Topamax side effects

I have had migraines/headaches since I was 10 yrs old and am now 27. The doc originally told me it was because I was a teenager (stress). I got a MRI and CATscan done, but nothing came up. I also went to a chiropractor, neurologist, family dr, message therapist, etc. So finally my family dr described me Topamax. I have been on this drug for approx. 2 years. I take 50mg twice a day. I had no clue there were side effects like the ones described in all these passages until my sister saw a commercial on the t.v. and called me asap. In April of 2009 I had 5 kidney stones, 1 being 8mm in size. I had to have Lithotripsy done twice to remove all of them. I am not sure I have experienced the tingling limbs, but I can't say for sure. I do experience severe neck pain and memory loss along with not being able to function due to feeling so tired and fatigued no matter how much sleep I get. I have been a much unhappier person being on this drug and my friends/family/coworkers have seen this, but I never thought to relate it to Topamax. It did help my migraines...I was getting them 3-4/week and now I maybe get 1 every few months if that. On the other side of things I still suffer from mild headaches daily. I could not tell you the last time I woke up and did not have pain in my head. I wish I could. Right now I am taking the generic substitute for Topamax which is Topiramate. I did this because it was cheaper with my insurance.

I have been on Topamax for two years now. I really love the fact that I don't have migraines like I used to. I used to miss work at least one day a month and was getting to the point that many medications weren't working to help my migraines. Along came Topamax and I was a happy camper. Then I started noticing the side effects. I have trouble finding words. I have worked in my career for over 10 years, but started forgetting simple facts that I should know. I have been called on in meetings and been unable to answer questions that I should know the answer to. I have also typed the completely wrong word when typing up reports, knowing what word I want to type but typing something different. I have lost a lot of weight and have a general feeling of weakness. When I try to exercise I can't keep up nearly like I used to before I started taking the medicine. Reading all these posts, at least I don't feel like I'm crazy any more! It is good to see other people have experienced the same effects.

Hi all,
I have been on Topamax for 7 mos now. I have worked up to 100mg twice daily. I have noticed mild
side affects of some of these things each of you have talked about, but I have had migraines 24/7 for
the past 2 years. That is truly life changing, so I can handle the side effects. I just try and always be
aware of them each day. I monitor my health every 6 mos with my Doc so that nothing gets out of order. True everyones bodies are going to handle this medication differently but some tingling, a menstrual cycle thrown off a bit each month, it just all depends how much it does to your body. My
headaches are better. I am a teacher, and so it is the difference between getting out of bed each day
to teach my students, or just lying in bed everyday. My life has changed, I don't have much life outside
of work, my kids, husband. Socially I have hibernated much more. I feel too tired, and honestly not as
confident in conversations as I once was. I don't do much reading in my free time anymore,so as far as
making myself as more refined person that certainly isn't happening as I would wish. But..I am making
it day to day for now until another medicine source comes along. But as one comment said if you are
not having horrible side effects then go forward...go slowly.. and give it a chance. this is my miracle
for the time being!

I have been on Topamax Since August, and in December they Dubled my dosage. So I am taking 100 Mg in the Morning and 100 Mg in the Evening. I have noticed that my Menstrual Cycle is been really messed up. Could that have anything to do with it? My periods are either Missed, Late, Really Short, or Really Long.

I began taking topamax 25mg for my chronic daily migraines in december 2005. I was on it for eight days and then the unevitible happened-I went totally blind. I went to the er and they did not have a clue what was wrong. I was vomitting, eyes very sensitive to light, excruiating pain in my eyes, and of course I could not see. I mentioned that maybe it could be a side effect from the topamax. The er doctor called a neurologists and asked his opinion, he said that it could not be from the topamax and that I should continue taking it. Finally I was sent to an eye doctor and after he examined my eyes he said that I had Acute Myopia with narrow-angle glaucoma. This side effect was not in the PDR at the time, he found it on the Internet. Treatment was to immediately discontinue the topamax and he put me on glaucoma eye drops. If I hadn't gone to him I would have been permanently blind in both eyes. It took two weeks for my eyesight to start to come back. Since the topamax I cannot see far away. He prescribed glasses, but I have no insurance and could not afford them. I'm also being sued for the er bill. I tried to hire two seperate attorneys to pay for my medical expenses, but neither would take my case. So BEWARE! if the topamax is going to effect your vision it will happen within the first month of therapy. Now it's listed as a side effect. I just wonder if there is a class action suit going on against topamax?

