Embarrassing side effects with Fycompa [Perampanel]

[Adlon57]

I have been on Fycompa [Perampanel] for juvenile myoclonic epilepsy since Christmas 2016, my testosterone levels are at an all time high, it affects my sleeping in that it makes me very hyper active my concentration and sleeping patterns are practically non-existent, does anybody else have a similar reaction, it is not noted in pill side effects? I am also taking Lamictal but I have been taking those for many years, so I doubt if they are the cause!

[AmyBadd]

That sounds worrying. I don't know about you, but I have JME and the main trigger for my seizures is lack of sleep...

Hope you get it sorted soon xx

[Adlon57 in reply to AmyBadd]

Thanks AmyBadd, my main trigger is stress, my body has almost got used to lack of sleep now, I have had 2 seizures since February but the cause was my body attempting to get used to the new medication, Fycompa, even after 9 months still getting used to it, but ALL pills have some sort of side effects!

Hope will get it sorted?

[monaco1]

When I was on Perampanel - 18 months - I had the lightest sleep that I had ever had in my life! When I did sleep, I had the lightest sleep ever - I could hear myself thinking in my sleep. I had a train of thought as soon as I woke up and I knew that was what was going on in my mind just before! Yes - my sleep was literally not there! Strange that you don't have some sort of a mix! When I was on Lamictal for 16 years, I had the hardest sleep ever during my whole life! That was wonderful! Now on Eslicarbazepine and Briviact, I am defenitely sleeping harder.

[Scottdanielcarlin in reply to monaco1]

I had no sleep on perpampanel and was on them for ages and they made me put on 5 stone. Now on a huge does of keppra and clobazam and I sleep like a baby thank God, however my teeth are falling apart and that's down to the medication. I hope I can get implants.

[monaco1 in reply to Scottdanielcarlin]

Yes - I put on five kilos in three months! Became a lot more chubby! The trouble is that I can't seem to lose it! Trying!

[Adlon57 in reply to monaco1]

The Lamictal are infamous for bad teeth, on them for 6 years [partenered with others] my teeth ask my dentist? weight gain leading to high blood pressure medication, Fycompa with lamictal not to be recommended, now on vimpat and briviact six months now acute pancreatis, what next?

[Adlon57]

Maybe get used to it properly although nine months should be long enough, at least it stops my seizures, much better than 'shaky' Epilim. It makes me a light sleeper, a bit weird sleep patterns! Like you said no problem with Lamictal. I'm not to sure about Eslicarbazepine and Briviact, maybe ask my epilepsy specialist about them? Thanks for your advice!

[monaco1]

Just to warn - Briviact is still a red light drug - prescription available from specialist, but not from the GP!

[G1na]

I have been on Fycompa for about 2 months. I have had many issues with its side effects. The worst one I am experiencing is light sleep / little sleep. My quality of life has decreased since I started taking it. I think that the lack of sleep may be the reason for other possible side effects: irritability, headache, anger. I have also been on Lamictal for years and I do not think that's the cause for my poor quality of sleep. My triggers are stress and lack of sleep. I was on 8mgm of Fycompa but I'm weaning off of it, it's not for me.

[Adlon57 in reply to G1na]

I had a major seizure in February, fractured four ribs and broke another, while getting used to Fycompa, but I was told that Fycompa would make sleepy? Ok it makes me feel very sleepy, I was on pain killers for six months, too many, a touch of 'cold turkey' happened when I tried to stop. I assumed that like yourself, irritability, headache and anger, it was the pain killers, but no, like you said light sleep/little sleep is now par for the course, usually about four hours a night, I am retired, so no pressure, I sometimes find that I try to sleep for the whole day, usually unsuccessfully. My body clock is practically non-existent, I have early dementia, which these things are not helping! I am on 250g Lamictal and four mgm of Fycompa. Ok it does stop the seizures, but this has happened before with Epilim, I had serious Parkinson's disease side effects, shaking, and four seizures in three years, but sometimes the side effects can be worse long term for your general health. Ironic today I had a DAT scan my second one in over a year, to test my steadiness of hands since stopping Epilim [I was seriously thinking of drawing classes, but I'm too damn tired!!] My triggers were stress, but now the body has got used to lack of sleep and it does not bring on a seizure, I reckon I have had about a dozen eight hour sleep's in ten months. I need a change of medication, my trouble having epilepsy for over 40 years, I have tried most of them already!

