Generic Name: Cenobamate for Seizures (cenobamate)
Xcopri (cenobamate) "As a caregiver, I was anxious about this medication, which is pretty new. It is not a bad medication, but for people who already have cognitive and physical disabilities, it is terrible. The person who has been taking this medication for almost two years now has had a drastic reduction in cognitive function. Simple things that they could do suddenly are not an easy task. They cannot pick something up and hand it over, their legs sometimes don't respond, and they just stand there, not sitting, not moving. They show no interest in things they used to love. Everything requires a lot of focus and energy. They fall asleep fast, but have no REM sleep anymore, which is bad for the memory. They cannot eat by themselves most of the time. If your loved one is a cognitively disabled person, stay away from Xcopri. It is frustrating and scary. The seizures reduced somehow, but I question the quality of life this person was left with."
Xcopri (cenobamate) "I've been on every seizure med made for the last 24 years trying to figure out which one or combination of them would help. Finally, after being on Xcopri for the last year and a half, I am 6 months seizure-free. I drove for the first time in 24 years. Xcopri, along with Briviact and Clonazapam during my menstruation, has helped me become seizure-free and able to drive. I don't have any side effects from it. It's been my miracle drug. I take 1,200 mg at night. I'm a medical marijuana patient, but it never helped my seizures. It has helped my migraines and headaches. Thank you for making this drug!"
Xcopri (cenobamate) "I have been taking Xcopri for seizures for three months now. At 200mg a day, taken once a day, I had one breakthrough seizure. This occurred about two months ago. My dose was increased to 250mg, and now I have been seizure-free for over a month. Side effects are pretty minor, so far. Some sleepiness and tiredness and an occasional momentary loss of balance but nothing else. These side effects are diminishing with time. Compared to my experiences with Lamotrigine, which was pretty useless, and with Keppra, which was horrible, Xcopri has been sweetness and light! I'm 80 years old and I'm building a barn extension single-handedly. So no, Xcopri isn't slowing me down noticeably. I'll almost certainly be on it for the rest of my life, but I have epilepsy, and I'm leading a pretty normal, or better than normal, life."
Xcopri (cenobamate) "I'm seizure free for the first time in my life, however I have the worst brain fog and hallucinations I've had in my life on this medication. I also lost weight. This medication has been a miracle cure for me but also a curse, I plan on lowering the dose."
Xcopri (cenobamate) "I love it! It is an awesome seizure medication. It is truly the best that I have ever tried. I have tried a lot of epilepsy medications. This one is an awesome medication. The only thing is they need to make a generic, cause the brand name is expensive, and most people could not afford it. I could not afford it if it wasn't for Medicaid!!! I take the 200mg and the 50mg of this medication!!! PLEASE MAKE A GENERIC!!!!"
Xcopri (cenobamate) "Xcopri has been the only seizure med that has helped me become seizure-free for the first time in 25 years. My doctor added it with Briviact, and I take Klonopin during my menstrual cycle (7 days). I do get headaches a lot and feel lightheaded often, but other than that, I feel like it's a good medication. I do feel like my reaction time is slow. Not sure if it's the medication or all combined, who knows, but for the most part, it's helped me very much!"
Xcopri (cenobamate) "I've been on every medication for seizures, have had my right temporal lobe removed, have a VNS, was doing the medical marijuana and not one thing has helped my seizures. As soon as I started taking this drug Xcopri, my seizures have stopped. Was having them every day and haven't had one in almost 3 months now, I just can't even believe it!!! The only downfall is the side effects. I first would just want to sleep all day long, had no energy at all, I couldn't think straight or remember things. I would talk and move very slowly, run into things like I was drunk! The sleeping has gotten better, I can stay awake all day now. I still have problems with memory and can't make decisions to save my life!!! I'm still very slow at things and can't walk straight. I'm at 100 mg 1x a day. I just finished taking my amitriptyline for sleep, and now I'm only taking Onfi in the morning. Still on Briviact, Lyrica, Lexapro, Buspar...but so far, so good!!!!"
Xcopri (cenobamate) "My daughter failed 10 medicines and a VNS, and this is finally the thing that worked for her. She has not had a seizure in over a year. It does have side effects (fatigue, headache), but better than the others she has been on. Most importantly, this one has had no mental health side effects such as depression, anxiety, or anger."
Xcopri (cenobamate) "100mg and under were wonderful for me! Yes, I was still tired, but seizure free! When I started the 150mg titration pack, all I wanted to do is sleep. My neurologist recommended for me to stay with the 100mg, as it gave me quality of life. So far, so good! **Remember everyone’s body is different."
Xcopri (cenobamate) "It probably works....has so far...but is WAY TOO EXPENSIVE for the average person or someone on a fixed income....can't afford anymore. Even with insurance they want over $800.00 /month. Outrageous!!!"
Xcopri (cenobamate) "Once I began taking the 150mg, it was all I could do to stay awake. Now on the 100mg, I am still tired and fatigued, but I can stay awake all day. After I take it, most people think I'm drunk because I am so tired. The minute I lay down, I fall asleep. Although I dislike the harsh side effects, this medication has helped greatly. Thankfully, I have not had a seizure in 4 months!"
