Zonisamide for Migraine Prevention User Reviews (Page 2)

• sissie
• February 17, 2016

"I started having daily migraines Sept. 2014. Topiramax (can't spell anymore). from primary MD. No improvement. Saw neurologist Dec. 2014. started on Zonisamide. 50mg. built up to 150mg. was having about 28 migraines pre meds. Decreased to about 22. for a few months. Then decreased to 14-18 per mo. summer of 2015. Took Pt. end of summer and headaches increased to upper 20s again. MRI done in summer showed Spinal Stenosis but no severe enough to warrant surgery. Dosage of Zonisamide increased to 250 mg. did not help so Neuro. decreased it back to 150mg. pain became more severe and every day. At present am on 200 mg. and to go up to 250 mg. next week. Still with migraines every day. Getting 2nd set of spinal injections with steroids tomorrow."

• Rob
• Taken for 1 to 6 months
• June 30, 2020

"I've had severe chronic migraines for the last 11 years, age 62 now. I've tried just about everything, Imitrex with Naproxen worked best and had the least side effects. My Neurologist took my off Levetiracetam because it wasn't working as a prophylaxis and put me on Zonisamide. He's starting me at 50 mg and I have noticed a decrease in severity and duration of the migraines, but not a decrease in quantity so far. I don't have any motor side effects, but I've lost 12 lbs. so far and I can't really afford to lose any weight. If it continues, I'll have to stop as I am now at 157 lbs as a 5'11'' man."

• Charly
• Taken for less than 1 month
• January 17, 2021

"Took zonisamide 50mg/day for 30 days, for vestibular migraine. Took away my appetite. Went from 118 to 107lbs, 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."

• Bluwi...
• September 26, 2015

"My migraines started suddenly at age 52 have no idea why. I have tried several different medicine including topomax I am now taking 400 mg zanisamide as first preventive and starting another new medicine this next week to see if it will help the head pain. I get daily migraines scale 3 -5 on a average and can increase at anytime through the day to 6-7 at which time I have to take a treximet or wait to see if it passes, sleep, ice quite what ever I can do till it goes away. I have also tried botox that didn't work either"

• Anonymous
• Taken for 2 to 5 years
• April 13, 2018

"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"

• Lglo
• February 7, 2017

"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??"

• Wimka
• Taken for 1 to 6 months
• July 6, 2018

"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."

• Laur
• Taken for 1 to 2 years
• September 2, 2019

"I have had uncontrolled atypical migraines for 31 years. Reading over this I noticed so this is why my migraines are so much better, it is I am now on 200 mg zonisamide for seizures. My migraines don't seem as bad. None of the doctors knew this was a choice drug for treatment of migraines. Sometimes I'm a better doctor than the doctors are."

• Fitz
• August 3, 2018

"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."

• Goatie
• Taken for 1 to 6 months
• January 7, 2018

"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."

• Rose
• April 25, 2021

"I took it during 5 months. At the beginning everything was great, I finally stopped having headaches all the time. Time passed and I was only getting more side effects. I could sleep 12 hours and still be sleepy, I had trouble with memory and concentration, I basically couldn’t read too many phrases because I was getting confused. It came to a point where I noticed that I had an enormous amount of anxiety, social panic, I was getting depersonalization feeling behind the cloud like I wasn’t here, like I wasn’t myself. 0 spontaneity and willingness to do anything. I decided to stop it. It can’t be helping one problem but causing so many others. I will see which other solution I can get now for my migraines cause they are starting to come back as the medicine is clearing out of my system. (tried topiramax before and it went awful after the first pill). This is to say, all the other side effects that I mentioned went away after I stopped it, so it was definitely its job."

• Anonymous
• June 9, 2018

Zonegran (zonisamide) "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?"

• Heada...
• February 5, 2022

"Love this medicine. Been on it since 2002 with little to no side effects. When neurologists bumped me up to 300 mg a day consistently started having some neuropathy in my feet but bumped back down to 200mg and have had no issues. This medicine gave me my life back. Went from having daily debilitating migraines to bring able to function again. Have never been able to wean off. Thankful for it!"

• Ashlee
• Taken for 1 to 6 months
• September 9, 2021

Zonegran (zonisamide) "I started using Topamax and had a full body reaction so my neurologist switched to Zonegran. I have been taking 300mg for awhile and I no longer have migraines but I now have acne that I have never experienced before. It’s starting to get so bad that I’ve considered stopping this medication. Aside from the acne, it really does help with the migraines."

• Fever...
• Taken for 6 months to 1 year
• December 28, 2017

"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."

• Anonymous
• Taken for 2 to 5 years
• October 25, 2012

Zonegran (zonisamide) "I don't notice any side effects compared to some of the other anti-seizure medicines."

• Migra...
• August 21, 2016

Zonegran (zonisamide) "I have been taking 100 mg of Zonegran daily for about a month, and have noticed a reduction in the amount and severity of my migraines."

• Anonymous
• April 12, 2012

"I have chronic headaches (>15 per month) and tried many treatments that did not help: Botox, Topamax, and others. With zonisamide my headaches are mostly limited to just the week before my period."

• Anonymous
• March 19, 2011

Zonegran (zonisamide) "I just got put on this medication for migraines. I took Topamax in the past but side effects were way too much for me."

• Anonymous
• November 28, 2011

Zonegran (zonisamide) "On 50 mg and have seen a huge improvement in my migraines. Down to 5 per month."

• grits...
• Taken for 6 months to 1 year
• December 29, 2015

"It has stopped my migraines for almost a year. I've lost weight and muscle stone, my appetite has gone."

• Anonymous
• Taken for 1 to 6 months
• March 11, 2019

Zonegran (zonisamide) "Zonegran works great for my pain but I am so tired ALL THE TIME. I'm getting off of it soon I can't handle it anymore."

• For...
• July 26, 2015

"I'm taking this as a last resort, have tried every med out there. Next stop is a Clinic in September. Have had migraines for more than 50 yrs."

• Lucyh...
• Taken for less than 1 month
• December 28, 2017

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

• Aamm
• Taken for less than 1 month
• August 28, 2021

"I had severe psychosis after taking this medicine for 4 days. Then hallucinations and delusions lasted hours and I was in the hospital. Never again!!"