Topamax and headaches

I am decreasing my topamax meds now after taking it for 6 horrible months..
topamax? rather call it dopamax..
I took 100 mg daily
now i'm building of the topamax I can allready feel the difference..
I hope I become the joyful smart person again I once was before..
I lost weight during this six months, wonder if i'll gain it back.. but don't care. I must get rid of this drug.. I'm so sick and tired of the side effects!!
For me it wasn't a good solution for my migraines
They didn't stop.. the first month i took topamax, my god i could bounce my head against the wall due to the outstanding headaches i got; even worse then my normal migraine seizures..
i'm not gonna look for a replacer for topamax, i'll just take my migraine as i did my whole 22 years long.. That's life and I want MY life back
good luck to you all!!

I finally stopped taking Topamax because of the side effects. But the worst was getting kidney stones from it. I only drink water and drink a lot, but I still got stones. The first time I was in so much pain that I could barely stand it. The second time, I had the pain and with it a kidney stone that was too big to pass. I could barely urinate. Had to have emergency lithotripsy to remove it. The doctor did a CT scan recently and it showed I still have many stones in both kidneys. I can't take another one of these attacks because they are so painful. My neurologist gave me a natural remedy for migraines called Petadolex. This stuff works! It has made my headaches much less severe when I have them which is not very often and my daily low level headaches are gone. This stuff is made in Germany and can be found in most health food stores and pharmacies. It also cost a lot less than Topamax.

When the generic Topamax (topiramate) came out, my insurance company wouldn't cover the real Topamax and it was costing me $400 a month if I wanted it over the generic. The generic was the worst drug I have ever taken. It is NOT the same as Topamax. I got so ill off of it that I had to get back on Topamax. I am finally off of Topamax completely after decreasing the dosage over many weeks. I was on 200 mg a day. I had all the side effects too like tingling hands, cognitive impairment and depression along with some others. This drug is poison and I am so angry the manufacturer didn't state all the possible side effects when they knew damn well it had them. There is a class action lawsuit against this manufacturer for not disclosing some of the horrible side effects.

I'm a sophmore in high school and was put on Topamax for my headaches in August. I was on the drug and tabbed up from 50mg to 200mg and only stayed on it for five weeks because of my soccer schedule. I was losing weight too fast that it was dangerous for me and my athletic trainer said I'd have to quit taking the drug or quit soccer. Now that the season is over, I've started the drug again, and I'm only on 50mg at the moment. I don't have flu symptoms and other people have mentioned feeling cold because of Topamax. Well, I'm extremely cold, my temperature has dropped down to 96.7F to 97F and sticks there. I live in Minnesota so the last few days when it's been so cold I've had to stay home. I'm already losing weight again and I have horrible tremors. Has anyone else noticed a drop in temperature or been extremely cold?

I started Topamax over a year ago and titrated up slowly, 25 mg a week until I got to 125 mg a day, split dosing. I was started for migraine prophylaxis. Once it kicked in, it did an amazing job of keeping my headaches away. But, here is something really important: if you are going to have surgery, there are contraindications with Topamax and anesthesia. No one either knew this or told me this and I only found out weeks after I went through a really lousy experience. What I believe happened is that the combination threw my body's pH balance off. I felt like my insides were burning and it was only at that point that I started to experience the severe diarrhea and weight loss, fatigue, and general malaise. It lasted for weeks. All I could figure at the time was that it was just taking me a really long time to recover from my surgery (ovarian cyst removal and unilateral oophorectomy), but that didn't make sense. I felt like I had a horrible flu for weeks. I kept seeing my doctor saying something was wrong with the way I was healing (ie, i had an infection or something). Anyway, this eventually stabilized as I back off the Topamax. I was so weak that I didn't even realize the memory issues or word finding problems, but when I started to feel better physically, I did notice those. That REALLY bugged me. I like to be sharp. So, I tapered off. About 1.5 months later, my headaches started coming back. I decided to try Topamax again feeling that now I understood it much better and could watch it more closely. Maybe this time I could ride out the side effects. Well, this time several months passed at the same dose. My headaches were still there and I had no side effects. We upped the dosage. Still having headaches, but no diarrhea, no weight loss (in fact, weight gain of 15 pounds over the last 9 months since last Topamax round), no real problem with word finding, etc. Up to about 200 mg daily by this time. It has been about 6 months and I have started tapering down and about to give up, down to 150 mg daily right now. NOW, here is something interesting: I just have another surgery, but no anesthesia. It was oral surgery. I did, however, have to take a round of antibiotics. It seems that this round of antibiotics has kicked the cycle into gear because I started having gastric problems, perhaps because of the antibiotics (although in the past, I have not had problems with antibiotics before, ALTHOUGH I did have to take them last year with my in-hospital surgery), I don't know, but I have finished the round of antibiotics and I am still having diarrhea. My appetite is suppressed, and I have lost 5 pounds in this last week. Many people say you cannot lose weight if you stop Topamax and restart it later. That is an interesting. I wonder why that is. Topamax is such a strange drug. Why did it not work for me the second time I took it, or at least for 9 months? Is it just now kicking in with its side effects as the result of upsetting my gastric system? Will it start working now for my headaches, too? I think I will continue to taper off or maybe see if I can prevent headaches on a very low dose. Oh, another interesting thing: I found the first time I took Topamax, it made me feel energized. I found that this time, it made me feel the opposite. I sleep a lot more and feel more sleepy during the day.

I began getting debilitating headaches 3 years ago. They were everyday and not the classic headache (no visual, nausea etc). It felt like a jackhammer to the back of my head every single day. My neurologist told me they were migraines. I was skeptical as every other migraine med had not worked. I began on Topamax at 25 mg twice daily. I started at this dose for a month. The body really needs to adjust SLOWLY to this med. My side effects were pins and needles in the hands and feet, strange taste in foods, flat tasting sodas, drastic cut in appetite. My doctor assured me these would go away. Headaches did not start to improve until the second month when I went up to 50mg twice daily. By the third month I was up to 100mg twice daily and I feel like I have my life back. I still will have occasional migraine breakthroughs, but nothing like the misery I had before. Within 5 months or so, food began to taste normal again and the pins and needles stopped. I dropped 30 pounds total on Topamax. It has been a life saver for me!! My advice for anyone thinking about this drug is to ease your way up slowly until your body adjusts. One week on a dose is not enough time.

I conducted a search for "long term effects of Topamax" and discovered this site, and am so glad to have done so. I have been on Topamax for around 2 years now, at the 200mg level, for chronic, sustained migraines. I have figured out, through tracking, that I will get a migraine lasting 3-4 days during ovulation and again on my period. The Topamax has helped considerably with the headaches, although I do still get at least one per month. It is generally not of the same duration, though, and is fairly easily controlled with pain meds.

