Topomax symptoms and conditions

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?

I have had a TERRIBLE time. 3 months-of almost non stop bleeding (3 1/2 weeks, 2 1/2 weeks and 16 days and counting )and I do already have overactive bladder but now all the sudden if I don't run to the bathroom as soon as I have to pee(even if my ladder is not full) or if i sneeze I pee myself and i am 29!!-this never used to happen!! My obgyn finally decided to switch me to the pill thats 3 months of active and 1 week of sugar. The whole reason i tried this was bc my periods were beginning to get longer (7-8 days) and this made them so much worse. She did a biopsy and an ultrasound both of which were normal. I already have a non-hormonal iud (which i have had for 3 years) but we left it in bc i take topamax (which decreased the effectiveness of birth control) for migraines so i need the iud for birth control. im just trying something else to improve my periods and obviously this is not it! i am beginning to wonder if the topomax also causes an increase in bleeding too...

Have had the Mirena for a year due to needing some hormone therapy during menopause.I am 54yrs old and had my last period over 2 yrs ago-look physically like I am in my 30's. Had a breast reduction and weight reduction surgery over 10yrs ago VERY successfully lost 10# off my chest and 168# off of my body. SINCE having the Mirena I have gained over 30# and gained 2 cup sizes in my breasts! HELP!!! I have been treated by my regular doctor for mood swings with WellbutrinSR, Lexapro, Lamictal, Topamax and others-nothing has worked more than to ease some of the edge. I have gone from a size 2 to a size 10-12 in 9 months and am desperate for an answer! I feel as if all of the previous progress I had made with the weight reduction and breast reduction is all being undermined! I had a tummy tuck last September 08 and I swear my stomach was flatter before I had the surgery! I look pregnant! The surgeons have done a CT scan and can find nothing to indicate the surgery went bad. I don't know what to do as my OB-GYN tells me that "this IUD" is my best bet for hormone therapy and that it is ABSOLUTELY NOT the cause for the weight gain or breasts. Has anyone else "my age/menopausal" experienced this? Most of what I have read has been very helpful BUT all but a few are pre-menopausal and way younger. PLEASE let me know your thoughts!!

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 have just been put on Neurontin and found out about this weight gain thing!! I am freaked out. I have come off of Topamax due to I could not handle the side effects and I was like I was in a coma. I am also on lexapro for depression so the topamax really effected me. The Neurontin has said to be given to bi polar patients but from what I have read people are having depression problems on it. So the whole weight gain and the depression thing is scaring me.

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 taking Topamax for several years to control epilepsy. Zoloft to control an anxiety disorder. Recently started modiodal to counteract excessive daytime sleepiness (with great success). Recently started Neurobion and WOW....MOOD SWINGS!!!!!!!!!! Ranging from intense burning rage to numbness to feeling really up to back down again within a matter of minutes. Scary.

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.

1 year ago I had an injection of Kenalog in my knee due to a tear and a week after the injection, I had a very light period ( I was 54 at the time and hadn't had menstruation in 6 years). Last week, my PCP gave me an injection for my sinus problems as they were causing significant asthma issues. Once again, I have started having a light menstruation, this time with a lot of cramping. I have also had severe nausea the past 3 days and migraine recurrences that have been pretty well under control with Topamax. I am a RN and started "putting 2 and 2 together" regarding the Kenalog, so googled it and found this site. Definitely NO MORE for me!!! I will report this to the FDA and encourage my doctor to file a report also.

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.

I have to comment on some of the Lamictal "new comers". I've taken Lamictal for 1 1/2 years. For the first 6 months, this was the miracle drug. As months went by, I began all of the same symptoms: fogginess, weight gain, short-term memory loss, NO libido, headaches, and nausea, to name a few. As of this moment, I am weaning off of the Lamictal. HARD to do. This is not a drug that can be "stopped" immediately. On my fifth day of weaning off, I am dizzy, tired, weak, irritable, and have vomitted. Only about 3 days left. I am starting Topomax after. I'm anxious to see if there is any difference. Especially the weight gain part. I went from 120 to 135 in one year. (I run and eat healthy meals.) I will continue to take Effexor, which, in 2 years, has had little or no side effects. My advice to anyone just starting to take Lamictal is to GO SLOWLY. My doctor had my doses increase so rapidly that I didn't really see if the lower doses would have worked. (I take 200mg.) The bottom line is to do what feels right for YOUR body, rather than a specified dosage. Best wishes to you fellow BP-ers!

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