you first begin treatment. You'll have to try different masks, different settings, etc. until you get it right. Don't give up -- it's worth all the trouble. And like I said - cpaptalk.com. They are so incredibly helpful there and you'll learn a lot just reading.


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## activistfatgirl

Thanks BBM, this is helpful!


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## Never2fat4me

activistfatgirl said:


> What should I do to stay safe and breathing at night until then? Am I in danger?
> 
> Also please tell me "everything is going to be alright!" ha :bow:



Everything is going to be alright! 

Seriously, it will. Worst case scenario, you will continue to be more tired than you should until you get the cpap. If you left this untreated over the long term, then yes, your sleep apnea would endanger your health. But an extra two to four months of no treatment will not be a big deal and won't hurt you.

Are you a back or a side sleeper? I know it is hard to make yourself a side sleeper if you are not, but sleeping on your side can help a bit while you are waiting for the sleep test and the cpap. Btw, check with your insurance company if you can buy somewhere like cpap.com. Service there is great - no way it should take up to two months to get your machine! - and prices are WAY better than the sleep center will offer. My insurance company let me buy there and no doubt saved a lot of money themselves not paying 80% of inflated prices.

One thing I would note is that cpap is not a panacea that will result in the greatest sleep of your life and you will always sleep through the night like a baby and never be tired again. You will definitely get much better sleep, and fewer apneas will reduce the strain on your heart. I certainly have noticed how poorly I sleep whenever I am without the cpap (very rare, but one time I left the power cord plugged in at a hotel and had to go a week or so without the cpap - it was awful!!), but many nights I still don't sleep well even with it. That is no doubt as a result of my own personal issues - and I wish to God I knew what they were!  - and I don't say this to be a downer. I just think that expectations need to be realistic for what a cpap can and cannot do.

And my little tip of the day - go to http://www.padacheek.com/ (after you choose your mask) for some really great padding for the mask. I have just bought the cheek pads (for my Opus 360) and the leak strap (for my Quattro mask), and they work wonders, especially the leak strap. (Cheek pad helps prevent getting marks on my cheek from the nasal pillow mask I use every day - just a matter of vanity really, as the mask is not uncomfortable - and the leak strap helps with my full face mask - which covers nose and mouth - that I use when I have a cold. It used to "fart" quite frequently during the night (from air escaping), which made me reluctant to use it, as I had to either make the mask really tight, which hurt my head, or get woken up when the air leaked, but this adds pressure in just the right place and seems to have fixed that problem.)

Best of luck with your sleep test and beginning a new sleep life with a cpap! And hope you can be comfortable until then, and whatever you do, don't worry about whatever amount of time it takes to get the machine. You'll do great!

- Chris


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## largenlovely

*bump* I was just diagnosed today with sleep apnea. He said he could tell I had it just looking down my throat but I knew I had it. I just hadn't been to the doctor about it recently. Anyway, I go into the sleep lab at the end of August for them to evaluate how bad I have it and then sept 1st they're gonna fit me for a machine. Kinda nervous but excited too. I have all sorts of sleep issues

And I plan to come back and read this entire thread lol

ETA: yesterday...I was diagnosed yesterday lol. But it still feels like today lol


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## Never2fat4me

Great news Melissa! This will make you feel much better. As I have posted before, it is not a panacea. I still have some sleep issues, but the sleep I get is much better with my CPAP.

Keep us updated on your progress!

- Chris


----------



## largenlovely

Never2fat4me said:


> Great news Melissa! This will make you feel much better. As I have posted before, it is not a panacea. I still have some sleep issues, but the sleep I get is much better with my CPAP.
> 
> Keep us updated on your progress!
> 
> - Chris



Thanks Chris  that was what he told me too. Some of the other sleep issues I have may not clear up but that the sleep apnea could be exaggerating them as well. I have a tendency to alternate between getting no sleep to sleeping a lot. Back and forth and back and forth in a kind of extreme way...but hopefully this might relieve some of the problems at least


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## imaginarydiva21

i have been trying to use my cpap machine for nearly a year still not getting used to it so have been avoiding using it now i keep waking up struggling to breathe any tips should i try again ??


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## Never2fat4me

Really depends on what the problem is when you say you cannot get used to it. Best guess is that it is something with the mask; if it is that, then you should probably work with a professional to get the right one. Let us know what it is that is bothering you and what type of machine and mask you have, and maybe some of us will have some useful tips. 

- Chris


----------



## loopytheone

imaginarydiva21 said:


> i have been trying to use my cpap machine for nearly a year still not getting used to it so have been avoiding using it now i keep waking up struggling to breathe any tips should i try again ??



I feel you, I have the same problem. =/ What kind of mask do you use? I think the best one to use depends on how you sleep as well. I have a hose supporter thing that keeps the hose from getting tangled around me too, which helps.