I've been a bit worried, though, about continuing the drug for life, as it seems I need to do to control these headaches--thus the search. I, too, have experienced the "mental fog," and general decreased cognitive abilities. I am an extremely intelligent person, a writer, a former English teacher. Why am I unable to pluck words from my brain when I need them?

I've also experienced the tingling and numbness in various extremities, sensitivity to cold, blurred vision, fatigue, and loss of taste sensation. I've also become a royal bitch to my husband and children--although I had no idea that this could be related to this medication. I feel relieved to know this now...to know that I can change and be the person I once was. I don't like myself very much right now, but it's like trying to stop a runaway train. I can no sooner prevent or alter my knee-jerk reaction to things than I can stop that train.

I've been off of the Topamax for approximately two weeks now, and have already gained 5 pounds, although I work out 2-3 hours daily and play competitive volleyball 2-3 times per week for several additional hours. I had initially lost around 18 pounds and kept it off, even when my appetite returned. I'm uncertain, though, why I'm gaining the weight back so rapidly. I'm eating fewer than 1500 calories/day and exercising like crazy. It doesn't make sense.

I don't care about the weight, though. My chief concern is the return of my cognitive function. Has anyone experienced a return to their prior cognitive state after getting off of this medication?

I am taking topamax for about 4 months now
it works for the headaches though i still have days that i have migraine
-still have tinglings in the soul of my feet
-lost weight .. not sure how much lets say 6 lbs
-mood swings.. very bad mood swings.. for example.. this morning at work.. a colleague asked me how are you today? I felt bad and just started crying my eyes out.. terrible..
after 2 hours I felt numb and now i'm feeling ok..
-allot of diarrhea
-very thirsty all the time
-can't drink as much alcohol as i used too and if I do I become a very irritable person.. and the headaches the day after are reallyyyyy bad!!!!
let's say i have my good and my bad days with topamax..

I was on 100mgs of Topamax a few years ago for migraines and lost about 15 pounds. It worked okay for the migraines, but I backed off on the dosage because of the side effects. But recently, the headaches returned so I increased back to my full dosage.

So now I feel exhausted all the time. I run a lot and have trouble getting energy to exercise. This morning at a meeting it took me about 30 seconds to remember my secretary's name. I feel like I have to push through this mental wall to concentrate, and on my job I need to concentrate. My mouth feels dry all the time. Some days good food just tastes like crap.

Now I'm remembering why I quit taking this drug in the first place. I don't have seizures, which is why they made it. I have migraines. There are other medications to fight headaches, and this drug just isn't worth the side effects.

I was placed on Topamax, off label, for suspected bipolar illness (now disproven). My cognition, word finding abilities, memory has been so adversely affected that I am now on disability. I had 5 kidney stones due to the development of Renal Tubular Acidosis, nearing renal failure (a side effect doctors don't warn patients about). This in turn led to osteomalacia, softening of the bones, only discovered after I broke all three major bones in my leg and snapped off my foot stepping off the lowest seat of a bleecher. I've suffered tingling in arms, hands, legs & feet (nerve damage), lesions in the brain, muscle spasms, heat & cold intolerance, insomnia etc... Although I lost weight, I gained it back (then some) as soon as I reduced the dosage of 800 mgs. Upon stopping the drug to save my kidneys, thus my life, my kidney function returned to almost normal within a few months, although there is residual damage. All other side affects remain two years later. Losing weight is not worth dying! Beware of this drug being used off label! I would never trust this drug!

My experience was a seven day short-lived trip through hell on Topamax.

I began experiencing a constant headache for several months in February 2009 (no prior history of headaches). I am healthy 32 y/o male. After multiple MRI's and CT scans came back negative I had a very severe headache that sent me to the ER. The ER helped arrange for me to see a Neurologist, who after patient listening to my laundry list of symptoms concluded I was having migraines (even though I had no sensitivity to light, sound, or nausea). I had been doing a decent amount of research on headaches and didn’t agree that they were migraines but decided, he’s the neurologist, I should trust him. Let me also say at this point, I am not a person looking for a pill to cure my problems, but I was getting desperate as my headaches were ruining my life. I was prescribed Topamax.

I was suppose to start with three days at 25mg, then go to three days at 50mg, and finally up to 100mg per day. The first three days were uneventful when I hit 50mg and then 75mg…I was out of my mind. I read these messages and see people at 400mg with no problems…it makes me cringe to think of dosing that high. I stopped at 75mg…here were my side-effects. Tingling in my face, lips, hands, arms, and fingertips, chest pains (I do have GERD and it jacked up my GERD bad!!!), pain in the back of head, taste confusion (soda tasting flat), and pressure in my eyes and temples…But those are NOTHING compared to the complete feeling of anxiety that over took my body. I had a mild nervous breakdown at work, became paranoid to the point where I was afraid to do routine tasks. And the MUSCLE SPASMS…those are the worst part. I have muscle spasms all over my body, just random fluttering of muscles in my chest, arms, back, neck, head, and face! I became suicidal and had the worst night terrors ever, of things, that I wasn’t even afraid of.

I have been off Topamax cold turkey for four days now and the anxiety has significantly subsided. I have worked through a lot of the anxiety with my wife and I now believe that stress is the cause of my headaches, not migraines like I tried to tell the doctor…but the muscle spasms have not stopped (they have decreased) yet…but I can’t wait for the Topamax to leave my body.

I used to think these messages boards were part of the problem, but they are very helpful. Do your research before you put anything into your body…trust yourself and if you disagree with your doctor, get a second opinion. This has been a life changing event for me.

Health and Happiness to all

I am a female in my mid-to-late 30's. I was on Topamax for about a year. The memory, vocabulary, concentration, focus, loss of words and 'confusion' got so bad it became a real problem at work and the rest of my life. When I started forgetting how to get home, the neuro doctor took me off of it. Those problems decreased a bit, but never entirely disappeared. After weening off the medicine, the full-blown headaches/migraines returned (Topamax only moderately relieved pain). So now in addition to the pain in my head, I have the lingering sides-effects to deal with. It cost me my job. I've been off Topamax for over a year and still have not regained control of my own thought processes. Among other things, it's embarrassing because I feel stupid. I no longer understand about half of what I read, have trouble following (and remembering) conversations, habitually forget what I'm supposed to do/have done/am doing. Forget being able to follow a series of directions. I am afraid Topamax has caused permanent damage to my cognitive brain functions and I have no idea what to do about it. Has anyone else experienced this problem?

