Zonisamide User Reviews & Ratings (Page 4)

• Han...
• Taken for 5 to 10 years
• August 23, 2021

Zonisamide for Seizures "This medication is toxic. I was on it and Vimpat for years, and it made me so sick that I couldn’t walk. All of the doctors couldn’t figure out what was wrong with me, and I was in the hospital for 9 days. I stopped the meds as a last resort. It affected my mental health, ability to think, and gave me weakness, numbness, muscle cramps, dizziness, and a chronic pain that felt like my entire skeleton was in a pressure cooker."

• GMM...
• Taken for 1 to 6 months
• August 19, 2024

For Migraine Prevention "I've been taking 100 mg of zonisamide daily for 6 months. (Only after trying others that didn't work for me.) This has decreased my migraines from 4 a week to 1 every 2 weeks. I am feeling much healthier than ever! The only side effect I've had was getting tired earlier in the evening. And if I drink wine, I'll get a headache the next day. So I limit my consumption to very little or none. Overall, it has been a game changer for me, since suffering from migraines for over 40 years."

• Har...
• June 13, 2016

For Seizures "Seizure-free for over 2 years on Glenmark's Zonisamide. It would be closer to 5 years, but the pharmacy switched to another supplier, and I had 2 seizures and ended up in the hospital. I do at times have some brief dizziness and notice that I don't sweat as much, but these are light side effects given some of the brain-numbing, comatose side effects of other drugs that I have tried."

• Mik...
• Taken for 1 to 6 months
• October 20, 2018

For Seizures "Took this epilepsy drug, and within a few weeks, I lost the plot. I felt as though my brain would explode with the rage inside, then felt suicidal. Obviously, I don't recommend this in any shape or form. Be aware, as the dose increases, your brain starts to shut down."

• Yca...
• Taken for 2 to 5 years
• March 30, 2017

For Migraine Prevention "I have tried everything in the book preventatively, but this is the first thing that's worked with the fewest side effects that I notice (I haven't noticed any of the brain fog or cognitive issues that I know of...but maybe I have them and just don't know, lol); I'm on 300 mg for a few years now - lost weight at first, which I didn't mind at all. But recently, every time there's going to be rain in the forecast, I wake up with a migraine...I wake up, have a headache - check the weather and sure enough, there's rain today, so I take a concoction and lay back down until it goes away. I'm going back for my regular checkup next month and we're going to have to discuss options because I cannot manage life around the weather like this."

• Jes...
• February 22, 2018

For Seizures "Started Zonisamide about a week ago, and at first, it was okay. I had a bit of mind fog, and now I feel as if I have the flu. My head hurt constantly, even though I was told to take my meds at night. I couldn't sleep for hours, even though I was exhausted. I lose my breath easily and get super anxious for no reason. Even worse, I called my doctor, and they won't take me off of it. Side effects are awful."

• liv...
• Taken for 10 years or more
• May 18, 2015

For Seizures "Have been seizure-free for over 10 years now. Ever since my doc put me on Zonegran. BUT there was a short time I was having bad migraines, so he put me on Topamax (evil drug), it caused me to have short-term memory loss to the point that I was forgetting I was forgetting. Changed doctors and back on Zonisamide, and all is good. As for side effects, I have daily fatigue and less of an appetite, but who cares compared to one or more seizures daily."

• The...
• Taken for 2 to 5 years
• August 25, 2022

For Seizures "I've been on zonisamide for about 3.5 years now to control my grand mal seizures. From early on at 200 mg, I noticed some 'fog' and chronic depression, but it was manageable and, more importantly, the seizures were controlled. Later, I went up to 300 mg when my auras returned, and now I'm in a really bad way. I'm extremely irritable. I get angry over little things and stay angry. I lose my thoughts mid-sentence at least 10 times a day. It's really damaging my relationships and self-efficacy."

• She...
• Taken for 10 years or more
• August 18, 2021

For Seizures "My husband has suffered three major strokes since 2007. The final one in 2008 left him with partial complex seizures. He was given Tegretol 300 mg twice a day. This didn't stop his seizures, and then he was given 300 mg twice a day of Zonegram (Generic Zonisamide) in addition to the Tegretol. His seizures have been controlled and the side effects have been minimal, except for the extreme loss of appetite and sleepiness. He was a robust 230 pounds when starting this medicine and now barely weighs 150 pounds. He is physically impaired and practically bedridden due to the weight loss and muscle loss. I also suspect that it affected his dental health as he kept losing his teeth one by one until he has full dentures now. I know that the weight loss may have been due in part to his dental issues, but I have read the many reviews concerning weight loss, which I believe is being caused in part by this medication. He has also experienced lightheadedness and short-term memory loss."

