Topamax and topomax

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 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?

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

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

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

so ok my headaches got worse

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

so that's 100 mg a day

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

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

I am going on topamax for the second time. I think the drug is going to be the best choice for me, personally. I am on it to treat both, epilepsy and chronic migraines. The first time I went on it, I titrated partially to my dosage (400mg) and had to stop because my potassium dropped dangerously low and I was pregnant at the time. I have since had my daughter and am giving it another go. I am having the loss of appetite, redness and tingling of hands and feet, some irritability. I am up to 100mg now and am titrating up to 400mg. I hope that it will subside after a while. I already don't care for carbonated beverages and you are supposed to avoid stimulants if you have migraines and epilepsy anyways people! So figure it a blessing that you can't drink carbonated beverages that MOST contain CAFFEINE aka STIMULANT!!! HELLO!!! As for the other symptoms, i guess you have to weigh the benefits to the risks. I certainly hope it works for me and everyone else. Last time I took it, it could have caused heart failure. That was a biggie! So I would say, Get your routine labs and so long as you can withstand the side effects and the reason you went on the medication is being controlled...... Thank you topamax!

Have been taking topamax for 4 months and now have hand and feet tingling. major spelling and memory loss issues. My question is Does any one else have HIP PAIN??? I can't think of any reason why I have it now... except for the addition of the topamax.Thanks, TL

Like most of you all I am on Topamax 100mg. I am a 27 year old female that has suffered from severe migraines for over 20 years that would last up to 2-3 days and completely debilitated me. I would bleed from my tear ducts from the extreme pressure and I would need to be in a quiet, cold, closed off room to be left alone until the migraine was gone to continue on with my life. It was ruining my life and taking over my day to day routine. I could never really commit to anything without the constant worry in the back of my mind about a possible migraine until I found Topamax. Now on Topamax I went from 4-5 migraines weekly to 1-2 monthly, it is truly amazing, however there is a catch. Although the medication is wonderful and I will never get off of it at the rate of success that I am at, I do have side effects. I have extreme tingling in my extremities, (hands, feet) along with my face. It feels like they are constantly asleep. I also have noticed the poor tasting carbonating drinks along with my taste buds changing with certain foods that I use to be so fond of. I also have a very smokey haze where it almost feels euphoric if I wake up in the middle of the night. I have horrible nightmares of people that I have not seen in or thought of in years, memory loss and spelling issues-all goes away after 3-4 months of uses. I had shortness of breath, however that subsides as well with the use of the medications along with several other side effects. I have lost over 30lbs that is along with diet, so I can't say it is all Topamax. I have noticed little nodules that have been showing up on my hands since I stared taking the medication that I am in ? about I have a call in to my neurologist to see if he has heard of any such thing. Other than that I love the medication, because if not having migraines is one of the side effects-lol I can handle the side effects. I hope that this will help anyone that might have anything similar to what I am going through. If you can shed some light on my nodule situation please let me know. Thanks

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

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

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

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

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

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

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

I am a 44 year-old woman. I have been taking Topamax for 13 years! I take 100mg at bedtime (would NEVER take it during the DAY--that's ASKING for sedation). I take it along with 400mg of Wellbutrin & 30mg of Lexapro!!! I've taken various doses over the years. It was initially prescribed as a mood-stabilizer for my bi-polar II, and so happened to control my migraines. Happy Days!

When I FIRST took Topamax I remember having the strange feeling of small miscroscopic "fish" (or something) swimming under my skin, across my cheekbones and over the bridge of my nose. I never got a rash or anything. I did not feel that this passing side effect was anything I "couldn't deal with" as the medication stablized my mood without the HORRID side effects of Lithium, Depakote, Valproic Acid, etc!!!