I have been taking Topamax for almost five years. I am currently taking 200mg in the morning and 250mg at night. The tingling in my feet and hands come and go. The weight loss has tapered off. My neuro and I very slowly worked up to this level but it has finally put a halt to my migraines. I may have one once or twice a year. He says this is the highest we could ever go so thank goodness the headaches stopped. The past year I have begun to be very forgetful, Over the past three months it has started to affect me on a daily basis. Over the last week, I haven't been feeling like myself and have started to feel emotionally numb. Meeting with my neuro today, Not sure if its the meds or not causing me to feel numb or just life's' stress.

i have been on topamax for a year now and the side effects change from time to time.but the worst is the taste of copper in my mouth at times or the headaches i just wish there was a medicine that didn't give all these side effects

I was taking Topamax for about 4 years for chronic/daily migraines. It helped tremendously after I had taken almost everything else with no success. Then I had an episode where I ended up with 5 kidney stones. They passed but my neurologist wanted me off the Topamax in case that was the cause of them. I went off and my headaches came back with a vengeance. I had them daily until I begged my primary care doctor to put me back on Topamax. I honestly would rather have stones than daily headaches. I am a mother to four and have a husband and a job. I can't live with daily migraines. After being back on it for about two weeks the headaches have disappeared. I take 200 mg twice a day. I do have memory loss and loss of words big time. It is VERY frustrating. I feel stupid. But I can live with that. I have tingling cheeks , lips and hands. I'm sensitive to sun and have to wear my sunglasses a lot more now. I now talk in my sleep- a little nervous about that :) I lost weight last time around but haven't yet this time. I am very happy, not sure if that is the RX or just me reacting to not having headaches. I guess you have to weight the side effects with the benefits. The choice is ultimately up to you. Good luck everyone!

I am a 38 year old male suffering from a combination of occipital neuralgia and migraines. For 20 years, until a year ago, i would endure pain that was only manageable with narcotic pain relievers (imagine all the gamut of such kind). I would have neck and head aches typically 3-4 times a week, accompanied by vomiting, dizziness which would put me to bed for the entire day. Work and family suffered in magnitude comparable to my own suffering. So then I finally saw my GP for that. The pain meds went up the roof, imitrex, maxalt was added to the equation with only marginal side effect. I saw a neurologist. He had me do an MRI and put me on Topamax starting from 25 mg, which I upped to 200 mg within 6 weeks. Past the initial side effects, the headaches subsided, the frequency reduced and i was able to enjoy weeks at a time with no episodes. Stayed at 200 mg for 5 months. In the meantime, the MRI came back positive for some brain inflammation. False positive they said, does not fit the clinical picture. Second MRI, same positive, this time proceeded with LP, which was negative. Third, MRI still positive; making the neurologist uncomfortable. While dealing with MRI results, the topomax had yielded positive results as far as pain management was concerned. But little by little I noticed that I was becoming more irritable, more impatient and more forgetful. Someone would have to remind me of something several times before it would even register in my mind. I empathize will all the posts that mention feeling like having Alzheimer's. I didn't care in the meantime. As long as I didn't have to deal with the pain it was ok with me. But the situation became worst and worst. I couldn't concentrate on anything, the mere task of remembering to do something was insurmountable. I would wake in the middle of the night and find myself staring at the bathroom mirror for no reason. I would have terrible panic attacks which i control with valium. But yet i continued on with topamax convincing myself and being convinced by other people around me that i just had a "personality disorder". Finally, work begun to suffer. I was loosing track of meetings, deadlines and when this happens someone knocks on your door (boss) telling you that something just doesn't click, something just doesn't feel like a personality quirk. Other people playing doctor would slap on my face that i just had ADD, that I should take something for that and get on with my life. But something was wrong. Pain or dizziness or lack of concentration etc are all electrochemical processes in your brain. It turns out that topamax was helping my headaches but it was not slowly deteriorating other cognitive abilities. Finally, the neurologist decided I should wean of the topamax, stepping down from 200 - 150 and then we go to 100 and so on. I dread the re-occurrence of the headaches. I am waiting for them to happen again at some point as I drop the dosage. But in the end of the day, I'd rather be in pain and in control of my life rather pain free and absent minded.

Hey everyone
I am a migraine patient myself
I'm 21 years young and been having migraines since my 12 years.

i've started taking topamax 3 weeks ago..
first two weeks 25 / morning
25 / evening

so ok my headaches got worse

now i'm taking 50mg / morning
50mg / evening

so that's 100 mg a day

side effects: funny feeling in my sool on my feet
slow reaction, real bad headaches,
i have an implanon and haven't had my period for 2 months now i've suddenly had my period for 2 days..ok it wasn't much but it was there, never have acne now i have 3 zips on my face, always black spots in my view, coughing for 3 weeks, lose weight more easley (i'm always on a diet) , this weekend someone asked me if i lost an huge amount of weight (which isn't maybe 2 or 3 kg ) my appetite is also less, i can eat if i want to though.. i can choose it's up to me :-) hmm let's see what else is there.. i'm a telephone operator so the word loss isn't a good thing for me either i'm gonna see how far that goes..

so i've been on topamax 50 a day for 20 weeks
i'm taking 100 mg a day for over a week now
within a week i'm seeing my doctor again
if my migraines aren't better on this dose my doctor is going to sent me to a specialist..
whatever doctor that's going to be ? :-s

I have been on 100 mg topamax for a few months now, and i was actually having people try my drinks bc i thought they was flat, and i would feel my fingers and my toes go numb and tingle. I honestly never thought for two seconds it was my medication. The only side effects i was warned about was weight loss (which hasn't occurred with me) and that i would be very thirsty, which i am. But i have NIGHTMARES about things im not even afraid of, and i have trouble spelling words i didn't before, and sometimes i can't even remember what i wore last week to school. Im starting to rethink this whole topamax thing, does anyone know any other prescriptions that will help headaches without the crazy effects?

Hi there. A number of years back--maybe 8 or 9 years, I was prescribed Topamax for bulimia and mood swings. I was on a dosage that eventually went as high as 75 or 100 mg. At first it improved my mood and decreased my bingeing, which was very encouraging, but I began to have really awful side effects. First was the cognitive stuff: I couldn't remember people's names and even simple logic puzzles like how to fit a pair of shoes into a shoebox correctly stumped me. Soda tasted flat. Then my moods became somewhat erratic and I began to have intestinal discomfort. Then, even more oddly, my skin started having trouble healing from minor wounds. My hair became brittle and began to fall out. At that point I gave up and stopped the medication. It really felt like I was undergoing some kind of slow poisoning, like arsenic or something.

Now, I've developed migraines and my neurologist has put me on a small dose of 25 mg at bedtime. I've been highly reluctant to acquiesce after my former experience but nothing else has worked and I sometimes have headaches that last over two weeks at a time. I'm wondering if anyone else has experienced side effects at 75 mg but not at 25?

