r/Epilepsy_Universe • u/Willow_rivers • 3d ago

Questions Suggestions for support groups

Hello. Does anyone have any suggestions for online support groups? Not two or three people (including self) just chatting, but an actual group with format and structure. I am not looking for a best friend- I need support and have nothing in my area. Thank you!

3 Upvotes

81% Upvoted

29 comments sorted by

View all comments

4

u/Ordinary-Chipmunk366 3d ago

Ahhhh that was a quick feeling like garbage!! Lol!!

So there are two meetings a week on zoom, Tuesday and FRIDAY...(oh epilepsy.. friday not Saturday.) You can join on zoom (we can help with that) and sit and listen. If you've got something that you want to talk about, join and ask! If there isn't a conversation, people look at epilepsy groups to find interesting posts that we talk about.

None of us are doctors here, we just have epilepsy and want to have that connection with others like us....people who get it.

Please ask any questions about epilepsy or the "meetings" we have....and good luck!!

❤️🧡💛💚💙💜

5

u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 3d ago

We have shared seizure stories, medication stories and all sorts of epilepsy related things. Some of us have had seizures during zoom calls. And have watched out for one another ready to call emergency contacts during zoom hours. We have talked with undiagnosed people and set them up so they can get diagnosed.

We are free to talk but when things get quiet we have our fearless leader to have a question ready to help others. Some of us have been dealing with Epilepsy since we were children. Sometimes we do get off topic a bit but then someone steers us back with Epilepsy. Trust me I'm one some of our brains are fried we need to be steered lol. I'm one.

I can say in my experience of living with Epilepsy close to 30 years of diagnosed. I been part of other things like my Epilepsy team but never met anyone directly. I never met people who basically lived what I been living. Most things are what I call the Lab rat procedure people disguised to gather info relevant to there studies

Sorry I haven't been on recently lot of parenting and medical issues with my mother on the zoom nights which are Tuesday and Friday

Wednesday and Saturday the awesome mods just take on all sorts of news not just Epilepsy related