Topamax and migraines

I have been taking topamax for five months now. My friends and family have been so worried about me that they have accused me of doing hard drugs. I thought that some of the side effects I was experiencing were from stress in my life. I am a 26 year old girl who has battled migraines since puberty. Now I have about half my hair left, acne like you have never seen before, ( I have never ever had acne in my life!), depression, high levels of anxiety, and my vocabulary has shortened to that of a 6th graders. I have always been a thin girl, usually around 125 and I am 5'8. At this point, you can count every bone in my body, see every vein. it's pretty discussing. I am going to wean of 25 milligrams a week, and deal with my migraines in a different way, so that I can become the person I once was.

I am a 21 year old female and have been on Topamax since October of 2006. I am up to taking 250mgs a day having a constant headache and getting a migraine about every week. I have had such a range of side effects and symptoms that I can't tell the difference nor know where to begin. The most recent is muscle spasms in my eye lid and leg that won't go away. I have spasms infrequently all over, but these have been pretty constant. I also tire very easily though I always get 8 hours of sleep a night. Though those are not always 8 full hours of sleep, because I do have boughts of insomnia. I have also dealt with the intestinal problems to the point of thinking that I had appendicitis. I have had multiple trips to the hospital for abdominal pain and severe migraines. I have had the vision problems - blurred, dizziness, vertigo, and the weird one were my eyes jerk back and forth. I rarely have all at once and they have come and gone throughout the 2 years, but they have come back

I think the most mysterious one of all are the lypomahs - these little painful nodules under the skin that just appeared. They are mostly on my abdomen, but have found them on my chest as well. Any one else heard of this?

Nov 5 2008
I have been taking topamax since april of 2008, about 6 months now. Just recently I was increased from 50mg to 75mg for my migraines. I have short term memory loss, nausea, no appetite at all, shortness of breath, trouble sleeping, and all of a sudden terrible anxiety and panic attacks which started out of no where. I feel like my heart is beating out of my chest and I am going to die. It is horrible I cant stand it. I went to the ER and got the standard tests and they said my heart was fine and to follow up with my regular Doctor. No matter what I do I cant calm my self down it is just aweful. I am not sure I can live with these side effects, its too muc

Hi all...I've been taking 25mg. of Topamax at night for 5 days now. Unlike most of you I have not experienced the tingling in the extremities or the weird taste in the mouth or even much tiredness at all other than what has happened as a result of my weird side effect. I was prescribed Topamax by my neurologist for my migraines. I've had them since I was 12 years old. I'm 49 years old. The got worse during peri-menopause which is kinda normal given the hormonal fluctuations, but was told by my neurologist that they would very likely subside significantly when I became menopausal. Well folks, I've been menopausal for 5 years and for the past 2 years my migraines have been the most horrific of my life. I have approx. 15 to 18 migraine days a month, some of the headaches lasting 3 bloody days. So it comes to this...Topamax. In the past I have suffered some pretty rare side effects from some very benign medications so I guess I shouldn't really be surprised that this is happening to me now. The first night I took it I slept like a baby. The second night I was slightly 'hyper' but managed to get to sleep. But for the past 3 nights it's been hell. When I lie down in bed, my body feels as though there are electric currents shooting through it and coming out my right leg. I have to move my right leg or go completely bonkers. Fortunately my daughter is away at university and so I can sleep in her room. So I lie there...on my left side...with my right leg hanging over the side of the bed swinging and swinging and swinging as hard as I can just so that I don't scream. It's awful. Last night was the worst. I saw dawn this morning. I just got off the phone with my pharmacist and he told me that I had described a classic case of RLS - Restless Leg Syndrome. And guess what? Topamax is used to trest RLS!! For bleep's sake! So nice people I am suffering a completely opposite side effect to the one that seems to be the most common one...tiredness. Has anyone else heard of this? Experienced this? It seems to all focus down to my right hip and leg. I have to move it vigourously or go nuts. I am so tired today but that's because I got like 3 hours sleep. I fell asleep from sheer exhaustion after my husband left for work at 7:30am.
A side note...I also take 75mg of Effexor for panic disorder and my neurologist told me that this is a very good mix of meds for migraine prevention. My top dosage for the Topamax will be 75mg taken at night.
I'd really appreciate any feedback on my side effect. Thanks in advance.

D.

I'm a 24 year old female, the doctor put me on topamax about a year ago for my migraines, since they stopped making midrin. It made me sleepy beyond anything. Food and drinks started to taste odd, I stopped taking when I lost insurance because it was $170.00 a month. I had been wondering if I should take it again and now after reading this stuff, I am not going to be doing so, while the weight loss would be nice, I don't need to lose my memory at 24 when I have a 3 year old son to worry about, thanks to call that have posted. :D

I've been on Topamax for 3 years for migraine and it works most of the time. I am currently having a hard time with the usual side effects of memory loss, hair loss, word recall problems, coldness, depression, no sex drive, and am developing a cough. BUT I had a side effect that has not been mentioned when I first started taking it (25 mg in am and pm -- I'm now on 50mg in am and pm).
For about 2 weeks, I would get in my car to go to work and miss my turns because they would cognitively come up too soon (this is after 15 years of going to work the same way everyday). I had to be extremely conscious of my surroundings when I drove or I'd miss all my normal turns. I got lost in my own neighborhood once going home. At work, I'd get up from my desk to go to a co-worker's desk and arrive there amazing fast to my mind. I was experiencing time/space/distance distortion. It became fascinating to me, but it passed.

