Topamax and doctors

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 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!

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!

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 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 am a 42 year old woman. I started taking Topamax in March of 2008 for severe migraines. The migraines often caused vomiting and for my body to jerk similar to having seizure. I have had migraines for the last 15 years, but prior to starting Topamax I was having migraines almost every day (for about 6 months). My life had come to a stop. I had been through all of the neurological tests, and CT scans, etc. with no results. Topamax has nearly halted my migraines. I have a severe "head-ache" about every 6 weeks now that last 3 days. A huge improvement! However, my doctor had said that I should not be on Topamax long term so I have tried going off of it twice in the last year, each time on the 5th day to be hit with an all consuming migraine. I had come to this website to find out why I should not be on Topamax long-term to discover that many of the other health problems that I have been complaining about in the last year are probably a result of Topamax and the doctor did not ever suggest that was the case. I have TINGLING IN MY HANDS AND LIPS...the doctor thought this might be my thyroid, but that test was normal. I have had REDUCED VISION, the doctor said it is due to age and working on a computer all day. I have had JOINT PAIN which they are treating with an anti-inflammatory and suggested it’s probably the onset of arthritis. I have had WEIGHT LOSS, SHORTNESS OF BREATH, and the PAIN IN THE BACK OF THE HEAD. These are all things that I see others describe as symptoms of Topamax! Wow! I wish my doctor would have told me this so I didn't think there was something else wrong. I WILL NOT STOP TAKING TOPAMAX. Even if taking Topamax meant that my life would be 2 years shorter or something like that, there is no living in that kind of daily pain. But I am grateful to know that the symptoms are normal. Topamax has giving me back my life.

I am 43 , I have been taking TOPAMAX for 3 yrs for migraines 50mg for 1 1/2yrs and then increased to 100mg. It helped for the first 2yrs but, not now... The side effect have took over my life!! All the routine S/E I have heard you all talk about plus, eye pain and more headaches!! Not migraines but, bad headaches! I thought I was having sinus pain...BUT, it never stopped and was daily for a yr. I could barely work! I am a R.N. and I have researched this drug and, talked to many different doctors...unless, it is for seizures I would NOT take it again!! If it seems to help your migraines, be sure you understand there is a trade off!...and it is NOT good in the long run! I felt like I was going crazy..and started feeling so "old"?
I went cold turkey 4 days ago...eye pain/daily headaches GONE!! I do have a nervous feeling, and do not feel hungry and ...I am sure withdrawal s/s.
I hope the "stupid" feeling will go away soon...feeling more energy already :)
I use to love this med...now I hope I do not have any long term memory effect ect... sorry if I misspelled any words ....the TOPAMAX you know!!LOL!!
Good Luck to you all!

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.

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've only been taking this drug for two days - 25mg in the evening - and I've already got side effects. I get tingling in my fingertips, and all down along the bottom of my fingers. I've been feeling nausea as well, and writing this, my brain feels a little blocked and slow. I also think I'm losing my appetite, which could be a good thing, considering that I do need to lose weight. But I don't think it is worth it if I end up getting side effects like the ones that have been posted by other people.
I'm a writer, and I cannot afford to lose my memory, or suddenly not remember how to spell words, or to communicate effectively. Should I stop taking Topamax?

Hello-
I am here to share my story about topamax in hopes that others may read this and not have to go through what I did. I went on topamax for the prevention of migraine headaches. It worked great to prevent my headaches but gradually I could not talk, I stuttered severely, and I have memory and other cognition problems. At my doctors recommendation I stayed on the medicine for about 6 months because he assured me that the stuttering would go away. I was in such awful pain that I agreed with him. Needless to say that 6 months was not me. I couldn't talk and I couldn't think. Now when I think back on it, I wish I had just endured the pain. When I went off of the medication I still stuttered. It was not quite as severe but it was bad. It effected my work, my personal life, and daily menial tasks. I could no longer communicate. I was devastated. My doctor was puzzled and said that he had never heard of this before. So to make a long story short I went to a speech clinic, bought casa futura techs small talk device, and tried some anti-stutter meds. My speech now, 2 years later, is much improved thanks to the smalltalk but guess what,? I still stutter. Manageable and not very noticeable to others at times but my speech has not returned to pre-topamax status. I looked into sueing the drug company to bring awareness about this issue but did not get much positive feedback from attorneys. IF YOU ARE ON TOPAMAX AND ARE STUTTERING, STOP TAKING IT. IT MAY NOT GO AWAY WHEN YOU DISCONTINUE THE MEDICINE. It is not worth it. You cannot put a price on speech. I don't care what the physicians desk reference says, what your doctor says, what the corrupt drug companies say. I know my experience and it has been a catastropohic effect from topamax. Find a different med if you have speech problems! Please, for your own sake. Thanks for letting me share my story.

