Zonisamide for Seizures User Reviews (Page 2)

• New...
• 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 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!"

• pin...
• December 27, 2008

Zonisamide "I love Zonegran. I have no seizures while on this medicine. The only time I experienced a partial seizure was recently when I began including yogurt in my daily diet. Since I excluded that, I'm seizure-free again."

• ste...
• July 3, 2016

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."

• Gra...
• April 27, 2016

"I had my first seizure at age 56. Reason still unknown. The doctors had a terrible time getting them under control. My husband and I didn't know what was going on. Zonisamide gave me back my life! I had some side effects at first, but they passed after about a month. The side effects I had were drowsiness and a feeling of confusion...but all of this passed. Then things slowly got back to normal. Now I have been on the Zonisamide for 3 years and have been seizure-free...completely...for 2 years. This is a good med. It saved me."

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

"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."

• Zei...
• Taken for less than 1 month
• June 26, 2020

"I've tried a few seizure medications, and this one is by far the worst one I've had. This medication had my body feeling weak, shaking like I had Parkinson's, gave me erectile dysfunction, 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."

• Mea...
• Taken for 1 to 2 years
• February 26, 2018

"First seizure at age 58 and a second 16 months later, at which time I was prescribed zonisamide. I was told I could step up from 25 mg twice a day to 100 mg twice a day. But I stopped at 50 mg twice a day. No seizures since being on medication and am on a 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 vitamin 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 75 mg in the evening only. Hope to reduce to 50 mg next year."

• My_...
• June 20, 2015

"If looking like a meth user is your thing, while trying to become 'seizure-free,' then this is your drug. Horrible drug. Not sure how this drug even passed the FDA. Even my grandma thought I was doing street drugs. Yeah. Not cool. Good luck to all my bros and sis living with epilepsy out there."

• Hon...
• Taken for 10 years or more
• December 19, 2016

"I've taken this drug for approximately 23 years. While it was appropriate at the time I began, my health has changed, making this drug dangerous. Renal failure, kidney stones, and osteoarthritis are among the top reasons this isn't appropriate now. I know the drug leaflet proclaims, 'your doctor has decided the benefits outweigh the risks,' but that's not his decision to make, my body-my decision! New doctor!"

• Wai...
• February 4, 2016

"I'm currently on Lamictal 350 mg. My neurologist, due to the cost, is weaning me off this medication to Zonisamide 200 mg. I previously had an EEG while on this medication. I had four seizures while in the hospital and recently weaned myself off this medication. My neurologist states, 'I have never heard of a medication causing the seizures, but nevertheless, I want you to stay on them because they are helping you! I'm torn between a rock and a hard spot! I keep having seizures every month whether on these meds or not, and my job is at stake. Don't know what to do!"

• Tes...
• Taken for 1 to 2 years
• March 21, 2018

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 I 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."

• Sis...
• Taken for 10 years or more
• October 27, 2020

"I take Zonisamide 100 mg 4 times a day, 2 in the morning, 2 at night. I've been taking this for 10 years now. There have been times when I have not had any due to no insurance, that's when I'll have a seizure. Fortunately, I have not had any side effects from the med. Most problems I've had that can classify as a side effect of Zonisamide are actually a side effect of the TBI I went through 18 years ago, which caused the seizures. So, this medicine is a must for me, with no problems after 10 years."

• Let...
• Taken for less than 1 month
• August 27, 2020

Zonisamide "This week I've started on 50 mg Zonegran at night, and over the next few weeks, I will be increasing to 200 mg daily. This is the 9th AED I have tried for my complex partial epilepsy. I am taking this in conjunction with 400 mg Tegretol daily and 10-30 mg Frisium daily. I experience auras daily and have seizures approximately 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!"

• Nik...
• Taken for 1 to 2 years
• November 20, 2017

Zonisamide "Effective prevention of seizures, but I only had two episodes 16 months apart, started at age 57. Started at 25 mg twice a day, increased to 50 mg. Was prescribed to go up to 100 mg but requested to stay on the 50 mg 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 my neurologist in a couple of weeks."

• IM ...
• 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 100 mg nightly. Only a couple of 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 the bottom of my feet was experienced by others. I am a 3-time Ironman triathlete, ran multiple marathons, and have 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."

• Sat...
• Taken for 5 to 10 years
• April 30, 2022

Zonisamide "I have been taking generic Zonegran for over 5 years now to control partial seizures that can turn into generalized seizures. I take 300 mg daily and rarely have partials. Before taking this, I had them every day, sometimes multiple times a day. I also have had zero migraines. I’m especially glad to be rid of freaky ocular migraines I used to suffer every few months. The first several months on this drug while going up in dose, I was tired and foggy. I don’t feel any side effects really now, except I sometimes notice word-finding struggles that I think are from this drug. I have a demanding job and do well with analytical thinking, memory, etc. Definitely do need to drink plenty of water as recommended on this medication or your kidneys, bladder, and urinary tract will be unhappy."

• Mar...
• June 26, 2015

Zonisamide "I took the medicine for 17 years after I had a VNS implant for my seizure disorder, the brand name medicine I considered to have the most positive experience in removing them overall, as the generic brand names had all side effects to my body by giving more seizures and headaches."

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

"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."

• Jam...
• January 19, 2017

"I'm currently on zonisamide (Zonegran). I've been on it for years now to the point that it's doing nothing for my seizures and everything for my weight and mood that I don't want it to. I now suffer from not getting an appetite at all. My migraines are ridiculously painful to the point it sometimes makes me nauseous or even vomit. I wish there's something someone could do to help!!!"

• Lin...
• Taken for 2 to 5 years
• August 16, 2020

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

• FID...
• Taken for 1 to 6 months
• September 19, 2023

Zonisamide "I take the medication 100 mg in the morning. I should increase it to 200 mg, but I don't want to take the risk. It's very difficult to think clearly when you have a headache and can't fall asleep at night. It's challenging to function during the day with this medication, you feel confused and lost. However, the seizures have become less frequent. The only downside is that sometimes I have falls during the seizures. I take it along with Keppra and Trileptal."

• Syn...
• Taken for less than 1 month
• September 11, 2019

"Began zonisamide: 100 mg once a day, in the 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 I 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."

• Anonymous
• Taken for less than 1 month
• March 2, 2021

"5 days on this medication, and I started having very bad and scary psychotic thoughts and severe suicidal thoughts, which are terrifying. Also developed severe headaches, which had stopped with nortriptyline but started with this medication. I am STOPPING IT, as the suicidal thoughts are too much. I never had a seizure on it, which was great but not worth the side effects. Great for seizures."

• Juv...
• 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 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."

• Bet...
• 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."