Is anyone taking Xcopri?

@santosha
Thank you for your kind words
He suffers daily intermittently through out the day from his internal brain seizure like sensations
He was diagnosed with focal seizures and is fully aware of his sensations as he was when he was experiencing the outward seizures
So far no relief has been found for him and for so many others as I read
I pray research will come up with a solution for all those suffering from these episodes which deliberate their quality of life

Soy, I still fall down most every day from my lousy balance on my right leg. Seizer or falling down and hi to your head… mmm…

You're so welcome, @jemollica !
Thank you for sharing more about your son's situation—it really helps me understand what you're both going through. I'm truly sorry he's facing such a difficult time.
Has his doctors mentioned Epidiolex as a possibility? I'm tagging Kerry (@keeg1010), whose son also has treatment-resistant epilepsy and has seen excellent results since Mayo started him on Epidiolex. She may have some helpful insights to share.
Keeping both of you in my thoughts!
Chris

@santosha
Thank you for your kind words
He suffers daily intermittently through out the day from his internal brain seizure like sensations
He was diagnosed with focal seizures and is fully aware of his sensations as he was when he was experiencing the outward seizures
So far no relief has been found for him and for so many others as I read
I pray research will come up with a solution for all those suffering from these episodes which deliberate their quality of life

@jemollica Good morning!
I'm so sorry for everything you and your son have been through over the years.
I'm glad to hear he's no longer having the outward tonic-clonic seizures. I'm wondering if these "inward seizures" you mentioned are focal seizures? Even though they're internal, they can be very painful. Most of my seizures are focal ones, and some can be quite intense. After my J&J COVID shot, I had continuous focal seizures for 10 days and was completely exhausted. So I have some understanding of the pain he's experiencing 😓.
Does your son stay aware during these seizures, or is his awareness impacted? How many of these inward seizures is he having on average each day? Did his doctors explain what type of seizure these are?
Sending you and your son much strength! Crossing my fingers that his doctors will soon find a way to reduce these inward seizures 🙏🙌.
Chris

Hi Chris
My son had emergency surgery in 2016 for a intraventricle central Neurocytoma of a massive tumor- had no symptoms of a headache - major complaint frequently was upset stomach with vomiting that the emergency room always dismissed as a bad virus or other digestive ailments which all proved not it was from the tumor growing in his brain- he’s since had 9 brain surgeries one of which they inserted a VP PRO GAV SHUNT - result of these he remained with many disabilities and seizures- he’s tried multiple seizure meds thru the years to finally after 2023 having his last surgery of an anterior temporal lobectomy and taking xcopri along with onfi he has been free of experiencing his constant outward seizures , but he is suffering on a daily basis inward seizures like electrical painful sensations in his brain that neurologists can’t seem to alleviate - he tried migraine meds , Botox and injections to no avail and stopped - he continues with his daily therapies and keeps a positive outlook it’s our hope they will find a relief for him to have a quality life

@bearbayou
Thank you for sharing more details about your son's situation. After reading this last post of yours, I had another thought I wanted to share with you.
Low sodium is a well-known seizure trigger – one that both your son and I have dealt with. So I'm wondering if the LMNT and homemade rehydration solution you've been giving him might be another piece of his improvement puzzle. The increase in his sodium levels might have also contributed to fewer seizures, which in turn could be helping his cognitive improvement and vocabulary.
Have you perhaps noticed fewer seizures since you started giving him the LMNT and homemade rehydration solutions?
I wanted to share this thought while it's fresh in my mind. I'll respond more fully to your post on Monday!
Have a lovely Sunday!
Chris

@santosha -- good morning--
To answer your questions-- which are great ones because they ask me to notice more.
1. is my son still experiencing focal seizures? yes, they seem to happen, but not as many and -- he's become more attentive to "them" -- sometimes he'll seek out a quiet place (leave grocery store & sit in car), not go to a social setting, etc... where before he kinda just went alone with whatever.---thus, he seems more self-aware (physically and mentally/emotionally).
2. Trileptal --now takes 25 mg LESS daily.... it'll be a slow process, thankfully.
3. When Xcopri levels and vocabulary increase, etc:
I started noticing at 150 mg that his vocabulary was increasing..also, of all things, his inner wisdom. Yesterday, gently, he put his hand on my shoulder and said "Mom, why do you begin the day by getting on the computer? " I'm aware of this habit, but having it come from him---well, this morning began with my opening a book I've meant to read for weeks.
--About your keeping a dairy: I've been doing that for my son --at wise suggestion of his neurologist.-- now I realize I've gone slack in this regard--...yet ---just yesterday, for 1st time ever we had a 'letter' addressed to son's Nurse Practitioner (NP)--- son & I had worked on this together. Points were re: what's improved, what concerns he has, and help he needs
(NP) nurse practitioner told me 3 different times that the 'letter' was 'very helpful.'

Thank you for this post @bearbayou !
@jemollica, I completely agree with @bearbayou's perspective. As my doctor always says, every patient is unique – even two people with the same diagnosis can respond very differently to medications. For quite a while, I was able to control my seizures with a pediatric dose of Keppra, even though I'm 55 years old!
I'm so glad to hear your son has reached an XCopri dosage where the blurriness has resolved. That must be such a relief! Has XCopri also helped reduce or stop his seizures?
I'd love to learn more about your son if you're comfortable sharing – what type of epilepsy and seizures does he have?
Chris