• Joe...
• Taken for 1 to 6 months
• March 19, 2021

Zonisamide for Seizures "I've been on primidone for 35 years. My doctor wanted to switch to Zonegran because of my headaches. It definitely stopped the headaches, but I couldn't sleep. However, I wasn't tired the next day either. Two weeks in, I noticed that I was having heartburn, but it was controllable. When I upped my dose to 200 mgs., it was like someone set a fire in my stomach. I called the doctor and went off of it that day. I did notice that my personality changed as well. It didn't work for me, but I'm sure others have had better results."

• Anonymous
• October 26, 2009

For Seizures "I take Zonisamide with Tegretol, and it works great in controlling my seizures. I do have loss of memory, stuttering, and itchy skin. All of these have occurred in the last year, and I've been taking it for 2.5 years."

• Moo...
• Taken for 6 months to 1 year
• August 31, 2017

For Seizures "I began taking this drug in July 2016. I had to take myself off of it because I had enough of the side effects. My doctor would not even consider me withdrawing from it completely and told me to wait for the appointment with my consultant neurologist in the UK, which I could not do (2 months). Side effects were terrible: aching, burning patches all over my body, very low mood (not quite depression). I have been diagnosed with epilepsy since I was 18, but the side effects were worse than the condition, although I did have several seizures. I am an English woman living in the UK. I have to include that side effects started several months after taking this drug, and I can positively state that it was all because of this drug, zonisamide."

• Rob...
• Taken for 1 to 6 months
• June 30, 2020

For Migraine Prevention "I've had severe chronic migraines for the last 11 years, age 62 now. I've tried just about everything, Imitrex with Naproxen worked best and had the least side effects. My neurologist took me off Levetiracetam because it wasn't working as a prophylaxis and put me on Zonisamide. He's starting me at 50 mg, and I have noticed a decrease in severity and duration of the migraines, but not a decrease in quantity so far. I don't have any motor side effects, but I've lost 12 lbs. so far, and I can't really afford to lose any weight. If it continues, I'll have to stop as I am now at 157 lbs as a 5'11'' man."

• Tam...
• Taken for 1 to 2 years
• May 6, 2023

For Seizures "This medication has worked wonders for my seizures, which is amazing! My weight loss is extreme! I've lost over 50 lb in 1 1/2 years. At first, it was a welcome change, my appetite lessened to one meal a day. But now, at 100 lb, it's too much! It doesn't seem to matter how much I force myself to eat!"

• VLS...
• Taken for 1 to 6 months
• March 25, 2019

For Seizures "I have been on zonisamide for a few weeks, and it's horrible. I take three 100 mg at bedtime, and there is what feels like a combination of side effects, like feeling overmedicated and feeling like the drug isn't working. I don't like to leave the house because when I am around fluorescent lighting for very long, I get worse, almost like I am experiencing an aura. I am ready to go on the drug that was costing almost $900.00 a month but worked rather than go through this."

• oki...
• May 15, 2010

For Seizures "Been on zonisamide for maybe 3 years, probably more; can't remember exactly. No grand mal seizures whatsoever. Try not to take it late at night, though. Take 3 pills all at once any time during morning hours, or even early afternoon. But this is the best for me, anyhow."

• bea...
• Taken for 1 to 2 years
• November 14, 2020

For Seizures "I do not recommend zonisamide unless actually necessary or a last resort medication. I developed kidney stones, rashes, my body is lacking most of the vitamins I need. I’m not absorbing B12, basically anemia. It stopped my seizures, but my quality of life is so bad I’m getting off this medication."

• Mwa...
• Taken for 2 to 5 years
• January 27, 2017

For Benign Essential Tremor "My shaking is well controlled, but I don't like the side effects I have. I am positive the problems are drug related. I have facial pain, like a sinus pain, nasal burning, occasional headaches, lips, and mouth tingle. I no longer have orgasms. I have low blood pressure, so I couldn't take certain other medications. A couple others make me very nauseous. I decided to live with the side effects of zonisamide for now."