Hopeful in NY

I am on Topomac for the last 10 days. I have been suffering from stress migraine for the past 6 months and I took professional help only a month os so back. The doctor started off with Sibelium, but this managed to reduce the occurrence. So instead of 4 headaches I now had 2 headaches per week. After a month of Sibelium, he started me on a 25 mg course of Topomac. I did not realize that this drug would be one which I would end reading so much about. Starting on this drug I immediately started feeling lethargic, sleepy and general tingling in the arms. From the 8th day onwards the dosage was increased to 50 mg per day with a review to be done on the 30th day. However other than the general lethargy, sleepiness, and slight lack of coordination, I feel that the drug has helped me get rid of the pain of migraine. I hope I am not speaking too soon, but I will keep all posted of the progress of my treatment with this drug.

I had the most horrible experience with this medication. Part of it was due to my doctors poor care. On Monday I started at a new doctors office which is rather large. I gave him him my history with migraines and told him I was finally ready to start some sort of treatment. My previous doctor in the town had often recommended that I take something but I didn't want to take a daily medication. I am a fairly healthy 21 year old who gets between 5 to 10 migraines a month and many more headaches a month. I told him that my doctor and I had always concluded that my migraines were stress related. I told him that I have been experiencing a high degree of anxiety (I am a junior in college and it's the last week of class before exams.) He recommended Topamax and told me that it was an anti-seizure medication that was often used to treat migraines. He warned me that if I had any trouble with speech to let him know immediately but other than that he hasn't seen any other problems. He prescribed me 50mg twice a day,which he did not titrate as he should have. I took the first dose before bed Monday night and woke up so dizzy Tuesday morning I missed my first class. The dizziness passed and I just thought it was an adjustment period so I took my morning dose. I began to feel some tingling in my hands and feet and my reflexes were slowed (I felt like a drunk driver) I am a manager at a retail store and I forgot to do some of my most basic tasks. I took my evening dose and was described by fiancee as zombie. On Wednesday I woke up very emotional and cried a lot but didn't really think much of it. I took that mornings dose. By midday my anxiety and depression was so high I became suicidal. I had a panic attack while driving, i stopped off at my place of work because i couldn't drive anymore and my manager informed me that I was having a panic attack. I had never had one before. I have not been taking this medication for 48 hours but it has not left my system yet. I sought out counseling and am no longer depressed but I still have a great deal of anxiety and have been on the verge of two panic attacks today. I can write today, which I could not do yesterday. I do not recommend this medication to anything. Especially after what it did to me in just 3 days.

I am a 34 yr old woman who has suffered from migraines for 13 yrs and chronic head pain for most of my life. I have had sinus surgery, my vision checked, TMJ corrected and anything else I could think of to alleviate my headaches. I took various anti-depressants to treat for chronic pain. About 3 yrs ago I began taking Topamax after my grandmother & both my sisters went on it for migraines. We all have experienced success in treating the headaches and both sisters lost weight. Grandmother and I did not. We all still have migraines occasionally and my youngest sister cannot miss a dose w/out having a headache. My grandmother has had to discontinue Topamax because it was effecting her memory, speech, and concentration so badly. All of us experienced the "loss of words" problems at first, but learned to adapt and became used to it. But grandma is in her 70s and its not as easy for her. However, in the past month, I have been experiencing the same thing--memory loss, calling a place or object the wrong name, and poor concentration. I feel like I can't even read today. I was taking 150mg and thought I was pregnant so I started decreasing my dose down to 100mg to wean off. I'm not pregnant and I'm thinking of discontinuing the Topamax anyway. It's bad enough when I can't remember things at home, I can't work like this. I have always raved about how great Topamax is and that if it kept my head from hurting, I would take it forever. Now I feel like I'm in the early stages of dementia.

As mentioned in a previous post, I started Topamax the end of October. Since then, I have lost 25lbs, I am 5'2 & weigh 90lbs.

I have been taking 50mg's, but as of last week, I have cut back to 25mg's. It has been really stressful for me because I am scared about getting my migraines again & possibly going thru the HORRIBLE side effects I went thru when I got on the pill.

In the last 8 days, my anxiety level has been really high. I have been taking more (sometimes 2x a day) of my .5mg of Xanax. I have felt myself gasping for breath from time to time. I think that my headaches come from tension/stress, my jaw tenses up. The headaches feel like brain freezes. I am also able to verbalize my thoughts better, so I don't feel so stupid.

My goal is to be more clear-headed, gain 15/18 lbs & hopefully my complexion will clear up. I will probably stay on 25mg's 2 more weeks before getting off. I will let ya'll know how it goes.

I am new to Topamax. Just started for severe/horrific migraine pain - I have been getting migraines that lasted 8 days long without relief for the past few years, popping imitrex like m & m's. Mine seem to be related to a drop in barometric pressure as well as to being perimenopausal. They were ruining my life. I am currently on the 25 mg in the am dose and 50 mg pm dose schedule to titrate up to 50 mg twice daily. So far I have had only 2 migraines in the past 30 days instead of 8-16!!! I am a much happier person- I can't even describe it. People at work even tell me I LOOK different! I do however, have some intermittent tingling/numbness in my fingers mostly, passes quickly, little back pain, and some little headaches that come and go. I can so deal with these. I have only had to take Tylenol or Motrin on three occasions in the past month. I used to take two imitrex and still had take 400mg of Motrin and 1000 mg of Tylenol just to numb my migraines. Can I tell you I used to be somewhat non-functional and still go to work everyday- I am a nurse!
So far Topamax has given me my life back because I seriously considered driving into a tree one day on my way to work before starting it. Wish me luck.

Ok, so here is a new one for you. I have had migraines for a very long time, since I was a teenager, and never really sought physician treatment because in our family a headache was "nothing to cry about". So, now that I am married with 4 kids and an advancing career, having migraines on a weekly basis isn't something I can live with anymore. So I went to my doctor. He said what about preventing them with Topamax. I know what Topamax is, I'm a nurse, I know what the potentials are, but I had not really heard of the side effects when using it in a perfectly healthy person. ANd I must say it has to be my own fault for saying "sure" and not investigating first. WARNING= Topamax is a drug for seizures, effecting the central nervous system, and will have effects on a healthy person's central nervous system. Now, not doing my research I will also not have known that you are supposed to be titrated very slowly up with increasing doses, starting at a suggested dose of 15-25 mg per day for the first week the 50 then to 100, etc. I was begun at 50 mg/day for a week then 100 mg a day thereon out. Please, if you experience the symptoms the pharmacy warns you about, but they are exaggerated, go back to your doctor!! Here are my symptoms by day
Days1-3- Normal effect- tingling hands/feet, taste loss of some drinks, foggy unable to think clearly
Day4-5- horrible head pain, back of my head, not like my migraine pain, stabbing and pins/needles in hands/feet, still can't taste, nausea, dizziness, confused (like I couldn't find my way to my doctor's office confused)
Day 6- And I am entirely embarrassed to say this one because I am a nurse, and I know what it implicates... Pseuedoseizure. I was in the doctors office, in the waiting room and I could not control my muscles. I knew it wasn't a seizure because I could hear some of what was going on around me, but something was not right. I couldn't move anything and I didn't remember everything. And all the above symptoms, along with. But, naturally normal CT...
Day 7- It happens again... And this time I have some right sided weakness and all the above, that's it, it has to be the Topamax, we are done. It's only been a week, so cold turkey.

