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User Reviews for Zonisamide to treat Seizures

Also known as: Zonegran

Zonisamide has an average rating of 5.4 out of 10 from a total of 73 ratings for the treatment of Seizures. 41% of those users who reviewed Zonisamide reported a positive effect, while 41% reported a negative effect.

Zonisamide Rating Summary

5.4/10 average rating

73 ratings from 74 user reviews.

Compare all 85 medications used in the treatment of Seizures.

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Reviews for Zonisamide

Peaches May 2, 2021

Zonegran (zonisamide): “Zonegran has stopped my seizures, but I'D RATHER HAVE SEIZURES THAN DEAL WITH THESE SIDE EFFECTS. I lost my job due this medication. I am 21 years old and tried watching Harry Potter... couldn’t understand a thing. Words do not click for me anymore. I had to set reminders for everything b/c I can’t even remember simple tasks. Social activities are out of the question. I am so anxious and paranoid all the time, I get a feeling that someone is behind me even if I’m lying down or standing up against a wall. I haven’t battled with depression that’s been this intense before. This stuff makes me feel non- existent. All I want to do is sleep. It made me weak physically, emotionally, and mentally. It’s changing my personality and my relationships. It made me so angry and hurtful. It’s scary stuff. I wouldn’t recommend this medication, especially those that already cannot communicate clearly due to age or disability.”

1 / 10
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Anonymous · Taken for less than 1 month March 30, 2021

Zonegran (zonisamide): “I've had complex partial seizures for 14 years half of my life the longest I've went was 3 weeks without a seizure. I have had two brain surgeries also have the Neuropace implant. I've been on so many different seizure medications, still am but my doctor wanted to try me on Zonegran a few weeks ago. Raising the dose every two weeks. I was terrified of the side effects but also happy of one of them, the weight loss because I really need that, this medication so far has helped me beat my record in 14 years become one month seizure free!! And I'm not even on my full dose yet! And I've lost 11 pounds! I really recommend trying out this medication it might not work for everyone but it's worth a shot. The side effects can be rough at first but my body got used to it.”

9 / 10
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Joe · Taken for 1 to 6 months March 19, 2021

Zonegran (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.”

3 / 10
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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
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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
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Emily G. October 9, 2013

Zonegran (zonisamide): “I have been taking Zonegran, 300mg/daily for 8 years. I have complex partial seizures that generalize about 90% of the time. I have tried just about every other medication out there and this is the only one that has kept my epilepsy under control. I do have side effects: some depression, anorexia (defined as loss of appetite). I started this medication weighing around 125lbs and now after three children weigh 105lbs and can't remember the last time I was hungry, and I have noticed that it is harder for me to retain information and I sometimes have to read things twice to understand them where before Zonegran I easily understood and retained information. Despite these side effects, I won't ever try a different medication. Totally worth it.”

10 / 10
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Childfree91 · Taken for 10 years or more January 16, 2014

Zonegran (zonisamide): “Been on this medicine for a long time. 10 years. It decreased my seizures a lot and my headaches. Also decreased my appetite and I've lost weight which I have no problem with. Out of all seizure medicines I've been on I highly suggest this one!”

10 / 10
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Ridiculousness April 13, 2013

Zonegran (zonisamide): “I was on this medicine at first 200mg a day then 400mg. I turned into a completely different person. I'm normally a happy, positive & outgoing young woman. On Zonisamide I became extremely irritable & depressed. I flipped out over the littlest thing. I also lost a lot of weight because my appetite essentially disappeared. I weighed about 135lbs when I started and dropped to 113lbs. I finally had enough when the depression kicked in. I would have suicidal thoughts multiple times a day. It was scary and debilitating! I cried a lot, for no good reason. My performance at work and my relationships were suffering so I called my Dr. and switched to Lamictal.”

2 / 10
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Seizuregrlll · Taken for 6 months to 1 year April 17, 2014

Zonegran (zonisamide): “Zonegran unlike Keppra and other seizure medicines give you a natural feeling closer to a normal feeling. Some seizures still slip by for me but only when it's closer to my menstrual cycle or ovulation time, my seizures seem to be directly linked to fluctionations in my womanly cycles other than that this medicine has been the best one for me and has been a great relief to me.”

9 / 10
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JBuns April 20, 2015

Zonegran (zonisamide): “I have been on Zonisamide for 5 years. I've tried several other medications to control my seizures but always switched due to side effects (hair loss, depression etc.). Zonisamide works the best so far for me! I love it! I haven't had a seizure in 5 years and I'm very happy with my quality of life! The only setback is my memory, I have word-finding issues big time! It gets very frustrating when I can see the person or the thing and not say the word. I have a Bachelor's degree in English, so you can imagine how annoying that is! But I would choose Zonisamide over anything else for sure! :)”

9 / 10
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Wildreign · Taken for 10 years or more January 4, 2016

Zonegran (zonisamide): “I have taken Zonegran ( brand name only) for about 15 years I have been seizure free ALL 15 years. Prior to that I was on Topamax ( brand name only) I was seizure free 4 years I had one seizure in that time due to exposure to mold. Zonegran is the BEST medicine I have ever had. I do have word finding and short term memory issues that are frustrating and sometimes involuntary jerking of my limbs, as I'm trying to go to sleep. In all honesty, I would not use anything else. I don't have to worry about seizures. I just take the meds and live my life. So much so I am finally driving a car which is something I thought I would never do, because I didn't trust my meds!!”