I'm so glad I'm not the only one. The tingling in the hands is weird but I can deal. I've given up soda because it tastes weird. But I am so exausted all the time. I do nothing but work and sleep. I was't even getting migraines that frequently anymore. I think my doc was using the Topamax more for a weight loss measure for me. But I'd rather be overweight and be able to live my life. I often forget things. My brain feels like it is in a cloud. My job is in health care and if it wasn't for my co-workers helping me pick up my slack for the past few weeks while being on Topamax, I don't know what I'd have done. I feel like I think slower. I am also anxious a lot, have horrible acid reflux that wakes me up at night, and massively vivid dreams. I'm getting off of Topamax. I've never felt this awful before.

was on topamax for 4 years. never thought my anger issues could be related to it. i just stayed mad constantly. in june 2009 i came close to committing suicide. now i'm wondering if it had something to do with the topamax. think i would rather live with the migraines rather than take topamax again. i admit i suffer from depression but i'm wondering if the topamax made things worse. had concentration problems. never really lost weight on it, but couldn't stay focused.

Ugh. Where to begin...

My girlfriend started taking Topamax back in.... around November I believe (end of January now), and life has been absolutely hell for me since. She had always had a lowered sex drive due to being on birth control, but everything was absolutely perfect. Once things got going, it was heaven. Aside from sex, she would always be smiling, happy, bubbly, doing little things for me, and life was absolutely f&*cking perfect.

That girl is now gone, thanks to Topamax. Immediately, sex drive just decided to up and leave. Like, completely. She has not had an orgasm in over 3 months, we can't even have sex anymore because she does not get wet (not trying to make this a graphic pornographic story), no matter how long we try or whatever. And even when she DID oblige my desire, oh boy was it obvious she would have rather been watching paint dry. Ugh.

Now? The first thing I ever hear out of her mouth is asking how long I had the heat on for, or WHY i had it on. She doesn't smile. She doesn't talk to me. She doesn't hug me. She shows no affection anymore. I fucking hate it. I've been going over and over in my mind whether or not to leave her... and I don't want to, but I cannot take this anymore. I'm going crazy, and its affecting me to the point where I've been thinking about suicide (not doing it... just wishing I were dead because I hate life right now).

I feel like I'm in a relationship with a zombie, a stranger... she can still smile and laugh, but it feels fake. Its not her. She's become a cold, detached, unaffectionate shell of a human being. I told her the other day that my band that I've had since 2002 is over because our drummer got kicked out of his apartment and had to get a job in Boston (I live in Albany, NY) and that he had to be there next week. We had to cancel out of state shows... all this stuff. I am a recovering heroin addict, and getting the band back together finally made me realize everything had become whole again in my life (we broke up in 2004 for while because of my addiction). So, this is crushing. All she said was "You can still play guitar." Maybe a couple other sentences, but thats it.

Everything has gotten to the point where she obviously doesn't give a shit and could seriously care less about me in any way possible. This drug is ruining our storybook relationship.

I don't know what to do. The migraines were crushing her. She has the tingly feeling in her hands/fingers, but she can deal with that. She's lost some weight, but I'm losing it. I'm ready to walk away from our relationship of over 4 years. She's 21, and taking 75 mg a day. I'll be 24 in a month. Life sucks. She tried over meds, but nothing worked. She tried butalbitol, I think, and one other medication. Definitely no more than 3 others.

