# The headache that doesn't go away



## Miss Vickie (Feb 23, 2011)

Hi all,

I thought I'd share with you a challenge I've been going through, just in case my experience can help someone, and they can seek early treatment.

On January 7, while adjusting phototherapy lights at work, I got a headache. Figuring it to be a migraine triggered by staring at the light, I took Motrin, then Maxalt, and it mostly went away but some of it lingered. The headache continued, day after day, through the month of January. Motrin helped, but it never entirely went away. Figuring it was stress from working and being in school full time, I saw my chiropractor and massage therapist. Wondering if it was my TMJ problems, I religiously wore my night guard. I visited my acupuncturist. In desperation I saw my "regular doc" who thought I had migraines triggered by neck tension and he did trigger point injections into the base of my skull. Everything helped for a little while, but I'd be back with a headache within hours.

Then, a couple weeks ago, I woke in the middle of the night with horrible nausea and a thunderclap headache. Knowing that when you have "the worst headache of your life" you need to get to the doctor, off to the ER I went. My blood pressure was sky high, and they started looking at whether this was a migraine or something more dire. A stroke? Aneurysm? Vessel malformation? Meningitis? I had a CT, CT with contrast, and a lumbar puncture ("spinal tap"). Everything was normal... except when they did the LP the pressure was high, which is a diagnostic indicator of pseudotumor cerebri, also called idiopathic intracranial hypertension.

They gave me lots of IV meds and I saw a neurosurgeon who suggested (quite strongly) that I have an cranial angiogram to truly rule out a bleed or aneurysm. I spent about 13 hours in the ER, and went home, waiting for the call to schedule the angiogram. The headache settled back down to its usual annoying self and I worked the rest of the week at clinicals.

Friday I had my angiogram and it went great. My vessels are "pristine" (booyah! Take that, fat haters!) and while it was a weird feeling, having a catheter snaking its way through my body squirting hot dye into my head, it wasn't painful. 

My headache started worsening after the procedure, but I figured it was lack of caffeine and Motrin. I was offered IV pain meds, but I refused. I went home, took Motrin and tried to sleep it off. But it got worse, and worse, and worse. I became confused, and my vision started failing. Sure that I was having a stroke, I was doing neuro checks on myself (don't laugh!) and had Burtimus drive me to the ER. They called the neuro who said it wasn't the angiogram but to give me lots of good IV meds to settle me down. They gave me the same stuff I had before -- dilaudid, fentanyl, zofran -- and after awhile the headache went away. Other than my vision being very very blurry, my neuro checks checked out. I went home wit ha prescription for another migraine medicine (Maxalt started making my heart feel like it was going to explode so THAT'S a bad drug for me). 

I freaked out all night long, obsessively checking my vision, unable to text my friends, watch TV, everything was a big blur. Saturday I stayed in bed, afraid to move for fear of worsening my headache; it started to worsen at bedtime so I took the migraine medication and hoped it would work. Sunday, I woke up with another headache to beat the band and back to the ER we went. My vision was better (not perfect but I could see enough to watch a movie) but my head was hurting more. More IV meds, different migraine medication, and home we went. 

I finally got in with a nurse practitioner who specializes in neurology on Tuesday morning. My vision was back by this time but the minor headaches were still there. She did the full on neuro exam, which was normal, and said that I have both migraines AND this thing called pseudotumor cerebri. Or, as she said, "You have ticks AND fleas!"

Pseudotumor cerebri is a disease that occurs spontaneously (or it can be secondary to another condition) where the body doesn't shed CSF so it builds up around the brain. This "squishes" the brain and causes headaches, and presses on the back of the eye and can cause permanent blindness. They don't know why this happens, but risk factors include being a woman in her 40's, being somewhat plump, having a history of anemia, and having used steroids and birth control pills.

The symptoms include headache worse in the morning, pain behind the eyes, whooshing sound in the ears or tinnitus, seeing "floaters", and sometimes confusion. Treatment includes a medicine called Diamox, which is a diuretic that specializes in pulling fluid off the brain and decreases eye pressure such as found in glaucoma. It has some interesting side effects -- pins and needles in the hands and feet, and worse, carbonated drinks all taste like rocket fuel. It's quite remarkable. This drug has done what nothing else could do -- gotten me over my Diet Coke addiction. 