I've been on Topamax for almost a year. I've had auras for years which were misdiagnosed as hypoglycemia episodes, then started having grand mals after detoxing from alcohol (I'm sober now), continued to have them in sobriety (I guess I messed up my brain from alcohol). I tried Tegretol but it made me groggy. Anyway, a few months into using Topamax I stopped sweating completely and got the numbness and tingling in my extremities, which drives me crazy. I also have trouble with urination, I've been put on water pills. I live in a desert climate and during the summer had bad problems with overheating, had to drink so much water that I had trouble with water retention and my electrolytes got messed up. I had no idea that it was the Topamax--the doctors put me through multiple blood tests, I discovered it might be the medicine by doing my own research online. I'm tapering off Topamax and trying the Low Glycemic Index Treatment to see if I can be off meds and not have auras because I don't want to be on seizure meds if I can help it. The withdrawal is pretty bad--anyone else have the problems with no sweating and wicked withdrawal?

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.

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

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

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

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 was given topamax and I dont have seizures or anything. I have PTSD, Depression, and Panic Disorder. I was all over the map, having violent episode, and no memory of it (which was dissociation). They put me on this while i was in the hospital, and I became so non-functional it wasn't funny. I have a degree, grad school, and am 1/2 way through a masters, so I am normally well spoken rationale and well thought out. I was having trouble finding simple words. The effects came on immediately. My memory and cognitive abilities have been permanently affected. I was on for a year live in a outside a small city, and have no real option for other doctors. Not to mention..I found out that this drug has a high rate of users getting depression and in particular at risk for suicide. That was what happened with me...prior to taking it..Then they put me on it?

Trouble seeing, cognitive abilities, memory, depression (was already depressed, and suicidal, but I think it was counterproductive to the anti-depressants)

Is their any action against 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!

After taking Topamax for six months, I found my self different person.... I started feeling this way just in the first few weeks after I started the medication, but the simptoms incleased with the time....Anxiety, nervousness, panick attacks, negative thinking and depression....crying, making up problems from nothing, hair loss also....I decided to stop it, slowly and without any concequences I thought I am out of it....But just a couple weeks I stop it is I noticed some red spots on my skin on the lower legs, soon they became more and stronger..... Two months later I was in abnormal stress that I am going to be sick from a terrible desease... Read so much on Internet.... I can explain how terrible I felt and even though I did blood tests (everything was in normal range!!) and spoke with so many doctors, nobody could tell me what exactly is wron with me. One Dermatologist named the skin problem as Progressive Pigmentary purpura and gave me a cream for that. Thanks a lot for that because the spots started desapearing, but it may come again.... nobody knows for sure.... I think this is another side effect of Topamax, that nobody had before..... Please tell me if somebody else had the same situation... I will feel much more relieved....

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

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

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

I took Topamax for only 4 days. I ended up in the ER on Feb 22nd because I felt like I was going to pass out, getting dizzy, couldn't concentrate or think, numbness, rapid heart beat, shortness of breath and this was intensified by anxiety from all this stuff going on. I stopped taking it immediately. I have had episodes of these same side effects since then. I had these side effects last week and missed 3.5 days of work. I have been doing pretty good this week but today I had to leave work because the same side effects came back. I had to have someone come pick me up form the side of the interstate half way on my way home because it got so intense I could not drive. My doctors have done blood work and I am waiting for the results.