Xcopri (cenobamate) "The first week of Xcopri (12 mg) I began feeling weak, tired and practically dragging. The second week I felt a little better. Now that they increased my dose to 50mg the first week I felt ok. Now that I am in the second week I feel so tired, weak, and dragging, my legs and muscle are sore and I am so sleepy. I plan on calling the doctor to see what he recommends."
Xcopri (cenobamate) "Not as many full-onset seizures. It does make me extremely tired. The blurry vision is very true. I thought I was having severe issues until I read it on the prescription info page you know the one folded a million times."
Xcopri (cenobamate) "This has been the best seizure medication for me so far. I take it with Briviact daily and Acetazolamide during my cycle. I have had no issues since starting the medication and seizures have gone down incredibly. I would recommend this medication to anyone who could benefit from it. So far, I haven't developed any medication resistance issues either."
Xcopri (cenobamate) "So far, so good, but now that my 'trial starter packs' are done and it'll cost me $1000 a month, I can't seem to find discounts for any less, and I don't qualify for financial assistance. I hope the stress isn't, God forbid, a trigger... ^_^ Starter packs were easy to use. I've had no side effects except extra fatigue in the morning, which is not unusual. And I'm being weaned off my other meds, so that should hopefully end soon!"
Xcopri (cenobamate) "I have been taking Lamictal for more than 20 years, which is working okay, but I always had petit mal seizures a couple of times a day. Recently, after my last EEG, my doctor decided to add Xcopri 100 mg once a day in addition to Lamictal 300 mg twice a day. I am feeling better, no more petit mal seizures. It is working for me."
Xcopri (cenobamate) "I was prescribed Xcopri after 10 years on a number of anti-seizure meds that didn't control an occasional major seizure with exercise. I woke up in a hospital ER hours later. I was uncertain about its effectiveness but over the last three years I have not had a seizure, aura, confusion, or dizziness. I take a single 200mg pill per day and I am not aware of having any side effects."
Xcopri (cenobamate) "Made my already bad memory worse, was extremely dizzy, and it started giving me horrible rage and anger issues. Talked with a doctor, lowered the dosage, took B6 to help with the other side effects. Got the dosage right and it worked wonders in stopping the seizure onset."
"This medication has drastically changed things. I’m more than a year seizure-free. I’ve had seizures for 36 years. Like many others, I take other medication, e.g., Keppra and others. I’ve reduced one of my medications and started slowly on cenobamate, where I now take 200 mg daily. Other factors might have contributed. I had lost quite a bit of weight, this was happening before I started to take cenobamate. I did find my diet changed. Foods that I liked, I would no longer eat, and I didn’t always want breakfast in the beginning of the change to cenobamate. Reducing my other meds, the seizures were intense, and I had more than one seizure at night. My seizures are all when I sleep. After a couple of months, when I was taking the regular dose, seizures stopped. Strange to say, I’ll put up with the strange eating habits and tiredness for no seizures."
"Along with two other medications, Xcopri has really helped with my drug-resistant focal bi-temporal epilepsy. It's the only medication that has stopped the convulsive-type seizures, which were getting very dangerous for me. I had fallen into the bathtub as I was having a seizure early one morning. When I first started taking Xcopri, I was just so relieved and so happy as I was at the end of my rope. It's been a lifesaver for me."
"Not a big fan of cenobamate, bad side effect profile, caused me to have horrendous nerve pain in my foot, was very sedating and impaired my memory, most effective drug at controlling simple focal epilepsy, although still only cut it down to 1 every 5 weeks which isn't good enough to get me a drivers licence. ended up dropping after 4 months and switched to keppra."
Xcopri (cenobamate) "If I was taking the full dosage my doctor says I need, then I would be having migraine-like headaches every day. Also, my vision seems to have gotten worse over the time I have taken Xcopri, and the concern over a previous prescription causing blindness was the main reason my doctor changed me to Xcopri. There is not a generic for Xcopri, which makes the medicine very expensive for someone who is disabled. I deal with horrible stomach pain and difficulty speaking now every day. I have some trouble swallowing now also. I take 1 50 mg tablet a day."
"This medication has made me feel like a new person. Unfortunately, I will stop taking this because of the price. I am on Medicare and was told today that I have reached my gap. No more coverage until I pay $8000 for prescriptions. How can I pay that much?"
Xcopri (cenobamate) "I happen to be a historic case. Having undergone 2 neurosurgeries, then experimentally put on clobazam (1st in North America), where clobazam was a miracle med, I suddenly went 72 days clear! (Prior, I never went more than 2.) Then Topamax assisted me more, going 1024 days clear. I changed pharmacies, where it was VERY important to be on name brand, no generic meds, where the message was given but not listened to. I got generic clobazam and Topamax, leading to a flare of 203 grand mals the following week. Back on the name brand, the meds don’t work as well. I am being eased off of clobazam (down from 70 to at least 30 and determine what to do on my follow-up) and gradually merge onto the Xcopri, where since my dose has been 12.5 mg along with my Topamax and Vimpat, I have had no side effects. I presently am at 100 mg. My convulsions seemed to get under control once I was at 25 mg, but that cannot be conclusive. As my seizures come in clusters, it may have been a longer than usual period."
Xcopri (cenobamate) "Xcopri has given me many side effects, including fainting, fast heartbeat, weakness, and more. The side effects I've experienced are not worth it."
Xcopri
Xcopri