All this time I have done very well and have NEVER had any health problems from the Topamax. I am VERY confused by folks who claim it gave them "mood swings"--as its effect is to make your mood stable!!! I don't understand how that could happen. Also this is a LOT of people having MAJOR effects from VERY low doses of the drug (50- 75mg mostly). Perhaps folks are medication sensitive OR something else is going on as well???

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

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

sd

since starting topamax in may 08, 50mg twice daily, i have had constant pain under my right rib, feels like something is eating a hole straight through to my back where the pain wraps around. also have some trouble breathing, constipation. have had gallbladder ultrasound, hida-scan of gallbladder, endoscopy, cat scan of chest and abdomen and chest x-ray, along with a zillion blood tests all showing normal. no one can find the source of my pain, the only thing is how the time corresponds with my pain and when i started the topamax. can anyone tell me of any similar side effects they have had, is it the topamax causing this? and should i stop. i'm feeling as if i'm poisoning myself. i need help. thank you for anything you can tell me.

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

I just got off topamax after being on 800 mg/day for over a year. Unlike most of you, I used it to treat seizures. Because of the side effects (slurred speech, bad memory, and NO sex drive) my doctor to switched me to Lamictal.

After just one week, my sex drive is back to normal, my memory is better, and I'm more confident in my speech.

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

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 have been on topomax for nearly a year and have many of the same problems you guys have but a new one has popped up on me that scared the shit outta me and no one can seem to figure out what is causing it.
During sex just before orgasm my brain felt like it was going to explode!!
All I could do was hold my head in my hands and roll on the bed. this pain lasted for almost 8 hours. the next day i felt fine and went motorcycle riding and while racing my buddy and while passing him(More Excitement) It hit again and it was all I could do to stay on the bike. Went to the hospital and they did cat scans mri ,mra tests and have found nothing wrong w/my head .So my ? is could this be coming from my topomax??

ok i have been taking topomax for about roughly 7 years. at one time it got so bad with the memory loss they put me on the alzhimers med. that they proscribe for about everyone with alzhimers. i have had clumps of hair fall out so they put in a prescription for hair loss. i once weighed 100 lbs size 0 im 5 ft tall and i am usually about a 7-8 . the topomax i was taking it for my toruretts syndrome and every so often it causes a clich ill have face freezing that will last for and hour to 3 days or make it worse. ill get hives i get aggressive angerd very easily at the drop of a pin and wont eat at all because i forget i forget everything i once stared at a wall for 3 hours i couldn't move my body or eyes my mind went blank like someone shut off the electricity . plus bad acne ( um when i first took it it was like i was getting high with my entire body tingling like when ur foot has fallen asleep even my eyes felt like that) i have sufford some vision problems everyday and forget what and where i was going it has made me have some psychological problems increase
i have now recently stopped taking it i still get rashes i am always cold hair is still falling out still hear a ring in my ears i see things that aren't there like little firecrackers going off in my vision or blackouts like when u get a migraine i am always itching tingly all the time aggravated all the time
but now i eat i have gained like close to 20 lbs but i am more focussed in some things it helps when i am in class to stay focussed but not really because im not used to being so alert but i think i like not feeling foggy anymore

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

I started taking Topamax 3 weeks ago, 25mg for the first week then up to 75mg starting week 2. I am also on Effexor,150mg 1 per day.. I feel good and have had a loss of appetite. My thinking is a little fogged and I must concentrate a bit harder. I started taking this as a pain medication and it works. I am also overweight and know for a fact I've lost. I find myself eating better choices and much smaller portions. My moods are good and I like this medication. Thanks for letting me share ! (:

Laurie

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

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

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 four months for epilepsy and I love it. I do experience some of the above mentioned side effects but my seizures were not grand mal seizures they were absence seizures. so the memory loss thing is a non issue for me, as far as depression, didn't get that one, weight loss; glad to have it, tingling; not that bad; the coldness; really only bothersome at bedtime so I take a bath at night, a really hot bath. Confusion, I was confused a lot because of the seizures so, again don't know which is worse. For me I feel this is a miracle drug. I'm not sure about the abdominal issues that is my only concern right now, that is what I am dealing with constipation and maybe some menstrual issues??

