Fycompa for Epilepsy User Reviews

• Bre...
• April 7, 2020

"My daughter is 30 years old and had her first seizure at 7 years old due to a fever. She has been on multiple meds through the years and has never stopped them for long. Onfi stopped them, but then came the side effects. We stopped that. Eight months ago, she started having drop seizures. Very scary. Epileptologist put her on Fycompa 6 weeks ago. And yep, the effects started. Zombie acting, can't focus or remember, clumsy. The stomach issues and being very aggressive and hostile. I can't take the chance of her getting worse and suicidal. Will try to lower until off. She only takes 1 pill, low dose. Prayers for everyone."

• UKm...
• October 4, 2014

"This is a medication which I take for myself. Good points: It's very good at managing my form of epilepsy. My seizures are reduced remarkably, in direct relation to taking Fycompa. Bad points: I am having daily thoughts about suicide, I've never had this before taking Fycompa. And I've been on many Anti-Epileptic Medicines. This morning I was really suicidal. At a guess I'm one of those unlucky individuals who have increased psychiatric and behavioural problems in direct relation to this medicine. Now I'm in the position of making a decision about whether or not to continue using Fycompa and I'm having to make this very difficult decision with psychiatric issues."

• Tav...
• Taken for less than 1 month
• April 24, 2019

"I took my first dose and had three seizures later that night in my sleep. My doctor didn't tell me that it could cause seizures, if he stated that, there is no way I would have agreed to try it. My husband and I agreed that there's no way I'm taking that ever again. I've been taking Dilantin since I was 13 and will stick with it, there is no way my doctor will get me to try anything else new after this experience. That stuff is not for me."

• Car...
• Taken for 1 to 2 years
• April 19, 2018

"I have spent about 1 yr on this medication. No medication has ever worked for me before, so this was a first. I have juvenile myoclonic epilepsy (JME). Anyway, my biggest issues are: vertigo, nausea after every meal and nap, upset stomach, heartburn, drunk talking, unable to form words, unable to concentrate... sleep a lot. I first also gained 30 lbs but now I’m heading in the other direction because I can barely tolerate food with my stomach. My doctor won’t listen to me and says that there’s no more selection. I hate this medication! I want my life back!"

• CTa...
• Taken for 1 to 6 months
• May 8, 2018

"This was by far the worst drug that I've taken in my entire life. I thought Keppra was bad because of the mood swings, but this drug was terrible for me. It made me a salty, unhappy person, and that's unhealthy for you and others as well."

• Mam...
• Taken for less than 1 month
• March 16, 2016

"My daughter has had refractory epilepsy for 20 years. She tried this drug in addition to the Vimpat and Topamax she is already taking. Huge mistake! Week 2, she became catatonic, delusional, and terrified. Her dad, brother, and I helped her through it. Called her neurologist and stopped the drug immediately. We are on day one without the Fycompa, our morning was consumed with a psychotic episode, but after an hour and a half, she came around. Lucky for her, she doesn't remember much, if anything, of these events. I highly recommend you do your research before considering this drug. In my opinion, it shouldn't be on the market."

• Cai...
• Taken for 1 to 6 months
• June 23, 2018

"My husband has been taking Gabapentin and Vimpat for a long time, yet still having seizures regularly. His doctor added Fycompa a little over a month ago for his temporal lobe seizures. Although Fycompa is definitely helping with his seizures, his personality and mental state have changed so much. He's very irritable and angry about everything and everyone. He's considered ending his life because he hates the person he's become. Yet, he didn't want to stop taking it because his seizures had diminished dramatically. Our daughter begged him tonight to stop taking it because she is so worried about him, as am I. That's what finally got his attention. He has decided to stop the Fycompa. We're hoping things get better very soon."

• Tak...
• Taken for less than 1 month
• April 14, 2017

"In short term, it made me crazy! At first, it controlled my seizures, which had been under control, but I had some breakthrough seizures. I had a complete personality change. Didn't trust anyone. Pretty much 90% of the side effects that were on the warnings. After I read the pharmaceutical information, I wondered how the FDA approved this drug. And when I was having to be weaned off the drug, it was hell. Hallucinations, shakes, sweating. I assume what a drug addict would go through. I can't believe I am the only person who has experienced this. After this, I of course was given another medication. Ever since I was given this medication, I have had memory loss. My seizures have increased. Were over 6 years under control."

