Topamax side effects

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'm a 41 year old female in very good health- other than the obvious migraine problem that I have. I have been on topamax for 3 months and am now tapering off of it. I have had all of the side effects that others have experienced to the point that I can't continue taking the medication. My memory is horrible. I can't remember simple things, which is really causing problems at work. My mood is dull and lifeless, and all I want to do is, well, nothing. I'm not a big soda fan anyway, but now it tastes really awful. I noticed that almost immediately. And once in awhile I crave a coke, but can't drink one because it is nasty!!!
I have lost about five pounds, but I don't think I will lose any more since my appetite has returned. That's o.k., because that wasn't my goal anyway. The tingling in the hands, feet and face happens almost daily and feels like little tiny needles being stuck in me. It's actually quite painful sometimes. And, I have noticed blurriness in one of my eyes. This drug has not helped my migraines. We're trying something else. But either way, I would get off of this drug. It's not worth it to me. If you are considering it, I would think twice.

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've been on Topamax for about a month now for daily headaches/migraines with 50mg/day and will be moving up to 100mg/day in the next few weeks. So far I have noticed the tingly hands and the nausea but the worst is the dry lips and how every beverage tastes either flat or odd. The only thing that tastes good is water and I can't get enough of it because I am always thirsty. My urine has turned a bright yellow, which I noticed no one else has reported so I'm a little concerned about that. However the headaches and migraines due seem to be improving so I'm keeping my fingers crossed!

I am 25- been taking topamax for the last 2 weeks. I've already lost over 6lbs but have frequent diarrhea. My other side effects are: inability to concentrate and track (very bad as a therapist, poor clients...), irritability, and every carbonated drink is FLAT!!! I will see where this goes from here, if it keeps on its over and i'm done with this.

My experience with Topamax was unreal. My doc gave i to me for anxiety/depression/weight loss. The weight loss began working right away but so did the disaster. By the time I had been on Topamax four months I was fired from my job, having an affair with my husband's best friend, spending $1000 on a credit card no one knew I had and spent 10 days in a psychiatric ward. There they determined that the Topamax had made me manic. A feeling of unreality had set in along with an intense feeling of well being, and aggressiveness. I am putting my life back together now after getting divorced, finding work in a new field, and trying to repair the damage done to my relationship with my kids.
My best friend called me tonight to tell me that her daughter who is also taking Topamax has become almost anorexic, is also getting a divorce, is now on medication for heart palpitations and will not speak to most of her family. It IS dangerous!!

I was put on Topamax for migraines about 4 1/2 yrs ago. I only took it for about 2 weeks. I was already under weight when I started taking it. I had horrible side affects. I could not even drink water without getting sick to my stomach. Every thing I ate soon left my body. I lost about 20 lbs in that 2 weeks. I had extreme fatigue. My mind seemed to be gone. I felt like I was crazy. My drive to work was about 25 minutes. I would get to work and forget how I even got there. I could not carry on conversations with people. My best friend got so worried that she stayed on me until I went back to the doctor to tell her my issues. She immediately took me off Topamax and switched me to Depakote. Depakote worked great but I gained so much weight that I had to buy an entire new wardrobe. So, I stopped taking it on my own and decided to just deal with the migraines. As much weight I have put on, I wouldn't mind getting back on Topamax and using it as a diet pill.

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 have been on 50mg of Topamax for the 2nd time for about 8 months. This time not near as much weight loss but so many more side effects. I have had 3 kidney infections and just found out I have an ovarian cyst which is now being linked to this medication. It keeps the migraines away but I am not sure if the other pain is worth it, has anyone had any luck with other migraine medications? This had been the best for keeping them away but now I am at a loss as to what to do. A little toe and finger tingling I could handle....cyst that make me double over in pain, NOT SO MUCH!

Great drug until my hair started to fall out! Lost 55 lbs and pretty much had no migraines which have been with me since I was 12...I am 48. If it was not for the loss of my hair, I would still be on it.DEALBREAKER! I have been off for about 3 weeks, but the hair is still falling...I hope it stops or I will be bald by Xmas.