9 / 10
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David · Taken for 2 to 5 years November 16, 2020

Zonegran (zonisamide): “This drug Zonegran made me angry, depressed, and generally uninterested in life. The cognitive effects are pretty severe as well. Almost lost my job due to my performance while on zonegran. When I stopped taking it I felt like someone lifted the fog and turned the lights on again. \”

1 / 10
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Cat lady · Taken for 10 years or more September 4, 2020

“I’ve been on zonisamide for about 15 years for seizures and I loved it at first—I lost all my Depakote weight and looked great! No seizures, no big side effects. But since then I’ve had three surgeries for kidney stones. I have refused to switch but I’m kind of over this trash. Kidney stones are the worst pain ever. My kidney was full of them, a CT tech told me she’d never seen so many, so big. Also it gives me the dumbs, and I’m in a smart people field of work, so I frequently feel stupid. My memory sucks, I’m tired, and it’s hard to keep up with the smart people stuff. I’m getting annoyed with it and ready to switch.”

5 / 10
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Feeling hopeless August 27, 2020

“After 2 days of feeling ok on zonisamide I quickly started experiencing some extreme side effects. Anxiety, depression, panic, suicidal thoughts, sense of impending doom and uncontrollable fear. Those are just the side effects that I was worried about. Unfortunately I had others too. I asked to be taken off the medication and was instead lowered to a 25mg dose but still had the same side effects daily. After 2 days of unprovoked crying episodes and a trip to the emergency room for chest pain I asked the emergency room doctor what I should do. The doctor advised me to stop taking it because it is notorious for causing bad side effects. The worst part about the whole experience is that I still had seizures and I believe the side effects caused a permanent anxiety disorder.”

1 / 10
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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
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Letssee · Taken for less than 1 month August 27, 2020

Zonegran (zonisamide): “This week I've started on 50mg Zonegran at night and over the next few weeks will be increasing to 200mg daily. This is the 9th AED I have tried for my complex partial epilepsy. I am taking this in conjunction with 400mg Tegretol daily and 10-30mg Frisium daily. I experience auras daily and have seizures approx. once a week. Since starting this drug, I have not experienced any auras or seizures...however, it is too early to know if it is actually working. The side effects so far have been rather uncomfortable. This includes headaches, nausea, loss of appetite and feeling more tired/foggy than usual. Hoping the side effects will lessen over the next few weeks!”

5 / 10
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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.”

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ringa · Taken for 2 to 5 years October 21, 2013

Zonegran (zonisamide): “Seizures decreased in frequecy. Partial seizures. But there was one day of uncontrollable,uncomfortable side effects or a seizure of a different type. I had trouble organizing thoughts,couldn't come up with certain words,and felt extremely hostile at times. Never want to have those feelings again. They were very strong and uncontronablle.”

7 / 10
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steph1010 July 4, 2011

Zonegran (zonisamide): “I have recently been on Topamax and Keppra..both maxed out. My headaches were worst and my seizures were still happening. My doctor finally switched me to Zonagran 3 months ago. I am seizure free, headaches have been much better and I feel a lot more normal. I do have a low appetite but not to where I can't eat. I love it!”

8 / 10
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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
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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
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NewtoSeizures · Taken for 1 to 6 months December 3, 2020

“I started having generalized seizures once per month shortly after turning 30, no previous hx. Started taking zonisamide 50mg BID and increased to 100mg BID, did not stop seizures. Neurologist increased to 150mg BID, started having serious GI issues, diarrhea that has lasted for over one month, have lost over 40# in the last 2 months, have no interest in food at all depersonalization and no interest in things that I used to enjoy in life. I am now having B12 deficiencies, kidney stone, which is ridiculous at my age and with having no other medical issues and taking no other medications. Neurologist is now advising me to switch to Keppra XR, nervous about switching, wonder if not taking any meds would be better than how this one has made me feel. This medication has serious side effects also including short term memory loss! I used to have great memory, however This medicine will decrease your memory significantly!”

1 / 10
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Anonymous · Taken for 1 to 6 months October 29, 2013

Zonegran (zonisamide): “Our daughter is 5 years old and is on Zonegran for epilepsy along with other AED'S she has problems since about a week after starting Zonegran lack of memory and information processing. She is very slow now and has a hard time finding the correct words. She is also very sleepy. at this point we have actually seen a increase in seizure activity.”

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goldilocks46 November 25, 2013

Zonegran (zonisamide): “I have been taking Topirimate for complex partial seizures following my second sub arachnoid bleed in 2005 but started to lose my hair so I am now taking Zonegran and since changing over I feel very well, and the hair loss seems to be much improved and I am feeling great !”

8 / 10
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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
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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
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Lindy · Taken for 2 to 5 years August 16, 2020

“I take 200mg Zonisamide along with 900mg Carbmazapine. Since being on Zonisamide 3 years now, yes its affective but I barely recognize myself, I look a totally different person since taking and not for the better. When I look at photos from I used to look so well but now I look dreadful so much so I hate going out as people no longer recognise me. I don't sleep.”

7 / 10
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stex July 3, 2016

Zonegran (zonisamide): “This is one of the worst AEDs I've tried over the past 41+ years since surviving Reyes. It caused hostility, agitation, nervousness, restless legs syndrome, suicidal thoughts, and made me so impulsive that I requested an early retirement from a position paying about $104k per year. I probably would have not gone for retirement if the effects of the med had not been there. To top things off it gave me gingival hyperplasia so my front teeth are ruined, gum overgrowth is worse than it has been while on any of the other 24 meds I've been given. Intractable epilepsy is tough but this med might help persons who haven't had trauma or brain surgery. FDA and the maker FAILED to warn me about this. I got off of it.”

3 / 10
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This 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.