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User Reviews for Zonisamide to treat Seizures

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.

Zonisamide Rating Summary

User Ratings
10
16% (9)
9
17% (10)
8
16% (9)
7
9% (5)
6
5% (3)
5
2% (1)
4
2% (1)
3
5% (3)
2
5% (3)
1
24% (14)
5.9/10 Average Rating
58 ratings from 62 user reviews

Compare all 86 medications used in the treatment of Seizures.

Reviews for Zonisamide

Zeik · Taken for less than 1 month June 26, 2020

“I've tried a few seizure medications and this one is by far the worse one I've had, this medication had my body feeling weak, shaking like I had parkinsons, gave me erectile disfunction, had me fighting to breathe because I'd exhale but wouldn't inhale, I literally thought I was going to die taking this medication, I stopped taking it before getting approval because it was that bad”

1 / 10
betterhelp June 18, 2020

Zonegran (zonisamide): “I have been on 100mg daily of Zonegran for 1 week. Today I will be upping my dose to 200mg daily. Next week I will be upping it to 300mg daily and maxing out there for about a month to see how my body fully reacts to the 300mg daily. Zonegran, so far, is the first medication to help with the seizures. It definitely has lessened the length of my seizures, and how often. The side effects aren’t even close to how bad side effects have been on any other anti-seizure meds. I am definitely very drowsy, a little more irritable, moving slower, and feeling foggy. Have way less of an appetite and not eating early as much. I am having some headaches. Aside from that, I’m happy with this medicine so far. Finding the right medicine can be so frustrating and makes you feel so alone sometimes. Hoping this comment can help others as well! Xo”

7 / 10
Tay · Taken for 10 years or more April 30, 2020

“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): “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
Beth · Taken for 2 to 5 years February 10, 2020

“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

“I hate this medicine and its side affects!”

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

“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

“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): “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
We called it Zombie. July 18, 2019

“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

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

“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

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

“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.”

Mike & The Mechanics · 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.”

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

Zonegran (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 Motor cycles fast and not once have I had a problem.”

10 / 10
Kay · Taken for 1 to 6 months July 19, 2018

Zonegran (zonisamide): “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
Jeff April 16, 2018

“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
Tess · Taken for 1 to 2 years March 21, 2018

Zonegran (zonisamide): “I was really hoping Zonegran would be my golden ticket to no more complex partial seizures. Instead, I’m having not only more, but have tinnitus. The screeching in my ear is so loud I’d swear people can hear me coming. I’m sure it’s fine for some, just not in my case.”

1 / 10
Meandering · Taken for 1 to 2 years February 26, 2018

“First seizure at age 58 and a second 16 months later at which time was prescribed zonisamide. I was told I could step up from 25mg twice a day to 100mg twice a day. But I stopped at 50mg twice a day. No seizures since being on medication and am on ketogenic diet - good for the brain and have lost kilos. When I first started this medication it really wiped me out. I could barely get out of bed. I found that a Viatamin B12 shot miraculously restored me. I have a booster every couple of months. Discovered that zonisamide is contributing to loss of bone density - osteoporosis. Now on Prolia treatment with vitamin D and calcium supplements. Also yoga and gym. Healthiest and fittest I've ever been in my life! Reduced to 75mg in the evening only. Hope to reduce to 50mg next year.”

8 / 10
JessHayden101 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 tho 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 AWEFUL.”

1 / 10
Nikinoo · Taken for 1 to 2 years November 20, 2017

Zonegran (zonisamide): “Effective prevention of seizures, but I only had two episodes 16 months apart started at age 57. Started at 25mg twice a day, increased to 50mg. Was prescribed to go up to 100mg but requested to stay on the 50mg as I had no episodes and didn't like the effect it had on me. I am now used to it but it makes me drowsy. Big downside is I have just found out that I have osteoporosis and it appears that zonegran is contributing to accelerated leeching of my bones. Will be discussing with neurologist in a couple of weeks.”

6 / 10
dwenger86 · Taken for less than 1 month October 9, 2017

Zonegran (zonisamide): “I took Zonegran (zonisamide) for approximately 4 weeks. That should tell you something. I knew by the third week that something was wrong with me. This drug ruined my thinking process. I got "brain fog", was unable to concentrate or focus on anything more than 2-3 minutes. I could not remember 50% of more of anything I read or was told. It made me depressed and discouraged and I completely lost interest in nearly everything. It began to effect me emotionally and I became extremely irritable at times. It also made me very sleepy and reduced my appetite tremendously. *Worst of all, it did not stop my seizures. Zonegran must be one of, if not the worst anti-seizure medications I've taken in my life. I don't recommend it.”

Arthur13217 October 9, 2017

“ This drug made me angry to the point that I could not use it. I am normally very laid back but this made me aggressive and difficult to live with.”

3 / 10
Moose16 · Taken for 6 months to 1 year August 31, 2017

“I began taking this drug July 2016 I had to take myself off of it because I had enough of the side effects My docter would not even consider me withdrawing from it completely from and telling me to wait for the appt 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”

1 / 10