Connect
← Return to Is anyone taking Xcopri?
Discussion
Comment receiving replies
@randallshields56
Hi Randy,
I'm so glad to hear that your seizures are now controlled and that you're still doing ok after this dose increase!
If you're comfortable sharing, what's your current dose? Have you noticed any side effects since it was raised?
Chris
Replies to "@randallshields56 Hi Randy, I'm so glad to hear that your seizures are now controlled and that..."
@santosha
right now .25 three times a day 9am-3pm-9pm
@santosha
I have issues w my right hippocampus scarring causing tonic clonic for 48 years.
Also have focal aware seizures where breathing is an issue as is movement of tongue.
These aee newer, as are clusters.
I am on 250 lamotragine bid 400 Zoninsimide Sid, 5 mg clobazam bid. I added Fycompa and it did nothing.
I added xcopri off label for tonic clonics and at 100mg I am seizure free for 4 months.
Also free for te focal seizures.
I read below. I also have neuropathy. But the shrinkage of hippocampus and neuropathy hasn’t advanced in years.
However my brain chemistry has come back w a slightly high ptau 181 count.
Reading you say “memory issues” makes me concerned and I think, if you haven’t yet, look at ptau 181.
I have sleep apnea. They think the count is high due to the apnea. I think it’s from breathing issues on the worst of the focal seizures where I gasp and take half breaths consecutively until there is no air brought in and I pass out.
The focal and clusters are all post Covid.
Connect
@santosha
was doing .25 twice a day. if things stay the way they are I'm going to try to go back to just two times a day.