• Bee...
• Taken for 1 to 2 years
• May 22, 2018

"Female, 27 yo. Fycompa is the only medication that controls my epilepsy. However, I’ve had the most terrible stomach problems from Fycompa 8 mg once a day. I can’t go a day without Tums, omeprazole, and famotidine. Doctors went ahead and gave me ondansetron as well. I’m pretty sure this medication has screwed up my stomach. Be forewarned that although it works, it’s terrible on your stomach. Pros: controls epilepsy. Cons: moody, sour stomach, throwing up, dizzy, nauseous, sweaty, weight gain, heartburn, lack of coordination (I walk like I’m drunk sometimes), can’t stop this med randomly as it causes worse seizures afterward, waking up at 5-6 am from nausea."

• Anonymous
• Taken for 1 to 6 months
• September 27, 2018

"Have been on Fycompa for over two months. Has not stopped the seizures at all, even with increased dosage, and I have a constant horrible headache! I have a lot of trouble walking after taking it, so take it at night. Will be asking my neurologist to wean me off this one!"

• Hea...
• March 24, 2016

"Starting any new seizure med to me is just straight-up scary. I think they are running out of drugs to try. So, I have to admit I was a bit worried when I heard the side effects. They have me listed as allergic to Depakote, Vimpat, and Keppra, but honestly, it was how nasty the side effects were. My personality hasn't changed at all on this drug. However, I never was an 'active' sleeper, which is what I turned into for a while. It seems to be slowly going away, but it was very weird waking up because I was dreaming I was swimming and hit the wall with my foot. As many people with epilepsy know, not a horrible side effect. I was having petite mals daily and grand mals probably weekly. Since I started Fycompa, I have had two petite mal seizures."

• Fyc...
• Taken for 1 to 6 months
• January 20, 2016

"I have JME (juvenile myoclonic epilepsy). My neurologist switched me from Lamictal to Fycompa. My husband and I were told Fycompa was best for my JME. Within 2 weeks, my personality changed. I got all the side effects. I have never been in trouble but ended up doing 75 hours in jail because of it. Luckily, I got a doctor who took me off it ASAP and on Depakote. I had used Depakote about 20 years ago. My husband still loves me, and things are getting back on track for us. Like the previous reviewer stated, their relationship is shaky due to the drug. I hate Fycompa."

• Dha...
• June 2, 2016

"I have been on this medication since the study for it started. Medicaid covers it totally because I am on disability. I was taking three 4 mg pills. I now take 12 mg pills. But in my experience, it turns me into a zombie, so I take it only after I am in bed. 1-2 hours after I take my other meds or I get goofy as hell, and my partner says I slur like a very drunk person. But say I am asleep at midnight. If I wake up before 11:00 AM, I will be groggy for about 2 hours unless I have breakfast."

• ELW...
• March 20, 2020

"Fycompa was the magic pill, as I called it. When I first found out I had epilepsy, I tried 5 different dosages and mixes of medication. My doctor said this was a newer pill. I have 8 mg of Fycompa and 600 mg of Lamictal, and ever since then, I haven’t had a seizure in 2 years."

• Con...
• October 21, 2020

"Fycompa worked decently on the seizures, however, it destroyed my memory. I had no idea I was forgetting things, it was people around me who noticed, and it was bad. Memory problems ceased when I stopped taking the Fycompa."

• AB2...
• August 28, 2017

"I have generalized epilepsy, and it's very hard to control. Fycompa was working like a magical drug for the first 2 months, then all the side effects hit me like a rock. The first was anger. I would get mad and irritated very easily, which wasn't like me. Personality change is a big one-being someone you're not. All the bad side effects I got, but seizure-free now for a year."

• Eme...
• Taken for 2 to 5 years
• November 1, 2023

"I have had an overwhelmingly positive experience with Fycompa. It very effectively controls my seizures. The only negative side effects I experienced were when I initially began the medication or titrated up the dosage. They were minimal compared to other anti-epileptic drugs. I encourage anyone with temporal lobe epilepsy to ask the doctor about this great medication."

