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What helps you manage anger when living epilepsy?
Epilepsy & Seizures | Last Active: 19 hours ago | Replies (53)Comment receiving replies
Tomorrow I start Xcopri for the 2nd time and I learned long ago never to get my hopes up. I'll be starting on 25MG and in 3 months I will see my Epileptologist again. I'm not sure how it will go and I certainly hope my seizures start decreasing I've had 6 this month. They are wearing me out.
I've also looked into the RNS just in case this doesn't work out.
Belinda 5000
Replies to "Tomorrow I start Xcopri for the 2nd time and I learned long ago never to get..."
@belinda5000
Hi Belinda!
I'm genuinely hoping Xcopri brings you some relief this time. 🙌
I'm not sharing this to compare struggles, but I've lived with seizures since I was a teenager, following an accident in childhood that left me in a coma for 10 days. The diagnosis of temporal lobe epilepsy with mesial sclerosis didn't come until I was 48 — I'm 55 now.
Like you, my epilepsy is also refractory — I didn't have much success with various traditional reference medications. What finally changed things for me was Epidiolex (pure CBD oil), later combined with a low, children's dose of Keppra.
I don't know if that's a path that's been discussed with you — has your doctor mentioned Epidiolex as an option?
What kind of epilepsy syndrome do you have? Do you have the possibility of working with a neuropsychologist?
Chris
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@belinda5000 Worn out for me was after TC's. I could't carry the weight of papers in my briefcase. Sickening depression because I've always maintained a physically active lifestyle. I understand your being worn out. Please try to stay with this group. For me, not only that I learn from others' experience and suggestions, I realize I am not the only one with the condition I have. It can make a difference.