If this medication doesn't work (and I'm still having symptoms), other options include putting a shunt in my brain, allowing the fluid to drain into my belly, and an optic nerve sheath fenestration which I think has something to do with putting a HOLE in the back of my EYE. I'm still waiting to get in to see the neuro ophthalmologist to find out more about the prognosis for my vision. 

We're still working on my treatment plan, and naturally, since I'm a nurse, I have to be especially complicated.  Treating both migraines and pseudotumor isn't easy, but my provider is super smart and I'm hopeful that I can get out of pain soon. And fortunately my instructors at school and my boss at work are being really patient with me. The other day I had to lie down in a dark room for a bit while I was at work because the pain was so bad, which helped tremendously. My coworkers covered my patients for 30 minutes, and I was able to work the rest of the shift.

So anyhow, if you get a headache that doesn't go away, worse in morning, and you get any weird visual or auditory stuff going on, think about your pal Miss Vickie and remember the disease with the funny name.  The more I talk to people the more people I find who have this! The good news is that it can spontaneously go away, too, so if you can safeguard your vision and hang in there, there's pretty good chance that you'll be okay.


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## penguin (Feb 23, 2011)

Oh, that's a scary experience. I'll certainly keep it in mind, as a just in case!


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## Miss Vickie (Feb 26, 2011)

Wee update: I'm not getting better. In fact I'm getting worse. My cognitive impairment is becoming pretty impressive -- I'm spacier, pretty forgetful, and my vision is pretty unreliable. We're considering doing a "therapeutic tap" (taking fluid out of my spinal cord) to relieve pressure, and I'll probably end up on steroids. This isn't going to be a quick fix. I'm on two different diuretics now, pain killers, and starting an anti-convulsant which is a good headache drug. 

My neuro lady is consulting experts in the field as far away as Seattle and they're saying this could be neurosarcoidosis, which would be a disastrous development. I've had Sarcoidosis (an autoimmune disease) officially since 2000, but unofficially since 1993. I've done well but I did have a flare up in May -- my first since WLS in 2005 -- that required steroids. It's always affected my lungs, never my brain.

Next step is getting in with the neuro ophthalmologist to be sure I don't have permanent eye damage, and then we're going to hit it hard with steroids. In the meantime, I'm having a really rough time with school, which makes me tremendously sad. I may have to quit or go to half time. I'm amazingly able to work so far, as long as I work in Mom Baby, which is pretty predictable. I think my L&D days are over for a bit.

This is, apparently, serious biz. I hope it never happens to any of you because it is absolutely no fun feeling like your brain has turned to mush, and hurts, to boot.


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## CastingPearls (Feb 26, 2011)

I don't know what to say except that you're in my thoughts and I hope that things improve asap. Hugs.


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## Paul (Feb 26, 2011)

Vickie,

I am glad your neurologist is getting to the root cause of the headaches. 

It is no fun being on steroids. My wife has asthma and steroids are often prescribed for an asthma attack. She doesn't like the side effects from steroids and will only fill a steroid prescription if she still suffers the effects of an attack after a day or two.

Keep us updated. You are lucky to have a doctor who works so diligently to diagnose the cause of the illness. My prayers go out to you and your family. Get better.


Miss Vickie said:


> Wee update: I'm not getting better. In fact I'm getting worse. My cognitive impairment is becoming pretty impressive -- I'm spacier, pretty forgetful, and my vision is pretty unreliable. We're considering doing a "therapeutic tap" (taking fluid out of my spinal cord) to relieve pressure, and I'll probably end up on steroids. This isn't going to be a quick fix. I'm on two different diuretics now, pain killers, and starting an anti-convulsant which is a good headache drug.
> 
> My neuro lady is consulting experts in the field as far away as Seattle and they're saying this could be neurosarcoidosis, which would be a disastrous development. I've had Sarcoidosis (an autoimmune disease) officially since 2000, but unofficially since 1993. I've done well but I did have a flare up in May -- my first since WLS in 2005 -- that required steroids. It's always affected my lungs, never my brain.
> 
> ...