Thanks G1na nice to hear someone else can agree on this subject!!

[Adlon57 in reply to Adlon57]

Just heard my medication is to be altered, Fycompa to 2mg and Lamictal increased, how much? My lack of medication alternatives from over the years, hopefully could now be more successful. G1na good luck with your medication cocktail!

[G1na in reply to Adlon57]

I'm sorry to hear about your struggles with your epilepsy as well as the medication you've been on. I know it's frustrating and sometimes it feels like a hopeless situation. Fycompa makes me feel very drowsy but it doesn't let me fall asleep. I don't think I'm in my Rem sleep. For me I have felt most of the "rare side effects." I believe this is a newer medication. So before taking it I wasn't able to find much research. Since I have also had many complications from medications I always try and do my own research before agreeing to anything my doctors suggest. Luckily I suffer more from absent seizures although I have had convulsions in my sleep before and one drop seizure. Before Fycompa I was on Lamictal 750mg 2x a day, felbatol 800mg 2x a day and 10mg of onfi once a day. Now they plan on keeping Lamictal the same but I will be on 1200mg of felbatol 2x a day. I was on 8mg of Fycompa and it has been a nightmare for me. Coming off from it I have experienced withdrawal like symptoms: teeth grinding, night sweats, nausea, vomit, excessive hunger, paranoia, cold/hot, and muscle soarness. I also have VNS therapy which I have learned to appreciate. Like everything else VNS has its down sides but in most cases it has helped me come out of a seizure. I am working on learning yoga and meditation now. I have always followed my doctors orders and now I feel that I need to make life style changes to better help myself. I hope everything goes well for you also!! Sleep is very important.

[Adlon57]

I have just been loosened from the clasps of Fycompa, irritable, extreme anger, excessive hunger even suicidal thoughts, that was the last straw, they decided to get me off it pretty pronto! My lack of sleep was slowing down my metabolism, on average about four hours of very light 'sleep' for ten months, seemingly quickening dementia, have had very strange looks from family and friends, judgement very slow, almost like I had aged about thirty years! I am being weaned off now, to what? I do not know, still on the seemingly dependable Lamictal, but with what? Some of the weird side effects of epilepsy medication, I have had, I could practically write a book about them? Over forty years on the 'circuit' what medication is next in the ring? Ironic you mention about withdrawal symptoms, doing 'cold turkey' coming off pain killers then finding the Fycompa was the real villain as various side effects I thought were associated with the pk's, as I have been off them for about 6 weeks, some 'bad' ones are certainly still there, not for long hopefully? Interesting you mention about the side effects when coming off Fycompa, maybe they will be less, as being only on 4mg and for ten months, hopefully less 'cold turkey'? Will have long talk with GP on Monday!

Thanks again G1na!!

ps what is felbatol like, I have Juvenile Myoclonic Epilepsy so probably not on the same medication range?

[G1na in reply to Adlon57]

It sounds like you have been very patient with Fycompa. I am currently on 2mg until I'm completely off. I can feel the difference. I'm 27 and got diagnosed at 14. I've learned to live with seizures and for the most part I've been okay with the life i was given. I try to always see the positive in it and try to acknowledge what I have gained from it. These last two months have not been like that at all. My thinking was negative and I lost all hope. I saw myself as extra baggage. Became obsessive about my future and felt that I could never be "normal." Now I'm coming back to myself again. I'm still struggling with sleep but Fycompa has a half life of 105hrs so it makes sense. I have learned to be very upfront with my doctors, ask all questions possible, do research before agreeing. It is easy to give in because they are the ones who should know best but we each know our own minds and bodies better than anyone else. We should be able to make our own decisions and not feel/be pressured into important decisions. I have also been on many medications and they are running out of options for me. If my doctor is correct she mentioned only about 20 medications being used for epilepsy. Fycompa seems to me as one of the last options for persons with severe epilepsy. I do not consider my epilepsy severe because I have not had many convulsions. I'm a complicated case in their eyes because they believe I have several kinds of seizures based on what I experience. Their goal is 0 seizures and I disagree if my quality of life goes down. I've had CAT scans, PET scans, MRI's EEG's, WADA test and neuropsychological test but they cannot pin point where they are coming from. They believe I have both grand mal and petit mal but that's all they know. I experience most of my seizures soon after waking up. I am able to speak, call into work/school, email, text, let others know I'm having a seizure but most times I have no memory of it when I come back into all my senses. My aura are: flashing lights, blurry vision, funny smell. Felbatol is the brand name for felbamat. I take felbamate. I haven't had problems with this medication. In the beginning I was afraid of taking it because of what I had read but everyone reacts different. The biggest warning from my doctors is that it causes liver problems (at a higher percentage than other medications).