I was on Topamax for about a year. I lost 50 Ibs because, I did not have an appetite. I decided to go off of it. Then I started to gain weight back and wanted to go back on it but, I had terrible itching and every time I got sweaty or in the sun I would start to itch. Now it has been about 9 months that I have been off of it. I have problems with migraines and I also would like to try it to help lose weight but, I am trying to weigh the risks because I don't want that itching problem to start back. Oh yeah...I did not have many problems with memory loss or anything. I liked how I could think everything out more slowly. Basically...I felt like I could concentrate better on stuff and not have racing thoughts. So that was a plus for me. Also had tingling in my toes for about the first 5 or 6 months on it.

This is my second time to use Topamax and I am having a different side affect now. I am getting very hot and breaking out in cold chills at the same time. The top of my head was so hot yesterday I had to wet it before I came to work. Has anyone been having problems like this? It says decreased sweating but mine is the opposite.I have the increased body temp. I thinkl.

Topamax makes things taste yucky!! things like soda, beer, etc. And I've typed a whole report before or listed something on ebay and only looked back later and called myself a STUPIDAS# because of all the misspelled words- should of used spell check- which if you take Topamax make sure your spellcheck is on! Don't know why but the med will slurr your speech and brain. I do still get the occasional migraines while taking it so I'll stop it, plus tired of the spelling probs I have while on it. But my doc says I should be persistent with it, just like everything else out there... there's always a price to pay! Other than that, no side effects like stomach pain or weight loss like I've heard in others. Oh but it will make you tired..especially at first..very tired!

I was started on Topamax late 2007 after a week long migraine that did not respond to my usual migraine medication, Relpax 40mg and Xanax 1mg and I needed the second dose 2 hours later. I was given samples of Topamax 25 mg with a schedule to slowly increase the dose. The first 3 days I noticed an improvement in my migraine. By the 4th day, I started coughing. As I increased the dosage of Topamax, my coughing got worse and more frequently. I had to return to the doctor a week later for the cough. I thought I had been exposed to bronchitis because I had worked in the church nursery.
However, the doctor heard a wheeze with my cough and stated I had asthma. This came as quite a surprise because I have never had any lung problems or asthma problems and I am 52 years old. I was referred to a pulmonologist who put me on 2 inhalers (one steroid, one rescue inhaler, nebulizer treatments, chest x-ray, Oxygen to be used a night.
I was still having severe coughing spells every time I moved or tried to talk. I would have to run to the bathroom every time I started to cough because the coughing was so violent that I experienced severe urinary incontinence every time I coughed. I checked the internet and with my pharmacist, both stated that developing a cough was very common with Topamax. After learning this, I slowly reduced the Topamax until I could stop using it. As I was reducing the Topamax, my cough started to decrease. When I mentioned to my doctor about my problems with Topamax, he stated that Topamax did not have any respiratory side effects. I had a brochure from his office for Topamax that stated Topamax should be used with caution with people with lung or asthma problems.
I am now taking 800mg of Magnesium, CoEnzyme 100mg, and Vitamin B 2 100mg twice a day as a preventative. These supplements were prescribed by my neurologist. Since starting these supplements, my number of migraines has decreased.
Kay/redpoppies

I was on topamax for about 2 years. I took it for frequent migraines caused by my sinus's. I had all the normal side affects but got used to it after awhile. The only one i didn't get used to was the hair loss. During this time I started allergy injections and now i'm up to my maintenance level. So i decided to ween myself slowly off the topamax. I have been off for about 2 months now and I have been fine on the headache side, but i have started to get other symptoms (i think withdrawal symptoms). They have progressively gotten higher in number as the days go by. First my hair loss has not stopped. I gained about 10-15lbs, I am edgy and climbing the walls all day. I have a really hard time relaxing. I recently developed horrible insomnia, and about a week ago i started having digestive problems including water retention, bloating, gas, irregular bowl movements, and acid reflux. And I've recently had bouts of tightness in my chest and throat which make it difficult to breath (lasts about an hour). I didn't have any of these symptoms while i was on the topamax (except the hair loss), nor did I have them before it.
I am seeing an endocrinologist in a few weeks to make sure nothing on that front is causing any of this, but i really feel it's from taking and going off the topamax. If you can find other ways to deal with your migraines, DO!

I have been on Topamax for about a month now and going to give it a couple more to see if it is the med for me. I use it for migraines. I usually get at least 6 migraines a month - this month I got 4 and only one was really bad. I am very disappointed that beer no longer tastes good and am hoping that if this med does work to reduce or stop my migraines that my taste sense for at least beer will return. Also, I had an odd experience last night - I had 1 1/2 Mai Tai's last night - both of my arms went totally numb/tingly - not just my hands and not just a little tingly - totally scary numb/tingly to the point of considering an ER visit but I assumed the alcohol in the drink just exacerbated the side effect. I may become a non drinker if this med actually works. Guess you have to take the good with the bad! The cognitive stuff---that only lasted the first couple weeks thanks goodness for me. Not giving up yet!

