Zonisamide for Seizures User Reviews (Page 3)

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

Zonisamide "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."

• Har...
• June 13, 2016

"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

"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."

• Jes...
• February 22, 2018

"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

"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

"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

"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 "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

"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

"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."

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

"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

"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

"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

"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."

• Bru...
• June 30, 2016

Zonisamide "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."

• Lis...
• Taken for less than 1 month
• November 12, 2021

"I started having seizures after 3 months of giving birth to my son by C-section in 1999. My first doctor put me on zonagran, and I was seizure-free, but then lost my health insurance due to a divorce, so I moved back to SC. They put me on phenobarbital? OMG, no. Then Depakote, and that was worse. So I finally got my new neurologist to give zonagran again, just picked it up tonight. It worked for me back then, so I'm hoping as I've aged, it's still gonna be the best for me. We are all different, and we know what works for us. Praying this will be my magic drug again. I don't remember any bad side effects. I just don't know why we have to fight tooth and nail to get our disability. I have a court hearing in February of 2022. Been fighting them for 5 years. I don't drive anymore and already. Wish me luck."

• Jef...
• April 16, 2018

"My second neurologist prescribed me 100 mg caps, one at night for a week, then increase to 2 caps for a week, then 3 caps at night for a week. The first week, it made me so sick, horribly dizzy, like a bad flu feeling in the morning. Called her, told her about the horrible side effects, she wanted me to give it one more week on just 100 mg to try and get used to it. No good, second week I was just as sick. I'm disabled, deaf, had major cervical surgery in March of 2017. Next May, I was hit with seizures, in ICU for 5 days, 20 seizures the first day and night. My first worthless neurologist put me on Depakote. It stopped the seizures at least, but made me so sick I insisted he get me off the poison. The cause of seizures is unknown. Endless tests, EEG showed perfect along with the MRI of my brain. I plan on joining Mensa after a cochlear implant there in the next few months. The last seizure I had was April 5th, 2017, over a year ago."

• Joh...
• June 22, 2015

"Had a brain tumor removed in 1988 and was on Dilantin and phenobarbital for over 20 years. Got rushed to the hospital for what was thought to be a stroke and ended up being a seizure. My new neuro doctor put me on Keppra with phenobarbital, this worked great for about 5 years. Just got out of the hospital again because of a seizure and am now on 3,000 mg of Keppra and 400 mg of zonisamide daily. At first, I had a hard time sleeping, only about an hour a day, my fault, as I read the prescription bottle wrong. I was supposed to take the zonisamide once in the morning, and here I was taking 200 mg in the morning and 200 mg at night. So far, everything is fine as I am only on week 1 of my new dosage. My doctor also wants me to lose weight, so this is it."

• Agg...
• Taken for 6 months to 1 year
• July 25, 2021

"I have been on this drug for almost 1 year. Originally, the doctor wanted me to titrate up to 300 mg a day, starting with 100 mg the first week. By day 3, I was afraid to leave the house because of how frequently I was having daily bowel movements, 10+ times a day. And it was loose as if I took a laxative. By the evening of day 4 on the drug, I had a massive seizure like I haven't had in years! They readjusted the titration rate to 50 mg a week instead, until reaching the 300 mg prescribed dosage. It kind of helped with the digestive issue. But by week 3, when I upped the dose to 150 mg, I could not reach R.E.M. sleep at all. So I stopped at 50 mg in the a.m. and p.m. The neuro did not seem to be willing to take me off the drug. Instead, recommended melatonin. I still go to the bathroom more than what is considered normal. As for my mood, even though COVID was happening last year, I was a much happier person pre-Zonisamide. I see a new neuro soon."

• jff...
• Taken for 1 to 6 months
• March 12, 2025

"The doctor said no alcohol or I might get a psychotic episode. I didn't drink alcohol and had psychotic episodes. I told the doctor I wanted to go back on Dilantin, she said 'no'. Dilantin is the only med that worked well. Everybody is different."

• DGI...
• Taken for less than 1 month
• March 23, 2013

Zonisamide "Diagnosed - generalized juvenile myoclonic epilepsy. Completely stopped my son's seizures, he is only 14 years old."

• Kay...
• Taken for 1 to 6 months
• July 19, 2018

Zonisamide "This drug is great for seizures. I literally don’t have any when taking it. The only side effects I see are fatigue and serious weight loss. I’m down 20 pounds from this drug."

• Sul...
• July 26, 2011

Zonisamide "On maximum dose with Keppra, and still having some breakthrough seizures. Still less than I was having before. No side effects. Had a full-term pregnancy while on medication. Baby is very healthy."

• Anonymous
• July 7, 2010

Zonisamide "No seizures while taking, but have had bad bruising and constipation going on 2 years now. But I'll take no seizures over the side effects!"

• Lot...
• Taken for 10 years or more
• August 28, 2018

Zonisamide "I've been taking Zonegran for 12 or so years and have had no problems at all-not one seizure for years. I ride motorcycles fast and not once have I had a problem."