She is no longer the girl I love. This medication destroys relationships at their core: affection and sexual connection.

I hope this helps someone avoid the hell that this drug brings.

I’ve been on 25mg of topamax for the last 3 days and I am already feeling the side effects of this drug. I did not look at any of them prior to me stating the medication because I did not want o to jinx myself but today I noticed that soda suddenly tastes flat and gross and I was wondering if that was the cause. It lead me here, I also could not take more then 4 bites from my salad today as well before I felt full and I probably only got about 2 hours sleep last night. I thought it might have been coincidence, but now I can see that its not. I am taking this drug to treat my constant BPV but I must admit with 16 pages of almost exclusively negative comments going back 5 years, this does not look hopeful, I think I will talk to my doc about trying another med. I'm glad I found this forum, good luck.

My son recently died. He was on Topamax and Depakote at the time of his death. The autopsy revealed a healthy 37 year old with no real cause of death. It was listed as accidental. In reviewing the findings of his blood analysis we noticed blood sugar of 12 and potassium of 8 listed. Could the combination of these two drugs have caused increased potassium and reduced sugar to the levels of death. Potassium of 8 is too high and blood sugar of 12 is way too low. Shouldn't his doctors have freqently monitored his blood levels. We cant find and answer.

My son was hit by a car a year ago. He periodically has bad headaches. He was prescribed Topamax and got the prescription filled 18 days ago. His behavior has become peculiar. He overacts to jokes, laughs a little too hard, or a little long for what is appropriate. That was the beginning, about four days ago. Today he started talking to me about how he had been a slave, and that his dad and I were willing to pay for his release but a lot of other people were still there. - Anyhow to long really to go into, but seems to be having very vivid dreams which he believes to be true. He started hallucinating later today thought there was something trying to kill him. He still has 12 remaining tablets, so he took 18 , he hasn't been abusing them. He has been very jovial, and likeable.

I'm on my 4th week taking Topamax, which is my 2nd week at 100 Mg. I have mixed feelings so far. I'm 29 years old and I have suffered regularly for 15 years with migraines. Over the past 5 years I have 3-5 a week. They were ruining my life. I'm a mother of two and a Logistics Analyst for the Department of Defense, I couldn't function having migraines almost every day of the work week. Nothing has ever worked to get rid of my migraines. They finally convinced me to try Topamax. I have heard awful things, but I have a friend that has been on it for 5 years with amazing results, so I thought I'd give it a chance. I will say this, it started working almost instantly for me. I have had one headache in 4 weeks that went away by the time my next dose of Topamax had kicked in. So living headache free is a blessing...
However, now that I have increased my dosage to 100 mg, the side effects are very hard. as I said, I'm an analyst...not an easy job to do when sometimes my daughter's 3rd grade math overwhelms me. Last week, I missed 4 turns on my way home, making my 10 minute drive, a 30 minute drive. I stare at the cabinet for 10 minutes thinking "what was I looking for?" when I was originally going for the milk in the refrigerator. I have a BS in Business Management and a MS in Mathematics and I have to spell check everything I type. Last week, I couldn't remember for the life of me how to spell business, and I have a degree in it! I get so frustrated I cry. And the burning sensation in my feet keeps me awake at night. my fingers are so numb it is hard for me to drive. I am thinking about asking them to keep my dosage at 50 mg and see if that keeps the headaches away. If it does, i think this medicine will work great for me! sorry to be so long winded, just trying to be as informative as I can!

I have been on Topamax for just over three weeks and am now at a dosage of 100 mg a day (50 mg morning and 50 mg at night). Beginning this morning I will be weaning myself off from it. I just realized this morning that it must be the Topamax that has been making me feel awful! I have pains in the back of my neck and pains in my back and am achy all over; and although I haven't experienced any loss of words or memory issues, my brain feels 'foggy'. My mood is awful and I have no enthusiasm for work or fun or hobbies or anything. I am fatigued and tired, but can only sleep about five hours a night. I have tingling in my feet and hands occasionally, but not too severe. And the worst part is that the Topamax hasn't helped the headaches for which it was prescribed! And for those who think that it will help them lose weight - please realize this does not occur with everyone! I have actually gained two pounds over the last three weeks. I was originally on Nortriptyline for my NDPH (New Daily Persistent Headache Syndrome), but couldn't handle the weight gain and constipation side effects so switched to the Topamax. I will be going back to the Notriptyline and the gym.

