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User Reviews for Zonisamide

Also known as: Zonegran

The following information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.

Condition Avg. Rating Reviews Compare
Migraine Prevention 6.5
42 reviews 31 medications
Benign Essential Tremor 6.0
3 reviews 3 medications
Seizures 6.0
60 reviews 52 medications
Parkinsonian Tremor 2.0
1 reviews 7 medications
Summary of Zonisamide reviews 6.1 106 reviews

Reviews may be moderated or edited before publication to correct grammar and spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest in the medication will not be published. As reviews and ratings are subjective and self-reported, this information should not be used as the basis for any statistical analysis or scientific studies.

Reviews for Zonisamide

Tay · Taken for 10 years or more April 30, 2020

For Seizures: “It controls the seizures. I had a grandmal seizure in 2000 and I have been on medicine ever since to control seizure activity during sleep. I’ve probably been on Zonegran for 10-15 years now. Throughout all these years I have struggled with fatigue and Im now 27, married and I still want to take a daily nap and I realize that’s not normal. I want to come off of this medicine. Sometimes I’m slow with my words as well.”

6 / 10
wassup · Taken for 2 to 5 years March 23, 2020

Zonegran (zonisamide) for Seizures: “Started taking 300 mg of Zonegran/Zonisamide my freshman year of high school and have been on it for 3 years. The drug is good at what it’s supposed to do- control seizures, however the side effects are getting so extreme that I’m in the process of changing medicine. Lost 60 lbs, hands/feet feeling tingly, slurred speech, getting agitated and more forgetful. Although those were tolerable and pretty mild, I started experiencing cloudy urine that would be incredibly painful and at this point, unbearable. If your thinking about taking this medication make sure to DRINK WATER!”

7 / 10
Sarah · Taken for 1 to 6 months March 3, 2020

Zonegran (zonisamide) for Migraine Prevention: “I woke up one day with a feeling that I was rocking in a boat, severe head pressure, and nausea. This lasted 3 months until my neurologist prescribed this medication for migraines. It made me feel like I could live my life again. I do get a little forgetful on it but it is worth it to not have my migraines and constant dizziness.”

8 / 10
Beth · Taken for 2 to 5 years February 10, 2020

For Seizures: “I just finally after 3 yrs stopped Zonisamide. I am so happy it’s over! My pain doctors prescribed it to help with nerve pain. While it may have helped that some, the side issues were not worth the small amount of relief. My anxiety was off the charts, my brain clouded and confused. While I may have benefited a bit, the side effects reduced my quality of life. I’m finally having dreams again! I hadn’t had one since I began, I guess my bedtime dose prevented them? I’m just very happy to report I feel like myself once again.”

5 / 10
Candyman · Taken for 6 months to 1 year January 3, 2020

For Seizures: “I hate this medicine and its side affects!”

1 / 10
Persephone · Taken for 10 years or more October 15, 2019

For Seizures: “Started having seizures at 14 years old due to traumatic brain injury. LUCKILY I've only been on one kind of medication since then (I'm the big 30 now) and that medication is Zonisamide. The dosage has gone up since then, I am now taking 400mg a day but it works. A major thing that runs me the wrong way though.... my memory is pretty much gone. I've resorted to taking pictures of EVERYTHING because it's a little scary to think that I can't remember anything from my childhood or my 20's. It's sad really...and it makes me wonder is this medication increasing the risk of Alzheimers disease? I tried doing some research but I couldn't find anything on it. What do you guys think?”

9 / 10
Syn · Taken for less than 1 month September 11, 2019

For Seizures: “Began zonisamide: 100 mg once a day, in middle of last month (August) for suspected seizures, I had a severe Traumatic brain injury (TBI) 36 years ago. Initially, the zonisamide caused fatigue, but took it at night so no big deal. Took my headaches away, my mood was the best it had been in years, then almost a month into treatment, I woke up with HORRID restlessness starting in my neck, down my arms and through my fingers.: similar to restless legs. It would last for hours Causing me to not sleep. It would then stop about 3 hours later. I've since stopped and am really bummed because this medication was a miracle for me in all other ways.”

