I started having migraines very frequently my freshman year of high school. My pediatrician recommended for me to go see a neurologist as my mom and aunt both have chronic migraines. I was prescribed 25mg of topiramate when I was 15. The dosage was upped to 50mg when I was 16 due to it not fully eliminating my migraines. At first the medicine worked wonders and I had no serious side effects and I felt like my life was improved. Then I noticed my weight began to fluctuate and I started to have neuropathy in my hands and feet. I’m currently 17 and still on topirimate (hopefully off of it soon). The past year and half has been a nightmare due to side effects and I’m just connecting the dots to it being topiramate. I’ve had terrible joint pains in my knees which isn’t common for an active 17 year old. I’ve been to urgent care and my pediatrician with acid reflux and what we thought was gallbladder issues. I’ve had times where my vision goes blurry randomly but quickly comes back. Recently the neuropathy in my hands and feet is getting so terrible it will sting and burn for long periods of time. My neurologist told me this could happen but to just drink water and it will go away. Drinking water does not help this. I’ve also had an increase in dental issues and now my headaches have been happening more frequently. I have also had mental health issues and I thought it may have been because I am a teenager but it was much more prevalent after I started to taking topiramate. I’ve had issues with constipation and bowel movements and I’m beginning to wonder what has this medication done to my body. I have a neurology appointment next week and I do not want to be on topiramate any longer.

I took topomax for some length of time around 2007-2011. I would have to get medical records to know exactly dates. This was treatment for migraines. Initially, the meds seemed to work but I began having issues with extreme weight loss, fatigue, kidney stones, uti’s ( was hospitalized three times but suffered for years from repetitive infections including sepsis. At some point, suicidal ideation became prevalent, i began experiencing visual hallucinations, lost my peripheral vision on top of rapid onset eyesight issues. It became so bad, I could not drive or walk. Experienced neuropathy, white matter brain disease, suffered a TIA wherein I had to learn to walk and talk all over again. My masters degree was no longer useful because I could not form words, spoke words backwards, high levels of anxiety etc. By 2012, I had to stop working. I have chronic kidney disease, auto immune issues, carotid artery disease, interstitial cystitis, bladder issues, continued migraines, weakness and numbness in limbs, neuropathy etc. I have dealt with this for almost 10 years. Topomax ruined my life. My urologist took me off the medicine stating my urological issues were due in large part to the medicine. I not only suffered loss of work, but incurred a lot of medical bills and have paid for a private neurologist out of pocket to get help just to function on a low level. Stress brings on symptomatic problems. I have stenosis in my neck. I could go on and on. This is a dangerous drug I wish I had never taken. My life was charged forever.

Topamax ruined my life. I can no longer function in day to day life without making notes. I was started out on a low dose and it was raised over time. i have trouble finding words, simple math now has to be done with a calculator. outings to the store must be carefully planned. i get lost trying to go places I have been to many times.so I can no longer drive because I am easily confused. how am i supposed to work when i cannot hold a decent adult conversation. someone please help!!!

Dr prescribed topmax and I took it for 2 months, I am like someone with DIMENTIA. I forget where I am going, what I went to the store for, it’s horrible. No one told me this would cause memory loss. I stopped taking it 3 weeks ago, yes the severe headaches came back, but not my memory. Why is no one going after the manufacture for this. They have ruined our lives!!!

I was given Topamate for sieazures and migranes in June of 2020 according to the bottle that’s the only way I know that. Because I don’t remember much about anything anything anymore I’m constantly questioning myself about how things happened and how I am supposed to be doing this or that . I can’t keep a job and after I have sieazures wake up lost and afraid. i feel like a alzhiemers patient. I’m not 40
They ruined everything I can’t even file my taxes or get log into my email accounts…I can’t remember family members names and I have days I don’t remember who I am .

Pain in both my hands was keeping me from a good night’s sleep. My Pain doctor prescribed topimax though I expressed my concern for choosing topimax, since I was certain that my pains was carpal tunnel. My doctor said if I didn’t take my meds proper I’d be non-compliant. There was no improvement in my hands.
It got worse. They increased the dosage to 100 MG. Topimax permanently damaged me. I was unable to speak and make any sense. I couldn’t focus or follow through with anything. I can’t remember my children or my life to this day. Topimax cost me my marriage and I didn’t even want the meds. How many people must suffer before something is done about this horrible drug?