I started right out 3 years ago on 100 mgs. and within a couple weeks migraines were virtually gone! I thought it was a miracle! Only slight side affects for a couple years and only an occasional migraine but not a three day long one. So, I figure, small price to pay for all that relief, right? Now, for the last 6 months or so I'm falling apart! My memory is just gone! Sometimes I'm afraid to leave my house because I'm afraid I'll forget my way back home! I can hardly concentrate long enough to put a meal together and it just took me 4 tries to remember how to spell concentrate! Thank Goodness for spellcheck! I've lost 42 lbs. that I can ill afford to lose and I now I have started to have these anxiety things that I've never had before. I feel scared and nervous and no idea why. I was on a couple of drugs for allergies, a couple for arthritis and a vitamin. I dropped everything except the Topamax and the DR. put me on a 1/2 mg. Zanax twice daily for anxiety which seems to do nothing except make me sleepy. Now it seems all these side affects have just bloomed and I have this constant ache over my right eye which isn't a migraine but never goes away. I'm afraid to just stop the topamax because of what I've read about suddenly stopping. Doctors are no help, they won't even admit there is a problem. They just wanted to check my thyroid.It was fine.

well, i guess i am not alone. this is the second time i have been on it. i weighed the pros and cons and figured that the migraines were worse than the depression, mood swings, and the inability to compute simple math. well, i feel differently now, and i think i am going back off of it again. my sex drive is also gone, but i have had a problem with that and the depression for years, just not this bad. i feel i have yelled at my children way too much lately, cuz it is making me so crabby, and i don't think that it is worth it. after reading some of your posts, it has helped me make the decision to go off of topomax for good. i could deal with tingling, bad taste, and weight loss (the only good side effect), but not the other horrible effects.

I've been on Topamax for a year and a half now. I started with 50 mg. and am now up to 100 mg. I did have the usual side effects of the tingly fingers, feet and arms the first six weeks and then that went away. Food and soft drinks tasted funny for a while, but that too went back to normal. I did lose 15 pounds and I didn't really have it to lose in the first place, so I upped my workouts with weights to compensate. My migraines have gone from five a week to one, so it's helped me BIG time being on this medication. My eyesight, however, has suffered. I used to have 20/20 vision. I now need reading glasses. I'm sure it's because of this medication, but to be honest, I'll take the glasses over being in that severe pain five times a week.

I am almost 41, and have had migraine headaches most of my life which I could manage with 800mg of Naproxen Sodium, or a Norgesic Forte, and when Imitrex came out, I could just administer that. Six months ago, my headaches got so frequent that I had to start taking my Relpax (similar to Imitrex) and/or Fioricet more than 2X per week. According to my neurologist, this is a no no, as both of those meds can couse rebound headaches. He started me on Topamax, 50mg per day. It did nothing. He bumped it to a 100, nothing. Now I'm a 200 mgs, I am still have a migraine in left temple as I write this. I have the tingling, the daytime sleepiness, but my mind is fine, and my appetite is just swell (regretfully). What the hell am I going to do now? Ask him to bump me up to 400 mg? Now I have these headaches every "F"ing day, and I can't take anything. I just have to suffer.

Topamax is NOT working!!!!!

I have been on Topamax for 2 months and it has been horrible. I started at 25mg at bedtime and worked up to 50mg at night and 25 in the morning. I wish I never took it at all. I have had numerous migraines with the medication except now my tongue goes numb every time. I can't remember anything and I am in a fog all the time. I had to take a trip to the emergency room for tachycardia that occurs every time I stand. It goes up from normal to 166bpm. The cardiologist insists the Topamax is causing orhtostatic hypotension. I stopped all of the Topamax on Monday and it is now Saturday and I still feel horrible. Migraines are horrible but being stuck on your couch all the time because your hr increases sharply and you feel like you are going to pass out is worse. My hands and feet tingle all the time. I feel out of breath and I have always been very active. I now feel anxious all the time (never like this before). I feel like I am not myself and I am going crazy. I do not trust myself because I do not feel like myself. Has anyone else had these symptoms? Do they eventually go away? The cardiologist can't guarantee that they will ever go away.

I have been taking 25 mg. at bedtime of topamax for the last week. I was prescribed topamax to end my chronic headaches. The last week has been very difficult for me. In just 7 days I have gone from being sharp, aware, motivated, focused and in control... to scattered, unable to focus, can't remember my pin # that I have had for 20 years, stop mid sentence because I can't remember what I was trying to say, unable to hold a conversation, unable to think clearly, unable to interact with my children. My family says I have turned into a zombie. I am not safe to drive and cannot work. I did not take my topamax last night and won't be taking it anymore. I would gladly have my headaches back if I could just feel like myself again. I had no idea it would affect me so negatively in just one week on such a low dose. (25 mg)

Be so careful before taking this medicine. My doctor didn't discuss any of these side effects with me, but I did research the drug online before I took it and was aware there were serious side effects, but it never seems that serious until you actually endure the side effects for yourself. The drug is not for me.

