← Return to Is anyone taking Xcopri?

Discussion
lynn0225 avatar

Is anyone taking Xcopri?

Epilepsy & Seizures | Last Active: Mar 24 4:18pm | Replies (77)

Comment receiving replies
Profile picture for jemollica @jemollica

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

Jump to this post


Replies to "Hi Chris My son had emergency surgery in 2016 for a intraventricle central Neurocytoma of a..."

@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