I've been using topiramate/topamax on and off about 1year now. I usually ignor the pain but this time it just hurts to much to ignore from my back, my side ,shoulders,now my fingers. I also notice the blurriness in my left eye when i wake up for about 3 hours.

Tingling from my toes to my whole leg even my arms. I also noticed the ton of hair coming off my head. My husband says my hair is fine, but I know and I also get nervous at times. Theres times when I just feel confuse, I also forget what I was about to do.

The worst part is I just went for my cleaning and I have some boneloss and my gums are receding.
Right now my gums hurt so bad maybe from brushing my teeth but also cuz of the pill. I just realize till tonight and why I am up so late cuz of the pills.

I never really pay attention to side effects until i just started searching. Ran into a few people with all the symptoms even the boneloss or gum disease.

I will definitely stop right now because i am damn tired of my mouth being dry. oh and another time 3 weeks ago I blamed it on a nut that i might be allergic but now i know it's the pill,
One night I had a bad chest pain and felt like choking on something for 3 days I felt that feeling mostly the chest pain.

GOODLUCK EVERYONE if u guys do still decide to take the pill you should always take it with a vitamins.

I've been on Topamax since mid-November (100 mg a day) for chronic migraines. I was getting 4-6 migraines per week and am an accountant. I've noticed the tingling (though now only when temperatures change from one extreme to the other), the constant thirst, the flat taste of carbonated beverages (usually just the dark ones), and occasional memory issues. The memory issues are annoying, but at the low dose, I haven't had serious cognitive issues.

I did read somewhere that vitamins help with the tingling and the thirst, so I started making sure that I took my one-a-day. My doctor explained that the topamax depletes certain vitamins in your body, so you need to take in more. It has helped decrease the tingling.

I also had new side effects. I've woken up every morning this past week with terrible pains up my arms and into my shoulders and through the back of my neck. It then traveled into my head and created a throbbing ring around my forehead.
No migraine or over the counter medicine helped. It took me a week to figure it out. I just realized it this morning, and now wonder how long it will take to get this poison out of my body.

I have been on Topamax about 3 years. I was getting as many as 3 migraines a week before starting it and had tried everything else. My dose was 300 mg daily. I had the numbness in fingers and toes with cold weather, and extreme fatigue at first, even the flat soda taste. All of those effects have tapered although my normal weight is 135, I can't seem to get over 120. Over the summer I developed a new side effect, extreme itching that despite the effectiveness of the meds after 6 mos of dealing with I can't handle. I started tapering down over the summer and took my last dose two days ago. I have since gained 4 pounds and can't wait to stop itching like crazy. All other side effects I could work through but it was like I was itcing ALL OVER all at once and nothing helps not even benadryl. After 3 yrs I'm done despite the fear of migraines returning I'm going to try acupuncture and ptay my migraines don't return...I'm DONE. It works but that was one side effect that was too unbearable.

well mine is not actually an experience more less a statement i am a 16 female and i've been getting migraines since i was about 8 years old and my doctor has prescribed me topamax and i was researching and i stumble upon this i was wondering should i begin taking this?? Being that i am a high school student the loopy factor is a big scare for me i have things i have to do but i was wondering if there was any one who didn't have any side effects at all or very mild ones because this websites is making me rather keep these suicide migraines that i have.....

