Cenobamate User Reviews & Ratings

• Nin...
• Taken for 1 to 2 years
• May 30, 2023

Cenobamate for Seizures "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."

• Chr...
• Taken for 1 to 2 years
• November 14, 2023

Cenobamate for Seizures "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!"

• Sea...
• Taken for 1 to 6 months
• August 5, 2023

Cenobamate for Seizures "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."

• Izz...
• Taken for 1 to 6 months
• November 8, 2023

Cenobamate for Seizures "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."

• Crs...
• February 1, 2021

Cenobamate for Seizures "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!!!!"

• Xco...
• Taken for 1 to 2 years
• March 4, 2024

Cenobamate for Seizures "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!!!!"

• SHD...
• Taken for 1 to 6 months
• July 6, 2023

Cenobamate for Seizures "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."

• Anonymous
• Taken for 1 to 2 years
• October 24, 2022

Cenobamate for Seizures "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."

• Pro...
• Taken for 1 to 6 months
• March 24, 2025

For Seizures "I am a UK patient. Currently titrating up from 12.5 mg to 200 mg daily of cenobamate (Ontozry) - a three-month program. Also on 1200 mg eliscarbazepine (Zebinix) daily, and downward titrating from 175 mg lamotrigine to 100 mg twice daily (3 months). Awful, awful daily memory problems, dizziness, somnolence, indescribable lethargy. My hair has thinned. Focal seizures the first two weeks of introducing cenobamate and withdrawing from lamotrigine. Very frightening. These have settled. I feel safer on cenobamate than I have in years, but the side effects are adversely affecting my work and personal life. Lots of adjusting. Will keep updating."

• MHK...
• Taken for less than 1 month
• May 19, 2023

Cenobamate for Seizures "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!!!"

• Chr...
• Taken for 2 to 5 years
• July 9, 2024

Cenobamate for Seizures "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!"

• Nat...
• Taken for 6 months to 1 year
• September 17, 2024

Cenobamate for Seizures "I am a 55-year-old woman. I have been on seizure medication for more than 40 years. Xcopri controls my appetite, lost a couple of pounds, I go to the gym five days a week, I am almost seizure-free, the petit mal is gone, which I was having five or six times a day, grand mal decreased too, maybe once every other week. I have a little bit of a memory problem slowly, but I feel my memory got a little bit worse in a shorter time, and there are things I can’t remember from the last two to three weeks, I can’t bring words too. I will call my neurologist and ask to stop and adjust with other medication. I have been taking lamotrigine for more than twenty years at 600 mg daily. I have extreme constipation, I go maybe once or twice every other week. I was scared I went to GI, I was scared from cancer. Everything came out okay, but my digestion is not working properly. I am losing a little bit of hair too. I wrote all these so people can see it and I’m sure they can improve the med since this will help everyone."

• Tim...
• Taken for 1 to 6 months
• August 8, 2023

Cenobamate for Seizures "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!"

• Ano...
• Taken for 1 to 2 years
• April 4, 2025

For Seizures "I have tried a lot of different types of AEMs, and when cenobamate was introduced, I was very grateful because none had made me seizure-free thus far. While I still sometimes have seizures with cenobamate, they have reduced dramatically in intensity and frequency, and also after some time have the lowest number of side effects. I take 350 mg of cenobamate, what I mostly struggle with are severe tiredness. I quickly fall asleep after taking my dosage in the evening, during the day, I’m less tired but still clearly more than usual. However, the medication is easy to use since you have to take it one time a day before going to bed. I really hope an improved version of cenobamate is released in the future that is even more effective."

• Lyn...
• Taken for 1 to 2 years
• November 14, 2021

Cenobamate for Seizures "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."

• F G...
• May 3, 2023

Cenobamate for Seizures "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 50 mg, the first week I felt okay. Now that I am in the second week, I feel so tired, weak, and dragging, my legs and muscles are sore, and I am so sleepy. I plan on calling the doctor to see what he recommends."

• Sha...
• Taken for 2 to 5 years
• October 19, 2024

Cenobamate for Seizures "I have been taking this medication for a long time, and ever since my doc put me on this medication, I have not had a seizures. It has been a full year since I had one, but before I was on it, I was having seizures, not every day, but once in a while."

• spr...
• Taken for 1 to 2 years
• May 16, 2023

Cenobamate for Seizures "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."

• Pau...
• Taken for 1 to 6 months
• July 27, 2023

Cenobamate for Seizures "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."

• 123...
• Taken for 1 to 6 months
• December 24, 2023

Cenobamate for Seizures "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."

• gol...
• Taken for 2 to 5 years
• May 9, 2024

Cenobamate for Seizures "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."

• Anonymous
• Taken for 1 to 6 months
• February 25, 2024

Cenobamate for Seizures "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!"

• Som...
• Taken for 1 to 2 years
• July 1, 2024

Cenobamate for Seizures "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."

• JJK...
• Taken for 1 to 6 months
• November 6, 2021

For Seizures "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 driver's license. Ended up dropping after 4 months and switched to Keppra."

• Sim...
• Taken for 1 to 6 months
• February 19, 2025

Cenobamate "In my childhood, the seizures were just lightheadedness that lasted 5 to 10 seconds, but around my early to mid-20s, they got heavier. For at least 20 years, I must have tried at least 20 different AEDs and combinations of them, but they either only barely worked, didn't work, or made it worse until, a few years ago, I got a VNS implant, which started making a difference, and a few months ago, I was prescribed 3x100 mg Xcopri per day with some other AEDs, and I haven't had a seizure in about 6 months! The main side effect for me is drowsiness, so I take it at night with my other nighttime AEDs. When I started taking them, they were a bit difficult to swallow (narrow throat), but it got better over time. I just hope the Xcopri keeps working for me, unlike many other AEDs I've taken over the years that worked a few weeks or months, then stopped for some reason."