I have been on topamax for about 7 months now for migraines && im about to get off of it. Im 18 years old and "trying" to do college but ive had so many side-effects its crazy. I cant go to the bathroom w/out taking laxatives cuz i just cant go ne more i literally have to take something everyday or i will be stopped up for a week or more. Ive been depressed and my anxiety has gotten worse.I take 150 and they want to put me up to 175 but i refuse because ive heard of people losing their hair taking it especially when they have a b12 deficiccency...which i have. I have horrible mood swings i can be happy one minute then sad or mad the next and i never used to be like this. Ive now started getting my migraines back so im stumped on what to do. I cant word things right....i was trying to say i didn't like something and instead it came up "im not to high"... yea so its deff a crazy drug but it can work for others and not. Not for me!

Been on Topamax for almost a year. My dose was 150mg once a day for alternative treatment for chronic depression. I am also on Effexor and Lamictal. The tingling in the toes has lessened but not gone away. I have severe thirst all the time. My body seems to overheat easily. I lost 20 lbs but i was doing weight watchers and had just had a baby so its hard to give all the credit to Topamax. I definitely feel dumb. Words come and simply float away out of sight. My memory is extremely affected. I can fight with my husband and by the end have no idea what I had just said. Feel quite foolish. I am now titrating down and off by 50mg every 4 days. I am down to 50mg and have not had a good night's sleep since reducing my doses. My brain just turns on in the middle of the night. I am also pretty nauseated at this lowest titration. I just gained back 6 lbs but eating chocolate doesn't help either. I seemed to be able to keep my weight at 140 lbs no matter what i would eat. Not so anymore. Always trying to find the faster, easier way toward staying thin but it always comes back to that same bottom line. I have to discipline myself boooo.

I am on day 9 of Topamax. I have Depression and ADD the is controlled by 300 mg of Wellbutrin and 30 mg of Adderall daily. I always felt like this drug regimen was working but I was still having some days where I couldn't shake the blues. I saw my prescribing doc and he suggested Topamax. He started me on 25 mg and in a few days I will increase to 50 mg where it will stay if things go well. I am a 34 y/o woman, married and a preschool teacher.

So far, my side effects have been EXTREME thirst. It's so bad that my lips are actually a little chapped. As far as taste goes, things don't necessarily taste bad to me as much as I just don't have an appetite at all. I have lost 5 pounds in 9 days! However, all soda tastes flat to me. I have tried everything and it's all just flat. In the grand scheme of things, who NEEDS soda? My husband says that I have been a little sensitive lately but, I have always been an overly-sensitive person so, I don't know how much faith I put into that. But, as far as my cognitive abilities, balance issues, and energy? I feel more energetic than usual and I don't feel at a loss for words at all. I also feel even more patient with the children in my classroom. Oh, I have been nauseous off and on as well, which contributes to my loss of appetite.

Now, my dosage will increase in 5 days from 25 mg to 50 mg and I hope that I don't feel different after that increase. When and if I do, I will be right back here posting. I would like to thank those that have posted. It has given me so many good things to look for and has put my mind at ease a little. Good luck to all and best of health!

I was on topamax last year had horrible side effects but the worst was the bruising... I would just bump my knee or maybe wrestle w my kids and soon after there would be actual finger marks!!! I looked abused... I had something dropped on my forearm and had to go to the hospital it was so swollen and black they thought it was broken! only after going off of topamax did I realize that it seemed to be from the drug... my doctor and pharmacist said it couldn't be but just because it wasn't "on the list" of problems it therefore couldn't have been from Topamax... Never have that problem OFF of the drug...

i am getting back on topamax for the second time....the first time i lost a tremendous amount of weight. i am on it for migraines...working my way up to 200mg from 50mg. I am experiencing that memory lapse (having something i want to say on the tip of the tongue) all soda taste flat. Nausea and menstrual cycle is changing up. Been on meds 6 days so far lost 2-3 pounds. I have seen a lot of people say they have not lost weight the second time around. Is there anyone who has? I have definitely seen a change in my appetite at week one. I had the tingling in toes and feet the first time around but nothing yet. first time around it lifted my mood and I had tons of energy. It helped with my migraines that i had everyday for a year. Lost my insurance when I lost my job so now I have been able to start up again.