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

I have been on TOPAMAX for over a year and until recently I didn't realize I was suffering from any side effects. It helps the content headaches and the weight loss is great. In the past six months I have been suffering from severe chest pains, you would think that it was a heart attack. The doctors can't seem to figure it out. After the help of my family doing research, we've found that TOPAMAX DOES NOT mix with METFORMIN for diabetics or LAMICTAL for bi-polar or seizures. Why don't the doctors or the pharmacist warn you about this kind of stuff. I have went from a fairly healthy energetic person, to someone that can even get up and go to work. I have 2 to 3 attacks a day and each one drains me more and more. It is not good for my mental well-being, and I am uncertain if it will have any long term effects or damages on me. It has not been proven that this is the cause of my pains after specialist to specialist and many more to come, but I am positive it has a lot to do with it. I just don't want to hurt any more.

I am also experiencing hair loss and have been on Topamax about 2 months. I had no idea this was a side effect. I initially lost weight which was wonderful, but then my weight dipped so low my family and friends thought I was anorexic. I was finally wearing a size 3 pants. I normally am in size 8's. I am on it for bi-polar and to help with binge-eating. But I cannot deal with the hair loss. I don't think that being skinny is worth losing my hair for. No other meds have helped my depressive moods without making me gain weight and at this point I just don't want to take any drugs. I would rather try some therapy...that has become less common. The doctors just want to give you a pill now-a-days.

I'm a 26 year old female and I've been on Topamax since March 2007. It has completely gotten rid of the debilitating headaches I experienced 3-6 times a week. It also got rid of my anxiety. I got my life back, my antidepressant kicked in at the same time. I experienced all the usual side-effects, tingling hands and feet, forgetting words, memory problems, loss of appetite, but was COMPLETELY pain-free. I still am. However, I never remember anything now, forget whether or not I did something, paid my bills, etc, lose things constantly, and I have lost about 20 lbs. Not good. I look anorexic. I have bones sticking out. Eating is hard. I forget to eat and drink all day and food is just unappealing. I feel fuzzy and stupid and slow. Not sharp like I used to be. It has killed my confidence and self-esteem. But I was wondering if any women out there got yeast infections while they were on Topamax. I've had one monthly since I started it, and my doc said it's a rare side effect. Oh yeah, I've had mild hair loss and mild to moderate acne now. This drug, it is such a 50-50. Living with chronic pain, those headaches were awful. But doubting yourself is awful too. Anyone have similar experiences?

I have been on Topamax for a little over a year. I've had most of the side effects; tingling, numbness in the fingers, dry mouth, forgetfulness, and weight loss - love the weight loss. All the side effects have sort of slowed down as I've been on the medication longer. The weight loss has slowed and I've even began to get my appetite back- I'm afraid I'm going to start gaining weight now! I've lost about 40 pounds and I needed to lose it, so that was wonderful. I've had a very hard time losing weight all my life so this was wonderful.

I was addicted to Coca Cola and this med also helped me kick that habit because I lost my taste for the carbonation.

Does anyone know if the weight loss usually evens out after about a year or a year and a half? I need to lose about 30 more pounds and was hoping that I would continue losing weight!

Anyway, I was on the Topamax for headaches and it has completely helped that! It has truly been a God-send for me. Other than monthly hormone headaches, I don't get migraines hardly at all!

I am wondering about having my doc up my dosage for the weight loss aspect????

I was prescribed Topamax several years ago and stopped because of the forgetfulness and trouble concentrating. The words I was thinking were not what was coming out of my mouth! I started to think I was losing it! I've been seeing a different doctor now who has suggested that I try it again (for migraines) and I guess I just didn't remember how bad it was, so I agreed to try it again, starting out at 25mg daily for the first week, then up to 50mg for the second week. As soon as I increased the dosage to 50mg, I developed a severe itching on the palms of my hands and the soles of my feet that just won't stop! I stopped taking the medicine two days ago, and I'm still waiting for it to go away (although it has improved slightly since stopping). There are other alternatives...just make sure each of you listen to your bodies and don't let doctors talk you into something that makes you feel bad. Only you know how you feel!