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

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

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

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

I'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????

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've been on Topamax for over a year for hormonal migraines, and it's working great for the headaches. I started out at 25mg twice a day and now I'm up to 100mg twice a day. I've lost 40lb (mostly due to the drug -- but my appetite is starting to come back) and have just recently started experiencing the anxiety and tingling in the extremities. I've always felt I've had trouble concentrating and "finding the word", but I attributed it to lack of sleep because I have two small children. My most recent side effect, however, is most worrisome, which is the reason for my visit to this website. I am experiencing severe abdominal pain, almost constant, and it seems to be increasing. I had abdominal pain and diarrhea when I first started Topamax last year, but it stopped after the first month or so. I'm just wondering if maybe long term use can cause ulcers or other stomach problems. Anyone have any experience with this? I know from experience that Topamax dosages have to gradually weaned up and down, so I'm considering decreasing my dosage to see if my stomach problems will stop. I'm just in so much pain, yet my migraines have almost stopped now with 200mg a day, that I'm reluctant to change my dose.

I have been taking Topomax for quite some time.Tried it several years ago, the mgs were not high enough (only 25mg/day).My doctor didn't really know the prpoer dosage.It didn't help the migraines.My new doctor has me on it again.50 mgs/day.Here's the good - NO MIGRAINES! Here's the bad: Acne at 45 years old, tingling doesn't even describe my legs or face, ringing in the ears, remembering names and places just doesn't happen, I'm eating less but gaining weight quickly,& one last thing- Itchy spots that I would describe as "hot spots" if I were speaking of my dog. Still sticking with it because I don't have the migraines.I tried to slowly take myself off and the headaches came back.What choice is there?

I have been on Topomax for 2 years now at 200 mg. for mood stabilization. I was recently hospitalized for my depression and they upped my Topomax dose to 400mg saying it was the "therapeutic dosage". I went into the hospital weighing 116 pounds and I am 5' 6" tall. I started having diarrhea within a couple days. By the tiime I left 2 weeks later I had gone from a size 4 to a size 2. A month and 1/2 later I had lost 15 pounds, had severe abdominal pain everytime I ate, diarrhea every morning, nausea, and had absolutely no appetite.

My psychiatrist insisted it was not the medication and I went to a gastroenterologist for the full workup- ultrosound, colonoscopy, endoscopy and surprise surprise they found nothing. My Gastro doctor concluded it must be the meds so I started backing down on the Topomax and already the diarrhea has stopped. I am at 250 and up to 101 pounds now. I am taking in over 1200 calories a day but I still can't seem to gain weight. My doctor still doesn't believe it's the Topomax but it all points in that direction. Instead they insist I'm just not eating enough But I make sure to force myself to get down 3 meals plus 2 ensures and some snacks. I still am waiting to get some appetite back. I know some women would love to be in my place to have to try to gain weight but I feel like I'm dying all the time. I have no energy, I can't even get up in the morning to take care of my kids. My fiance left me because he got so fed up with my "sickness" and thought it was all in my head. I have my mother living with me now just to help me take care of my own children and it breaks my heart that I don't have the enery to play with them. I can't see my psychiatrist for 2 more weeks so I am taking my level of medication into my own hands which I know you are not supposed to do but at this point it's that or lie in bed feeling like I'm just wasting away.

