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User Reviews for Zonisamide

Also known as: Zonegran

Zonisamide has an average rating of 5.6 out of 10 from a total of 127 ratings on 39% of those users who reviewed Zonisamide reported a positive effect, while 37% reported a negative effect.

Condition Avg. Rating Reviews Compare
77 reviews 53 medications
Migraine Prevention  Off-label
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Summary of Zonisamide reviews 5.6 127 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 Reviews that appear to be created by parties with a vested interest in the medication will not be published.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

Peaches May 2, 2021

Zonegran (zonisamide) for Seizures: “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
Rose April 25, 2021

For Migraine Prevention: “I took it during 5 months. At the beginning everything was great, I finally stopped having headaches all the time. Time passed and I was only getting more side effects. I could sleep 12 hours and still be sleepy, I had trouble with memory and concentration, I basically couldn’t read too many phrases because I was getting confused. It came to a point where I noticed that I had an enormous amount of anxiety, social panic, I was getting depersonalization feeling behind the cloud like I wasn’t here, like I wasn’t myself. 0 spontaneity and willingness to do anything. I decided to stop it. It can’t be helping one problem but causing so many others. I will see which other solution I can get now for my migraines cause they are starting to come back as the medicine is clearing out of my system. (tried topiramax before and it went awful after the first pill). This is to say, all the other side effects that I mentioned went away after I stopped it, so it was definitely its job.”

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

Zonegran (zonisamide) for Seizures: “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
betterhelp June 18, 2020

Zonegran (zonisamide) for Seizures: “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
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
Still Looking January 4, 2012

Zonegran (zonisamide) for Migraine Prevention: “I've been taking Zonegran for a few years now at 300mg per day. It had really gotten my headaches under control to where I would only have a headache periodically. Weight loss has been a side effect that I haven't minded. The problem is I've had significant memory and focus issues. I hardly felt competent most of the time. I have slowly weened myself down to 100mgs per day (I notified my neurologist of this because its an anti-seizure medicine so you shouldn't stop it cold turkey or it could cause a seizure). My memory has improved significantly, but the headaches have returned with a vengeance. I'm back to taking narcotics to address each debilitating headache. I used to take Topamax. It too worked beautifully, but also wiped out the memory.”

9 / 10
What memory January 12, 2014

Zonegran (zonisamide) for Migraine Prevention: “I took Topamax for a while and it worked wonders but the side effects were insane. However, the zonesamide works very well for preventing my migraines. I take 400 mg a day. Word finding and memory, I don't even know what those are anymore. However, I was living in constant pain. Nothing was working for me. This is the only thing that has done anything for me in years.”

7 / 10
Tara h. December 8, 2016

Zonegran (zonisamide) for Migraine Prevention: “Well it all started with dizzy spells that got so bad I couldn't even stand up. I was in the hospital for almost 24hr. They had no idea what was wrong. They suggested I see a neurologest ASAP. After making the appointment to see who they suggested, I wouldn't be able to see them for 4months. So I reached out to my family. They said to see a headache specialist. That sounded crazy to me at first. After meeting this new Doctor the same day I called him. He put me on Topamax I believe it was called, which I had almost every side effect from. So he decided to put me on zonegran small doses and work my way up. This medicine is amazing. I have no side effects at all and no more migraines for about a year now.”

9 / 10
Emily G. October 9, 2013

Zonegran (zonisamide) for Seizures: “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
Zonegran User March 30, 2011

Zonegran (zonisamide) for Migraine Prevention: “I have used Zonegran for headaches only. It is the only thing that seems to have lessened them somewhat, but I still have headaches and they affect me cognitively. I'm mentally slower, have word-finding problems, my memory is bad, and my attention is terrible. I've tried to go off it on occasion, but my headaches get absolutely awful, so I stay on it.”