[Adlon57]

G1na thanks for your advice, now off the terrible stuff, Fycompa, am suffering the same withdrawal symptoms as yourself, there is fog outside and I am sweating buckets! I talked to my epilepsy nurse about effects coming off, in a very quiet voice "it might take you one or two years to fully get rid of the side effects!" I had just done six weeks of 'cold turkey' with pain killers while taking the stuff!! I had epilepsy 47 years and this is EASILY the worst side effects I have EVER had with epilepsy medication, even epilim with it's Parkinson's disease side effects! Not a happy bunny at the moment, I hope you are in a better state of mine than myself? ps. even the epilepsy nurse had quoted quite wrongly that I had a different type of epilepsy? GRR!!

[G1na in reply to Adlon57]

Adlon57 I'm sorry to hear about your withdrawals but I'm happy to hear that you are in the process of figuring it out. I agree, the side effects from Fycompa are the worst ones I've experienced from any seizure medication. I am doing much better mentally which is what is most important to me. I need to work toward gaining back the weight I lost and getting more sleep. Last night was my first night sleeping through the night with no interruption and today was my first day being able to take a 2hr nap. So I am extremely happy. My experience with my doctors has been one where I cannot trust them. Luckily, the nurse has been there since I was a teenager and she always looks out for my best interest. She also told me that if my doctors do not know where my epilepsy is stemming from and they continue to push for brain surgery then that's "experimenting." I hope you continue to heal and get to a better place than you are right now. I also appreciate listening to your story and feeling understood. Best of luck!

[Tenerife1234]

I have just come back from my neorologist and he wants me to start on fycompa today.after reading all your comments I am petrified!!

I am already on keppra vimpat and zonegran.

I don't like the side effects I am reading about and I have a full time job too.

Omg!!

[Adlon57 in reply to Tenerife1234]

Everybody to their own thing, I have tried numerous epilepsy medications, as yet their is no perfect pill for everybody with any forms of epilepsy. I have found there are ALWAYS side effects to every medication and EVERYBODY is different so a different pill or medication with differing strengths for each patient, now available a wider selection of pills for a similar condition. [sounds like a TV ad?] Just because the medication pamphlet gives lists of various POSSIBLE side effects, don't panic, don't become an instant hypochondriac, take your time report to your epilepsy specialist the side effects you might be worried about, they are there to help people like you in your own particular plight! The trouble is, the body, I found, eventually builds up some sort of resistance to them, the side effects [in my particular case] can be actually worse than my epilepsy, or just not working for your particular type of epilepsy, so of course a change was needed, but you might be lucky and find a medication that restricts the epilepsy and the side effects are liveable with? Good Luck!!

ps amazing what a good few night's sleep can do, the epilepsy nurse was being informed by a locum, who was not fully aware of my own particular complicated case, my specialist is on maternity leave and I'm really calmed out now with my new state of medication! Cool!

[Antelopes in reply to Tenerife1234]

I am coming off it at the moment. I also work fill time. Since taking it my thinking has been slow and my balance is like that of a drunk elderly. Without the walking frame.

[Tenerife1234]

Thanks for the advice.