I took Topamax 50 mg for about 2 months and experienced a change in menstrual bleeding. I wonder if Topamax effects progesterone levels. I had light spotting 5 days before period due for both months. This medication also made me very depressed and angry. I quit taking it about 5 days ago and felt the depression lift on the 2nd day after stopping the medication. This was my 2nd round for Topamax. My first time taking it I worked up to 100mg and lost 15 lbs in just a few weeks. I had no appetite. I also go very sick with a respiratory infection and dry coughing. I had menstrual problems with the first round too but didn't figure out if may be the Topamax until my 2nd round. It did help my migraines significantly. But I'm uncertain how if potentially messes up menstrual cycle. The warnings for the medication says "menstrual problems" but doesn't go into detail. Anyone else have menstrual problems.

I was put on Topamax for extreme migraines about 6 months ago... Started up slowly with 25mgs to 50mgs to 75mgs daily and now I am taking 100mgs (50 in the morning and 50 at night). Topamax did the job in taking my everyday headaches away but I still continue to get the very painful and extreme migraines that last 304 days.

I did have extreme tingling in the hands and feet for the first month but that soon tapered off. As far as my appetite - I never really lost that and my weight has stayed the same.

After reading all of your posts I can take a deep breath and believe that I am NOT crazy. I have begun to think so because of Topamax. I am constantly anxious (and being an over anxious person to begin with this is not good), my mood swings are horrible - I am a total bitch to my boyfriend, and my mind just does not seem as clear as it once was - struggling to come up with the simplest of words....

I feel like Topamax has made me very paranoid and has set me into a depressed state. It is just not worth it. There are many OTHER drugs out there that can deal with migraines - and trust me I know they are painful, but I am much more willing to get myself back than continue to deal with these side effects for the sake of getting rid of a migraine (which isn’t always the case for me).

After switching doctors (from the one who had put me on this drug to begin with) - she is helping me wean off Topamax and wants me to explore other options.

Has anyone experienced weaning off this drug before - how are the side effects? And will I ever be myself again?

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 stared Topamax about a month ago and at first I was completely out of it. I couldn't remember anything to save my life, my speech was slurred and my brain was just in a fog...and I'm only 25. After about 2wks that eventually went away, however, I still cannot drink carbonated drinks, that taste flat and have a tangy taste to them as well, its gross. The one side effect that really bothers me about this medication as well is that I'm always nauseous. I haven't weighed myself lately but I definitely have lost weight because I never want to eat anything. The nausea seems to be more of an issue than the migraines. I was getting them about 3-4 times a week, now I get them about 1-2 times a week. By week 4 on the medication I started to break out on my face/chest/back really bad too, and I haven''t had acne since I was a teenager. The other odd thing is I feel like I've constantly had my period while on this medication too. Has anyone had any of these side effects as well? It's only been a month so I figure I will try a little bit longer and see if it helps or if I have to go up a little bit more in dosage if it helps but at this rate I'm thinking I may just need to try a different medication. The other bad thing is that I have become extremely agitated lately, which I'm sure my poor boyfriend can agree with because he gets the worst of it. I feel like my personality definitely has changed on this med...

After after a few months on topamax I went on lexapro for my mood change. I lost weight, had the metallic taste, loss of words , stumbling and more. I have weaned off because I could not stand the side effects. I still have migraines frequently. I truly believe the topamax has permanently changed my personality. I cannot get off the lexapro. Also I believe I have some kind of kidney problem left from it. Is all this possible?

My good friend is on Topamax and Trileptal for epilepsy seizures. She has developed severe paranoia. We cant call her on her phone or send her an email as she believes that her phone, computer and house are all "bugged". I have written a letter to her doctor to let him know what is occurring in her personal life as Im sure that he is unaware of her behavior. She lives in a world of fear and her medication needs to be changed.

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.

Hi. Im a nurse who was put in Topamax for mood stabilization in January of this year. Tapered up from 25 mg a night and now am on 200 mg a night. I have lost ZERO pounds although I have no appetite and cant stand the taste of a soda. I just wanted to share my nightmare. I have not had any tingling or numbness, which is a main side effect.