I was desperate. My migraines were occurring at an average of 7-10 per month. Tried natural supplements, physical therapy and used my insurance company quota of Imitrex every month. The Imitrex was not as effective (headaches would go away and return over a 2-3 day period; I had probably built up a tolerance to it) and my neurologist convinced me it was time to try a preventative. I didn't want to go the antidepressant route and couldn't take the beta blockers as my blood pressure is naturally low, so I allowed him to persuade me to try Topamax. What a mistake. I began with 25 mg per night for two weeks and then was instructed to increase to 50 mg. After 3 weeks of hell I couldn't take it anymore and told him I wanted to stop. He had me drop back to 25 mg for three days and then stop completely. For the first few days I felt mentally clearer and more alert but over the last 2 nights I've been plagued with vivid nightmares, insomnia and extreme, extreme sadness to the point of heaving and weeping. Last night had to take a xanax to calm down and fall asleep. I am not a drug person and dont like even having to go that route but I have a very stressful jon and need to get sleep. An interesting conversation with an old friend who was a pharmacist was enlightening. He warned me that topamax has a very long half life and my symptoms could continue for an extended period of time after stopping even though I was only on the medication for three weeks. I'm so unhappy, scared and sorry I ever allowed myself to be convinced to take this stuff. I guess thats what desperation does to a person. I'd rather have the migraines and deal with the imitrex tolerance (my fear was that an MRI showed nonspecific white spots on the brain; Im told common in migraine sufferers, but none seems to know the future ramifications of these spots in the future so I becalme hell bent on reducing the migraines to reduce the white spots). My last resort now (other than acupuncture or botox which are not covered by my insurance and are therefore financially prohibitive) is to go off the only other meds. I take on a regular basis (birth control pills) which I've been on for a little over three years and it seems the headaches have intensified during that period of time. Please anyone considering going on Topamax, reconsider or at least read up on everything because the drs. and pharmacists only give you the tip of the iceberg re. side effects.

I have been off of Topamax since May 2009. And WOW… I feel like a totally new person, it is amazing!

I went to a psych in May & told him that I didn’t care if my migraines returned, I felt that I need to try & get off of the medication. It had taken over my life, and not in a good way. I also got off my anti-depressant (Wellbutrin).

I planned on going back to school in August, I asked to be put on an ADD medication. I started off with Concerta, but that did not work. I am now taking Vyvanse 30mg. This was my first semester back since 2003 & I am pretty sure I made a high B or low A in my class. I know I would not have been able to do that had I still been on Topamax.

I still have minor anxiety, which I will take a Xanax as needed. I only need them when I am stressed out.

For the most part, I no longer have migraines. When I do (about 1 or 2 a month), they are no where near the severity as they were in the past. Thankfully I am able to take an Excedrin Migraine and it goes away.
I am eating much better, however I can’t seem to gain any of my weight back. I have been at 90 lbs for about a year now. I will have a carbonated drink from time to time. Coke & Dr. Pepper are too sweet. After going a year w/o, it was quite strange. Now I will drink Orange Sunkist or 7-Up when I want some sort of flavor.

I get mad at myself for staying on Topamax for so long. I was too scared to get off of it. What if the next medication I tried had similar side effects… I would have to go thru them again. Or what if it didn’t work & I had to go thru the Topamax side effects all over again?

The mood swings, tingles, anxiety, shortness of breath, RAPID weight loss (25/30 lbs in 3 months), loss of hair, feelings of just existing, getting lost while I was driving, not being able to complete a sentence & spacing out were not worth it. I wanted to feel human again! Since then, my cycle is normal & my skin has really cleared up! I would get huge pimples & my face had many underneath bumps. I would cry when I washed my face because I felt as if I were reading brail.

I was only on 50mgs, but it totally changed my life.

I think that doctors and pharmacist need to tell you more about the possible side effects and strongly advise you to do research on the drug before they prescribe it. I know we are supposed to do that anyway, but sometimes we are too trusting and feel that they would not give us something may not be good.

When I went to the doctor about some of my side effects, they said, “It’s just your system getting used to the Topamax.” My pharmacist just warned me about kidney stones and to use a second form of BC. I often wonder if it was worth it.