oh my God I wish I had read this sooner I thought I was going crazy! it seems like the doctors just don't know about the side effects of a lot of these drugs, because I have had ALL of those symptoms- the tingling, the muscle pain, the aches, the feeling of bugs crawling, the itching, the one I have the most now is pain in my arms and legs now to the point where today I cannot lift my arms past the front of my chest or over my head. So I barely stand the shower and barely get ready for work. When I told my doctor this last week, he said, hmmm, I don't know, lets just give it a few more weeks and see. I've been on Topomax for 5 weeks. I started at 25 mgs and worked my way up to 100 mgs slowly. Each time I add more mgs I have more EXTREME fatigue, and spaciness, dizziness, etc. My legs and arm and back pain did not start until the past 2 weeks. THIS SUCKS. But having migraines sucks too. I have lost weight. But I just don't know that I can live like this. The migraines are new for me, as a result of an accident I was in on January 26th. The side effects of the Topamax outweigh the pain from my accident. I might have reconsider taking this. Although I must say, this drug is the kind of medicine that definitely takes a while to understand how it will work for you. A lot of the effects will wear off. A lot of my spaciness or "Paula Abdul" moments as I like to call them, are getting so much better. I'm sitting at 100 mgs and really don't want to raise the dosage at all. I will talk to the doctor and see what he says. That's the other thing... doctors tend to give people too much or dont know how much to prescribe. Starting people off at 50 mg is too much. I take mine around dinner time as it tends to kick in around sleepy time and if I increase I ALWAYS increase on a Friday so I can regulate over the weekend. PS. I also have blood clots in my legs so being on Coumadin doesn't help things either!
GOOD TIMES!
I'm just so glad I'm not alone!!!
Caroline

Hello, I started taking Topamax a year and a half ago for my migraines ( I was getting them almost daily- still am). My neurologist started me out at the normal dose of 25 mg a day and kept raising it up until I was at 100mg twice a day at which point I just quit taking it because I felt like it was just making things worse. Anyway, in the beginning, I did lose my appetite and things tasted terrible... especially carbonated beverages. I lost probably 15lbs. I quit taking the topamax for about 6 months and gained about 20lbs. I just started taking it again about 2 weeks ago and my appetite has actually increased. Has anyone else experienced this? I am hungry all of the time. I did not have a problem concentrating or remembering things last time but this time I do. Funny how it effects you differently each time you take it...

After daily pounding migraines for ten months, the side effects of the tingling fingers, tongue, lips and toes; the inability to find words, the weird way certain foods taste, are all very do-able. What does worry me is the way I can get incredibly depressed, but the anti-depressant (Wellbutrin) I've been taking for more than ten years just suddenly started making me worse. I just keep telling myself that at least I don't have a headache. It definitely makes it worth it. The headaches were so bad, and thanks to the topamax, they're gone.

I took Topamax for my migraines following a significant car accident. All I can say is this medication didn't help me at all. In fact, it made my migraines 10x WORSE! Before, when I had a migraine, they were debilitating and would last up to 48 hours. Once I was on Topamax I had a migraine that would not go away. It was almost a month of me being out of work so that I could be weened off this medication and feel better. Now I take something called Axert which you take at the first sign of a migraine. It is my miracle drug. It is not a narcotic like every other doctor seemed to want to give me and would make my migraine go away within an hour. However, I have noticed I have built up a little bit of a resistance to it!

I posted above, but forgot to add....I feel like I just got off a plane, and it was a 16 hour flight. My ears. I hope no one has lost their hearing on this med because if this is the case then I seriously need to go off of it. I do feel a bit confused, too. I take it for migraines but I kind of make a fool of myself at PMS time, getting all irritable and stuff, and I do feel like it is helping me control my mood better at this time. It sure helps the migraines. I have pins and needles in my hands, too. Depression, too, it was worse at first, better now.

I was wondering if topomax causes high blood pressure? Also I'm on 350 mg a day plus 1600 mg of tegretol a day . I was wondering if any one was on such a high dose?

I am a 39 year old man with peripheral neuropathy and migraines. When I was diagnosed 3 years ago, the pain in my right leg was horrible and headaches daily. My Dr. put me on Topamax and I was so happy, it seemed to help but one night( about three weeks into it) I went to bed and awoke in the morning legally blind. Topamax was stopped that day but it took 4 months ( and changing the prescription in my glasses 3 times) for my vision to return to 20/20. The doctors tell me I was lucky as some people have perminate lens damage from the optical pressure change.
My doctor said I could not take any thing in that class of medications as it would probably have the same effect on me. So he decided to put me on Cymbalta for the neuropathy. He said it was being tested as a possible use for neuropathy but had not been proven. It works great for the pain and oddly my migraines have gone down to about two a month.

I've been on Topamax for a few months now........this is the second time. The first time was in 2002-2004. I was up to 400mg for migraines & depression. It was supposed to do double duty. Well, I was stupid, to put it briefly. I couldn't remember anything. I would stop mid sentence because I couldn't think of the word I wanted to use. I lost a lot of weight, too much. I had needed to lose a little....baby weight. But I looked anorexic. So out to buy a new wardrobe. $$$ I lost a ton of hair!!!! So off it I went. The weight came back very fast....too fast I think. My friend says the same thing of her experience. THIS time I'm on 250mg.....no more than that, as per me. I was stupid for a little while, but it seems to have gone away for the most part. My hair is still falling out, so not much longer on this one for me. The reason I went back on it was for the weight loss ( and it does help the migraines). I was on some migraine meds that made me gain 40lbs over a 2 yr period(Abilify,Cymbalta). NOTHING could get off the weight. Not exercise, not diet. I've lost 21 so far, but my progress has slowed because of Wellbutrin...it makes me crave sweets. And my willpower is nil. lol So off the Wellbutrin I go. I also learned my nastiness could be from Topamax. I snap at the kids. Who knows which drug it's from! I also take Singulair. That's a story in itself. That one's gonna go too.

