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User Reviews for Zonisamide

Also known as: Zonegran

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

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Condition Avg. Ratings Reviews Compare
Migraine Prevention
6.6
   
37 reviews 31 medications
Seizures
6.4
   
47 reviews 50 medications
Benign Essential Tremor
6.0
   
3 reviews 3 medications
Summary of Zonisamide reviews 6.4 87 reviews

Reviews for Zonisamide

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Zonegran (zonisamide) for Seizures: "I've been taking Zonegran for 12 or so years and have had no problems at all-not one seizure for years. I ride Motor cycles fast and not once have I had a problem."

   
10

Lots of them (taken for 10 years or more) August 28, 2018

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For Migraine Prevention: "I have had migraines for the past 3 years, and did not want to get diagnosed due to the fact that I'm in the military and the medical there is often not the best (patch it up and send it off). The past 6 months have been the worst so I went in, and was put on Maxalt, maxed out on it first day. Then I got Sumatripitan which works but the side effect (knocks me on my butt) are hard to deal with at work. So they put me on Topamax, absolutely loved it. 16 days no headaches, no migraines nothing. But I had an awful itch that was worsened by sunlight. So put me on nortriptyline at 50mg. I also have temporomandibular joint disorder Disorder ( due to grinding my teeth during sleep) so after I was put on the nortriptyline the migraines would cause my temporomandibular disorder (TMD) to flare up intensifying my migraines. I really loved topamax because it relaxed both conditions. Two birds one stone. But was put on Zonisamide 100 mg on top of the nortriptyline 50mg yesterday. Woke up this morning itchy."

Fitz August 3, 2018

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Zonegran (zonisamide) for Seizures: "This drug is great for seizures. I literally don’t have any when taking it. The only side effects I see is fatigue, and serious weight loss. I’m down 20 pounds from this drug."

   
8.0

Kay (taken for 1 to 6 months) July 19, 2018

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For Migraine Prevention: "I had been taking Topamax & it worked preventing my migraines without bad side effects (just weight/hair loss, which were both appreciated). However after starting hormonal birth control, I wanted to stop it to eliminate the possibility of it decreasing the effectiveness of the BC. My neurologist recommended Zonegran since it's a similar anticonvulsant & he's had patients successful with it. 10 days after building up to my full dose (100mg nightly) I began feeling nauseous. I was lightheaded, out of breath, & had to lay down. For the following week I was nauseous & sometimes lightheaded, & missed 2 days of work. After realizing Zonegran was the only change, I began to wean off of it. The nausea was better as my dose decrease & gone after stopping. Unfortunately I can't take triptans due to the birth control since I get migraines with aura & my neurologist won't prescribe antidepressants to people already on one. So beta blockers are my next try, regrettably."

Wimka (taken for 1 to 6 months) July 6, 2018

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Zonegran (zonisamide) for Migraine Prevention: "I have been taking zonegran for migraines for about a month. It has helped tremendously. Unfortunately the past few days my eyes have been in so much pain. And that is causing my head to hurt. I am wondering will this side effect go away?"

Anonymous June 9, 2018

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For Seizures: "My second neurologist prescribed me 100mg caps, one at night for a week, then increase to 2 caps for a week, then 3 caps at night for a week. The first week it made me so sick, horribly dizzy, like a bad flu feeling in the morning. Called her, told her about the horrible side effects, she wanted me to give it one more week on just 100mg to try and get use to it. No good, second week I was just as sick. I'm disabled, deaf, had major cervical surgery March of 2017. Next May I was hit with seizures, in ICU for 5 days, 20 seizures first day and night. My first worthless neurologist put me on Depakote, It stopped the seizures at least, but made me so sick I insisted he get me off the poison. Cause of seizures are unknown. Endless tests, EEG showed perfect along with the MRI of my brain. I plan on joining Mensa , after a cochlear implant there in the next few months. Last seizure I had was April 5th, 2017, over a year ago."

   
1.0

Jeff April 16, 2018

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For Migraine Prevention: "I was put on Zonegran for Back issues, I was in so much pain with discs out of place in my upper and lower back that I honestly thought I had cancer, I am a Breast Cancer Survivor and when this pain hit I started looking for answers and started seeing doctors, the doctors including my oncologist ran tests and they came out normal. I was referred to a neurologist and he ran tests only to find out the problem was my back and my options were surgery or meds, this medication, causes brain fog and hair loss and sometimes I can’t find my words, It can also cause UTI’s if you don’t drink enough water, for the hair loss add vitamin b6 100mg a day it helped me! I take 400 mg a day and 200 mg of topiramate for the last 3 years and have lost over 100 pounds so then there’s that"

   
8.0

Anonymous (taken for 2 to 5 years) April 13, 2018

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Zonegran (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 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."

   
1.0

Tess (taken for 1 to 2 years) March 21, 2018

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For Seizures: "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."

   
8.0

Meandering (taken for 1 to 2 years) February 26, 2018

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For Seizures: "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."