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## Cobra Verde

A CPAP thread! I don't know how I missed this or why I never guessed there would be one here of all places.

Weird question: Does any ever find they get greasy skin from the mask leaking? I've been waking up with a greasy forehead (nice image, no?) and since my skin doesn't get greasy any other time of the day I'm wondering if the nasal mask is leaking upwards when I roll over in my sleep. It sounds unlikely but I can't think of what else it could be.





imaginarydiva21 said:


> i have been trying to use my cpap machine for nearly a year still not getting used to it so have been avoiding using it now i keep waking up struggling to breathe any tips should i try again ??


Perhaps you just need a different type of mask. Like if you have one that covers your nose and mouth maybe you'd be better off with just a nasal mask. Or vice versa. Basically what they^ already said.


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## fatluvinguy

BigBeautifulMe said:


> It took me a year and a half (I had an incompetent doctor and DME). My story is a rarity - but there are definitely people who take much longer. It's overnight for a few, but for most it takes at least a week, for many several months. It really depends on how severe your apnea is and how long you've been going without good sleep (you'll have sleep debt to pay off). If you start feeling like your mouth is getting quite dry, or if your throat starts getting sore, those are both signs of mouth-breathing, so keep an eye on that. Good luck, and don't give up!



I've been using a Bi-pap machine for the last 6 months now, and i'm in the category of being a slow adjuster, but I think to some extent after trying different masks and my own innovations i'm doing better.

I'm curious about your comment about mouth breathing. The doctor and people i've dealt with don't seem to think that's a problem and just gave me recommedations for helping with the dry mouth issue. (nothing has really worked so far.) The important thing at the end of the day is my sleep apnea, which was pretty severe is under control. I don't know if I could adapt to anything that forcibly closed my mouth at night. Some would like to see my mouth forcibly closed all the time, by I digress. I'd like to hear your thoughts on that issue.


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## fatluvinguy

JerseyGirl07093 said:


> I hate when that happens and it wakes me up! Sometimes it's so noisy it scares me! lol
> 
> 
> 
> I was thinking the same thing. They are too expensive for me to buy all the time (if they work) and I was hoping that maybe once I got one and saw how it was made that I could maybe copy it.
> I think what makes these things in particular so special is that whoever invented them thought of it first! lol It seems like a great idea and when I saw it I thought "Wow, it looks like something I could make and why didn't I think of this?"
> Someone crafty could probably make some and sell them online.



That's what I told my wife. I tried the liners and they were just a waste of money, so she fashioned one herself out of spare material and it seems to be working pretty good. Still needs some minor improvements, but I don't have issues with mask leaks and problems with marks on my nose have gone away. It's actually attached to the mask by the way, so it stays in place I was joking with her that she should perfect her design and sell it online. But maybe there really is a market for her innovation.


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## DragonFly

fatluvinguy said:


> I've been using a Bi-pap machine for the last 6 months now, and i'm in the category of being a slow adjuster, but I think to some extent after trying different masks and my own innovations i'm doing better.
> 
> I'm curious about your comment about mouth breathing. The doctor and people i've dealt with don't seem to think that's a problem and just gave me recommedations for helping with the dry mouth issue. (nothing has really worked so far.) The important thing at the end of the day is my sleep apnea, which was pretty severe is under control. I don't know if I could adapt to anything that forcibly closed my mouth at night. Some would like to see my mouth forcibly closed all the time, by I digress. I'd like to hear your thoughts on that issue.



Been a CPAP user for years and dry mouth is a big sign of your mouth being open. I have just a nasal pillow, just goes into my nose and the only time I seem to go open mouthed is when I am congested. Doesn't just mean runny sinuses but when your inflamed. The air being forced into your nose comes out your mouth. 

There is a chinstrap (just a simple vlecroed band that goes under your jaw), should be available at where ever you get cpap supplies. It does not force your mouth closed but supports the chin is that makes sense. It might be worth a try, if your aren't getting a good seal then you wont get all the benefits. 

I would also try a decongestant.... that might help. 

Getting used to the CPAP/BIPAP is an ordeal but a life saver!


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## DragonFly

fatluvinguy said:


> That's what I told my wife. I tried the liners and they were just a waste of money, so she fashioned one herself out of spare material and it seems to be working pretty good. Still needs some minor improvements, but I don't have issues with mask leaks and problems with marks on my nose have gone away. It's actually attached to the mask by the way, so it stays in place I was joking with her that she should perfect her design and sell it online. But maybe there really is a market for her innovation.



Check EBAY - there are a ton of different types of products people hand manufacture to make CPAPs more comfortable. 