[Jillpie510 in reply to Tenerife1234]

So did you try it??? My doctor wants me to try it and I found this board

[Adlon57 in reply to Jillpie510]

I am not to sure if this reply was answered by myself, laptop on blink? Fycompa was the worst JME medication I have used in 48 years, too many BAD side effects, [suicidal, lack of sleep, did not stop all my seizures, heart palutations, etc] been off it for nearly a year but sleep patterns are still affected. Everyone is different, but if you are designated to use it, make sure it is POSITIVELY your last alternative. I would give it a one star only because I could give it any lower! My new mixture of Vimpat and Briviact is possibly the best I have ever been on but I have only been on this combination, for four months, no seizures at all, but with epilepsy it is ALWAYS best to accumulate slowly before any celebrations! all the best

[Antelopes]

I have found more of a sedative effect from taking fyocompa. I literally can't remaining awake for the first 4 hours of the dose.

[Adlon57 in reply to Antelopes]

I found from christmas 2016 to october 2017 I spent half literally in bed, looking up at the ceiling, counting the planes as they flew overhead, trying to sleep on "my gorgeous big black leather chair", most nights no sleep at all. I am retired living on my own, housework was non-existant. I have schwannamatosis and the pain in my joints were heightened, not a good combination? I was in a zombie like state the whole time. Sleeping pills did not help at all, my system was eventually able to ignore altogether the prescribed effects of them. The effects of the Fycompa can take two or three years to wear off, usually affecting sleep patterns, certainly still affecting me now august 2018. Any sleep during that period was always extremely light.

[GillSans in reply to Antelopes]

I only take them at night probably for that reason.

[cv83 in reply to Antelopes]

Hi. Read your reply about Fycompa being sedating. Does it feel like valium?

[Adlon57 in reply to cv83]

Felt very fatigued the whole time, but it did not register as sleep, in that time Dec. 2016 -Nov. 2017 I reckon I had about 2 1/2 weeks sleep, taken years to get rid of effects of it!

[Adlon57 in reply to cv83]

Lowered my whole quality of life, tried suicide twice whilst taking the things, unforeseen life changing mental effects would NEVER recommend those things for ANYBODY!

[Adlon57]

GillSans, I can truly say in all my 62 years, they have been my WORSE medication, I have just come out of hospital, my pancreas packed up, indirectly due to side effects of .. Good Luck??

[Emily0518]

I found this board and it's making me terrified. My doctor wants me to try fycompa along with my current medication Trileptal which is already giving me enough bad side effects. Lack of sleep scares me because I have a 4 month old and 16 month old. I am thinking of telling him I want to go back on keppra and get off my current med in general. I'm at the highest dose possible for it

[Adlon57 in reply to Emily0518]

Sorry to sound so dramatic, everyone to their own medication! These are just my own experiences, they might be fine for you, ALWAYS ask your doctor first if you want to change your options, he/she are medically qualified, they are experts. My own experiences lead to putting fycompa firmly at the bottom of my options. Epilepsy medication is NEVER cut and dried, everybody to their own thing! Good Luck!

[Emily0518 in reply to Adlon57]

That's ok! I know it's different for everyone but I've read a lot about lack of sleep on it. I'm going to ask my Dr if he has any other suggestions besides that med to try

[Amandagioia in reply to Emily0518]

My daughter takes it and it’s the only drug that has ever helped with her photosensitivy. She used to flutter constantly and it’s reduced her flusters by 90%. It also puts her to sleep. She can only take it at night for that reason. To us, it’s been a miracle drug. Just wanted to share. Good luck

[Adlon57 in reply to Amandagioia]

Like I have said "Everybody to their own thing!" Epilepsy is not by any way an open and shut case, what it is to one person it is a miracle to others, I was just giving my own reactions to it, I have JME your daughter has a completely different type of epilepsy. I have just found that Briviact my current medication gives me kidney stones, 'what you gain on the swings you lose on the roundabouts?' but I have not had a seizure since I began them in April last year! all the best!

[Alicorn700]

I have tried about 20 medications. I wanted to try the Vegas Nerve Stimulator but the doc wants to try Fycompa first. I seem to have a lot of bad side effects. Last year Topamax landed me in the nut house a month. It caused lack of sleep, I do not do well with no sleep. Now I am worried, I have heard of some people having side effects within 5 days. I am also reading it can screw up sleep for a couple years. I think I prefer chewing my tongue off.