6 / 10
Keanie · Taken for 10 years or more September 4, 2019

Zonegran (zonisamide) for Seizures: “Taking 800mg of Tegretol, 200mg of Pregabalin, 10mg of Clobazam & 100mg of Zonisamide twice a day plus 125mg of Primidone once at night didn’t work on me. Even after having part of my brain removed didn’t completely stop me from having seizures but increasing Zonisamide to 150mg twice a day thankfully stopped me having seizures in 2010, I’d suffered with them for 9 and a half years. Certainly would never reduce these - I got my life back in my thirties so can do all I used to. Cope with going to soccer matches alone & abroad alone, I didn’t even leave town I lived in alone when suffering with epilepsy. I live in the UK so lucky as do not pay for these.”

10 / 10
Laur · 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, it is 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 treatment of migraines. Sometimes I'm a better doctor than the doctors are.”

We called it Zombie. July 18, 2019

For Seizures: “Oh boy, do I have a story for you. Two to three months ago, I began seeing a new Neurologist for my Epilepsy. I was on Dilantin and Fycompa and my seizures had become fairly scarce and quasi-controlled, except for the fact the Dilantin was ruining my teeth. I needed to change since I am in my early twenties and not quite ready for Dentures. I was driving, had a min. wage job life was pretty good. Then Zonisamide came into my life. I couldn't function, I had a sense of aggression that was never a part of my personality before this, angry for minuscule things that wouldn't have bothered me in the past. My functionality was almost completely gone on Zonisamide, I had to have family members advocate on my behalf because I couldn't escape the "brain fog" not to mention the depression that came along with it. I'm unsure if I was just extremely sensitive to that medication, but it has encouraged me to seek therapy, and some sort of stress management.”

1 / 10
Juvenile myoclonic · Taken for less than 1 month May 1, 2019

For Seizures: “I'm a 25 year old male. Had my first grand mal seizure at 21. I think I’ve been on it for two or three years, 200 mg zonisamide at night along with 100mg Lamictal twice a day. I can’t remember how many drugs I was on before that, at least 3. I can’t remember anything short or long term, everything feels like a dream. I forget my coworkers name. I’ve been sitting next to her for a year. I can barely recognize myself in pictures from my past. My reading speed and comprehension is fine, but my memory, vocabulary and ability to learn new concepts is severely debilitated. I have read studies that show zonegran can produce these side effects. It’s getting worse and I’m afraid I’ll have to get a job that’s not as mentally demanding. It doesn’t even control my seizures well.”

1 / 10
Peggy8161 · Taken for 10 years or more April 16, 2019

For Migraine Prevention: “I have been on zonisamide for years in combination with an antidepressant and betablocker (propranolol). Before this I was having 20 or more migraines a month with trouble word finding, memory, and focus- concentration. The first neurologist took me as far as he could on the AEDs and migraine rescues as he could. I took Topamax, depakote, Elavil, dilantin, fromig, maxault, imitrex, you name it. Either they were no help, just a few times, or some unacceptable side effects. I had a total of 50 lbs weight gain over ten years that I couldn't lose. Zonisamide was the first drug I felt I could really be a human being!”

10 / 10
Anonymous · Taken for 2 to 5 years March 26, 2019

For Seizures: “I have been Zonisamide since the age of 21 years and have nearly been on the drug for 3 years. Unfortunately I feel they have gradually ruined my life ever since. I have noticed the side effects of of uncontrollable anger, confusion, bone pains and dizziness coming over me at any point. I also suffer from being forgetful, brain fog and slow thinking ”

1 / 10
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 100mg at bedtime and there is what feels like a combination of side effects, like feeling over medicated and feeling like the drug isn't working. I don't like to leave the house because when I am around florescent 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.”

1 / 10
Anonymous · Taken for 1 to 6 months March 11, 2019

Zonegran (zonisamide) for Migraine Prevention: “Zonegran works great for my pain but I am so tired ALL THE TIME. I'm getting off of it soon I can't handle it anymore.”