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## it's only me (Feb 27, 2011)

hope all goes well for you, i'll be saying a extra prayer for ya tonight.


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## Sandie_Zitkus (Feb 27, 2011)

Vickie. I don't post here much - but your health problem made me want to say something to you. I am so sorry you are going through another health crisis. It makes me sad to think it might stop you from doing the one thing you love most of all - delivering babies. My hope for you is that they find a way to stop whatever is happening so you can get back to your life. I wish you the best. And I will light a candle for you and ask the Goddess to give you comfort. You'll come through this Vickie. you are the strongest person I know. Much love sent your way.


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## Miss Vickie (Feb 27, 2011)

Thanks, you guys. You're making me cry a little with your kindness. It's a little scary around here right now but we're hitting it from every angle: Western medicine, acupuncture, PT, chiropractic, energy work, leaving no stone unturned. I'm also trying to figure out what lesson is in this illness, because I believe that there is usually a lesson that needs learning.

In the meantime I'm able to work (not easily but I can work), but school is definitely something that's in jeopardy. I just don't have the brain power right now, and my eyes are pretty wonky.

Thanks for your good thoughts, candles, and care. I'll keep you updated.


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## Saoirse (Feb 27, 2011)

I hope everything goes well, Vickie. I still cant get over the spinal tap! YOUCH!!!


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## Tad (Feb 28, 2011)

Fingers crossed for you quickly getting a diagnosis....and hopefully not to scary of one at that. Please let us know how it goes....you've helped so many people here with health questions, I wish we could do more to help you in turn.


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## Dr. Feelgood (Feb 28, 2011)

May you be safe, healthy, and happy.


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## Surlysomething (Feb 28, 2011)

Miss Vickie said:


> Thanks, you guys. You're making me cry a little with your kindness. It's a little scary around here right now but we're hitting it from every angle: Western medicine, acupuncture, PT, chiropractic, energy work, leaving no stone unturned. I'm also trying to figure out what lesson is in this illness, because I believe that there is usually a lesson that needs learning.
> 
> In the meantime I'm able to work (not easily but I can work), but school is definitely something that's in jeopardy. I just don't have the brain power right now, and my eyes are pretty wonky.
> 
> Thanks for your good thoughts, candles, and care. I'll keep you updated.


 
Damn. You're in my thoughts lady. I hope they get things figured out.


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## Miss Vickie (Mar 1, 2011)

Thank you, all. I was thinking about it this morning... Sarcoidosis, thyroid cancer, now this. I'm sure not the luckiest chickie on the planet when it comes to getting strange diseases. 

The eye issues are getting worse, but I have an appointment with the eye specialist on Wednesday. Today I see my neuro lady so hopefully will get some good info and find out the plan for when I get steroids.

And Tad, just being able to share my experience and get support is what I need right now. I've got lots of people taking care of me in terms of my health; what I need are people I can vent to. This is a pretty scary thing with me, and I'm really frustrated that I'm probably going to have to put off/quit school for a bit. 

Thanks again for all of the support.


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## Jes (Mar 1, 2011)

awww, booboobear, I'm so sorry to hear this. i know you'll make good choices, and that's all you can control, so fingers crossed.


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## activistfatgirl (Mar 1, 2011)

I'm sending strong sentiments of solidarity and love and healing! Please keep your internet-y Dims-y family posted on your progress. Sometimes (a lot of times?) unfair things happen to good people. And you're good people. I'm sorry, Vickie!


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## Tad (Mar 1, 2011)

Good luck with your appointments....do please let us know how it is going, when you feel up to it.

I hope you don't have to give up school for the semester, that would be so disheartening. But maybe view it as changing the focus of your studies to what is going on in your body at the moment? You'll certainly be developing all sorts of new expertise....


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## Paul (Mar 1, 2011)

Sending good vibs and prayers your way Vickie.


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## Miss Vickie (Mar 2, 2011)

Thanks, everyone. It had seemed like the headaches were a little better but yesterday the eye exam by my neuro lady gave me a hum dinger. Today is my visit with my neuro ophthalmologist. I'll let you know how it turns out.