That is my experience with Topamax, and unless I am actually seizing, it is a journey I will never take again, I have 4 little ones that depend on me too much. PLEASE research before you try whatever is handed to you!!

I'm almost 21 years old. I have been taking 100 mg of Topamax before bed since I was 17 for migraines. I did not have the weight loss that a lot of you had. I did have the tingling in the hands and feet for about the first two years. I have also had a lot of memory loss and a change in personality. I have become depressed and aggressive. I have also had extremely realistic nightmares while on Topamax that I did not have before I was on the drug. However, I don't think that I could go off the drug because I ran out of it once, and I know that you aren't supposed to stop cold turkey, but I had terrible headaches and could not go to work. I ended up in the ER because I had such a bad headache.

We learned about this drug in my Educational Psychology class. If you start taking it when you are younger and stay on it for an extended period of time, it can prevent your brain from developing. This would explain the memory loss, at least for me and other people that started taking it when they were young, but the memory loss and confusion is worth it to be able to keep a job and get good grades in college.

I was prescribed Topamax for prevention of migraines, since they are getting worse, and my usual meds didn't seem to be doing the trick.

I only took it for 9 days at 25mg dose (1X per day) and at day 8 I awoke with the most HORRIFIC back/side pain, I could hardly stand. It worked for my headaches, but now I still have back pain, and I have to call the doctor, as I am showing serious signs of KIDNEY DISTRESS.

To the best of my knowledge, I did NOT have any issues with my kidneys before taking this med, but I may now. I was told about many of the side effects, but NOT this one. I sure hope this drug hasn't pushed me into some kind of renal failure. I would rather deal with the migraines any day. Thanks, Topamax!

Started taking Topamax about a month ago for frequent migraines. I used to take Axert 2 to 4 times a week. If I did it at the beginning of a headache it worked very well, with little or no side affects- just got tired of having so many headaches. Started the Topamax and worked up to 100 mg per day (50 am 50 pm). Seems to control the headaches well, down to maybe one per week and I think less severity.

Side effects so far: 1. Perhaps some memory stuff as described by others (hard time spelling formerly familiar words etc... but doesn't seem real obvious to me (maybe to other!!!). 2. Diet Coke tastes terrible like everyone says!! This one hurts cause I love diet coke. The good news is that I don't notice the effect as much now a the first couple of weeks.
3. I have frequent (emphasis on frequent) diarrhea- like a couple times a day four to five days a week. This one doesn't seem much better. Now there has been some associated weight loss as reported but Im not sure that is due to reduced appetite or daily diarrhea or both. Either way I was glad to loose the ten pounds I needed to loose anyway, just wish I could do it without spending so much time in the bathroom.
Have not had any of the tingling in the hands or fingers that others have reported.

First I want to say, after reading several posts, that it seems a lot of you are taking Topamax without food, which may be causing your "spaciness." My doctor suggested always taking it with food, even though it says with or without food, and I only experienced spaciness the few times I took it at bedtime without food. Once I started taking it with breakfast and dinner, that never happened again.

I am a 48 year old woman, prescribed Topamax in September of 08 for migraine associated vertigo without headaches, with facial numbness. The first thing I noticed was I immediately had headaches, which to me indicated it was dehydrating me as that is the only time I get a "normal" headache. So I knew I had to drink a lot of water. Soon after starting Topamax I developed a dry cough that lasted the entire time I was on the med. I did not relate it to the drug at the time, however. It never even occurred to me. After about two months on the drug I started having trouble breathing with extreme dryness in my airways. I was prescribed an albuterol inhaler which did not help. I was then prescribed a corticosteroid inhaler which also did not help. I thought the trouble breathing was from taking Nadolol which I was prescribed for occasional heart fluttering - the neurologist said this was a normal side effect of Topamax. I stopped taking the Nadolol but the trouble breathing continued. I also had more migraines with vertigo and facial numbness than before I started taking the drug. I hoped it would eventually stop and the drug would kick in to help the vertigo, so I stayed on the drug. I had very minor tingling in my feet, but it was tolerable. I became very stressed out, had trouble sleeping, depression, my face started breaking out in November (and still is), I lost interest in everything that I normally enjoy - reading, photography, following politics in the news (sort of an obsession of mine). In December I was so depressed that for the first time in my 11 year career I started canceling appointments and eventually took three weeks off from work to "re-group." In January the neurologist decided that we would increase the dose from 100 mg to 150 mg for one more month, and if it did not get rid of my migraines with vertigo, we would discontinue the drug. The first day on the increased dose I had a killer headache, and I drank 150 ounces of water before it went away. That night I did not have to go to the bathroom during the night, unheard of for me. That's a lot of water to drink and not have to pee. Within two days of increasing the dose, my cough became much worse, and within three days, the breathing became more difficult. Within five days, I was having trouble speaking because my airways felt so dry. I called the doctor the next morning and he said it was not the drug, but if I wanted to, stop taking it. So I went off it cold turkey, per his instructions. I had rebound migraines every day for a week or two and my heart was pounding, sometimes for three or four hours at a time. Eventually the cough and trouble breathing went away, however, I had to continue drinking lots of water or I would notice that I didn't have to urinate, sometimes not at all. Again, unheard of for me. I saw a cardiologist at the neurologist's urging and they said the heart pounding was just anxiety. I disagree, as did another doctor of mine. We both believe it was withdrawal. I have now found out (by getting copies of my medical records) that the neurologist is now attributing all of my side effects from the Topamax to "somatization." In other words, psychosomatic - not a side effect, but just a way of getting medical attention. I am seeing a few people on this board who have also experienced a dry cough and trouble breathing. Can I have the same side effects as other people and have them still be psychosomatic, even though I had no idea those side effects could occur? I don't think so.