I started Topamax in November of 2007 the usual 25mg and worked my way up to 150mg. I have always had pretty thick hair and now have hair loss in the widows peak and top part of my hair. Needless to say I am devastated. I have cut myself down to 50mg in the am and 50 mg in the pm. My Neurologist states that she has not heard of hair loss but even this web site and the drug company states that it can cause hair loss. I have with the help of a very good massage therapist determined that my migraines are cervical so I am seeking a second opinion and taking myself off this drug. Not worth the hair loss if I don't need to be on this drug.

My doctor put me on topamax for daily chronic headaches. I worked my way up to 200mg and had all the symptoms, tingling in my hands and toes, short term memory loss, hard time putting sentences together, etc. I backed myself down to 100mg. and the side effects lessoned up significantly. I stayed on 100mg for almost a year (lost 10 lbs.) One day I decided that I was going to ween myself off and started going down 25mg every week until I stopped altogether. Since I have stopped, I do get headaches, usually 1 or 2 per week, nothing like when I started out on the topamax. I have gained 20lbs since stopping the topamax but no longer have a memory problem or putting together a complete sentence. In my opinion, you should try to take the lowest dose possible that gives you the greatest relieve from your pain.

I have been taking Topamax, 25 mg. for one week. Today was the first day I took 2. My doctor prescribed it for migraines, which I was having several times a month. The past few times I thought I was having a heart attack! I read about the side effects before I began the medicine so I have been waiting on everything to begin. So far the only thing I have noticed is I have a weird sensation in my mouth and sometimes in my throat. The only way I can describe it is if I have been breathing something caustic, such as smog or smoke, or a lot of dust. One thing I am going to try is a mouthwash called Biotene or Biotene. It is for dry mouth. Maybe it will help. Has anyone else experienced this and/or tried Biotene?
I read with interest what everyone has written. I drink soda all day and will be integrating more water because of one of the posts. So far though, my cokes taste the same. Is it only Dr. Pepper that tastes differently? I have also been getting winded easily and thought it was just me. The one side effect I am READY for is the weight loss. I gained 20 pounds in a year after I quit smoking. Anything to help with that is welcome.
So far though I have not had any migraines and I always have one with PMS. No increased anxiety but I have been on Zoloft for several years for depression. Maybe the Zoloft will offset the Topamax in that respect. I can be somewhat scatterbrained at times and as an assistant principal, I have to stay focused all day. Now that it is summer I will be able to relax a bit and it's ok if I am more absent minded than usual. Except that I have to work on a research project. But hey, does anyone really read that stuff??
Thanks everyone for sharing and I will check back in if anything changes. I am curious to see how things will go.

I am approaching 8 mos on Topamax. I take it for Epilepsy vice Migraines so my situation is less discretionary. Caffine is a definate no-no on Topamax, it makes you feel confused and crappy immediately after you drink / ingest it. That is the first lesson I learned. Drink plenty of water, that helps your kidneys work through the medicine. I take 75 mg in the morning around 7:30 and my heavy med time is around 11:30 (lunchtime) and then 50 mg at night so I am asleep during my evening heavy med time. Topamax is a miracle and has kept me seizure free for 8 mos. Side effects are light, I just plan accordingly. I would never take Topamax if I did not have to. I just take plenty of notes to overcome my high med times / confusion and seem to be doing pretty well. The big one is CUT OUT CAFFINE. Man, caffine will make you feel really bad.

Currently on and will be calling the doctor tomorrow to stop after reading everything tonight. I have the migraines still, I have the tingles in all the weird places, everything taste like pooh, which is wonderful, seeing that I myself am overweight and do need to lose the weight. I am not through my 1st full script,but up to my 100mg per day(50 in the morning and 50 at night). I have lost those first 20lbs. and Wow, how nasty those DP's taste now! I was up to 4 Zomig per day before the doc put me on Top and he thought it would help with the weight loss too, but the depression is uncontrollable. Can't sleep at all even while taking sleeping meds and very tired. Everything hurts.

I took Topamax for 6 months. I am a control freak by nature and really liked the drug at the start when I took 25 mg.; however, like most people who take Topamax know, you increase the dosage until you get to 100 mg. By the time I got to 75 mg. I was a basket case. I did lose weight and I was really calm; however, I thought I had Alzheimer's. My short term memory was shot and was slowly effecting my long term memory. I was constantly at a loss for words and stuttering all the time. For someone like me who is extreme control freak this was very debilitating. I also had constant tingling on my nose (I know weird) and my fingers. My husband begged me to stop taking Topamax because he could see the difference in me. Like everyone else my Migraines completely went away and so I thought the benefits outweighed the side effects.. The doctor said that maybe 75 mg. was to high so he put me back to 50 mg. It didn't change. Finally after 6 months I was almost a vegetable. I stopped talking which is extremely unusual for me. I stopped hanging around my friends and family and wouldn't deal with my kids. My daughter finally came up to me and said I don't know who you are, but I want my mommy back. That was all I needed. I weened myself off and within 2 months was back to normal. Unfortunately, my migraines came back full force 4 days a week. The good news is that about a year later I was having a physical and the doctor said that my thyroid was off and needed to start taking Synthroid. I have to say I couldn't believe it, but ever since I started taking Synthroid my migraines have completely gone away. From having them 4 days a week to maybe have 1 or 2 a year since being on Synthroid. I have been basically Migraine free for almost 2 years. I highly recommend that people, especially women, talk to their doctor to see if their thyroid could possibly be causing migraines. I have had migraines since I was in college 20 years ago.

