Is anyone taking Xcopri?

@santosha
Chris, my hospital diagnosis was Syncope and collapse, transient alteration of awareness. I'm not sure what all that means. I'm medicating for seizures, but I don't really know any more specifics
Frank

@santosha
Chris, one other thing. I had an episode back in December 2024 when I had an emergency in the middle of the night. After lots of testing, there was no diagnosis. In hindsight, this was probably my 1st seizure event.

@santosha -- yes doctor knows about his fatigue. Have appt. in 2 weeks. (Just googled--again-- Xcopri side effects: fatigue is considered a 'common' side effect.) We need to practice more 'patience and resilience" as you noted. Thanks.

@frankv
Thank you for sharing more of your story with me.
I can really relate to what you're describing. My seizures (focal ones) started in my adolescence, but I didn't get my epilepsy diagnosis until 2019, when I was 48. That's when my seizures became more frequent and severe. Focal seizures can be so quick and subtle that they easily go unnoticed by others, and sometimes they don't even show up on tests. I've heard similar stories from people who lived with focal seizures for years before finally getting answers.
There's actually an interesting interview with a doctor who went through the exact same thing. It took a decade for her to get diagnosed despite her medical training! Here's the link if you're interested:
- Despite Medical Training, A Young Doctor’s Epilepsy Goes Undiagnosed for a Decade
Cure Epilepsy

@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

@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

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.

@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.

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

@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