Zonisamide for Seizures User Reviews (Page 2)

• Newto...
• 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 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!"

• Sulle...
• July 26, 2011

Zonegran (zonisamide) "On maximum dose with Keppra, and still having some break through seizures. Still less then I was having before. No side effects. Had a full term pregnancy while on medication. Baby is very healthy."

• My_Life
• 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 bro's and sis's living with epilepsy out there."

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

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

• Zeik
• Taken for less than 1 month
• June 26, 2020

"I've tried a few seizure medications and this one is by far the worse one I've had, this medication had my body feeling weak, shaking like I had parkinsons, gave me erectile disfunction, 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"

• pink
• December 27, 2008

Zonegran (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."

• Grand...
• 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."

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

Zonegran (zonisamide) "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!"

• Tess
• Taken for 1 to 2 years
• March 21, 2018

Zonegran (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 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."

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

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

• Waithe
• February 4, 2016

"I'm currently on Lamictal 350mg. My neurologist, due to the cost is weaning me off this medication to Zonisamide 200mg. 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 is states, "I have never heard of a medication causing the seizures, but nevertheless I want you to stay on them cause 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!"

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

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

• Beth
• 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."

• Juven...
• 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 100mg 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 coworkers 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 is fine, but my memory, vocabulary and ability to learn new concepts is 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."

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

• Nikinoo
• Taken for 1 to 2 years
• November 20, 2017

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

• Sissy
• Taken for 10 years or more
• October 27, 2020

"I take Zonisamide 100mg 4 times a day, 2 in the morning, 2 at night. I've been taking this for 10 yrs now. There have been times when I have not had any it 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 yrs ago, which caused the seizures. So, this medicine is a must for me, with no problems after 10 yrs."

• Lindy
• Taken for 2 to 5 years
• August 16, 2020

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

• Markus...
• June 26, 2015

Zonegran (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 affects to my body by giving more seizure's & head aces ."

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

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

• Jamie...
• 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 nauseous or even vomit, I wish there's somethin someone could do to help!!!"

• Mike...
• Taken for 1 to 6 months
• October 20, 2018

"Took this epilepsy drug and within a few weeks I lost the plot. I felt as though my brain would explode with the rage inside, then felt suicidal. OBVIOUSLY I don't recommend this in any shape or form. Be aware as the dose increases, your brain starts to shut down."

• Bruan
• June 30, 2016

Zonegran (zonisamide) "I first took it in 1984 as part of the study. It was so, so, didn't work sufficiently and the epileptologist took me off of it for fear of kidney stones impacting a teenager. When having major problems with Onfi and having tried 25+ meds over the past 41+ years I thought I'd see if Zonegran was improved. A physician at Georgetown University in DC failed, like FDA, to proved information stating that the med can make a person who has had trauma and/or brain surgery go into orbit. It controlled seizures a few months, made me do impulsive things like request retirement from a position paying over $104k/year. It made me hostile, nervous, go nuts, and elevated my Dilantin level, caused gingival hyperplasia so my teeth are painful and ruined."

• Harvest
• June 13, 2016

"Seizure free for over 2 years on Glenmark's Zonisamide. It would be closer to 5 years but the pharmacy switched to another supplier and I had 2 seizures and ended up in the hospital. I do at times have some brief dizziness and notice that I don't sweat as much but these are light side effects given some of the brain numbing comatose side effects of other drugs that I have tried."

• JessH...
• February 22, 2018

"Started Zonisamide about a week ago and at first it was okay. I had a bit of mind fog and now I feel as if I have the flu, my head hurt constantly, even tho I was told to take my meds at night I couldn't sleep for hours even though I was exhausted, I lose my breath easily, and get super anxious for no reason. Even worse I called my doctor and they won't take me off of it. Side effects are AWEFUL."