User Reviews for Fycompa to treat Epilepsy
Fycompa has an average rating of 5.7 out of 10 from a total of 39 reviews for the treatment of Epilepsy. 51% of reviewers reported a positive experience, while 41% reported a negative experience.
Reviews for Fycompa
"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 behaviour 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."
"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."
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"This was by far the worst drug that I've taken in my entire life. I thought Keppra was bad bc 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."
"I have spent about 1yr 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, heart burn, drunk talking, unable to form words, unable to concentrate.... sleep a lot. I first also gained 30lbs but now I’m heading 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!"
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"My daughter has had refractory epilepsy for 20yrs. 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 hr 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."
"In short term it made me crazy ! At first it controlled my seizures which had been under controlled but I had some break through 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 for over 6 years were under control."
"My husband has been taking this 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 has 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."
"Female 27yo. Fycompa is the only medication that controls my epilepsy. However I’ve had the most terrible stomach problems from fycompa 8mg 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 5-6am from nausea."
"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!"
"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."
"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 awhile. 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."
"I have JME ( juvenile myclonic 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 cause 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."
"I have been on this medication since the study for it started. Medicaid covers it totally because I am on Disabilty. I was taking three 4mg pills. I now take 12mg pills. But in my experience it turns me into a zombie so 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."
"I have generalized epilepsy and very hard to control ... fycompa was working like the 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 easy which wasn't like me and personality change is a big one ... being someone your not.. all the bad side effects I got . but seizure free now for a year.."
"Taking vimpat and breviact they put me on 4 mg been on about 4 wks 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 falling down also still seizures 4 one day and 4 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 3/4 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"
"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!"
"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 8mg of Fycoma and 600mg of Lamictal and ever since then I haven’t had a seizure in 2 years."
"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."
"My 20 yr old just got prescribed this to gradually increase over 4 weeks from 2mg to 8mg. She is currently taking 500mg of Zonisamide. Her old neurologist wanted to do this a year ago and she decided not too 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 feel like we should."
"I have been on every medication and Fycompa was the worst. I was prescribed 2mg in morning and evening. I would get so dizzy that I could not stand and walk. I do not think my vimpat and Fycompa mixed well. On my own I started cutting both so that I did not take them together. The dizziness was less, I could at least function but still a little dizzy. Now my new doctor is having me take fycompa every other day for 10 days and then take me off the Fycomp. He said that medicine last for 300 hours yes 300."
"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."
"I love Fycompa. 6mg qpm completely eradicated every type of seizure I have. I was able to get my drivers 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."
"Good points: reduced my seizures and made me feel overall a lot more confident. If I ever had a seizure, I tended to know when it might occur and my 'trigger' points. Bad points: It made me in some ways over confident, to the point of feeling careless. Not so much suicidal, but thoughtless and self-indulgent. I would get angry easily. I work in a professional place and therefore had to taper down from it, though am still on a low dose."
"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!"
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.
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"My daughter is 30 years old and had her first seizure at 7 years old due to 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. Epileptomoligist put her on Fycompa 6 weeks now. And yep the effects started. Zombie acting, can't focus or remember, clumsy. The stomach issues and 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 does. Prayers for everyone."