One thing I do have to say is that the company that manuf. Topamax listed all the side effects. It did say that Topamax could possibly cause Neuropathy, loss of memory, weight loss, etc... It also stated that the symptoms should disappear after 6 weeks; however, it some cases they didn't. I respect that they were honest with their research and were very clear in the side-effects. I have many friends who use Topamax and thank g-d for it everyday. They had no side effects from the drug and have been living happy lives.

I started taking Topamax 3 weeks ago. My Neurologist started me on the 25mg dose and gradually moved me up to the 75mg dose. I've had several different side effects. I don't like this medication at all. I want to stop it but I'm afraid because all the web sites say when you stop it you can have seizure's. I have suffered the last 3 years with everyday headache's and would do anything to have relief but cant stand the way this medicine is making me feel. I have felt nausea's for day's. My 3year old has ate more than me. I cry over anything. I'm tired! I've had a headache everyday while on the med's. I have a nasty taste in my mouth. My vision is impaired. I definitely will not stay on this medicine. I would rather deal with my Migraines, then to deal with Migraines and side effects!!!

I began Topamax in August after 6 months of ongoing severe migraines. They stopped immediately. My DR had warned me of weight loss but I thought who cares? I weighed 130 at the time. I have had a fatigue problem for years so I really can't attribute that to Topamax. I did become very sick (exhaustion-couldn't get out of bed) after Christmas and had my DR take my ANA which was 1280 (high). I have also experienced hair loss but I did not find that on the "side effects". I called the hot line to see if there were other reports of affected the ANA count and they had no data on this. Has anyone else had this experience? Meanwhile, it is 8 months later, I am down to 96 lbs and worried, have lost all fat & muscle - no migraines!

I've been taking Topamax for a couple of months now to help with my lifelong (I'm 47) migraines. I had been taking at least 10 Axerts each month, using Amyltriptyline about twice a month, and had completed one lifetime's supply of Aleve (my belly revolted so it's only Tylenol for me from now on). I'm on 100mg and have very mild tingling, which I tell myself is a message that I don't have a migraine (hooray!). For me, this is a wonder drug - it nearly completely prevents my suffering. The problem is that I have absolutely raging diarrhea. I've spent weeks on the BRATTY diet & using probiotics to no avail so I've begun dropping my dosage to 75 mg to see if that helps. I would do nearly anything to continue taking Topamax.

Interestingly, I had more fuzzy brain problems taking excess Axert & Amiylriptyline than I do now on Topamax. I feel much less like I have ADD now. Amazing how differently meds affect different people.

I have been on Topamax for 4 months and so far the migraines I have suffered for 40 years are gone. Great Some side effects like can't stand carbonated drinks. Reaction time is a little slower. I stress out a little more then I used to. I get really tired at the end of the day. I used to be a night owl but now love my sleep. Question to you all. Any one had problems with their teeth? Such as pain, fillings falling out? Let me know.

I have been on Topamax for several years now for crippling migraines. I now take 125 mg at bedtime. I once tried to take myself off of it but, the headaches came back worse than ever So... I went back on. some say that it works because migraines are like a type of seizure. I sure don't know but I'll do anything not to have them like I used to. Recently at night my arms and legs get numb; sometimes one side sometimes both sometimes all I feel is my trunk. It is really scary, but more scary for me is the headaches with the intense nausea that accompanies them. You just can't function. Lately I also feel very tired too! Every one tells me it is just stress from work and "perimenopause" (just what I need more hormonal fluctuation to cause headaches) I really wonder if all this increased fatigue could also be the Topamax ... I mean I could easily sleep 11 hours per night if you let me! Has this happened to anyone? Did perimenopause complicate your treatment?

I have been back on 125mg of Top for about 9 months now. I tried it for 1 year prior to this with too many side effect. I have taken it for migraines and an eating disorder. Instead of helping this time around I believe it triggered emotional issues, panic attacks, nerve damage in the occipital region of the left side of my brain (more than what seemed to already be causing headaches from the start), I relapsed with my eating disorder and lost too much weight, and had something called psychosis. Psychosis is a disordered thought pattern seen in many different mental illnesses or those in a confused state of mind. When I'd look at a stop like I would not be able to determine in my mind whether it was red or green and I would just go through it. I felt like I was going into some sort of coma all the time as well. Now that I am on an eating plan and exercising a bit less the side effects are a little less but the doctors are looking for an alternative at this time. I have tried every med out there.