I was on Topamax for migraines. For the 1st week, 25mg, I was having the usual pins and needles feelings in my hands, along with flat soda sensations. Then the 2nd week for 50 mg I started having severe panic attacks and anxiety issues. Couldn’t grocery shop anymore, or get my kids hair cut. The inability to make simple decisions (Do you want a receipt? Should I take an umbrella?) The Third week, 75mg, the panic attacks seemed to fade away, and so did the anxiety so I thought I was adjusting well… the 4th week I started thinking about suicide. It took me 5 days to get the help I needed to get of the medication. By the time someone got back to me, I was crying in the floor , begging for help. Its a dangerous medication and the side effects are dangerous. It should be pulled from the market.

I have been on topamax since 1998 had to stay on it for two births. Both kids have severe birth defects. I was told it was safer to be on it, then not.

I’ve been taking Topamax for about 5 yrs now I didn’t realize this could be the reason I’m so forgetful, sluggish, my mood swings are terrible and we won’t even talk about my panic attacks and major anxiety and depression symptoms OMG are they off the wall at times! I can’t keep up when speaking sometimes and puns and needles in both hands and sometimes even my feet as well! I get blurry vision and confusion on top of virtigo and it makes me dizzy and I fall down down at times! I just thought I was extremely clumsy lol. I have tingling in both hands and sometimes my feet as well. I never imagined it would be my medicine that was causing it until I read these articles. Can someone please help me determine if I have a case or not??? Thanks so much for help given! Have a nice day!!!

Was prescribed Topamax 100mg. twice when I left the hospital after stroke did not have any affects from stroke. Voice normal. Started taking the meds when taken second pill noted started getting a little hoarse. Gradually got worse. Seen NP and she changed med stated it should go away. It is now 7 months after stopping med i still have hoarseness. It is making my life very difficult. Seen by specialist they will not document it was the topamax. But Dr. verbal stated it is probably due to topamax.

I was given Topomax in 2006 for nerve pain. I lost 2/3rd of my hair this past year and weaned myself off this drug.2006-2023. I was under pain Management and never explained any risks.
I am now on Menoxidile and another hair med to try and stop alopecia, which I never had. I had a beautiful full head of hair and now its thin, and very brittle. These docs also had me on Oxicontin from 2006-2021, when I again weaned my self off that pain med.
I was on 200 mg of Topomax per day.

My daughter has been on this medicine for a total of 15 years now for seizures . she’s had four children in the time span. Her seizures would stop when she’d be pregnant and she would quit taking it. but one pregnancy they did not. The doctors told her that the risk of her not taking it would be worse than taking it .My granddaughter is nine and has severe bipolar, emotional and other disorders, my daughter has all the sluggish feet numbing hair loss memory loss issues is all the other people above. Our main concern is trying to figure out what it neurologically wrong with our grandchild.

Just started taking topiramate yesterday, low dose 25 mg, one tab before I go to bed for my paroxysmal kinesigenic dyskinesia/choreoathetosis and after just one dose, this morning much improvement with my balance (single leg standing and tandem walk), tremor and writhing when extending arms, ability to repeat same movement with hands ie finger tapping. Some evidence in the literature for it’s use is this disease I have which is related to epilepsy. A bit drowsy this morning but that’s fine if it helps control my symptoms:

Yuan-Gui Huang et al. Topiramate therapy for paroxysmal kinesigenic choreoathetosis. Mov Disord . 2005 Jan;20(1):75-7. doi: 10.1002/mds.20283.

Abstract
We observed the clinical efficacy of topiramate for paroxysmal kinesigenic choreoathetosis (PKC). Topiramate was administered as a monotherapy with titrated dosages to 8 patients with PKC. Target daily dose of topiramate was 100 to 200 mg; the follow-up period ranged from 8 months to 2 years. All of the patients became attack-free, and side effects were mild. The results show that topiramate is effective as a monotherapy for treating patients with PKC. The response to topiramate indicates that the disease may be caused by an ion channel defect.
PMID: 15390133 DOI: 10.1002/mds.20283