Ive been on Topamax for almost a year now. I'm currently taking 150 mg. I have the normal side effects. the bad metal taste all the time. confusion, foods taste bad, weight loss. I have recently have been getting very depressed. also in the past year I've been having stomach problems. everything I eat makes me sick. Doctors don't know what it is. I am starting to think its the Topamax.

I am going to begin taking 25 mg of Topamax at bedtime tonight. After reading all of these posts I am a scared. I was prescribed Topamax for bipolar disorder. I am currently taking Lamictal as well. I always gain weight on psychotropic drugs and need to lose about 15 lbs (all of which I have gained over the course of being on Lamictal). Any who-my psychiatrist said that this medication may help counteract the weight gain I have experienced. Although I do not consider my self an overeater now. I do hope that it helps me to not like the taste of sodas though. I am addicted to Mt. Dew and caffeine, which I wouldn't mind stopping. Anyway, I am supposed to increase my dosage by 25mg per week until I reach 75mg per day. I am also supposed to go back and see my doctor before I increase the dosage beyond 75mg. I just hope I do not have the horrible side effects I have read here. Some of them I know I can deal with especially if they are temporary but the anxiety/depression/shortness of breath/lack of energy/morbid thoughts are the main ones that concern me. My psychiatrist said that with this medication I should drink plenty of water. He said that it could cause headaches and other side effects if I'm not sure to drink plenty of fluids with this medication. So, I am planning on hydrating myself really well today before taking it this evening. I'll post back and let you know how the side effects are going. Is anyone else on a combination of Lamictal and Topamax or on it for bipolar disorder? I'd like to hear more of your experiences.

Have been taking 400mg of Topamax for 7 years for severe chronic pain condition. Currently experiencing some new issues. Originally had only wonderful things to say, never had any complaints and thought Topamax was doing it's job for me. Tried going off once after developing kidney stone (thought was only side effect), but new med made liver enzymes escalate. Doctors just exploring which of these troubles may/may not be attributable to Topamax. Currently taking several other meds, as well. Which came first, chicken or egg?

I had been taking topamax for 4 years for complex migranes and then stopped cold turkey after feeling like there was a tight band across my waist and watery diahrea and soreness in lower back , burning itchy pain..... went to the emergency room 14 times for them to tell me that I was crazy. I had a feeling like water was running in my head, normal cat scan of brain. water feelings throughout body... they still come and go but last a couple of seconds.... feels like sensory or nerve damage of some kind.... don't know if this is a side affect or not..... Doctor finally is getting something done. she checked my heart becasue I have MVP... and I am shedualed to get a mri of brain... I have a herniated disk in lower back, scoliosis, degenerative disk disease.... nuerologist checked for nerve damage due to herniation. won't hear back anything on that till after mri of brain. won't hear back about the heart till april.... Just found out that I am borderline hyperthyroidism... and the doc is sending me to a specialist. thyroid is inflammed and big.... My bones are crackly and pop alot and sore.... The water feeling and burning and tingling hands and feet scare me alot but I try to not think about it... Try to stay positive.. I am only 29.... I feel like I am 70 sometimes...... Does anyone have these symptoms after taking topamax...????? Yes I do have the thinning hair but that could also be the thyroid... and fatigue... problems sleeping and hot flashes. palpatations..... any help would be nice... Thank you,,,, love and light to all, jess

I have been on 100 mg of topamax twice a day now for over three years. Most of the early side effects have worn off like soda tasting bad and the memory loss. I never had any hair loss. Also the weight loss has stopped and I did gain it back which really stinks. Anyway, the reason I was looking, was that in the last several weeks, I have been suffering horrible body aches and joint pain. My hands and knees hurt very badly. I am 39 years old and hate to think that arthritis has set in so quickly. And I know that I can't have the flu with no other symptoms and so often. Does anyone else have these symptoms? Also I wonder why these could have started after so many years of taking it.I have tried to wean myself off in the past and the migrains came back full force.

Been on 200mg. tpamax about 6 weeks. Problem swelling of the legs and tingling in toes they sometimes turn blue. Is this a side affect of topamax or something else. Doctors have no clue what the problem is any suggestions on what to do.