• Jud...
• Taken for less than 1 month
• July 5, 2018

"Taking Vimpat and BreviACT, they put me on 4 mg. Been on about 4 weeks now. Three days ago, got up to go to the bathroom. I fell on my face, whole left side swollen, my eye swollen shut. After taking it within a half an hour, I can't talk, I can't walk. My family says I sound like I'm drunk, can't put any words together, sleep late. Since I have fallen down, also still seizures, 4 one day and 4 the next, so will not take this medication anymore. I am getting ready for brain surgery. I chose to stop myself. Worst medication I have ever been on, and I'm terrified of it, terrified. I will get up, go to the bathroom, fall, and lights out. I did choose to stop this medication myself. As I said, it's been approximately 3 to 4 weeks. Today, I did have a bit of a breakdown, I cried a lot, but I think it's just because I'm so frustrated from falling, the meds, all the tests, and getting ready for surgery. I'm very happy I stopped it."

• Wen...
• Taken for 1 to 2 years
• November 24, 2023

"Started 2mg Fycompa Perampanel 1 year ago, then increased to 4mg, then 6mg, then 8mg, and now been on 10mg for about 6 months. 1 tablet late afternoon makes me drowsy, tired, and nearly always unsteady and feel drunk, but it works very well to control my epilepsy. Thanks to my epilepsy nurse and consultant, this is the only drug to work, and seizures happen less. I also take Clobazam and Tegretol and quite happy to continue on these doses."

• dan...
• March 29, 2017

"I did a 6-week trial of this, and it made me psychotic for about 2 hours once I had gotten my blood level up. High as a kite, aggressive, and talking backwards. So I went off it and had terrible withdrawal in the form of depression and suicidal thoughts. I have temporal lobe epilepsy, and I think I am on the more psychotic end of the spectrum, so I was more vulnerable to those side effects. I was a second-degree black belt at the time. I judge all drugs by my ability to do a decent back kick without falling over. It failed the back kick test as well."

• SMB...
• Taken for 10 years or more
• March 20, 2020

"I love Fycompa. 6 mg qpm completely eradicated every type of seizure I have. I was able to get my driver's license back and not be afraid to be alone with my daughter when I wasn't 'feeling well.' Unfortunately, Fycompa is so expensive that my insurance doesn't want to pay for it anymore and is putting me through wringers trying to get it approved. A generic might be nice, but for now I have to deal with it."

• Mar...
• Taken for 1 to 2 years
• July 22, 2020

"So I’ve been on fycompa 4mg for maybe 2 years, and it’s done a wonderful job against my seizures. Until the past 2 months I’ve experienced 4 instances of deja vu auras, and a different type of aura I’ve never experienced. More of a hallucinating, double vision, lifting of the head feeling? Sort of like a roller coaster and you feel your eyebrows go up. Anyway, my girlfriend said I’ve experienced that before, after a grand mal seizure. So my doctor upped the fycompa to 6mg. First morning after taking it the night before, I felt intensely high. Very similar to the morphine I was given as a minor after surgery! Very sleepy feeling, and tingly body sensations that made me want to go limp. While my head just felt lifted in a sense. Slight dizziness and couldn’t focus on tasks. I know it’s getting used to the meds, but I don’t know if I’m comfortable taking a med that can make me feel high like that. Please let me know if you have experienced this before!"

• NYY...
• Taken for 1 to 2 years
• April 7, 2017

"I take Fycompa together with Vimpat, lamotrigine, and levetiracetam. These drugs have made me seizure-free. I had video EEG monitoring, and this changed my life. My neurologist determined the lobe of my brain that was involved and placed me on the correct meds. If any of you cannot become seizure-free, please ask your doctor to consider video EEG monitoring. Without this, I would still have seizures."

• Kim...
• December 2, 2022

"All I can say is thank you. My son has struggled with seizures most all of his life span that we can remember. The combination of Depakote and Fycoma has been incredible in treating absence seizures and grand mal! He has been seizure free since he started the Fycoma! Thank you, I feel like I have my son back for only 10 dollars a fill!"

• Wor...
• July 13, 2018

"My 20-year-old just got prescribed this to gradually increase over 4 weeks from 2 mg to 8 mg. She is currently taking 500 mg of Zonisamide. Her old neurologist wanted to do this a year ago, and she decided not to after reading so many reviews about horrible side effects. I am really frightened about her going on Fycompa, but her seizures have really increased, so I feel like we should."