Zonisamide for Seizures User Reviews

• bet...
• 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"

• Pea...
• 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 to 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 because 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 for those who already cannot communicate clearly due to age or disability."

• Mom...
• Taken for 10 years or more
• March 5, 2025

"My special needs adult daughter has been taking this medication for probably 20 years and has great results. She does not suffer from anxiety, anorexia, or depression as some have. She has tried various meds plus the vagus nerve stimulator, but now her seizure control is at its best using Zonisamide (100 mg, two caps twice a day) and one additional seizure med."

• Emi...
• 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 125 lbs and now after three children weigh 105 lbs 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."

• Sei...
• Taken for 6 months to 1 year
• April 17, 2014

Zonegran (zonisamide) "Zonegran, unlike Keppra and other seizure medicines, gives 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 fluctuations in my womanly cycles. Other than that, this medicine has been the best one for me and has been a great relief to me."

• Chi...
• 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!"

• Rid...
• 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."

• JBu...
• 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! :)"

• was...
• 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 you're thinking about taking this medication, make sure to DRINK WATER!"

• Wil...
• 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 for all 15 years. Prior to that, I was on Topamax (brand name only) and was seizure-free for 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 I experience 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!"

• dwe...
• 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% or 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 affect 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."

• 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 AEDs. She has had 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 an increase in seizure activity."

• ste...
• July 4, 2011

Zonegran (zonisamide) "I have recently been on Topamax and Keppra, both maxed out. My headaches were worse and my seizures were still happening. My doctor finally switched me to Zonegran 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!"

• Dav...
• 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."

• rin...
• Taken for 2 to 5 years
• October 21, 2013

Zonegran (zonisamide) "Seizures decreased in frequency. 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 uncontrollable."

• We...
• 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 that 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 minimum 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 over 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."

• gol...
• November 25, 2013

Zonegran (zonisamide) "I have been taking Topiramate for complex partial seizures following my second subarachnoid bleed in 2005, but started to lose my hair, so I am now taking Zonegran. Since changing over, I feel very well, and the hair loss seems to be much improved, and I am feeling great!"

• Anonymous
• September 10, 2009

Zonegran (zonisamide) "I've been on this for over 6 months now and seizure-free since then. I do have a very mild loss in appetite, but that has not stopped me from eating, only how much I eat. Side effects are the lowest overall from all the other medicines I've been on in the past (Topamax, Trileptal, Depakote, and Phenobarbital). Best of all, it's only once a day!"

• Per...
• 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 20s. It's sad, really, and it makes me wonder: is this medication increasing the risk of Alzheimer's disease? I tried doing some research, but I couldn't find anything on it. What do you guys think?"

• Fee...
• August 27, 2020

"After 2 days of feeling okay 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 25 mg 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."

• eph...
• October 4, 2009

Zonegran (zonisamide) "So far, this is my choice of seizure medicines (complex partial and absence). Dilantin makes me sleepy, Tegretol and Topamax both gave me migraines. No seizures AND no headaches, yay! Zonegran does leave me a bit fatigued and seems to lessen the appetite (but that's not really a bad thing)."

• ste...
• 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 not have 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."

• Cat...
• 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."

• Kea...
• Taken for 10 years or more
• September 4, 2019

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

• Tay...
• Taken for 10 years or more
• April 30, 2020

"It controls the seizures. I had a grand mal 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 I'm 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."