Zonisamide and Memory Loss: What Users Say

• Pea...
• May 2, 2021

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 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."

• Sti...
• January 4, 2012

Zonisamide for Migraine Prevention "I've been taking Zonegran for a few years now at 300mg per day. It has 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 weaned myself down to 100mg per day. I notified my neurologist of this because it's 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."

• Emi...
• October 9, 2013

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 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."

• Zon...
• March 30, 2011

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."

• was...
• Taken for 2 to 5 years
• March 23, 2020

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

• Ste...
• November 26, 2014

Zonisamide for Migraine Prevention "I have been given many different diagnoses (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 and 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."

• Dav...
• Taken for 2 to 5 years
• November 16, 2020

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."

• Per...
• 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 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?"

• Cat...
• 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."

• New...
• 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 50 mg BID and increased to 100 mg BID, did not stop seizures. Neurologist increased to 150 mg 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!"

• Sar...
• Taken for 1 to 6 months
• March 3, 2020

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."

• Anonymous
• Taken for 2 to 5 years
• March 26, 2019

For Seizures "I have been on Zonisamide since the age of 21 years and have nearly been on the drug for 3 years. Unfortunately, I feel it has gradually ruined my life ever since. I have noticed the side effects 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."

• Sei...
• Taken for 1 to 6 months
• July 28, 2021

For Seizures "Zonisamide has essentially ruined my life since being put on it. It caused one seizure because the memory issues caused by the drug led me to forget to take my seizure meds and seize, but aside from that, I’m just anxious, nauseous, and exhausted 24/7! In my house, it is known as Zombisamide. I opted to titrate onto Lamictal as soon as humanly possible."

• Juv...
• 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 100 mg 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 coworker's 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 are fine, but my memory, vocabulary, and ability to learn new concepts are 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."

• Yca...
• Taken for 2 to 5 years
• March 30, 2017

For Migraine Prevention "I have tried everything in the book preventatively, but this is the first thing that's worked with the fewest side effects that I notice (I haven't noticed any of the brain fog or cognitive issues that I know of...but maybe I have them and just don't know, lol); I'm on 300 mg for a few years now - lost weight at first, which I didn't mind at all. But recently, every time there's going to be rain in the forecast, I wake up with a migraine...I wake up, have a headache - check the weather and sure enough, there's rain today, so I take a concoction and lay back down until it goes away. I'm going back for my regular checkup next month and we're going to have to discuss options because I cannot manage life around the weather like this."

• She...
• Taken for 10 years or more
• August 18, 2021

For Seizures "My husband has suffered three major strokes since 2007. The final one in 2008 left him with partial complex seizures. He was given Tegretol 300 mg twice a day. This didn't stop his seizures, and then he was given 300 mg twice a day of Zonegram (Generic Zonisamide) in addition to the Tegretol. His seizures have been controlled and the side effects have been minimal, except for the extreme loss of appetite and sleepiness. He was a robust 230 pounds when starting this medicine and now barely weighs 150 pounds. He is physically impaired and practically bedridden due to the weight loss and muscle loss. I also suspect that it affected his dental health as he kept losing his teeth one by one until he has full dentures now. I know that the weight loss may have been due in part to his dental issues, but I have read the many reviews concerning weight loss, which I believe is being caused in part by this medication. He has also experienced lightheadedness and short-term memory loss."

• Anonymous
• October 26, 2009

For Seizures "I take Zonisamide with Tegretol, and it works great in controlling my seizures. I do have loss of memory, stuttering, and itchy skin. All of these have occurred in the last year, and I've been taking it for 2.5 years."

• RJb...
• Taken for 1 to 2 years
• April 10, 2017

For Seizures "Extreme weight loss, tremors at night, increased seizures, loss of memory, shaking, panic attacks, loss of self-confidence, extreme depression."

• JJK...
• Taken for less than 1 month
• November 6, 2021

Zonisamide for Seizures "Not a fan of Zonegran, it did not improve my seizure condition at all and caused hyperglycemia, increased hunger, loss of muscle, and memory impairment."