Zonisamide User Reviews & Ratings (Page 3)

• 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."

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

For Seizures "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

For Seizures "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

For Seizures "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

For Seizures "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

For Seizures "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!"

• Hol...
• Taken for 1 to 6 months
• February 14, 2018

Zonisamide for Migraine Prevention "I just turned 19, and I've seen 3 neurologists, 4 neurosurgeons, and an epileptic specialist all in the last 6 months. None of them can really tell me what’s wrong with me, but Zonegran has helped a lot with the hard-hitting headaches. I still get dull “I can feel it” headaches almost every day, but nothing compared to what I used to get. I don’t get any major side effects, sometimes I slur or jumble words, but I can recover them quickly. If I take it on an empty stomach, my thought process is cloudy, but nothing major. Also, I was normal weight before, but I’ve lost 15 pounds since I started this medication 3 months ago."

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

Zonisamide for Seizures "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

For Seizures "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 for Seizures "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 for Seizures "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

For Seizures "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 for Seizures "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."

• Poo...
• Taken for 1 to 6 months
• April 6, 2022

For Migraine Prevention "I've been taking this medication for a little less than 2 months. I started with 100 mg for 1 week, then went to 200 mg nightly thereafter. Everything started out great. All of a sudden, I got this pressure-like pain in my eyes, my vision was really blurry, I was constipated, dry mouth (drinking water like crazy), memory faded, and I had absolutely no energy. For about a week, I could not get out of bed because I was off-balance and feeling sick. As I read these reviews, I see a lot of people were having similar issues as I did. My migraines came with full force, I would be in so much pain, all I could do was lay in bed. I started on a weight management program, and this medication was supposed to have helped with that as well. Instead, it caused me more problems than it's actually worth. I guess it's back to the drawing board because nothing has worked for me. I switched from Topamax to the zonisamide... now what's next?"

• Mar...
• June 26, 2015

Zonisamide for Seizures "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

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."

• Jam...
• January 19, 2017

For Seizures "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

For Seizures "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 for Seizures "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."

• Jen...
• Taken for 1 to 6 months
• August 10, 2016

For Migraine Prevention "I've had migraines since I was 11. No preventative had ever worked. We do control the asymptomatic intracranial pressure with acetazolamide 250 mg 2/day. Recently, my imatrix started causing rebounds, and my monthly migraine totals shot up from 6-8 shot-worthy (where the migraine causes a dark spot in the white matter in my brain) /month to 15-20, and I am living off of Excedrin Migraine. Neuro put me on this to be preventative. I've noticed little to no difference and am finding I'm gaining weight and am fighting depression and hopelessness when I'm alone. Neuro wants to up the dosage to 400 mg/day, but I don't think I can handle that. On a side note, in order to try to get off meds, I'm going to look into the implants because I can't maintain this."

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

For Seizures "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."

• Cha...
• Taken for less than 1 month
• January 17, 2021

For Migraine Prevention "Took zonisamide 50 mg/day for 30 days, for vestibular migraine. Took away my appetite. Went from 118 to 107 lbs, and counting. I also had side effects of insomnia, agitation, anxiety, full-blown panic attacks. I do not feel like myself! Told my doc, and she said to stop the zonisamide. 5 days off, and praying my body will recover. This stuff is awful."

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

For Seizures "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

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."

• Bet...
• Taken for 2 to 5 years
• February 10, 2020

For Seizures "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."