Cenobamate and Drowsiness: What Users Say

• 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!!!!"

• 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."

• 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."

• 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."