I do have a terrible metallic taste in my mouth and my mouth never feels clean. YUCK. Sodas flat. My personality is flat.. I am exhausted. My friends say the person they knew is gone, my appetite is gone.

My back hurts all the time like it's very tight in the kidney region....I cant spell, I cant remember yesterday, I sleep all the time when Im not working...I drop things, I don't remember what I was doing 10 minutes ago, I feel like I am on the outside of my body looking in.

My vision is blurred somewhat at times.

I work for a neuro-psychiatrist. I have decided to taper myself down. I don't think it has done anything but made me so flat I am not here anymore. Who wants that? Looking back, I was not in need of mood stabilization but a vacation.

The only thing it has helped me with is it has stopped the desire for Klonopin which is normal for Topamax. It works on the receptors in your brain that make you crave benzo's. I took my Klonopin as prescribed.

Im thinking I want my old self back. I miss laughter. :(

I've been on it for just over one year and I have had great success with Topamax for my chronic migraines! I am at 200mg a day. I use to wake up with migraines in the morning and that has been greatly reduced. I use to never know when they would hit me and now I can figure out when which is usually hormonal - during my period. Before we (my neurologist and I) settled on the right dosage, we kept bumping up in 25 mg at a time and i would have side effects ... unpleasant (smelly gas, tingling fingers, other stuff i don't remember anymore), but after a few weeks, the side effects would go away. Now I don't have any side effects. I did loose weight, but only 5 lbs. I made a conscience effort to eat right and drink plenty of water because I read the forums about the bad health effects of the drug. I do loose words sometimes, but its a small trade-off for the migraines. Now, if I could just find something that would tame the hormones... Cheers!

I have been taking Topamax 75mg twice a day since the end of April 2009. On some nights, just before I fall asleep, my mind begins to race. These racing thoughts continue for an indefinite period until I get up with a headache. I’ll take something for the headache, read for about a half hour or so and then go back to bed. Now I sleep to morning. When I arise, I forget the thoughts that had raced through my head the previous evening, which is good, because many times these racing thoughts are angry thoughts. Now. For the rest of the day, I am wasted, like I had not had a good night’s sleep; like I had been very active during that time that my mind was racing.
Note that these ‘racing thought’ episodes do not occur every night, nor immediately upon bedtime. They sometime occur if I rise to use the bathroom. They may not even be related to Topamax. They ONLY started right around the same time as I started using that drug.

I've been on 75 mg of Topamax twice a day since the end of April 2009. While on it there would be nights when, just before falling asleep, my mind would begin to race. All too often the thoughts would be angry thoughts at persons who hadn't really wronged me. These racing thoughts would continue for sometime until I would finally get up with a headache. I would take aspirin for the headache and read for a half hour or so, go back to bed and sleep soundly the rest of the night. When I awoke the next morning, I was wasted, as though I hadn't had a full night's sleep. - like the time my mind spent racing was spent fully awake. And, should those racing thoughts been angry thoughts, they would be shown to be totally unfounded in the morning. Note this does not happen every night and does not necessary happen at bed time. It may occur if I arise to use the bathroom during the middle of the night. It also may not be related to Topamax, but it ONLY started after I began taking that drug.

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!

Ive been on Topamax since for 3 months for migraines and have lost 30 pounds, I simply am not hungry. At this point its not worrisome as I did have a little extra weight to lose, but I cant keep it up forever. My doctor lowered my dose from 100 Mg, to 75 mg, which I split and take 50 mg in the morning and 25 in the evening, it has not made a difference. I had a tremor prior to Topamax, which my neurologist thought would be less with the Topamax but in fact it was increased, so I had to start another drug, Mysoline to counteract the tremor. Ive been on that for about a month and it seems to be helping some, Im at least back to baseline. I recently learned that my potassium level has decreased which is causing muscle cramps and can cause many other more life threatening problems, so please watch out for that! It is a listed, albeit less common side effect of Topamax. (0.4%). You Dr. should have checked basic metabolic panel (BMP) and should check it regularly. Oh, and IM MIGRAINE FREE!

