Is anyone taking Xcopri?

@santosha my seizures drained me, but each passing day it got better. They suck your strength away. I've come to recognize when mine are close, I excuse myself from what I am doing and take a quiet break and bring up happy things to think about, nothing fast to boost adrenaline but calm the mind. Hope that helps, I exercise daily each other day different part of the body. If tired then the next day. Hope this helps 🙏

@randallshields56
Hi Randy
Thank you for taking the time to share your experience! 🙏
Hearing strategies from others that help avoid seizures is always much appreciated.
Chris

Hello! I just started taking Xcopri a few months ago. I am so excited about this medicine! I have taken almost every drug out there, and had the worst side effects. I was running out of options. My neurologist told me this is a newer drug with hardly any side effects. I wasn't holding my breath. I have had double vision, weight gain, hallucinations, exhaustion, and so many more side effects from the other drugs. I haven't had any side effects with Xcopri! I also take a lower dose. It's amazing. I really hope this med works for your husband. It has changed my life.

Thank you for sharing your experience @heatherae !
Like you, I have temporal lobe epilepsy and have had a really hard time with side effects from the different AEDs I've already tried. Since December 2024, I've been on Keppra. My doctor reduced the dose little by little to make it more tolerable, and I was seizure-free for almost 8 months—which felt wonderful! But since last August, my seizures have come back despite increasing the dose again, and unfortunately, that's brought back many unpleasant side effects. I have a feeling my neurologist will suggest trying another AED at our appointment next week.
Would you mind sharing your current Xcopri dose? And do you also have mesial sclerosis in your temporal lobe?
Thank you!
Chris

Does the fatigue ever stop? --presently, my adult son is taking only 25 mg of Xcopri--as he slowly increases to the goal of 100 mg. --He must push himself to get thru the day. If he could, he'd stay in bed all day.

My first seizure event was June 2025. It was severe enough to be hospitalized for four days. I am taking lacosamide, 100 mg, twice per day and gabapentin, 300 mg three times per day. I have been seizure free since then. I'm 80 years old.

Hi @bearbayou
I'm sorry to hear your son is dealing with fatigue, too. This is really common with AEDs, especially in the beginning; it can take a while for the body to adjust. I went through several side effects with different medications I tried, and many of them faded after the first month or two.
How long has your son been on Xcopri now? And is his sodium level stabilizing?
Chris

Hi @frankv
I'm so happy for you, Frank!
Thank you for sharing this with the group. It's really encouraging for those of us still working to get our seizures under control. Hearing success stories like yours gives hope. 🙏
You mentioned your first seizure was last June and it was severe enough that you needed to be hospitalized. I imagine you had a tonic-clonic seizure (also known as a convulsion), right?
Chris

@santosha
Nearly 1 month on Xcopri--hasn't reached optimal level yet. Sodium level stabilizing? No recent blood test-- neurologist felt it wasn't 'that low'. She says sodium level will increase as Trileptal is decreased --yet decrease won't happen 'til Xcopri at optimal level.

@bearbayou
I'd suggest giving it one more month to see if the side effects improve. Starting a new AED really does take patience and resilience. I know that's easier said than done.
Have you mentioned the fatigue to your son's doctor? What did he or she say?
Chris