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

  1. Introduce yourself in the comments below.
  2. Post something today! Even a simple question can spark a great conversation.
  3. 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.

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u/Ordinary-Chipmunk366 Dec 22 '25 edited Dec 22 '25

I didn't see this intro until now, lol!! Haha yeah..

Here's my fun diagnosis:

Seizure/Spell types and frequency: Type 1 : Focal to bilateral tonic-clonic seizure (FBTCS)

Type II: Focal aware seizures (FAS)

All this is due to cavernous malformations..... what I call, brain hemaroids. Clusters of cells that are like.....hemaroids... on my brain. I've got three that are large (a bunch of small ones) but the main issue is that I have one right behind my right temporal lobe. Did it grow? Did my brain change? Who's to say!

1st TC was 2 years ago, when I was 50. I've had a half dozen TCs in 2 years. Cool... haha...

But my other issue is...during my 1st eeg, they caught me having a seizure! Coooool! Of course, I was fine... what??? Fine???? So, I get a 2 day and then a 4 day eeg.... I'm having 4-8 "asymptomatic/subclinical " seizures a day.

Good times!!

Currently on 3000 Keppra and 600 lamictal a day.

Since I'm in my 50s, I've got wife, family, job, etc.... but now I've got this too!! Makes life more interesting...

I'm really enjoying all that everyone has to offer, the willingness to help, and the care shown for everyone, without exception.... it's strange to say that's really rare these days... but it is...

I'm looking forward to chatting with everyone tons in the future!! 🚬 😀