I have a theory that Topamax interferes with hormones which causes a lot of the side effects like lack of concentration, memory loss, anxiety, depression, insomnia, acne, and hair loss - all symptoms of peri-menopause and menopause. Ask any woman in her 40's or 50's if she has these symptoms and most of them will say yes. My face has not been this broken out since high school! My hair is falling out at a rapid rate. I won't even bother mentioning these to the neurologist. He'll just say it's not the drug.

I'm very frustrated and not sure what to do at this point. The neurologist has me taking a supplement called Migrelief now, but I think it takes three months to kick in, so I have no relief at this point.

Has anyone else experienced the trouble breathing with dry cough? I don't believe for a moment that it was psychosomatic.

I'm 15 almost 16 years old and i was prescribed Topamax about a month ago. Since i started taking it I get tingling in my feet, A LOT of back ache and i'm still experiencing the headaches, although my doctor said that it would take about a month to start working. I still haven't lost any weight, which im looking forward too since im overweight for my age. Im going to keep taking it but if it gets worse im going to have to leave it.

Ok so im 18 years old and I pass out frequently, I have been unsuccessfully diagnosed with several different theories over the past two years, Recently some doctors though that my passing out may be an aura to the headaches and migraines i receive after, my doctor just prescribed Topamax to me and Im really nervous about taking it after reading about these side effects, has anyone else been prescribed topamax who has similar symptoms?

I'm a 38 year old female who took Topamax back in 2003 as a migraine preventative. I don't remember any diminished brain capacity, forgetfulness, etc., but then I also suffer from ADD, so who would know. Anyway, I don't see this particular side affect with anyone, but exactly 72 hours after starting Topamax, then 72 hours after each dosage increase, I would suffer from severe body aches. The worst I've ever felt in my life and I usually get body aches with the flu.......these were much worse. If I remember correctly they would last for several days then gradually fade away. The Topamax didn't seem to help my migraines because six months later the neurologist switched me to something else. I'm seeing a new neurologist now and he wants me to try Topamax again. I'm worried and stressed beyond belief. I don't want to go through the body aches again. Has anyone else experience this? Am I maybe deficient in something that I could beef up on while taking the Topamax to decrease the body aches side affect?

sd

I have found that Topamax was the wonder drug for me. Thank God for it. I suffered with lupus related headaches for years and could not find anything to control them. They were horrible until my doctor prescribed Topamax. Three pills at night (25 mg) and two in the morning (25 mg) controlled the headaches completely. No more pain at all. While I did lose weight, I now get to eat whatever I want because I don't seem to gain any weight for the first time in my life, which is a very nice side effect. But more importantly, I have not had a severe migraine for quite some time.