Hello, everyone. I didn't know there was a page like this, but I'm glad there is. I've been on Topamax for 3 weeks because the medicine I was on for 2 years didn't do anything and the headaches weren't going away at all anymore; they were continuous. The first week at 25 mg I had the tingling for a day or two, the involuntary muscle twitches, the terrible mouth taste, and the chest pain. All but the terrible taste went away by the second week at 50 mg but I started getting wobbly legs and dropsy. I read an article somewhere where a person on Tomamax called the drug Stupamax or Dopamax and said anyone on it turned into a box of rocks. The box hit me at 3 weeks and 75 mg. I'm not wobbly anymore, I'm still irritatingly dropsy, and I am doing things that only a person with half a brain would do. Plus, my ears have been ringing for two days, and today I feel like I'm in a tunnel and everything is far away. I'm getting ready to call my doctor. On the OTHER hand, I haven't had a headache that lasted for more than a half hour in 3 weeks. So what's best? Going back to headaches or continue to evolve into a box of rocks?

I started taking Topamax 2 days ago and I have already noticed side effects..such as the flat soda...numbness in my arms and face at night...BUT the worst part are the morbid thoughts at night ( I take only 25 mg at night) I have the most bizarre dreams and I wake up feeling like I havent slept for days. I am taking it due to severe migraines which result in seizures. I am horrified after reading some of the posts here. I am wondering if anyone started out with any of these side effects and then as their body became accustomed to the medication did they pass?

I've been on Topamax since just Tuesday, 10/9/07. I find that I get very tired a couple hours after taking it and I have horrible nightmares and very dark thoughts, too. Diet coke tastes so HORRBILE which is bad because I loved my diet cokes, but then again I guess that's good b/c I need to stop drinking them anyway. My worst side effect is that I have horrible mood swings. Is this normal? Is this going to go away over time? Because if not, I'm going to stop taking it now. This is not like me and I am not going to subject my family to this - losing weight is not THAT important to me. Thanks for any help. :(

P. S. I'm taking 25 mg in the morning, afternoon and evening.

I can't believe all of these posts, wow. I was starting to feel as though I was alone with all of the symptoms I was experiencing. I started this drug 2 1/2 weeks ago at 25mg am/pm and am currently up to 75mg am/am. I have really bad chest pain/tightness and mild shortness of breath. As someone else had mentioned, pop is enhanced not dulled, seems as though its like pins on my tongue. I have been forgetting words but not too bad, just for a couple of seconds. The anxiety is the worst, sometimes I lay in bed and the chest pain will increase and I get so axious it feels as though I'm going to die. I went to the ER last night but they did an EKG and told me my heart was fine that the chest pain most likely was not related to my heart. (I'm a 22 year old male and have never had problems with my heart) These chest pains only started after starting this drug. I'm ready to try something else. This was the first drug I was put on for my seizures, my doctor said it could possibly help the seizures/headaches/weight. These side effects are just too much.

I've been on Topomax for about 3-4 months now. I've had memory loss, slurred speech, decreased concentration (I have to re-read something several times to understand it) tingling in the hands and feet, depression, increased anger, loss of appetite, weight loss. I'm now at the point where I have a rash on my leg, severe nausea, and abnormal bleeding. I going to follow up with my neuro and PCP to see what's going on so we'll see. My migraines have decreased from 3-4 a week to maybe 1 a week, so it has been worth it so far so I can function for work and for my kids as a single mother. I've suffered from migraines for about 10 years and can't take the pain no more!!! If anyone has experienced the nausea, rashes or bleeding please reply.

Just one question I have been on this stuff at the beginning dose for less than a week. My eyes hurt, my head is about to explode, I am sick as a dog, I lost 5 pounds, I can't eat, constipated, can't sleep, can't function, ringing in my ears, and the ADD is unbelievable. I am a medical transcriptionist I kind of need to be able to work, no work, no pay. Topamax is going bye-bye for sure but how long till the side effects go away?