• Anonymous
• Taken for 2 to 5 years
• April 13, 2018

For Migraine Prevention "I was put on Zonegran for back issues. I was in so much pain with discs out of place in my upper and lower back that I honestly thought I had cancer. I am a breast cancer survivor, and when this pain hit, I started looking for answers and started seeing doctors. The doctors, including my oncologist, ran tests, and they came out normal. I was referred to a neurologist, and he ran tests only to find out the problem was my back and my options were surgery or meds. This medication causes brain fog and hair loss, and sometimes I can’t find my words. It can also cause UTIs if you don’t drink enough water. For the hair loss, add vitamin B6 100 mg a day, it helped me! I take 400 mg a day and 200 mg of topiramate for the last 3 years and have lost over 100 pounds, so then there’s that."

• Lau...
• Taken for 1 to 2 years
• September 2, 2019

For Migraine Prevention "I have had uncontrolled atypical migraines for 31 years. Reading over this, I noticed, so this is why my migraines are so much better. I am now on 200 mg zonisamide for seizures. My migraines don't seem as bad. None of the doctors knew this was a choice drug for the treatment of migraines. Sometimes I'm a better doctor than the doctors are."

• Vic...
• Taken for 6 months to 1 year
• December 15, 2018

For Parkinsonian Tremor "It is for tremors, but never touched mine. It is an anti-epileptic, and I had 2 seizures back to back. Also, the side effects are awful. I was on it for exactly 1 year, and the shaky unsteady walking - - - you can believe! I fell four times in one week! Ended up in the hospital! Now in rehab. No, I think you can find a better drug than this. Never could find the clinical trial info on it, - - - - if any."

• Fit...
• August 3, 2018

For Migraine Prevention "I have had migraines for the past 3 years, and did not want to get diagnosed due to the fact that I'm in the military, and the medical care there is often not the best (patch it up and send it off). The past 6 months have been the worst, so I went in and was put on Maxalt, maxed out on it the first day. Then I got Sumatriptan, which works, but the side effects (knocks me on my butt) are hard to deal with at work. So they put me on Topamax, I absolutely loved it. 16 days, no headaches, no migraines, nothing. But I had an awful itch that was worsened by sunlight. So they put me on nortriptyline at 50 mg. I also have temporomandibular joint disorder (due to grinding my teeth during sleep), so after I was put on the nortriptyline, the migraines would cause my temporomandibular disorder (TMD) to flare up, intensifying my migraines. I really loved Topamax because it relaxed both conditions. Two birds, one stone. But I was put on Zonisamide 100 mg on top of the nortriptyline 50 mg yesterday. Woke up this morning itchy."

• Goa...
• Taken for 1 to 6 months
• January 7, 2018

For Migraine Prevention "No effect on my migraines. First, I got a blotchy rash on my neck, then a red rash under my breasts and on bilateral sides of my groin. If I don't use vaginal cream every 1-2 days, I can't hardly touch it with a washcloth. There is clear drainage here. The rest of my body, especially my back, itches like crazy. The ends of a lot of my fingers are split, and they are painful. They have been like this for almost 2 months. My appetite is suppressed, and I've lost some weight."

• Bru...
• June 30, 2016

Zonisamide for Seizures "I first took it in 1984 as part of the study. It was so, so, it didn't work sufficiently, and the epileptologist took me off of it for fear of kidney stones impacting a teenager. When having major problems with Onfi and having tried 25+ meds over the past 41+ years, I thought I'd see if Zonegran had improved. A physician at Georgetown University in DC failed, like the FDA, to provide information stating that the medication can make a person who has had trauma and/or brain surgery go into orbit. It controlled seizures for a few months, made me do impulsive things like request retirement from a position paying over $104k/year. It made me hostile, nervous, go nuts, and elevated my Dilantin level, caused gingival hyperplasia so my teeth are painful and ruined."

• Blu...
• September 26, 2015

For Migraine Prevention "My migraines started suddenly at age 52, I have no idea why. I have tried several different medicines, including Topamax. I am now taking 400 mg zonisamide as first preventive and starting another new medicine this next week to see if it will help the head pain. I get daily migraines, scale 3-5 on average, and can increase at any time throughout the day to 6-7, at which time I have to take a Treximet or wait to see if it passes, sleep, ice, quite whatever I can do till it goes away. I have also tried Botox, that didn't work either."