I have been on 50 mg topiramate for a while now. It is part of a 5 drug mix used to address bipolar, anxiety and adult residual add. I take the topamax in one dose at night. When I first started it, I DID try to titrate up to at least 200 mg, but never made it past 75 mg. I took it in the morning, and, after about a week and a half on 75 mg, somnolence kicked in big-time and I was a zombie.
My Dr. and I kicked it back to 50, and moved it from a daytime drug to a night-time drug, and I have not really have problems since. It certainly still seems to have some mood stabilizing benefits for me, even at the relatively low dose I am taking. It also has helped with the awful headaches that I used to get far more frequently than I do now. I do not think that I ever received a weight benefit from it, but it seems that most people generally do not at this dose. Late last year, I had to switch to a different physician. Sadly, the new practicioner is no replacement for the former.
I have gained weight over the past few years for a variety of reasons. A somewhat sedentary lifestyle, social and emotional eating, too frequent consumption of caloric alcohol, (once a week or so,) as well as weight-gain contributory atypical anti-psychotic or mood stabilizing drugs have all helped put me in an unpleasant location on the BMI chart.
I have been enrolled in a hospital-associated, medically-monitered weight-loss program for several months and have een successfully losing weight. My new psychiatrist felt that an increase in topamax dose might be beneficial. I am going to attempt moving up to 100 mg, provided that I feel the change is warranted, and that the side effects do not kick in as before. The aforementioned practitioner has a tendency to be pixelated with respect to the approach towards a patient. This person does not seem to put much effort into reading, absorbing, integrating and using patient file information very well. For instance, this physician would miss the importance of the fact that topamax can cause an acidosis condition, and that the hospital diet typically intentionally puts patients on a diet that causes ketosis. These two conditions together would be unpleasant, to say the least. The doctor never even asked what type of diet I was on....
This is not the first time such an oversight has been made on the doctor's part, and it is my own educational background and awareness that has kept me from being the victim of the doctor's inattention and carelessness, not to mention probable nasty outcomes had I followed the instruction without question.
I am fortunate to be educated about this stuff, and so I do not have to rely on the practitioner's judgment alone. I am shopping for a new one, actually.
As it is, I am not on the hospital's most common diet, the ketosis-inducing one, and so I am not worried much about the potential acidosis due to topamax.
( I am not on the ketosis diet because I am aware of the problem such a diet can cause for bipolar disorder management, independent of any drug interactions. I read about this, consulted with the dieticians and weight-loss center physician, and chose a non-ketosis diet. I have been losing weight at a regular pace. the speed of loss is slower than with a ketosis diet, but safer for me. All it demands is better behavior on my part, but that is life.)
But I want to communicate a few things here.
First, I see that many people suffer not only from adverse effects, but also from arguably adverse treatment by physicians who either are not aware of a drug's information, are marginally aware of it, are not aware of their patient, or some combination of the above, or perhaps they just don't care.
There is also a clear tendency for many docs to balk when the patient's experience doesn't fit the prescriber's leaflet, resulting in dismissal of the patient's concerns and experiences, and may lead to arguably unnecessary tests and diagnostics rather than discontinuation of an offending drug.
Be aware that such treatment is indicative of a problem with your doctor, and the relationship between the two of you. Don't allow yourself to be tossed off that way, especially with no resolution to your problem; get a second opinion. Second, topamax is a specialty drug, and should be prescribed by, and treatment should be monitored by, a specialist. namely, this specialist should be a psychiatrist or neurologist, depending on what you ar taking the topamax for. Even if topamax had been prescribed for you for migraines or weight loss, the doctors most likely to be most educated about its main and adverse effects are psychiatrists and neurologists. There are a very few internal medicine or family practice docs who might be "with it" enough to be following the literature on this type of medication. A sub-point to this is a suggestion that education and information can only help you, and you should seek it out. Don't just read about a diagnosis, or about adverse effects, though. You'll run the risk of getting "medical students' disease", finding that your symptoms seem to match the disease descriptions for all manner of ailments. A general education is actually more useful. Text books can be a great help. Where you find something in a text is a bit advanced for you, try a more elementary text. Texts are available at libraries, so you don't have to buy them all. But reading up on psychology, understanding a little about metabolism, having some familiarity with medical terms, such things can save you from the results of a doctor's distraction, disinterest or disdain. It can also be immensely comforting just to understand how one's body works, and how drugs work within it, when one must face a disease such as Bipolar, Depression, Anxiety, Diabetes, etc. College intro level classes are thorough enough to demonstrate how a 25 mg pill can cause such disruption or such relief in a person's life. Eating certain things, and at certain times, sleeping well or poorly, ambient temperature, hygiene, reading habits, ALL of these things can have a profound effect on a person's day-to-day life. All of those factors, and more, can effect the physiology of an individual. It is good to know a little about how the system works, the better to maintain it. Some pop-sci books are pretty good, too. "You: The Owner's Manual" for instance. But some may read such books and find themselves wanting more information, and this is where any number of college texts about anatomy and psysiology, neuro-physiology, psychology and physiology, metabolism, diet and nutrition, genetics, etc. will come in handy. For those with insatiable curiosity and a deep desire to understand and manage a given disease or condition, there are usually medical texts available specifically covering THAT condition. For instance, those with Bipolar might wish to read at least parts of the text Manic Depressive Illness:Biolar Disorders and Recurrent Depression by F. Goodwin and K. Jamison. This text covers most of the meds those with bipolar would be interested in, it surveys the research done to date, what is known about combo therapies, adverse effects, including hair loss and weight gain, it covers patient experiences, as well as physician descriptions. One of the co-authors, for those who do not recognize the name, is not only a top researcher of affective disorders, but also suffers from manic-depression. The text is almost a good a friend as a patient could have, especially if your own physician is lacking in knowledge about your condition.
Third, several posts express a desire to report adverse effects, as well as doubt that a given personal physician would do so. If you have suffered from adverse effects, and want to report it, you do not require your doc, family practice, psychiatrist, or whatever type, to do so. There is a government website available for the reporting of adverse effects, and it is available to consumers, too. The report data goes to the FDA, which sorely needs such reports, as the drug companies are less than honest with THEIR submissions of information, and the dissemination of research data leaves much to be desired when it comes to the publication of information that is less than glowing about any given drug. I believe that you can find the reporting website on the FDA's site, or some link there. I wish I could recall it here for you.
Fourth, topamax, like most complex drugs for complex diseases and conditions, will affect each person very differently. Some will have little or no problems with adverse effects, while others will find the drug to be anywhere from uncomfortable, intolerable to damn near, or actually fatal. fatalities have occurred with topamax, as they have occurred with almost all, if not all, drugs. There is always a risk for adverse effect, sudden sensitivities, allergic reactions and other wonders and horrors of medicine. This is the nature of it. You have a bad reaction to anything that your body comes in contact with at any time for reasons we do not undrstand and can not even yet identify. Your typical cough syrup could, without warning, suddenly produce in you a rash that could kill you. But the conditions and diseases that drugs treat can be just as awful, and leave us with no option but to take the drugs to survive. Most experiences are not so extreme. For those that are, the greatest sympathy. But just because one had a bad experience with a drug doesn't mean the drug is wholly bad, evil, toxic, or should be banned, or that the drug company should have a class action lawsuit lobbed at it. Drug companies are NOT, in general, being fully honest with their disclosures. But banning a drug because some people react badly doesn't address this, nor does it do any good for the segment of the population that benefits from the same drug with little trouble. I have had very bad experiences with some drugs, but do not feel that these medications should be banned. i know other people who depend on them, and I would not deny them just because I lots hair, gained weight, experienced akasthesia, etc. The individual reaction to a drug requires, sadly, at this time in history with our very limited unerstanding of pharmacokinetics and pharmacodynamics, individual trials. And those trials will often have their share of troubles, too. That is how we find out what works for us and what does not, and that is where we re right now. Maybe in two or three decades, with better understanding of genetics, genomics, epigenetics and related fields, we will be able to customize our cocktails with less trial and much less error. I would love a day when a blood test will tell us who will benefit the most from which drug while having the least adverse effects. I hate going through trials. right now, what I am taking is working without giving me problems. For that reason alone I may decide to NOT try and increase the topamax as my current psychiatrist would like. After all, she wants to increase it so that it might help me lose more weight. I am already losing weight without the increase, and the increase might bring adverse effects, or the additional topamax could simply destabilize my currently very stable mood. The last would then require me to go through another dreaded drug trial to find a new cocktail, a mess I have not had to endure for nearly two years now. I do not think that, for me, the additional POSSIBLE weight loss benefit is really worth the possible adverse effects. The doctor is rather casually experimenting with my life, probably curious to gather more data about topamax's efficacy as a weight-loss drug. I am not so sure that I want to rock my boat. I get the benefits from topamax that i am interested in, mood-stability and headache prevention, from the 50 mg that I already take. I'd rather not exp-erience what most of the posts here have described for adverse reactions, and I most especially do not want a rather casual, needless sort of medication modification to set off a chain of events that results in mood destabilization. That said, I am glad to have topamax available for me to take, as I am fairly sure that it contributes to my cocktail, turning down the amplitude of my highs and lows at a mere 50 mg per night. I would be sore to lose it, and do not want it banned. But I do not think I would want to take more than I am taking now. The somnolence I experienced in the past at 75 mg was not comfortable, and was the type that prevents any meaningful work from being done, anything from reading to laundry to following a conversation. I would not like "pins and needles." I hate it enough when I hit my elbow or when my foot falls asleep! And I really hated akasthesia that I experienced when I tried ability, a drug that made me right sick, but that I know absolutely saves others from oblivion, like my grandmother. I hate the adverse effects, or the experience of them, but I do not hate the drugs. and while I may dislike the drug companies, it is not just because drug have adverse effects, it is for the more perverse behavior of the companies themselves. One still has to try and be, if not positive, rational about one;s experiences. It is healthier to see experiences with drugs as learning experiences. Not everything in life is fun, but try to make everything have some value in experience.
I wish you all better days, and calmer, too. May you all find good and caring doctors, and develop excellent therapeutic relationships with them. May you know your diseases and conditions, own them, control them and thus conquer them.

i was put on topamax for migraines back in aug 07.

well, i stopped it like 5 months ago. (2june 08) i still feel "out of it" like i'm here but im not. headaches came back but i would rather deal with them than all these side effects. i got severe panic attacks and nervousness, MAJOR HAIR LOSS, AGORAPHOBIA (FEAR OF LEAVING MY HOUSE CUZ IM SCARED TO HAVE ANOTHER PANIC ATTACK), i constantly feel dispatched from my family (i have 3 boys and a husband) every day i feel sick or tired, or both. which led me to stop the meds. (25mg am and 25-50mg pm) i weaned off over like 2 weeks (on my own cuz the neuro told me not to stop it and its all in my head.

i had to quit my job cuz of the panic attacks that just happen for no reason.

i still feel all the side effects even though i have been off topamax. hair loss, panic attacks, depression, "high" feeling all the time, cant hold a normal conversation. i have changed soooo dramatically from when i first went to the neuro and started this HORRIBLE DRUG. poor concentration, i don't feel like i want to be involved in anything- i just wanna lay on the couch with an ice pack on my head. i don't know what to do. my neuro doesn't know i stopped the drug and i was so mad at him for putting me on it that i didn't go to my last appt. now i have to wait until January to see him.