Started 50 mg Topomax a week ago and to help lose weight gained from my lithium. I'm already on a mood stabilizer lamictal so I didn't need it for mood - only appetite suppression. The first day I did notice that my taste for diet sodas changed - I thought something was wrong with the can and threw it away and got another, but no, it was the same. Oh well. My appetite is pretty much zero, which is fine with me since I gained over 30 pounds since starting lithium seven months ago. I don't feel any tingling or any wierd sensations - but I did feel lethargic/"stupid" the first day (and I'm definitely not that!) - so I switched to taking it at night only and that took care of that. I still feel tired when I take it at night and a little slow in the morning but by the time I get to work I'm good to go. As far as how I'll do when my psych ups the dosage I'll have to see - I'll be sure and post. I think everyone tolerates meds differently and you need to research any drug before you take it.

I was given topamax to treat headaches and cyclical mood disorder. I was not given any info about side effects or that, at the time(April of 2006), the drug was not FDA approved for treating mood disorders. I took about 3 25mg tablets a day for 6 weeks and started noticing pain in my chest, stomach, back, and neck, my heart felt irregular as well. Towards the end of the 6 weeks, I felt so bad that at times that I had to crawl to the bathroom at home because my body and heart felt so weak. I weighed 135 pounds before starting the drug and 117 after, lot of weight to lose for me in such a short period of time(my weight very rarely fluctuates at all). I started noticing that when I would eat a large meal, I would then be hungry with an empty stomach an hour later, and about 15-20 minutes after taking my 2nd pill for the day I would feel shooting chest pains and become slightly dizzy, I would take my third pill at home a couple before bed and the symptoms were even worse. I called the on-line nurse late at night a few times and they would say it was just anxiety, my friends and family that knew about all this would also say that I was just worrying too much. I decided to take matters in my own hands and started doing research on the drug. I found all the information I needed, that was not given to me, decided I was experiencing some of the specific side effects people had noticed. I finally decided on my own to stop taking the drug after my doctor told me that all this was because I wasn't taking a high enough dosage, I still can't believe that she said that!!

Now that I've had some time to look back and gather myself a little, I know that I also experienced side effects such as dizziness, loss of taste, decreased sex-drive, Loss of wittiness, feeling like being in slow-motion, slurring speech, heartbeat going from 64bpm sitting on the couch to 128bpm after walking to the bathroom to pea, difficulty breathing, basically felt like crap but was too drugged up to really notice.

It did stop my headaches and stabalized my mood but I think the improvements in mood were primarily due to the fact that I wasn't all there. DEFINETLY NOT WORTH ALL THE SIDE EFFECTS!!!

As soon as I stopped taking this, I felt much better in the head, noticing that I was probably running on about 70% for the past few weeks. Also gained back all the weight very quicky. I felt like myself again and was rejuvanized in my life!! Primarily all the side effects disappeared and I moved on with my life. Unfortunately the chest pains slowed down but did not disappear. I felt like, and still feel like, I had a broken Sternum. I went to the same clinic and had numerous tests done(EKG, blood tests, X-rays), everything came up clear. I have had to tell some of my friends, numerous times in the past year, not to restle with me or hug me too hard because it hurts.

I have not been taking any perscription drugs for the past 14 months because of all of this and now have recently started feeling increased pain in my chest(the chest pains never completely went away) . I do not have health insurance but am going to get this all checked out ASAP, I will post again once I find out what's going on.

Hi Everyone,
I have been taking Topamax 25 mg for 1 week. I can't stand it. Today I am to up my dosage to 50 mg.I am not sure if I want to do that. The side effects suck.. I think I would rather just deal with my migraines, at least I know how to do that since I have had them for over 25 years. I have tried everything and nothing has worked so the Dr. and I thought we would give this a try.
I am trying to keep my place of employment happy with trying to cut down on the migraines but nothing works.
Most days I just want to give up.
Hopefully we will be able to figure something out.

I can't stand the pickhands and feet, the stumbling like I am drunk( and I dont' drink) nothing tastes right anymore, I have the shakes and I ache.
And all it does is makes me sleepy and like I am in another world.
I went to work today and made it half an hour before I came home because I stumbled and almost fell over. And when the boss talked to me it was like I wasn't there. So I came home. I don't know but I don't like it at all.