Thanks so much for caring!


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## TraciJo67 (Mar 2, 2011)

Vick,

My sister-in-law struggled through some of the same diagnostic issues that you've disclosed. Initially, she was diagnosed with psuedotumor. However, in more recent years, she says that it's been reclassified as "Arnold-Chiari" (I had to look up the spelling). She has the same blinding headaches that you've discussed but some other nuerological symptoms as well. Overall she remains quite healthy, which is a good thing since she has 4 small children, owns a business, and homeschools (something I'm sure that you, Ms. Juggling Act, can relate to).

I hope that all remains well with you.


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## moore2me (Mar 2, 2011)

Dear Vickie,

I was sorry to read about your new health problems. One of the scariest things to face is the loss of healthy eyesight. This is especially crucial in medicine where there is so much to read and write such as reading bedside machines with dials or giving injections and measuring doses. Plus, if your goal includes continued education, you will indeed face an uphill battle.

Perhaps you will not face such future vision difficulties. However, consider - it is possible to continue your education with a handicap  yes even vision. There are many organizations and aids to help visually impaired students. Legal access to learning is now assured to visually handicapped students. With changes in the pace of your education, or the method of learning, or even the subject you major in  higher learning is still possible. You can set an example for others who keep fighting and continue to set a path for the rest to follow. Keep your education options open.


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## toni (Mar 2, 2011)

I am so sorry to hear about this, Vicki. *hugs*


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## Miss Vickie (Mar 2, 2011)

Thanks, all. Traci, I've heard of the Chiari malformation, and that was one of the differentials they were tossing around for me, but ended up ruling it out based on my angiogram, which was normal.

But I do have some good news to share. After dilating my eyes, the doc says I don't have papilledema, which is the hallmark of pseudotumor, and the sign that it's destroying one's vision. I probably still have it, based on my high opening lumbar puncture pressure (think of it like the pressure coming out of a hose when you poke it with a nail) but there is a subgroup of people who have high pressure, headaches, etc etc etc without having their vision affected. We're thinking the visual problems I had were from a migraine (which can absolutely happen).

He did, however, find the the beginnings of a cataract in my left eye. I thought I was too YOUNG to have a cataract. I was shocked! He said it can stay like this a long time, or get bad quickly, it just depends, but that I should avoid steroids if I can, and just do what I can to protect my eyes. He said that would explain the weird floaters and sparks I sometimes see. 

So overall, good news. I'm staying on the meds I'm on to get the headaches to abate, and they're somewhat better. I'm hoping to be able to continue with school since I seem to be improving a little bit, although occasionally I have a really bad day like yesterday and it makes me wonder.

Thanks for all your good thoughts, support and ideas.  Keep 'em coming.


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## it's only me (Mar 3, 2011)

vicki, i'm soooo glad things are getting better, maybe slower than u expect, but they are turning around thank god.

u posted earlier, that what lesson in your illness u was trying to figure out, believe me vicki, the lord works in mysterious ways, there's always a lesson to be learned from him. i can witness to that.

i had a very serious situation a few yrs back, god was sending me all kinds of signs but i ignored them, i was having problems with my stomach & bowel movements, like i said i ignored it, i felt there was a problem but i was too afraid to go to the doctors, afraid of what they would find.

so he god had to knock me off my feet to get my attention, i don't know whether it was a virus or food poision, i was down for a few days, i finally went to my dr & out of the blue i asked her to scheduld me to have a colonoscopy, she said NO, because your not 50, i was 43 at the time, i wouldn't back down so she finally agreed to schedule me an appointment the next week.

i had my exam no cancer, but he did find a polyp, & he removed it & of course, he said we'll exam it & we'll send u the results, he also put me on metamucil 3 times daily, cause girl i didn't eat NO vegetables, i mean none, i had a terrible diet, fast food, fried food, ate out all the time & like i said no veggies.

