Is anyone taking Xcopri?

@frankv
Thank you for sharing more of your story with me.
I can really relate to what you're describing. My seizures (focal ones) started in my adolescence, but I didn't get my epilepsy diagnosis until 2019, when I was 48. That's when my seizures became more frequent and severe. Focal seizures can be so quick and subtle that they easily go unnoticed by others, and sometimes they don't even show up on tests. I've heard similar stories from people who lived with focal seizures for years before finally getting answers.
There's actually an interesting interview with a doctor who went through the exact same thing. It took a decade for her to get diagnosed despite her medical training! Here's the link if you're interested:
- Despite Medical Training, A Young Doctor’s Epilepsy Goes Undiagnosed for a Decade
Cure Epilepsy

@santosha -- yes doctor knows about his fatigue. Have appt. in 2 weeks. (Just googled--again-- Xcopri side effects: fatigue is considered a 'common' side effect.) We need to practice more 'patience and resilience" as you noted. Thanks.

@santosha
Chris, one other thing. I had an episode back in December 2024 when I had an emergency in the middle of the night. After lots of testing, there was no diagnosis. In hindsight, this was probably my 1st seizure event.

@santosha
Chris, my hospital diagnosis was Syncope and collapse, transient alteration of awareness. I'm not sure what all that means. I'm medicating for seizures, but I don't really know any more specifics
Frank

@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

@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.

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

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

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.

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.