Been taking Topamax 300 mg a day for the past 4 year. I also take 450 mg of Wellbutrin. This is to help with migraine. Although my total count of Zomig pills I took last year was 120 pills and some of those I broke in half so I wouldn't have to use a whole pill for a migraine. So that mean, with the Topamax and Wellbutrin combined, I still had at least 123 migraine this past year. Three months of migraines. That's insane. I can't stop the "Dopamax" because my doctor says it would be really bad with it. I have terrible memory loss, forgetfulness, and loss of words that is embarrassing. The nurses did not inform me of the side effects when I first started taking it and I thought I was going crazy. I started looking up ADHD on the computer thinking I had developed it as an adult. I was made at the nurse when she asked me how I was doing remembering things and and if I was stumbling for word......I wanted to slap her off her stool.........at that point it was NOT funny.

Has anyone experienced hypersomnia with Topamax? My son just started taking it a couple of weeks ago and now I can't wake him up in the mornings. Not just tired... but literally unwakeable. Then he has sleep drunkenness once he eventually wakes up in the middle of the morning. I have taken him off it to see what happens.

I've been on Topamax since Sept 2007 and the only side effects I have had were at the beginning were the tingling in the hands and feet when I was brining my dosage up. Soda tastes awful but I no longer drink it and that is a godsend after being a heavy drinker of it for years. I do find there are time when I can't find the right word to say, or I forget what I was doing, but I deal with it. I have lost 20 pounds since being on the medication. After being on it for 6 months the tingling is gone, I usually counteracted it by drinking plenty of water in the morning, that got rid of it. The drug has taken away the migraines, and regular headaches I have suffered from for years. It has also stabilized my moods and taken away my anxiety issues. I'm 36 and have never felt better. Topamax is definitely not for everyone. For those that are suffering, please do contact your doctors and try to get off the medication.

I take 200mg a day (100mg in the morning and 100mg at night) for seizures. It has been my miracle drug. Granted the side effects were awful. But I did my research before starting it again. I had taken it previously for migraines and couldn't tolerate it. If you take the appropriate vitamins while taking it you can help to alleviate a lot of the side effects that you may have. Topomax can absorb some critical vitamins out of your body which causes some of the side effects. The vitamins that I take are: a high dosage of a Super B Complex (tingling, numbness, fatigue, speech). L-Carnitine (memory loss), Biotin (hair and skin). There is another website with postings similar to this which is where I discovered other patients taking Topomax that had discovered using the vitamins helped. Once I got on a good regimen of vitamins it made a big difference. I still experienced and am experiencing weight loss (but I just had a baby) so I am not really upset about that. LOL Anyways, I hope that information helps someone out there. It sure did help me. If I can find the research link that had the vitamin listing that it depreciates I will post it.

I have been on Topamax for a year. I am on a low dose of 25mgs morning and night for Migraine prevention (instead of the Verapamil I had been taking for years). I am pleased with the results. No migraines. I do not drink soda any more due to the after taste but thats fine. I think I am a little more "hazy" in my thought process but not to an extent of it interfering with my life. I will see how I continue.

I am a 35 year old female.I have been taking Topamax 100mg for over a year now, I went from weighing 155 down to 125 and my migraines have decreased a lot.I still get some but I will take a Maxalt as back-up and it takes it right away. I do believe I have become a bit crabbier though as people have told me that I'm not as fun as I used to be-more moody, but I'm not sure that may just be me-stress and all.Even if it was a side effect I don't think I would trade it back for the migraines EVER!! My memory is shot too- Ugh!

2 yrs ago I was diagnosed with peripheral neuropathy. I have been on Topamax since, because of the severe pain it causes. I have never experienced weight loss and I was on up to 400mg a night. I am now on 200mg a night. My tastes are fine and my drinking sodas were never like metal. But for the fatigue of the disease I also take Provigil in the morning. I have noticed my eyes have changed. Never gave it a thought to be Topamax. Plus I just got new glasses again 3 months ago and am seeing a change in my sight again. Also there is a noise in my ears,not ringing,but sounds like crickets. Never had that before. I was on 2 other meds but I took myself off of them because I really don't like taking so many. The others had worse side effects. Until they find a cure for this disease it looks like I'm stuck with Topamax. This is one pain I will not and can not live with.

I'm on Topamax, Atenolol, and Citalopram...all for migraine prevention. We added the Topamax to the regimen (100/day) about 6 months ago. The first 6 weeks were the worst for side effects, especially the metallic taste, tingling hands, 'stupid' feeling, and fatigue. However, I did eventually adjust, and the migraines did decrease in frequency and intensity. They were not completely eliminated, but when I still get them, I find that I can abort them with the 'rescue' drugs easier, and they don't last as long.

If you like soda's and are upset by the 'flat' and metallic taste caused by Topamax, there are some sodas that don't taste quite as bad. Coke Zero and Diet Pepsi Max seem to be a little more carbonated and have a 'zingier' taste. After about 3 months, some of the carbonation 'feel' came back and I could drink things like beer again, without it tasting like I was sucking on a rusty nail.