I have made 100% all cotton flannel padded strap covers. They are lined with all cotton batting. Helps to keep the straps from leaving marks on the face, also can help make the mask more snug without feeling confined.


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## willomk1

For my wife and i the caps machine was a god send. After a viral infection she developed night time incontinence,which if your a large lady was so hard to cope with.The doctor though sleep apnoea and she went for testing. She was indeed and we got the machine or huffer puffer as we call it.At first without humidifier it was nose bleed central but with it it stopped the incontinence and shes now according to the manufactures very compliant lol.
So stick with it if you can.


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## MattB

Bumping this thread, last night was my first with the mask. It was...interesting, to say the least. I lasted 7 hours with it on, so I guess that's a good sign. 

I don't know if I'll make it through reading all 36 pages here, but I'll give it a shot.


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## Jon Blaze

I was diagnosed a year ago. CPAP use unfortunately causes me to not have restful sleep. Every time I sleep with it for less than three hours, I wake up much more refreshed than if I were to use it as recommended (greater than four hours). I will say it is a godsend when I'm dealing with allergy issues though.


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## LeoGibson

Dude I’ve been almost 3 years on mine. I use it every night at least 6 and upwards of 8-9 in my days off. It changed my life!!


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## MattB

I get panicky, so I was worried about that with the mask, but it wasn’t a problem. I’m looking forward to seeing how it helps me after awhile using it.


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## LeoGibson

It becomes second nature after a while.


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## MattB

8 hours last night, and I only woke up once. (!) Not bad for day two, I guess I'm for sure one of the lucky ones that takes to it right away.


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## MattB

Yep, it's official. I love the CPAP. I'm still tired during the day, but I'm feeling less "brain fog" if that makes sense. I don't wake up during the night as many times as I was. 

I give it 3 thumbs up!


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## MattB

So I'm approaching one month with the mask. My opinion of it hasn't changed, I really like using it and I'm feeling much better during the day. My question for the pros is, does it get better the longer it's used, or am I seeing the most benefits I'll get right now?


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## LeoGibson

For me the benefit was instantaneous. I haven’t looked back since, so there was nothing to get better for me because I took to it from the jump. 

That being said, I’m currently mulling over doing the surgery my ENT recommends for curing sleep apnea. He seems to think I’d make a good candidate for it and then I could get off the machine altogether.


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## MattB

Yeah, I noticed good things right away. I still get sluggish during the day, so I was hoping it would keep improving over time.


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## LeoGibson

I have bouts where I still get tired during the day, but that’s not from the apnea I don’t think. I think that’s just more of working long hours and not sleeping enough.

I say that because it’s a different tired. With the apnea I couldn’t even sit down to watch the evening news. I’d be asleep in the chair within a minute or two.


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## MattB

I had a solid 9 hours last night, and I'm fighting sleep right now. Same as always. If I do sleep, then I'll be up late. It's a vicious cycle.


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## LeoGibson

When I sleep long like that, I feel bulletproof the next day. That might be something else going on.


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## Tracyarts

I'm going to be getting a bipap machine. Ever since my second brain event (the TIA), I started having sleep issues. At first it was blown off as normal post-stroke stuff, but it got to the point where I had a sleep study done recently and it showed that I'm having hypopnea episodes. Hopefully I'll be set up with the machine by the end of the week. I should have already had it but there was a mix up with the doctor's order not being coded properly. 

My husband uses one for sleep apnea, he had severe episodes of not breathing at all. Now, he had the surgery to correct it about 15 years ago, but it started to fail about 5 years ago and by last year the apnea was bad enough again that he had to start using the bipap machine at night. Obviously elective surgery is no longer an option for me because of the strokes, so my doctor didn't even discuss it. 

I'm looking forward to better sleep.


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## LeoGibson

I hope it helps you sleep better. 
If you don’t mind me asking, what surgery did your husband have? The one my ENT suggested is a newer procedure used in conjunction with the older surgery. 

He wants to trim some of my soft palette and take out my tonsils which is the older surgery. I think it’s referred to as UPP?

The second procedure is called an airlift. It’s where they loop a couple sutures around your hyoid bone and pull it forward and another on a muscle on your tongue that pulls it forward. Supposedly when you lay down that keeps your tongue and airway from closing. 

I’m a little on the fence though about it but it would be nice to sleep normally again.


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## BigElectricKat

I think I'd better get back on mine as well. Several years ago I tried it but just couldn't get past the mask making me feel claustrophobic. Last year I was given the smaller mask and it helped a great deal. My only problem was that when I would wake up in the middle of the night (potty time), I had a hard time getting back to sleep again. But overall, I can usually get a good 4-5 hours in on any given night.


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## da3ley

I use C pap. i hate i, but i use it.


