Fycompa for Seizures User Reviews
Fycompa has an average rating of 5.0 out of 10 from a total of 17 reviews for the treatment of Seizures. 35% of reviewers reported a positive experience, while 53% reported a negative experience.
Reviews for Fycompa
- KAano
- Taken for 1 to 6 months
- September 23, 2018
"Fycompa caused my son to go into ketoacidosis with a 780 blood sugar. He was almost comatosed. He is not diabetic. Epileptologist Benbadis at Tampa General refused to believe it could be the Fycompa and refused to assist weaning. We weaned Fycompa without assistance and his blood sugar immediately regulated. He continues to not be diabetic. I do not recommend Fycompa. It is a Black box drug and big drug companies are masking the severity of the side effects."
- Anonymous
- April 3, 2015
"I have been on Fycompa now for 8 weeks. Prior to that, I was having seizure clusters almost every other day. Two were so bad I ended up in Trauma with a scull fracture and a broken nose and cheek bone. I have noticed some minor mood swings but nothing serious. I have also noticed a increase in my appetite. I also take Keppra and Lamictal, so I am not sure if that makes it better. Just happy I haven't had any seizures in 7 weeks and counting.."
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- anony...
- Taken for 1 to 2 years
- December 31, 2015
"Having tried 7 other medications none of which controlled my seizures I was happily surprised that a dose of 4mg of Fycompa does. More than 12 months and no seizures. Luckily I have not experienced suicidal thoughts. The only side effects I experience are a little aggression and tiredness but only very mild."
- Ladyb...
- Taken for 1 to 2 years
- October 7, 2018
"My daughter takes fycompa, keppra, tegretol, epilim, since being on fycompa her personality has changed and has frequent bowel motions, the seizures have improved but sometimes feel she would be better having more seizures and having her old personality back! Don’t like this drug!"
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- Lynn
- June 27, 2018
"Took fycompa only for a month, just stopped taking it. I hate it, I take it at night before bed. Yet during the day I feel like complete garbage the whole day! Dizzy and feeling totally off felt so bad while taking it that I kept thinking a seizure is coming on but didn't. Haven't had a seizure while on it but I definitely am not continuing to take it and would not recommend it."
- Michele
- Taken for 6 months to 1 year
- March 20, 2019
"Fycoma has reduced the number of seizures significantly but find I'm having a lot of joint aches. My knuckles are miserable and tight. I tried to ensure that I wasn't clenching my fists but when I tried to make sure my hand was flat, I had aches that way as well. I also feel aches in my leg, back and hips over night. I'm up to 8 mg at night at I have noticed that it's gotten worse over time. But, again, the seizures have decreased but the aches are miserable."
- DHarts
- Taken for 1 to 6 months
- November 9, 2017
"My husband takes this Fycompa along with Zonegran and Lamictal. He is slowly coming off the Zonegran since starting. Hasn't had a seizure since he started 2 months ago but he has turned into the biggest Ass you have ever met. Told him the other night I think I might prefer the seizures over his personality change. I hope this levels out soon. I told him we should call it Fightcompa!"
- NYY
- Taken for 6 months to 1 year
- March 14, 2017
"Fycompa is the best drug I have ever taken for seizures. I am nearly seizure free. When I now have a seizure I will stare for about two seconds. No falling or shaking. I have other meds but this is a life changer."
- Txgirl
- February 27, 2021
"In the 50 years I have had seizures, I have never taken a worse drug. I reported it to the FDA bad drug website. The side effects were so terrible they changed my entire personality. Mad me angry, impatient, and almost evil. My neurologist didn't want to take me off the medicine, it was an adjunct medicine, not my primary one, so I carefully reversed my dosage and changed back to the previous medication."
- Jherb
- Taken for 1 to 6 months
- August 21, 2018
"I started taking Fycompa a few months ago, and also take Briviact. I am taking 6 mg, which seems to be a relatively small dose. So far I don’t recognize any significant side effects that others have mentioned, but I have had a constant headache for days, and I think it’s probably because of Fycompa. My seizures have not been very well controlled this summer, but I like only taking one dose a day!"
- Hds
- February 5, 2017
"I tried this drug as part of a clinical trial for my 9 year old son. On the second night of taking the medicine he woke up having an over 7 minute seizure and stopped breathing during one of the clusters. His seizures were lasting 1 to 2 minutes prior and he has never stopped breathing. I had to call 911 which I've never had to do before. It was very scary. We have dropped out of the trial. I'm disappointed I was hoping this would help us as well as others."
- AVMgirl
- Taken for 2 to 5 years
- January 22, 2023
"I have a large arteriovenous malformation (AVM) that stretches across part of my temporal and frontal lobes. I had tonic-clonic seizures at least once a week, sometimes at work, on the train, while walking, while shopping… basically anywhere. I have been prescribed different medications in the past including Topamax, Keppra, Trileptal, Mogadon, Lamotrigine, and Tegretol but they have not worked. Fycompa is the only medication that has been able to control my seizures. Yes, I do get side effects such as severe migraines if I’m more than 1 hour late taking it, anger problems, weight gain, lethargy, depression, poor sleep, unable to focus, slurred speech, memory issues and I feel like I’m high/tipsy 1-2 hours after taking it. But I willingly accept these side effects as long as I never have a seizure in a public place again. I’m a civil engineer and cannot afford to have seizures on an active construction site. I love Fycompa!"
- Tryum...
- Taken for 6 months to 1 year
- August 21, 2021
"Tried adding fycompa up to 8mg along with vimpat. Did not help to stop nocturnal siezures. The only side effect I noticed was eye irritation, eyes felt very dry and were red, looked irritated also. Went down to 4mg and eye irritation stopped but no help with seizures. I wish Parke Davis still made Dilantin!!"
- Jay
- Taken for 1 to 6 months
- September 6, 2019
"My 72 yr old sister had 2 mg of fycompa added end of March. By August she cannot walk or stand. Ataxia. Side effect. It’s the inability to move! Stopped the drug. She also sleeps almost 24/7 now."
- Evad
- Taken for 2 to 5 years
- November 1, 2019
"FYcoma is the best anti seizure medicine I have ever had,. I had a Grand Mal in 1969. I have been on countless ones over the years."
- Bcar
- Taken for 1 to 6 months
- February 15, 2021
"It’s one off the most HORRIBLE DRUGS OUT THERE!!!! DONT' DO IT!!! Absolutely fowl"
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
Learn more about Seizures
Care guides
- Epilepsy
- Epilepsy and Pregnancy
- Epilepsy in Children
- Febrile Seizure in Children
- Generalized Tonic Clonic Seizures
- Generalized Tonic Clonic Seizures in Children
- New Onset Absence Seizures in Adults
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"My boyfriend started this medication for better seizure control. He has had personality changes, confusion, aggression, hostility, delusions, depression and severe thought problems that caused him to have antipsychotic and antidepressant medication increased because of existing bipolar disorder. Our relationship is about over because of this medication. We will see the neurologist asap to see if he can get off this medicine. Scared because it's addictive. He had similar reactions to Vimpat with suicidal thoughts."