I have been using topomax 100mg daily for 6 months now. I started at that dose immediately, as I was having occular migraines on a daily basis. I experienced terrible side effects of memory lapses, tingling in my face and hands, & speech issues for about 6 weeks. It was about that time that I also realized carbonated beverages were tasting like liquid tin. I also have decreased appetite, and have lost 35 lbs. The side effects were awful in the beginning, but I was told they would subside after my body adjusted to the medication. So, I kept telling myself the effects were due to the medication, and would eventually go away, and they did. I have to admit, those 6 weeks were awful. My kids, hubby and I would joke, because Mom just had a "loopy" topomax moment. As of today, the only side effects are the liquid tin taste of carbonated beverages and loss of appetite, and I am now experiencing difficulties sleeping, which could be caused by something else. For me, the 6 weeks of feeling like I was losing my mind were worth going through, as I am continuing to lose some needed poundage, and most importantly, I am headache free!

Extreme moodiness, one day I love everybody, the next day I hate everybody, from my husband to my co-workers, even the lady at the gas station. Causes either extreme paranoia (from my husband is having an affair and Im going to get fired) to the other end of the sprectrum, TOTAL whimsical carelessness! Not me at all! Im typically very grounded, very stable, very predictable, very reliable, very easygoing, the office manager of a large corporation, with my husband for almost 14 years.

on a good note, I have lost approximately 6 pounds in 2 weeks. However, my feet, legs, fingers and hands tingle frequently to the extent that it is quite annnoying. Pins and needles annoying, at any given time. During traffic, in a meeting, its caused me to drop things.

After reading various posts, it causes concern to nerve damage. Its not worth the risk. I am going to back myself off of my prescription. If you are on topomax, and see any warning signs, Consult your physician!!

Is loss of sex drive a problem when you are on Topamax? Also, does the weight loss stop?

My wife is getting really skinny. She pops off at me when I ask her a question....and I have given up on sex.

She's free of migranes though and I guess that is all that matters. She's been on it for about a year.

I have been on topomax for 2 years for seizures. They had my dosage up to 200-250mg at one time and now I am on 100mg 1x a day do to the side effects. Now being on the 100mg I just don't feel like the topomax is working or worth taking. So, I stopped taking all together 2 days ago. I have had no side effects and I feel great. I think that topomax is great in the beginning and then being on the med for a prolonged period of time messes with your body, mind, etc..

I have been on topomax for about 10 days(50 mg for first week and 100 mg since then). I have severe hair loss, loss of apetite, memory loss, loss of words, confusion, not able to think clearly, mood swings and depression. I am worried at all these side effects. I sometimes think, if I have to chose between severe headaches and all these, is it worthy to continue Topomax? My Doctor only warned me of tingling effect on fingers and toes and nothing else. Today I had been to another doctor for second opinion and he actually asked me a few question as part of check up and the it struck me that all these things are happening to me. I was kind of ignoring these effects so far thinking they are part of post partum depression.

hair loss frontal..
been on topomax for 3 years 200mg nightly to control migrains. Went to all types of Dr and did all types of blood work finally it was decided that the Topomax is causing the hair to fall out. Yes I take vitamins and fish oil and super omega-3. It is hopefull that the hair will start to grow back I would hate to be bald at 36.

I have been taking topomax 100mg twice a day for one year. I began taking it for seizures and headaches. I weaned myself off of it in December feeling that it was unnecessary being that I've always been on lamictal as a monotherapy treatment for my seizures and that the dizziness, memory problems and tingly feelings were not worth it. Now the ten pounds that I originally lost and kept off for all this time has came back on and all the while I have been exercising 1 1/2hrs a day (which is new to me) and it isn't helping. I am back at my normal weight of 123 whereas I was happy to be 113 while on the drug. I am going to begin taking it again to see what happens... I don't experience the symptoms I spoke of before-unless I take too much because my memory is bad.