I use to get the 'stupid' feeling to for about the first 2 hours after I took my morning dose. I couldn't remember words, and would forget what I was talking about in the middle of my sentence. I started taking my meds at 4 am, so that I had a chance to sleep the 'stupid' off by the time I got up at 6 and left for work by 7am. Then I'd take my evening dose after dinner, because my kids don't care if I'm an idiot...just as long as I'm not cranky :-)

When I have a migraine, I usually want to drive a pick-axe into my head, so all-in-all, these side effects aren't too bad in comparison, and make me a much more pleasant person to live with.

I have been on Topamax for the last year for migraines but during the same time period, started having problems with my eyes. I thought it was an infection from my contacts so I stopped wearing them plus my eye make up. I have been to 5 doctors and they all seem to think it's "Dry Eye Syndrome" and I have been having them insert plugs into my tear ducts and I am constantly putting lubricant drops in my eyes to relieve the burning and itching. It dawned on me this weekend that this All started the same time I was prescribed this medication. I have stopped the pills since Fri.

My question to all: Does Anybody have been having similar problems and will it go away or is the damage done?? Will the doctor.s admit to knowing anything?
Thank you!

This is my third time on Topamax...and I am weaning myself off again...The first time I loved it! I don't drink pop so I could care less about the taste issues. I suffered some tingling so I took Magnesium for that, some fatigue, low blood pressure, etc. But, due to a rapid weight loss (I was already small) and low blood pressure my doctors took me off. Then when I put some weight back on and the severe migraines persisted, I was put back on. Then, lots of tingling, dry eyes, fatigue, NO weight loss (apparently it only works the first time for loss) and weird vision disturbances and feeling dopey and not being able to talk, teach to type. So, I stopped again. Well, I can't live with the headaches, so on again. Well, it's been over 2 and a half years total now and I am just now beginning to see the real effects of this nasty medicine. I have been "sick" for over a year and no doc (10 total) can figure out what's wrong!!!! I have been researching a lot and come to the conclusion that it very well may be long-term use Topamax effects...45 lb. weight GAIN in a year and a half, constant nausea, severe fatigue, skin rashes, female infections non-stop, dry skin, lips and hair, dental issues, muscle and joint pain, pins and needles in feet, eye twitching, constant cold hands and feet, metallic smell to hands, body odor,insomnia the list goes on and on...Some of these I just noticed when my neuro (who thinks Topamax is the only cure!) upped my dosage again due to daily headaches and I started researching. I am currently weaning off of 150 mg. (100 at night and 50 in the am). I have been on up to 250 mg before. Although it used to help my headaches, the side effects are just too much to bare.

I was doing just fine taking 50 mg of Topamax but I was still having minor headaches. My doctor said to go to a neurologist because there may be a tumor to worry about. He doubled my morning dosage and added an evening dosage so now I am taking 200 mg. a day. I started the insanity on Friday. By Monday i went grocery shopping and couldn't remember what I was shopping for. Thank God i brought my husband with me...when I could remember that he was with me. And then when I remembered to ask him what we came for I needed to remember where it was. Upon returning home I offered to help my 7 year old grand daughter with her spelling homework. Do you how embarrassing it is to not remember how to spell first grade spelling words? Tuesday was Mardi Gras and we went to the movies so I was saved any further mind questions. Then along comes Wednesday and I returned to work. Well, I tried to get to work. I got lost. Here I was at Walgreen's trying to figure out what I was doing out at 6:00 in the morning. What day was it? The looks on other's faces when you ask them these question is not something funny. So, I get back in my car and aim in the direction I hope is work. Luckily, I remember where I habitually stop for breakfast. My memory comes back again and I make it to work. I am on time and all is well. Now, the day begins.

I haven't had a period since December. Here it is February. And no, I am NOT pregnant. I can't concentrate. I ate 2 chicken nuggets for lunch and am full (now that is a healthy lunch, huh?). I was addicted to Dr. Pepper and now can't even stand the smell of it. I can't walk and chew gum at the same time. I found a note that I wrote sometime yesterday that really scares me because I don't remember writing it. It says, " Headache @ 1:55 no known trigger jut sudden movement to pick up papers from bin over desk. Nausea as well. Need to go to sleep forever." Good feeling to have? Depression is kicking in.

I just called my doctor and he says decrease the medication down to 100 mg. Ummmm...How about I decrease it down to 0 mg and I take a Imitrex or 2 and a hot bath with a nap when I get home and live to see my grandchildren grow old! I think living with a migraine or 50 is far better than what I have been feeling this past week.

If anyone can tell me that it gets better in less than 2 weeks I will stay with it but 1 more week of this and I will be a patient in a mental hospital. I can't even play Nintendo with my grandson...NOW THAT IS DEPRESSING!

I have had migraines for several years now and just recently found out that the med I was taking at each episode was really for those that have migraines a couple of times a year - I have them a couple of times a month. I was prescribed 50mg of Topamax, two times a day. I took both doses on a Thursday and could not go to work on Friday. By Thursday night I was lightheaded...by Friday morning I couldn't keep my eyes open, my brain couldn't seem to tell my fingers how to type, I couldn't come up with what I wanted to say, I tried to read in bed and couldn't even concentrate on what the book was saying. Normal events (taking my 2yo to the restroom, walking into a restaurant) were exhausting. I'm going back to the doctor tomorrow to discuss all that occurred. After reading all the side effects online, I would honestly rather deal with the migraines. At least I know they will go away. With the Topamax I felt completely out of control of my body...never a good feeling.