I have recently started taking 100mg of topamax daily and the tingling in the bottom of my feet has been painful and keeping me awake at night. I have found something that has been very helpful......rubbing Tigerbalm muscle ointment really does the trick, albeit temporarily. By the time the effect of the balm wears off, typically the tingling has subsided. Hope this helps someone else

I became extremely ill after beginning Topamax. A trip to Urgent Care started me on Z pack for URI and gave me cough medicine. Cough along with incontinence and exhaustion became more severe over 3 weeks. Wheezing worsened but chest xrays done by my PCP showed no pneumonia. I have asthma and allergies which were treated by my PCP with Singulair, Advair and a rescue inhaler with no success. It wasn't until I started thinking about possibility of Topamax playing a part and doing research myself that the puzzle was solved. 3 doctors and a pharmacist knew nothing about the affect this drug has on asthmatics. I was miserable for an entire month due to this drug which could have been completely avoided if doctors were better informed. I had to convince my physicians by taking myself off Topamax in order to alleviate my symptoms. I hate to think where I would be today if I had continued taking the drug and had not found this web page!

Those of you taking Topamax, you may want to talk to your doctors about trying Zonegran. I took Topamax for "dizzy migraines" and although it worked I had the same side effects you are all mentioning. Although the Zonegran did make me sleepy, if I took it at night I was at least able to function the next day plus no tingling hands or feet which on Topamax was a nightmare. If you decide to stay on Topamax know that Vitamin C helps with the tingling hands and feet very much (my neurologist told me this) and it truly works!

Well, my Fiancee (Sandra) started taking Topamax a few months ago. Her side effects have included: loss of energy, tiredness, tingling in the feet, nausea, chest pain, appetite lose, rapid weight loss, and a severe decrease in her sexual drive. The worst of the side effects is her sudden and unpredictable mood changes. She verbally assalts me and her children all the time. She is aggressive and picks fights over anything and everything. I love her with all my heart but I can not live like this. So bottom line, Topamax has gotten rid of her migraines and/or decreased their frequency and severity. And the cost of that benefit is the destruction of the relationships with the people that love her most.

Last night I took my first dose of Topamax: 25mg for migraines. I didn't expect to feel any side effects with such a low dose but I feel very tired but restless at the same time. I feel like I should law down and sleep but I can't stop myself from shaking my legs or twinkling my toes. It's the only thing I've noticed so far. In six day I up my dose to 50mg a day. Wish me luck.

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've been on Topamax (100 mg 2x per day) for 5 years as mono therapy for epilepsy. I switched over from Depakote which was a *nightmare* and it has been great, no seizures. I've had the pins and needles, diminished vocabulary and memory, and intermittent eye twitching but this week my right eye (why is it always the right eye?) has started twitching almost constantly. It is frightening and embarrassing and I am not sure what I should do.. I guess it's back to the neurological drawing for me because I am not sure why it's happening now. Has anyone else had the eye twitching occur after long term use?

This is not a medication that should be given to asthmatics. My son was started on this medicine for frequent migraines, >2 per week. He has asthma and is very small for his age 100lbs. He was taking the smallest dose of 25mg per day. He only took the pill twice and was already having shortness of breath and beginnings of sinus infection and upper respiratory issues. I really don't think this medicine should be prescribed to anyone with asthma.

I was prescribed topiramate (it finally went generic- I've been trying to get this med pre-authorized by Medicare for years) a couple of weeks ago for off-label use related to bulimia, more specifically, for weight loss. I also take lamotrigine, an anti-convulsant, for bipolar disorder.

I began at 50mg/day for 2 weeks then titrated to 100 a few days ago. The side effects I've noticed so far are opposite to most of the ones noted here. I am not lethargic or sleepy at all. It's 3:10AM and I am wide awake, as I was last night. I had an excess of energy today and plenty of words to express my ample thoughts. However, my brain working in a sort of backwards fashion, these are the exact sorts of symptoms that signal mania and are extremely dangerous to somebody who has my condition, so I am on strict notice with the doctors and will most likely be either taken off the topa if this continues for another day or two, or put on an anti-psychotic as a preventative, which of course would be counter-intuitive to the weight loss idea as atypical cause gain. You can see from my writing style of run-on sentences that my thoughts are a bit jumbled.