7 / 10
IM Kimbo · Taken for 10 years or more March 8, 2019

For Seizures: “I’m a 62 year old male who has taken Zonisamide for seizures for at least 15 years, two 100mg nightly. Only a couple night seizures in my life and this drug has been flawless for me. What drew me to this site was to see if numb tingling from bottom of my feet was experienced by others. I am a 3 time Ironman Triathlete, ran multiple marathons and been extremely active all while on this medication. I can’t speak highly enough of it. Maybe all the pounding on my poor feet is contributing, but I have read numerous accounts of numbness as a side effect. Just asking for “ hey anyone else” info.”

TBrowne · Taken for less than 1 month February 19, 2019

For Migraine Prevention: “I took this medication after numerous failed attempts to control my chronic daily migraines with other medications. I started at 25 mg and was eventually suppose to be on 200 mg. I never went beyond 100 mg. By week three (at 75 mg) I was so nauseous that I could rarely eat more than a bite of food. I was also an emotional wreck. I would go from being irritable to crying uncontrollably in minutes. The night I took the first 100 mg dose, I began vomiting within 30 mins. After an hour of constant vomiting, I fell asleep for 12 hours. It took days to feel better - exhausted, nauseous, depressed. My family called it “ the medicine that makes you sick”. This is NOT the medication for me.”

1 / 10
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 an anti-epileptic, and I had 2 seizures back to back. A!so the side effects are awful. I was on it for exactly 1 yr, 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 .”

2 / 10
Mike & The Mechanics · 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.”

1 / 10
Lots of them · Taken for 10 years or more August 28, 2018

Zonegran (zonisamide) for Seizures: “I've been taking Zonegran for 12 or so years and have had no problems at all-not one seizure for years. I ride Motor cycles fast and not once have I had a problem.”

10 / 10
Fitz 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 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 first day. Then I got Sumatripitan which works but the side effect (knocks me on my butt) are hard to deal with at work. So they put me on Topamax, absolutely loved it. 16 days no headaches, no migraines nothing. But I had an awful itch that was worsened by sunlight. So put me on nortriptyline at 50mg. I also have temporomandibular joint disorder 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 was put on Zonisamide 100 mg on top of the nortriptyline 50mg yesterday. Woke up this morning itchy.”

Kay · Taken for 1 to 6 months July 19, 2018

Zonegran (zonisamide) for Seizures: “This drug is great for seizures. I literally don’t have any when taking it. The only side effects I see is fatigue, and serious weight loss. I’m down 20 pounds from this drug.”

8 / 10
Wimka · Taken for 1 to 6 months July 6, 2018

For Migraine Prevention: “I had been taking Topamax & it worked preventing my migraines without bad side effects (just weight/hair loss, which were both appreciated). However after starting hormonal birth control, I wanted to stop it to eliminate the possibility of it decreasing the effectiveness of the BC. My neurologist recommended Zonegran since it's a similar anticonvulsant & he's had patients successful with it. 10 days after building up to my full dose (100mg nightly) I began feeling nauseous. I was lightheaded, out of breath, & had to lay down. For the following week I was nauseous & sometimes lightheaded, & missed 2 days of work. After realizing Zonegran was the only change, I began to wean off of it. The nausea was better as my dose decrease & gone after stopping. Unfortunately I can't take triptans due to the birth control since I get migraines with aura & my neurologist won't prescribe antidepressants to people already on one. So beta blockers are my next try, regrettably.”

Anonymous June 9, 2018

Zonegran (zonisamide) for Migraine Prevention: “I have been taking zonegran for migraines for about a month. It has helped tremendously. Unfortunately the past few days my eyes have been in so much pain. And that is causing my head to hurt. I am wondering will this side effect go away?”

Jeff April 16, 2018

For Seizures: “My second neurologist prescribed me 100mg 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 100mg to try and get use to it. No good, second week I was just as sick. I'm disabled, deaf, had major cervical surgery March of 2017. Next May I was hit with seizures, in ICU for 5 days, 20 seizures 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. Cause of seizures are 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. Last seizure I had was April 5th, 2017, over a year ago.”

1 / 10