Is anyone taking Xcopri?

@santosha
My doctor chose xcopri even though it’s not for tonic clonic because he has has good success so far. I also emailed with the NIH and she said they have had great results with xcopri for tonic clonic

@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.

Dear @bearbayou
What meaningful work you've done and continue doing.
May you be blessed in this calling! 🙏😇💜
Chris

@santosha -- Definitely, having seizures and also needing to be 'up' for dealing with so much all by yourself---this is sad!
There are many in US society living very challenging lives...Migrant Children for example (I was their teacher) Later, for 6 years I volunteered with Austin, Tx's homeless people--as their uncertified "barber", 4 hrs, 1x weekly) Now living in Calif I also work with/for the homeless: 1-2x weekly, I deliver day-old pastries, donated shoes, coats & luggage for street living. -- BTW: recent studies concluded that 75& of homeless have a mental/emotional burden, which worsens the longer they're on the streets.

@bearbayou
Good Morning!
Your son is fortunate to have you and your husband advocating for him, just as I'm fortunate to have my husband by my side. It's heartbreaking that many people have to navigate this alone.
Chris

My pleasure @frankv !
When my focal seizures started, they were so subtle and lasted just a few seconds that I didn't give much importance to them. It wasn't until I learned more about epilepsy that I realized they were auras: focal seizures where a person remains conscious and aware.
Chris

@santosha
Thanks for the link. Interesting story. Certainly possible that I went for years with this, although I never experienced any symptoms. In a brain MRI about 10 years ago a couple of TIAs were discovered. It was not possible to date them, and I never was aware of those events.

oh yes, I agree that it's best to NOT read "possible" side-effects ... (especially for my son-- who is really beat down by everything happening--most of which not mentioned here). -- However, being informed about who shouldn't take x medication because of pre-existing conditions is important. ---Nowadays with the doctors/staff not being supported ($ and with live bodies helping them) ... things can be missed.
My son made me the overseer of his medical journey, my husband did too. Tragically, not everyone has such a person in their life.

@bearbayou
I'm glad to know you've already reported your son's fatigue to his doctor.
Something that might be really helpful for your son is to keep a daily diary during these 2 weeks before his appointment, jotting down all the symptoms - even small ones - he's experiencing. This could give the doctor valuable insights for your son's treatment.
I did this myself for several years, recording my day with events, symptoms, difficulties, and seizures (when they occurred). It really helped me identify my main seizure triggers and gave me precise information to share with my doctor.
One piece of advice from my own experience: try not to let your son read the medication leaflet with all the possible side effects beforehand. When I started a new AED last December, I took a different approach. This time, I reported my symptoms to my husband, and he checked whether they were listed in the leaflet. This way, I avoided being influenced by all that information and could report what I was genuinely experiencing. It also helped me avoid unnecessary worry or anxiety about possible side effects.
Wishing you both a good appointment and keep in touch!
Chris

@frankv
A transient alteration of awareness refers to a temporary change in a person's consciousness or ability to respond to their environment. In the context of epilepsy, this is most commonly associated with focal impaired awareness seizures (formerly called complex partial seizures).
Educating myself about epilepsy has been incredibly important in understanding my condition. It also helped me give more precise information to my doctor, which has been helpful in my treatment.
The Epilepsy Foundation - http://www.epilepsy.com - has been such a valuable resource for me. That's where I really learned to understand my Temporal Lobe Epilepsy. I'd encourage anyone who's been diagnosed with epilepsy to take the time to learn about their specific condition – it makes such a difference!
Chris