so the next week i got the results of the polyp, & guess what, it's was what the called a "low to moderate dysplasia polyp", i'm sure u understand what it means since your a nurse, it had cancer cells in it but it wasn't cancer YET, but it was just about to turn into cancer, & beleive me my heart dropped, that was it for me, i knew right then & there i had to change my diet & life style. i know it wasn't the polyp that was causing the problems, it was my crazy life style, not eating right & not eating vegetables.

and right to this day i don't go a day without eating my vegetables, everything except onions, celery, & bellpeppers, i just can't handle those(lol),i still faithfully take my fiber 3 times a day, & walk 4-6 days a week a mile & a half on my tredmill.
as i mentioned in another post(j-Hud) a few wks ago about the medical problems with my father & mother, heart diease & cancer, i should have known i had to be careful cause my father died of cancer, but i was walking around in life thinking i didn't have a care in the world (atleast i thought i didn't), not realizing i was walking around with a ticking time bomb inside of me, but like i said earlier he was giving me signs but i just didn't listen, one was to eat right & since i didn't listen he had to knock me off my feet, i've never in my life had food poison or a virus, i don't know what it was but if i hadn't got ill like that ,i never would have asked my dr to schedule that appointment.

when she read my results she had the nerve to say she just couldn't believe it, she just didn't understand, i just looked at her like she was crazy.

vicki MY lesson in my illness was to eat right & exercise, drop a few lbs, listen to my inner voice, pay attention to the signs, & never, never let a dr tell you no, if u feel something is wrong keep pushing or find another dr, the good thing about that is god blessed us with more than one(lol). i'm scheduled back in 2013 instead of 2012, for my 5 yr exam because he had me to come back the next yr for another exam.
but i encourage all of my african american sisters & brothers, not to wait till your 50, as a matter of fact they've pushed back the age for us, i've read in essence or ebony & i've heard them advertise on the radio start going at the age of 40 instead of 50 to have your colonoscopy, but i encourage anyone, whether your black, white, blue, green or purple to have one before 50 especially if you have a life style like i did. 

but i'm really happy things are turing around a little for u, but u just keep praying & you know i will, remember like i said the lord works in mysterious ways, nothing is a done deal until he says it is.


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## Miss Vickie (Mar 9, 2011)

Thanks, it's only me. I'm doing better, have been steadily improving, and feel like the meds/acupuncture/chiropractic/massage/physical therapy/being gentle with myself is working, finally. I'm using a LOT less Motrin, sleeping much better, although I do wake up with a headache every day. They get better fairly quickly, though, and as long as I take my meds, they continue to get better. So... yay.

Today I saw my neuro lady for a follow up and she was doing cartwheels, although she was concerned about my weight loss. *snort* Now I had WLS but I'm still a big girl, and one of the meds I'm on, Topamax, can cause lack of appetite and weight loss, a side effect I confess I have not experienced. So she said, "Be careful, I don't want you losing too much weight. You have to be sure to keep eating, to nourish yourself, to eat regularly. It's really important that you eat three meals a day and snacks, too!" She kept harping on that, and I said, "Oh don't worry. If I don't let weight loss surgery get in the way of eating, I can't imagine letting a medication affecting my appetite." It was cute, and I think the first time in my life I was encouraged to eat. 

I'm working with my university to stay in school, and they're being great about working with me and letting me finish the semester late. I feel super lucky. I'm having more good days than bad days, and I think I'm slowly improving, and getting used to some of the weirder side effects of the medications, which hopefully I won't be on forever.


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## Tad (Mar 10, 2011)

Glad things seem to be trending in the right direction!


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## knottyknicky (Mar 10, 2011)

Wait, you're on Topamax? How long have you been on it? Did you recently up your dose?