   
1.0

JessHayden101 February 22, 2018

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Zonegran (zonisamide) for Migraine Prevention: "I just turned 19 and I've seen 3 neurologists, 4 neurosurgeons, and a 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 everyday but nothing compared what I used to get. I don’t get any major side effects, sometimes I slur or jumble worlds 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."

   
8.0

Holly19 (taken for 1 to 6 months) February 14, 2018

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For Migraine Prevention: "No effect on my migraines. First I got a blotchy rash on neck, then reg rash under my breasts and on bilat sides of my groin. If I don't use vaginal cream every 1-2 days, I touch cant hardly touch it with a washclboth. There is a clear drainage here. The rest of my body, especially my back itches like crazy. The ends of a lot of my fingers are split and they are painful. They have been like this for almost 2 months. My appetite is suppressed and I've lost some weight."

Goatie7219 (taken for 1 to 6 months) January 7, 2018

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For Migraine Prevention: "Migraines started after my hysterectomy in 2010. They have worsened since to the point now they are at least 3 times a week and debilitating. Was on several maintenance meds including topamax which worked for a while but always stopped working over time. The topamax worked over a year but caused horrible buzzing in my head, which neuro prescribed amitryptilline for. That did nothing lol. Eventually I began seeing an awesome neuro P.A. who started me on zonisamide 100 mg, then upped to 200 mg after a month cause headaches were creeping back. Just this week I had to call him again for the same reason plus the buzzing has started again....sigh. still, zonisamide does seem to work well. I just need the right dose."

   
6.0

FeverishDrmr (taken for 6 months to 1 year) December 28, 2017

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For Migraine Prevention: "I feel ill on this drug. Headache, muscle aches, nausea, constipation, gait problems."

   
3.0

Lucyhipp (taken for less than 1 month) December 28, 2017

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Zonegran (zonisamide) for Seizures: "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."

   
6.0

Nikinoo (taken for 1 to 2 years) November 20, 2017

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Zonegran (zonisamide) for Seizures: "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% of 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 effect 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."

dwenger86 (taken for less than 1 month) October 9, 2017

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For Seizures: " This drug made me angry to the point that I could not use it. I am normally very laid back but this made me aggressive and difficult to live with."

   
3.0

Arthur13217 October 9, 2017

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For Seizures: "I began taking this drug July 2016 I had to take myself off of it because I had enough of the side effects My docter would not even consider me withdrawing from it completely from and telling me to wait for the appt with my consultant neurologist in the UK which I could not do (2 months) Side effects were terrible aching, burning patches all over my body, very low mood (not quite depression) I have been diagnosed with Epilepsy since I was 18 but the side effects were worse than the condition although I did have several seizures. I am an English woman living in the UK. I have to include that side effects started several months after taking this drug and I can positively state that it was all because of this DRUG Zonisamide"

   
1.0

Moose16 (taken for 6 months to 1 year) August 31, 2017

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Zonegran (zonisamide) for Migraine Prevention: "The medication worked well to prevent migraines. However after one month of use I developed joint pain/swelling and a rash. It was determined I had drug induced lupus and the medication was discontinued."

   
5.0

Meemfelds (taken for 1 to 6 months) May 19, 2017

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For Migraine Prevention: "Was diagnosed with Occipital Neuralgia and the pain was excruciating. 25 plus days a month in pain. Now taking 150mg Zonisamide and have been pain free for 21 days straight. First time in 3 years. So far not experienced any side effects."

   
10

Kathy K May 13, 2017

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

   
2.0

RJbates9444 (taken for 1 to 2 years) April 10, 2017

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For Migraine Prevention: "I have tried everything in the book preventatively, but this is the 1st 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 if...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'a 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 til it goes away. I'm going back for my regular checkup next month and we're gonna have to discuss options coz I cannot manage life around the weather like this."

   
7.0

Ycatsms (taken for 2 to 5 years) March 30, 2017

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Zonegran (zonisamide) for Migraine Prevention: "In the past, I had been given all types of medicines for migraine prevention and by far Zonegran has been THE BEST. I've had very few side effects that I can notice. The number of headaches that I normally have are decreased tremendously! I can really tell when I miss doses of the medication because the headaches come back full force but once I get the medicine in my system again, everything is all good! If you haven't tried Zonegran, PLEASE DO!"

   
9.0

HeadacheFree28 February 26, 2017

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For Migraine Prevention: "I will be starting Zonisamide today. I've had migraines for over 30 yrs and tried every drug out there. Was on Topamax for many years but the side effects were terrible. I'm a little nervous to start this drug because it's in the same class of meds but I'll give it a try.! My neurologist also wants me to add in Nortriptyline in a month. Has anyone taken this combo??"

Lglo February 7, 2017

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For Benign Essential Tremor: "My shaking is well controlled but I don't like the side effects I have. I am positive the problems are drug related. I have facial pain, like a sinus pain, nasal burning, occasional headaches, lips and mouth tingle. I no longer have orgasms. I have low blood pressure so I couldn't take certain other medications. A couple others make me very nauseous. I decided to live with the side effects of zonisamide for now."

   
7.0

Mwagne (taken for 2 to 5 years) January 27, 2017

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