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

I have been on 200mg of Topamax for almost a year, which helped my headaches immensely so I tried to ignore the itching. The itching got so bad (especially when I get hot and would sweat) that I had to go off of it. I have been off of it for about 4 weeks and I still itch, does anyone know how long this will last or if it will ever go away? If I am going to itch without the drug anyway, I might as well take it and have relief from my headaches.

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 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 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.

In August I started taking Topamax and every week i am to up the dosage now I am taking 50mg in the morning and and 50 mg at night because my headaches was so bad that I had to quit my job because I couldn't serve food and vomit at the same time. Now that my headaches have gone from everyday to about every other day I have noticed the indigestion. Because I had because sick so long the doctor suggested I had a reflux and it would correct itself.I started looking at all the medication I was on and the list from the pharmacy never indicated indigestion on as a side effect for Topamax.My appetite is non.Weight lost about 20 lbs but I could afford that and then some. I try not to use the upstairs of my home if no one is there because of the dizziness.And simple chores around the house go undone.I have bounce $130 in bank fees this month and can't figure out how and gave the finances over to my husband to keep up with and I am a math major in college this semester.This is how bad things have gotten some simple words i can't recall how to spell . I have to use the dictionary. It's bad.

Ive been on Topamax for almost 3 years. Was on 100 mg/day for 1 1/2 yrs. Couldn't take the spaciness so I went off of it. A new Dr. put me back on 50mg/day 6 months later because my headaches were so bad. I'm doing great. Headaches are less frequent. Maybe 2-3 per month but not so violent. But lately I've developed this twitching under my left eye. It's constant. Could it be the Topamax???

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 taking Topomax for migraines for about 3 years now. Staying at the 75mg at night dosage. Going to 100mg just does not work for me. GI disturbances too severe. Diarrhea mostly. Early on same as a lot of the other reports, tingling in hands, bad tasting soda, some hair loss, and intermittent upset stomach and diarrhea. Memory not as good as without the med and balance a little off. All of these have diminished in intensity and frequency. Up side, weekly headaches that forced me to go to bed gone. Being an irritable wretch because my head hurt, was about to begin to hurt, or just got over hurting gone. At this point in my life the pros still outweigh the cons and as long as that is true I will continue with the regimine.

i have bee on topamax for 2 years started out low amounts now i am up to 100mg at night and 50mg in the morning and i will take 50mg when needed for a headache if i get one thru the day . that is all i love it. no more in the bedroom all day missing life sick. no more head splitting open just shoot myself painful headache. i feel great and i function raising three boys two teens and one pre teen. im not saying that they don't give me a migraine but i can control them thanks to topamax. i hope it never loses its effectiveness because i will lose my piece of mind. oh before i go ,weight gain ! i am an semi-active person. i did not gain the weight at first but as i got older i did . but i work it out and keep going. i would rather 10 lbs more on my tush than a migraine busting my head open. so work out a bit ,go for a walk ,choose a good eating regimine, and lose your headaches.

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 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 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.

I have been on Topamax for 2 1/2 years at 250mg for migraines and have decided to get off because of side effects. I have had all mentioned: mood swings, dehydration, not sweating,tingling, dizziness, loss for words, short term memory loss,numbness, fatigue, GI problems, anorexic weight loss,rage... And this all began from the starting 25mg dose!
The migraines decreased from 24 a month to 12, at best down to 6 or 7, but I seemed to hit a plateau then back to 15.
I saw three different doctors and all wanted to simply increase the Topamax or add another med (Depakote, beta blocker, etc.)
Finally, I found that a problem with my neck may be causing the headaches and treating that has reduced them enough for me to try and get off the Topamax. I still rely on the Relpax to get me through the bad days, but I'm hoping I can get free of the Topamax for good!
I just encourage anyone thinking of starting Topamax to investigate all possible migraine causes before starting!! Topamax doesn't cure the migraine, it only blocks the pain! And the side effects are not worth it if you can find another way to alleviate the problem!

I have been taking Topamax for about 6 months now. I have been on several different everyday medications for migraine prevention and Topamax has been the best one. I was first prescribed Relpax to help relieve the headaches. I eventually got to a point where I was getting migraines every day/every other day (insurance only covers 12 pills per 20 days). I was later switched to Imitrex - which is MUCH more effective (1 100mg tablet) but my insurance only covers 9 pills per 30 days (unbelievable).

Just wanted to give you guys some background on my situation. I have been through 2 MRIs and a CAT scan, visited a neurologist, done 2 sleep studies, spent 2 months on a breathing machine for possible sleep apnea causing migraines. My family doctor, my neurologist, everyone I saw was unable to determine the cause of my migraines.

THE GOOD NEWS is I was referred to an UPPER CERVICAL SPECIALIST by my old chiropractor. This may not sound believable but my headaches have decreased to about 2-3 per month since I've been treated by my new chiropractor. My old chiropractor was the type who did a complete adjustment on my spine/hips and cracked my neck both ways every time I visited. The upper cervical specialist focuses on C1-C2 vertebrae and uses calculated heat readings to determine where there is inflammation and there is no twisting/turning involved. Look up upper cervical chiropractic on google and see if these treatments will help with any of your headaches. It has helped my situation dramatically and I will continue seeing this specialist and probably come off of the topamax in the next few weeks.

I've been taking Topamax now for about 6 weeks, and my headaches are still just as bad as ever, except now I have headaches with the thrill of numb fingers, confusion, weight loss, memory loss, an absolute horrid taste in my mouth, and now the latest.... my hands feel dirty all the time. Has anyone experienced this?? I just feel like my hands are dirty. I wash them, and a half hour later, it almost feels like there's a film on them, and I have to wash them again. Almost ocd-ish. So 6 weeks in.... Anyone have any advise on how much longer I should give this topamax before I give up on it & try something else? My doc said it should have worked by now if it was gonna - but I have read on here, that it sometimes can take months...? I just don't know if I can take these side effects, AND the headaches for much longer without going NUTS! {grin}
Any advise?