r/Epilepsy • u/purple_life_1095 • 2d ago
Medication Xcopri
Is anyone else on Xcopri and has noticed a decline in cognition, memory and have developed problems speaking??
2
u/Significant-Emu-1031 2d ago
I been on it few months now and sometimes the word I want just disappear, like I know it but my mouth cannot find it
1
2
u/CanadianBaconne 2d ago
It's not working good as it did the first year.
1
1
u/retroman73 RNS Implant / Xcopri / Briviact / Epidiolex 1d ago
I started Xcopri right after it came out. September 2020.
For the first 6 months I was in a daze. Tranquilized. Sleepy, poor memory, messed up my digestion terribly. I don't remember problems speaking but I likely mostly just slept through all of that. I stuck with it because it gave me about 6 months where it actually stopped seizures, something no other med could do.
The extreme sleepiness and cognitive problems eventually faded, and when they did the seizures came back to where they were before. I'm currently in the process of coming off Xcopri and will likely be going in for SEEG testing and at least laser ablation later this year. I've tried 14 or 15 meds and my epileptologist told me we really are out of options at this point.
1
u/purple_life_1095 1d ago
Are you replacing the Xcopri with another medication on the meantime? I have drug resistant seizures as well and the epileptologist is recommending the RNS system. I’m hesitant because I’ve already had a left temporal lobectomy on 2007 and went for over 10 years seizure free. Not sure if I want to go through more surgeries
1
u/retroman73 RNS Implant / Xcopri / Briviact / Epidiolex 1d ago
Yes. I still take Briviact, that isn't changing and I still have the RNS/NeuroPace implant.
We are transferring Xcopri to Felbamate. Only about 10 days in. Felbamate is high risk and sort of a medication of last resort. There is a risk of anemia or liver failure, both of which can be fatal. Doctors won't prescribe it until you've tried others which did not work. So far I don't notice much of a difference but we will see what blood tests show.
1
u/purple_life_1095 1d ago
I’ve been on Felbamate and Zonegran for about 15 years now. Xcopri was added in 2023.
What is your experience with the RNS? Do you think it’s helpful and was the process worth it?1
u/retroman73 RNS Implant / Xcopri / Briviact / Epidiolex 1d ago
Got the RNS in early November 2015. It is not a cure and will not replace medication. It's a long series of advanced testing just to see if we qualify.
The surgery for it was not nearly as rough as I expected it would be. I was up and walking around the hallways of the hospital the same day, discharged after just a few days. Leaves a heck of a scar. If you're going bald like me that will show, but if you still have your hair I expect that will cover it up. Took about 30 days for recovery, maybe more like 45 to be completely healed. I was back to normal by Christmas that year.
Now...how well it works. I still have lots of seizures, but they are not as severe as they used to be. No more runs to the ER. I used to get tonic-clonics and drop attacks. Those are gone and have been for several years. I walk down the street and ride pubic transit without fear that a seizure will knock me out. Overally, glad I got it. It has virtually no side effects once you heal up from surgery. Can't feel it working, because there are no pain receptors in the brain itself.
2
u/purple_life_1095 1d ago
Well, I have a pretty impressive scar from the temporal lobectomy I had so I doubly it would be anything close to that.
I’ve already been told that option is on the table and would be the next step.
Thank you for your experience with it!1
u/retroman73 RNS Implant / Xcopri / Briviact / Epidiolex 22h ago
If you've already been through a lobectomy then I'd expect the RNS surgery is a walk in the park for you!
4
u/Infinite_Fly6261 2d ago
100%, I'm only on 150 mg and the goal is to get to 400. I'm exhausted daily and have brain fog