I only ask because I had a similar experience a few years ago...induced by topamax. I lost my eyesight, completely. I could still see light and blobs/shapes, but I was actually deemed legally blind because of the topamax. I had headaches as well, but the scarier symptom was the fact that in a matter of just a few hours, I went from perfect vision to legal blindness. I knew it was a potential side effect with Topamax, so I called the doctor who prescribed it. She laughed at me (I fired her) and I went to the ER. They couldn't figure out what was wrong, and also didn't believe me about the topamax, but my opthamologist did. I stopped the meds, he made me some glasses, and my vison (painfully) returned in about two weeks. That was the worst part...the eyesight coming back. I was extremely grateful to have it return as I'd been warned I may have permenantly damaged my eyes, but when it came back my eyes hurt so bad. It was some kind of glaucoma, and fortunately living in California, I had some (legal) relief, which helped IMMENSELY. But it was a scary, scary, scary experience. It sounds like theres a lot more going on here than that, but its worth ruling out if you hadn't considered that. I did fine on Topamax until it was time to raise my dose.


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## Miss Vickie (Mar 10, 2011)

I just started on the Topamax, and the headaches and blindness came first. But it's a good thing to keep in mind, if it happens again! My neuro NP has me going up slllooowwwwly, so that I have a reduced chance of having side effects. So far, so good (fingers, toes, eyes crossed). I'm sorry to hear what you went through -- YIKES!


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## it's only me (Mar 12, 2011)

vicki, i'm really glad to hear your getting better.


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## Miss Vickie (Apr 8, 2011)

knottyknicky said:


> Wait, you're on Topamax? How long have you been on it? Did you recently up your dose?
> 
> I only ask because I had a similar experience a few years ago...induced by topamax. I lost my eyesight, completely. I could still see light and blobs/shapes, but I was actually deemed legally blind because of the topamax. I had headaches as well, but the scarier symptom was the fact that in a matter of just a few hours, I went from perfect vision to legal blindness. I knew it was a potential side effect with Topamax, so I called the doctor who prescribed it. She laughed at me (I fired her) and I went to the ER. They couldn't figure out what was wrong, and also didn't believe me about the topamax, but my opthamologist did. I stopped the meds, he made me some glasses, and my vison (painfully) returned in about two weeks. That was the worst part...the eyesight coming back. I was extremely grateful to have it return as I'd been warned I may have permenantly damaged my eyes, but when it came back my eyes hurt so bad. It was some kind of glaucoma, and fortunately living in California, I had some (legal) relief, which helped IMMENSELY. But it was a scary, scary, scary experience. It sounds like theres a lot more going on here than that, but its worth ruling out if you hadn't considered that. I did fine on Topamax until it was time to raise my dose.



Knotty, well I'm off the Topamax but not because of my eyesight (which is okay except for floaters). That was an experiment gone horribly wrong. After a week on it, I went up from 25 to 50 mg and did okay for five days until I got lost getting home. Yes, you heard me right. I "got lost" in a town I've lived for 13 years, taking a route I take at least a couple times a week. I felt unsafe to drive, couldn't judge how to pull out into traffic. It was scary. My provider warned me that I might have confusion, and I called her and immediately started tapering down. Holy crap. Even at just 25 mg I was confused, and felt the bottom drop out of my intellect which is not cool when you're a nurse and in graduate school. 

So yeah, that's some rough stuff.


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## knottyknicky (Apr 17, 2011)

Miss Vickie said:


> Knotty, well I'm off the Topamax but not because of my eyesight (which is okay except for floaters). That was an experiment gone horribly wrong. After a week on it, I went up from 25 to 50 mg and did okay for five days until I got lost getting home. Yes, you heard me right. I "got lost" in a town I've lived for 13 years, taking a route I take at least a couple times a week. I felt unsafe to drive, couldn't judge how to pull out into traffic. It was scary. My provider warned me that I might have confusion, and I called her and immediately started tapering down. Holy crap. Even at just 25 mg I was confused, and felt the bottom drop out of my intellect which is not cool when you're a nurse and in graduate school.
> 
> So yeah, that's some rough stuff.



I read SO many stories like that when I was prescribed it. I was afraid to take it for almost a week because of that, then figured I'd go for it. Turned out I felt great, until I went blind. I know another woman who took it with NO side effects (except weight loss, which was intended). She didn't even have the weird soda/carbonated beverage thing. She lost like 150 lbs and hasnt gained it back. Its still scary to me that this stuff is as heavy as it is (and as risky) and is passed out as a drug for weight loss along with epilepsy/mood stabilizing/migraines. Insane stuff.


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