6 / 10
Childfree91 · Taken for 10 years or more January 16, 2014

Zonegran (zonisamide) for Seizures: “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
Chris · Taken for less than 1 month March 29, 2021

Zonegran (zonisamide) for Migraine Prevention: “Zonegran (zonisamide) did ease my chronic migraine but about 10 days after starting 100mg/day, I developed 'acute myopia,' which means I essentially lost my vision over the course of about 24 hours. Thankfully my vision returned a few days after stopping the drug. An ophthalmologist examined me and there is no long-term damage. If you try Zonegran, please watch for changes to your vision and call your doctor immediately should you notice any changes at all.”

2 / 10
James_D · Taken for 1 to 6 months January 5, 2016

Zonegran (zonisamide) for Migraine Prevention: “I was taking 6-8 Excedrine Migraine daily to control my headaches. I saw a neurologist and was put on Zonegram. It took 1 month to build up to 100 mg per day. I was headache free after 2 months and have been that way for 3 months now. I will step down from the pills in 6 months. No side affects for me at all .”

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

Zonegran (zonisamide) for Seizures: “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
Ridiculousness April 13, 2013

Zonegran (zonisamide) for Seizures: “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
Seizuregrlll · Taken for 6 months to 1 year April 17, 2014

Zonegran (zonisamide) for Seizures: “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
Steve_pain November 26, 2014

Zonegran (zonisamide) for Migraine Prevention: “I have been given many different diagnosis (Hemicrania continua, primary trochlear headache, Atypical Trigeminal Neuralgia) currently I have migrainous type chronic headache with Atypical Facial Pain. I was on 300 mg Topamax with a bunch of other stuff and this helped, but I couldn't add 2 2. It was like north pole magnets coming together. Now I have been on 200mg Zonisamide (Zonegran) for about 2 years and I have a 50% reduction in pain. As for cognitive impairment, I can live with the loss of spelling and reduced vocabulary. It's not that bad compared to either the pain or Topamax.”

9 / 10
JBuns April 20, 2015

Zonegran (zonisamide) for Seizures: “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
Wildreign · Taken for 10 years or more January 4, 2016

Zonegran (zonisamide) for Seizures: “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
Feeling hopeless August 27, 2020

For Seizures: “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
BLove01 March 18, 2016

Zonegran (zonisamide) for Migraine Prevention: “I took 300mg of zonegran for nearly 2 years. It worked really well to prevent my migraines at the start--it was like a dream come true. I did experience appetite reduction and weight loss, but I put it back on after about a year. The negative side effects were extreme for me over time. First, my depression got much worse. That could have been external factors, but the time that I started taking Zonegran and the severe increase in my symptoms match. Also, after some time, I noticed my cognitive function was severely inhibited. I was in graduate school at the time and began failing classes, slurring my words when 100% sober, and unable to remember things. When I went off, my migraines returned severely, especially period and allergy migraines”

7 / 10
Cat lady · Taken for 10 years or more September 4, 2020

For Seizures: “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
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
HeadacheFree28 February 26, 2017

Zonegran (zonisamide) for Migraine Prevention: “In the past, I had been given all types of medicines for migraine prevention and by far Zonegran has been THE BEST. I've had very few side effects that I can notice. The number of headaches that I normally have are decreased tremendously! I can really tell when I miss doses of the medication because the headaches come back full force but once I get the medicine in my system again, everything is all good! If you haven't tried Zonegran, PLEASE DO!”

9 / 10
NewtoSeizures · Taken for 1 to 6 months December 3, 2020

For Seizures: “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
Brittani31 · Taken for 6 months to 1 year November 29, 2016

Zonegran (zonisamide) for Migraine Prevention: “For Migraine Prevention Ive tried amitriptyline, Imitrex, propranolol ,Fioricet & Topamax and for a while and they worked but the side effects were insane. However, the zonesamide works very well for preventing my migraines. I take 300 mg a day. Word finding and memory, I don't even know what those are anymore. However, I was living in constant pain. Nothing was working for me. This is the only thing that has done anything for me in quite some time, so do I walk around with a child like mind or not be able to get out of bed because of the pounding migraines?!?”

3 / 10
dwenger86 · Taken for less than 1 month October 9, 2017

Zonegran (zonisamide) for Seizures: “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.”

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

Zonegran (zonisamide) for Seizures: “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

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.