Life for me is so much better being “Topa-free!”

Manage Topamax Side Effects by Working with Your Doctor to Reduce The Dosage

I have been on Topamax for 9 years and it has been a life saver. I suffer from migraines as well as bipolar disorder so I get the added benefit that it treats both conditions. Since I have been taking Topamax, my migraines have been kept at bay and my mood as been stable. I was initially on a very high dosage - 400 mg/ day - and suffered horrible side effects. With my doctor's supervision we notched the medication down to a the minimal level that would still be of benefit. I am currently on 100 mg/day, and that dosage is sufficient for both my migraines and the BPD mood elevation. I no longer get kidney stones, and while my memory and word recall and mildly affected it it not really palpable. I often see people demonizing this and other meds on internet and I think that is a shame because there are people such as myself who truly benefit from these drugs. I believe the key is to find the right dosage. I have been on many medications over the years and this one really works for me. For anyone suffering side effects I urge you to speak to your doctor about lowering the dosage. As a word of caution I would also like to note that you should not attempt to adjust the dosage on your own. Your doctor can recommend the correct dosage adjustment, timframe, and monitor any potentially dangerous side effects resulting from the change.

I have been on Topamax for almost 3 yrs. 100mg 2x day for depression, mood, eating disorder. However, I can't recall words, my memory is terrible, the metallic taste or no taste in my mouth, Now that I am trying to taper off of this drug I am experiencing this out of body type feeling that is very hard to explain to people. My skin is very sensitive to touch. This could all be from heightened anxiety I suppose. I am just unsure as to if I should keep tapering off of this medication. I am petrified to gain weight as I have already gained back some of what I have lost. My emotions are all over the map. One minute crying the next depressed or flat. Does anyone know how long the effects last after you have finished tapering? I was planning on staying at 100mg for a bit . but if I am going to feel these effect anyway I might as well just finish tapering now because I am on medical leave it has gotten so bad at work. Very embarrassing seeing as I was never even on medications before 3 yrs
Any answers will greatly be appreciated ..

I agree. Topamax should be taken off the market. I was on Topamax for epilepsy for a year and a half. I call that time the "topamax dark period" because I can't remember much of it. I do remember that friends were concerned because I was suddenly talking like an idiot. I couldn't remember things. I would be in the middle of a sentence and would suddenly forget. I wanted to come off this medicine so bad but I lost my job and didn't have insurance. My neurologist was an advocate of topamax. She gave me samples and had paraphernalia all over her
office. I asked her to help me get patient assistance for another medication but she wouldn't.

I finally moved, got another neuro and switched meds. Mentally, I never recovered. I still have problems concentrating and my IQ has plummeted. I was saddened today when I found short stories I wrote not even ten years ago. I could never write anything like that now.

I also suffered from anxiety, insomnia, tingling in feet, double vision while I was on topamax. NOT A FAN. I hate this drug.

I was only on topamax for 2 weeks in 2004. Immediately I felt the tingling sensation in my fingers. I felt like my body wasn't mine but it hurt. I started becoming forgetful and confused. At the time my 2 youngest children were 3 and 1. My 3 yr old was still in the process of being potty trained and wore pull ups. According to my mother I called her one day asking "what child wears a diaper and who wears a pull up?" She flew to my house. She called my boyfriend who then told her he was noticing weird things, like putting the ketchup in the medicine cabinet, baby wipes in the oven, ice cream in the refrigerator not freeze, and cat food in the cheerios box. Together they called my neurologist who immediately took me off the medication. Funny thing is my older sister who also suffers from migraines was taking topamax at the same time. 2 days after i was taken off of it, she was backing her car out of the garage but forgot to close the car door. She ripped the driver's side door right off the car and was still driving down the driveway until her husband waved her down. He walked up to the car and said, Do you see what you did? She said what? He lifted the door and said LOOK! She was taken off topamax also

Hi All,

I am having a one sided head ache for which i was prescribed Topamax 50mg daily with Sibelium 10mg and Microcid SR 75mg and Cobasoft OD. I have to undergo this for 10 days. This is my 3rd day and i dont have any big side effects except for drowsiness which i come across by having glucose d. After starting the medication, i didn't had the head ache as like before. Hope these medicines are working. Let me see. Any comments on these medicines are welcome.