Also- numbness in the heels, irritability, neck pain, itching.

I shall try to post back if I don't wind up in locked ward :-P

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 16 years old and i have been taking topamax for about 5 months now. I am taking 200 mg a day as a mood stabilizer. I have experienced nothing but horrible things on this medication such as, memory loss, inability to considerate in school or anywhere for that matter, loss of word for example stropping in mid sentence a lot trying to figure out what in the heck i am talking about, also i lost weight on this when first taking it i was 130 lbs now i am 110 lbs, and not only does it not make me hungry but when i eat after i experience nausea. This medication is horrible.

I just found this post by accident. I also am on Topamax 200mg daily. I have tingling in my feet especially in my heels. I find myself being very forgetful. I will be doing something and completely forget what I was doing. I am also having speech problems. This is very frustrating to me. I don't know that I could ever go off the medication. When I first went on the medication I lost a total of 80lbs. This was very scary. It seems now that I can eat whatever I want and not gain a pound. This is weird. I heard that the FDA is trying to approve the RX for weight loss. Just wanted to post my problems too.

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.

Hello to All
I'm 33 yr old female who began taking Topamax 2 years ago, after diagnose with Pseudotumor Cerebri,(elevated intracranial pressure),doctors still don't know why i have PTC, it is common overweight women, certain medications, secondary to disease, which all did not connect with me as I was not overweight, have never taken any medication, other than OTC allergy or pain relievers, and all secondary diseases I was tested, and nothing, with a history of migraines headaches, that suddenly became unstable, with vision disturbance I was put on diamax, it lowers elevated intracranial pressure, finally help for this horrible headaches, , I had a side effect it elevated my glucose levels to dangerous levels, due to elevated intracranial pressure I was hospitalize, undergoing several lumbar punctures and eye surgery for decompression of my optic nerve, doctors still unsure of my diagnosis, but telling me I must have surgery for a spinal fluid shunt, I was terrified, I decided to try and consulted with another neuro ophthalmology who had a totally different opinion, I switch doctors and this is when I was prescribe TOPAMAX 25MG to start, now I'm taking 250mg daily, at first the fact that I was going to be OK, that I can continue my life without shunt, no more lumbar punctures, the fact I was not loosing my eye sight, I can go running, rock climbing, after been told I couldn't, I was convinced TOPAMAX was a miracle. The 1st side effects constipation; decreased sweating, drowsiness, dry mouth, loss of appetite I lost about 20 pounds, family friends were really concern, after a while I gain it back, numbness, tingling, I was ok with it, because I no longer had debilitating headaches, had perfect vision, surgery was out the question. and I was stable, but then I suddenly experience seizure, 3 different occasion, no explanation, severe joint leg pain, trouble with speech, bruising, light sensitivity, severe acne, irregular menstrual cycle, vaginal issues, anxiety, heart palpitations, and the worst one yet, the reason I began to search on line mood swings, I'm in the medical field and the people that I work with tells me I'm just getting older, depression, 1st sings of menopause, I'm very active healthy women, with normal daily stress 2 children and 16 years marriage, I have seen my family doctor, had blood work done, and all normal. I have told my neuro about my experiences, and he says is not topamax, my ob says take birth controls it might help, im just lost any one suggestions?

terrible itching and heartburn.

I have had migraines for years and as I got older the migraines got worse. I was having four a month when my doctor started me on Topamax. I was to take 25 mg at night for a week and then increase each week until I was up to 100mg. I never made it 100mg. At 50mg I woke up with double vision. My doctor said the Topamax was so great for migraines that I stayed at 25 mg for over a year. Thats when the side effects started. I had lost of concentration and inability to find the right words. I thought I was just getting old...even thought I was in early stages of Alzheimer. I had mild depression but thought it was from things I was going through in life. Then I notice that my morning urine would smell. I cant even describe the smell just different and I knew something was wrong. I haven't had a menstrual period in over five years but started spotting. Thats when I looked up the side effects. I stopped taking the Topamax immediately. The smell in my urine went away after a few days off of it. I am hoping that my memory and concentration improve gradually. Its not worth the problems it causes. Now I'm looking for another way to lessen the migraines.