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Is anyone taking Xcopri?

Epilepsy & Seizures | Last Active: 6 hours ago | Replies (51)

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Profile picture for kariabrown @kariabrown

Hello! I have been taking Xcopri for almost 5 years now. I began taking it after a craniotomy and removal of what they had hoped was my seizure focus. They got most of it, but due to them not being able to get it all without losing some vision, I elected to stay on meds. Long story, short…I honestly can’t remember what my starting dose was but I was TIRED, even when taking it only at bedtime. I am now at the maximum dose of 400 mg a night. When I tell you, it has been a struggle, oh boy! Despite the fact that I now have to take a different med to stay awake during the day, Xcopri has kept my seizures more controlled than any of the many other meds I have been on. And the drowsiness seems to be the only side effect for me. And most anti-seizure meds pretty much cause drowsiness. Now, as I tell you this, I can also say that my seizures have been less controlled lately. However, my neurologist has been digging into this, and the cause seems to maybe stem more from the surgery than anything else. The Xcopri is still doing its job for the most part

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Replies to "Hello! I have been taking Xcopri for almost 5 years now. I began taking it after..."

Hi @kariabrown
Thank you so much for sharing your Xcopri experience in our group, this is much appreciated!
You're absolutely right; drowsiness is such a common side effect with so many AEDs. I've experienced it myself and still struggle with it.
What's made a real difference for me is my daily yoga nidra practice—just 30 minutes can be equivalent to about 3 hours of deep sleep—followed by a short nap right after lunch. Together, these really help me manage my fatigue.
Have the medications your doctor suggested been helping you stay more alert? And have you tried incorporating short naps into your day to see if that eases the tiredness?
Wishing you all the best as you and your doctor work on getting your seizures under control again!
Chris