Thanks

Believe it or not. I have tried topamax a few times. I have no sex drive on topamax and also last year I was hospitalized because of my lungs. I start this crazy coughing and it ends up snow balling from there. I never put the two together until a few days ago. I went back on topamax, well the generic form this time, because I could not take my headache any more and within a day my coughing attacks were back and I was fighting to stay out of the hospital.

I started taking Topamax for my migraines and was on 100mg. My hair started falling out about 3 months after taking Topamax. Like most other people who take this drug I experienced tingling hands and feet and loss of appetite. My husband says I have lost my joy. I feel flat and without emotion or motivation except for anger. I have trouble finding common words and my cognitive functioning has decreased. I have anxiety and depression for the first time in my life. Now my hair and eyelashes are brittle and breaking off. I am currently tapering off the drug and looking forward to being out of this fog. I am embarrassed that I didn’t realize that this drug was having so many effects on my life. It has taken me over a year to figure out what was wrong. This drug makes you feel stupid.

Severe migraines lasting 3 to 4 days

I am a thirty-two years old female who began taking Topamax for chronic migraine about 8 months ago. Like many, I experienced the tingling in hands and feet initally but after about 6 weeks it was very rare. I also despise the taste of any carbonated beverage now, unfortunate for me cause sometimes I'd just love to have a soda. I became very "loopy", forgetting things, not having to words to say, not finishing tasks. My husband no longer likes me to drive due to my slowed motor skills. Topamax did relieve my migraines tremendously, down from about two a week lasting on average 6-48 hours to an occasional light headache that I can relieve with Epidrin or Naproxen.
I have became seriously depressed in recent weeks and have worked with my neurologist to taper off Topamax. I lost all interest in my family (4 kids and husband) social activities, and myself for that matter. I was taking 75 mg per day and just finished the last week of 25 mg taper. I pray my migraines will not return or that we can find another med without the serious side effects. I also lost weight (about 10 lbs which I needed to lose anyway).

I am a 39 year old white female in the nursing profession (RN). I was placed on Topamax at the age of 31 for new onset atypical complex seizures that were later diagnosed as migraine induced drop attacks. I took Topamax for 3 years. I took 100mg a day. My family and I had moved to another state and I had to find another Neurologist. During this time I had many side effects from the medication that I blamed on my "condition." To make a very long story short, while taking Topamax, I developed a kidney stone, severe restless leg syndrome, weight loss, feet tingling, blurred vision, mood swings, slurred speech and mental confusion that went into amnesia. I had to relearn how to drive a car, spell, do 2nd grade math, use a computer, etc...
I now have permanent memory loss. I struggle every day with my memory issues. I have learned tricks of how to deal with it but have not been able to recoup any previously lost cognition. After nearly 6 years of being off the medication I doubt I ever will. I feel inadequate and embarrassed with my inability to remember people and things or form normal sentences during a conversation! I know the information is in my head but I can't always pull it forward. Some days are worse than others.
I also have a harder time learning new things. The information just doesn't want to stay "stored" in my brain. (Not a problem patients or doctors want to see in a critical care nurse!)
I hope my experience will save others from suffering the same fate. Use extreme caution taking this medication. It can drastically alter your life.

March 2009
I was given Topamax, told to take 1 pill a day then start on 2 the next week....

I could not get out of bed, when I could maneuver out of my home to shop for groceries - I nearly snapped someone's head off, for no reason

This drug is dangerous, you don't know in the moment what you are doing

This medication caused extreme aggression

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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