[Adlon57 in reply to Alicorn700]

I am currently on Vimpat and Briviact, but still lack of sleep due to long term effects of Fycompa [off them since October 2017], {yes told side effects of Fycompa can take two or three years to completely wear off} any sleep now I get is genuine, I am retired, so spend long times in bed trying to get to sleep, but when I get to sleep it is 'good sleep'. Yes Topamax [or the 40 minute pill as it is nicknamed; a question, then 40 minutes later I could give some sort of answer!] I have not heard of the "Vegas Nerve Stimulator" have to do some research on that? My worst side effect with the Briviact is it stimulates my brain too much, I take it at night, I was prescribed 50 mg at night then 50 mg in the morning, but setting it up I suggested just 50 mg just at night, none in the morning, I have had JME for 48 years, over 400 seizures, so my suggestion was approved, I wonder now should I take it just in the morning? Have had no seizures since I started them 7 months ago so maybe pushing my luck? Having epilepsy so long having a seizure can be almost second in preference to the side effects of the particular epilepsy medication [just my own opinion!]. I hope the Briviact does not wear off, that was another one to watch out for, the brain/body getting use to the effects of a medication, and the seizures returning? I have been through the mill, and tried most of the epilepsy 'selection', so all the best, Happy Christmas! ps. the Briviact seems to make me more susceptable to other minor ailments, in the last 7 months?

[Tenor49]

All of these comments on Fycoma have me really worried. I have just been prescribed Rycoma with the intention of getting me off Zonisamide (I am on 250 mg twice a day, and also on Lamotrigine 300 mg twice a day and have been for years). I get seizures in. Y sleep every three to six weeks, but haven’t had a waking seisure for several years. But all of the common or very common side effects mentioned in the PIL or mentioned here, will only make me worse to,live with or affect my quality of,life more than nighttime seizures. Is it worth taking the risk? Is it better to live with the condition or take the risk in the hope,of getting rid of it?

[Adlon57 in reply to Tenor49]

I was on Lamictal [Lamotrigine] for several years with the likes of Epilim and the Fycompa, but I found it was the Lamictal that caused me to have violent 'shock' seizures at night, especially when I was in the process of changing from one medication to another, having Lamictal just on its own, this I think was never really followed up, my neurologist was worried about them, but then he retired in 2013, but these nighttime seizures raised their ugly heads again going off the Fycompa and Lamictal, I am glad to be off them altogether, just on Vimpat and Briviact now! These nighttime seizures happened just before I was fully subconscious in the process of sleep, sometimes 'blown' out of my bed like a violent electric shock, these have still never been fully explained to myself? It looks like I have stirred a bees nest with the Fycompa but is that the sort of seizures you were experiencing with the Lamictal/Lamotrigine it could be them that are causing your troubles? Good Luck?

[Tenor49 in reply to Adlon57]

I don’t think it’s the Lamotrigine that is doing the seizures. I’ve been on it for nearly 20 years, and has been a “base” medication all that time. I had tried phenytoin and carmbamazepine before them and carbamazepine had been quite effective until the seizures restarted, but it had made me very “flat” and Lamotrigine hasn’t done that. We have tried keppra as a secondary medication but I reacted badly to it, and Zonisamide has helped, but doesn’t seem to have finished the job. We tried Breviact a couple of years ago and the depression hit me in spades - I just sat weeping in a chair - so my neurologist seesfycompa/Perampanel as the last option for my focal unaware epilepsy. The stories others have told about their experiences with Perampanel after you raised yours have been important for me. I hope to talk to the specialists about it tomorrow.

[KFing]

Hi everyone- I’m new to this conversation (obviously) but was reading what everyone has written thus far. I don’t have epilepsy myself but my husband does. He has taken Lamictal and it caused him to have horrible nightmares. He’s now taking Oxytellar and has recently been put on the Fycompa after having 3 grand mal seizures on Chrisrmas Eve. Does anyone know if maybe eventually the horrible side effects from Fycompa go away? Right now he’s experiencing extreme drowsiness and is very feverish and sweaty, slow to react and just feeling like a zombie. He’s on 6mg now.

