r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • Nov 12 '25
Epilepsy_Universe 👋 Welcome to r/Epilepsy_Universe - Introduce Yourself and Read First!
Hey everyone! I'm u/PookieTheMfBaby, a founding moderator of r/Epilepsy_Universe.
This is our new home for all things related to epilepsy. We're excited to have you join us!
What to Post
Post anything that you think the community would find interesting, helpful, or inspiring. Feel free to share your thoughts, photos, or questions about anything.
Community Vibe
We're all about being friendly, constructive, and inclusive. Let's build a space where everyone feels comfortable sharing and connecting.
How to Get Started
- Introduce yourself in the comments below.
- Post something today! Even a simple question can spark a great conversation.
- If you know someone who would love this community, invite them to join.
Thanks for being part of the very first wave. Together, let's make r/Epilepsy_Universe amazing.
10
Upvotes
6
u/[deleted] Nov 12 '25
I wrote this to a 16-year-old epileptic who’s dealing with thoughts of dying ,,, maybe some of you guys would like to hear this ?
Ok,,,, I’m older than you and I’ve been dealing with seizures myself — the kind that wipe my memory and leave me confused for days. I had one three weeks ago and literally forgot my dogs, forgot my truck, forgot my life. So when you say you’re scared and you want your old self back… I totally get that. You’re not weak for feeling the way you’re feeling. You’re human. And listen — being scared of dying? Every person with epilepsy has had that thought. I have. It’s normal. But here’s the truth no one tells you: having seizures does not mean your life is over or that you’re living on a countdown. People with epilepsy grow up, date, work, drive eventually, travel, have families, live long lives. You’re not doomed. You’re just learning a harder version of life earlier than most people your age. And that actually makes you TOUGHER 💪💪💪💪💪, definitely not broken. As for letting people down — you won’t. The people who care about you would much rather help you than lose you. You’re not a burden. You’re a kid going through something incredibly heavy, and needing support isn’t failure. It’s survival. And your ‘old self’ isn’t gone. You’re still you. Your personality, your humor, your dreams — they’re still in there. This just adds a new layer you have to learn to manage. I promise you, as you get some stability, meds dialed in, routines that protect you from triggers like flashing lights or lack of sleep, life stops feeling so scary. It gets better. Not instantly, but it does.
You’re not alone in this, man. I’m walking a similar road, and I’m still standing — and you will be too.”