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## DragonFly

MattB said:


> I had a solid 9 hours last night, and I'm fighting sleep right now. Same as always. If I do sleep, then I'll be up late. It's a vicious cycle.


I think you can keep seeing incremental improvements. I’ve had mine since 2012. I can’t sleep without it now. If I remember correctly. I had several follow-ups with the Doc. They took readings from the machine. Maybe they need to make some adjustments! Wear your CPAP proudly!!!!!! It is a life saver.


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## Tracyarts

My husband had his soft palate tightened, tonsils and adenoids removed, uvula and surrounding tissue trimmed away, and they also did some work on his nose and sinuses to open up his nasal airway better. 

The sleep specialist we see said he was lucky to get more than 10 years of benefits from it. 

He took to his bipap machine immediately, and had full effect from the first night. I'm not sure how I'll do with it, I have so much trouble falling asleep and staying asleep. But we'll see. I get it next Tuesday.


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## LeoGibson

Thanks for the reply Tracy. 

I’m curious,after they do all that why does the problem return? Does the tissue regrow and construct the airway again?

My hooe is that what they plan on doing is a lasting fix.


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## Tracyarts

For my husband, the tissue didn't grow back, but his esophagus is narrower than normal. That plus age led to the apnea coming back.


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## LeoGibson

Thank you for sharing that. These are a couple of questions I wouldn’t have thought if asked my my doc when we have our next consult next week. 

He just did a nose surgery where he fixed my deviated septum and cleaned up some stuff and put a balloon up there. After that heals he wants to do the other surgery.


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## LifelongFA

I know this response is to a very old post, but the CPAP is a HUGE deal for larger guys and gals especially as we age. Don't let your pride get in the way - it seriously will improve your quality of life and maybe extend it.


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## Tracyarts

So I got my machine yesterday. My doctor prescribed a nasal mask, and I chose the kind that's a soft wide silicone tube that sits under the nose, and not a cup that covers the nose. The hose attaches to the mask on the top of my head, the air flows in down through the sides.

I have a very, very hard time dealing with anything on my face, so this is as much as I can handle without being sedated. 

I managed about 3 hours overnight and then a 2 hour nap today with it. The big problem is that when I first put it on, even with the lowest prrssure, the air flow and the sensation of the mask on my face makes it feel like my airflow is being impeded and that freaks me the hell out. 

I'm going to be brutally honest here. This is hard. Back in the early 90s, I was in a very abusive relationship and one of the ways the guy used to like to torture me was to cut off my airflow in the middle of the night so I'd wake up in a blind thrashing panic with his hand over my face suffocating me. 

I think the only way I'm going to be able to do this is wear the mask while listening to guided meditations for PTSD every day until putting it on and starting the air flow doesn't trigger the start of a panic attack. 

My doctor knows about this, and while my insurance company requires 4 hours a day minimum usage to be in compliance with the device, she said if an hour each day needs to happen during meditation, until I get more comfortable with it, that's fine.


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## LifelongFA

Hang in there. This was a huge struggle for me during the first month or so. I had some horrible nights along the way, but I eventually was able to relax enough (or was so exhausted) to start getting over the 4 hours a day. Once you get there, you will be SHOCKED at how much more rested you feel - not only in the morning, but all day. I consider it the biggest accomplishment I made for myself last year.


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## BountifulBabs

I just started using a cpap and glad for this thread. I've been having issues adjusting and happy/sad I'm not alone.


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## BigBeautifulMe

Hey LeoGibson - I'd highly recommend finding a sleep apnea forum. I used to be a regular on one, and the advice back then (maybe 5 years ago) was to run the other direction from a UPPP because it has the potential to make apnea worse AND make it so you physiologically cannot have your apnea treated by CPAP anymore. I have no idea if that's still true, but might be worth talking to people with a lot of experience about.


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## LeoGibson

I’ve got a couple I read through and such, but I’m not a member of them. Thank you for the recommendation. I’m about 50/50 and actually dropping from there even. Mostly because of the reasons mentioned and the fact that I have zero problems complying and using my BiPap machine and it is well treated. I’m waiting for insurance approval for an oral appliance and I’m going to see if that may work for me now that I’ve lost about 80 lbs. since I started using the machine. Surgery is an option but I want to exhaust everything else first.


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## Tracyarts

I seem to be taking to mine really well. It helped that I had just started a neurologic medication that causes drowsiness. I've ranged 8 to 15 hours a day sleeping with it. I have trouble sleeping more than 3-4 hours at a stretch though because of pain issues. But hopefully the new prescription will take full effect soon


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## MattB

I had my follow up appointment with the sleep clinic yesterday. My apnea is improving, so the mask is doing it's job. I'm still good with wearing it every night, although once in awhile I feel like taking it off early.


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