[Tenor49 in reply to KFing]

Hallo, I have just come back on after a few days away. How is your husband doing now? Is he still on Fycompa? I chickened out of it after going through all the side-effects and realising (with my wife) that all its side-effects would have had the effect of worsening all the worst aspects of my personality. The stories that others here told about it strengthened my concerns. So we are living with my (fortunately for me, but not for her) currently nocturnal seizures. Sometimes I wonder if we don't have to be a bit assertive? Although I probably shouldn't say that - perhaps, more questioning might be a better way to put it.

[KFing in reply to Tenor49]

Hi there-

Actually the doctor took him completely off of the Fycompa. Since sleep deprivation is a seizure trigger of his, and the Fycompa was making him so tired, it wasn’t helping. They just upped his dosage of the Oxytellar. When I did some research on the Fycompa my findings weren’t good. I know all seizure meds have side effects but this one had the worse I’ve ever seen! He’s been on quite a few meds so if you have a good questions about some I’d be happy to help. He has an issue where his body begins to adapt to whatever meds he’s taking after a period of time and he has to switch to a new med. That’s the problem we’re having now which sucks because Oxytellar has been really great with minimal side effects if any.

[Adlon57]

Yes I was on Fycompa, and getting practically no sleep, zombie like, sweaty as well, I am writing a book and practically all my 'material' gained those 10 months proved to be worse than useful, a dark period in my life! I have been off those 'things' since October 2017, my sleep pattern is still very erratic, going to bed about 12, eventual sleep around 3-4 am, getting up around 12 noon, at least it is good sleep now? I am retired and living on my own. I am now on Briviact [and Vimpat] which makes me very hyper active, which does not help my sleep patterns either, but at least relations and friends can see me getting slowly back to some sort of normality [the book is almost finished?] Everybody to their own thing, epilepsy nowadays seems to be to reach the lowest amount of seizures with the least amount of acceptable side effects for the longest period of the patients life? Good Luck!!

[1MumblesJack]

I have been taking Tegretol (Carbamazepine) for many years, (now upto full dose 1200 daily) but over the last few years Keppra was added then withdrawn, then Phenytoin without any success so that that was withdrawn. Lastly Fycompa which has gradually had the dosage increased. Initially it had a massive improvement as it gave me the ability to get a full night's sleep! So for a few days I thought, "At long last I've got something that works!

Unfortunately, that didn't last long...less than a week! So, now having had it increased progressively to 8mg I'm now back to square one having seizures every day. Phenytoin (Dilantin) was the worst for me as, I couldn't sleep at all, had a dry mouth all day whilst having seizures every day.

Good luck with getting your meds sorted, Chris

[Adlon57 in reply to 1MumblesJack]

Good luck with getting your meds sorted, after 49 years been through the mill, but everybody with their own medication? I'm taking Briviact 50mg and Vimpat 400mg very hopeful not had a seizure since I started with them in April last year, but pancreatitis, dry mouth, hyper activity [meaning lack of sleep so wanting to change Briviact 50 mg to morning so I get a bit of sleep, seeing specialist next month, if works could be best since before stroke 11 years ago?] "At long last I've got something that works?" [I certainly deserve it?] Fycompa, watch out, have a bad habit of catching up with you slowly, and give long term side effects?

all the very best Shaun

[MariaDun]

Hi there

Sorry to hear about your sleep pattern. Lack of sleep is obviously not good for Epilepsy.

My husband is taking fycomfa. He doesn't sleep at night either... It isn't controlling his seizures either.

[Adlon57 in reply to MariaDun]

I stopped taking Fycompa three years ago, just about getting back to regular sleep patterns now, terrible stuff, worst epilepsy 'drug' I've EVER taken in 50 years! The vimpat on it's own meant I would have seizures any time of day, but with briviact, very good, 400mg Vimpat 75mg Briviact, one seizure since April 2018, even that was exceptional circumstances! [strange, every time I mention Fycompa, I get cold chill up my spine, did it again, spooky?]