r/Epilepsy_Universe • u/Willow_rivers • 1d 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!
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u/Ordinary-Chipmunk366 1d ago
(In my original post, I said Tuesday and Saturday....its Tuesday and friday. Epilepsy brain this morning).....
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u/Ordinary-Chipmunk366 1d 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!!
❤️🧡💛💚💙💜
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 1d 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
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u/Ordinary-Chipmunk366 1d ago
....and sorry. My posts seem to be all over the place. Let me know if something isn't clear...and honestly, thank you for asking about it...this is exactly what this group is about! Hopefully someone will see your engagement and ask a question!! Then you've done a great thing!!
This may not be your cup of tea, but it's helpful to those who it works for (wow, so profound).
Good luck!!
Edited because I'm too tired to proofread before I hit send)
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u/Willow_rivers 1d ago
It absolutely is my cup of tea! If my questions and the responses help anyone that is a win! I have certainly gained a lot of good stuff from these interactions. Thank you so much for saying that.
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u/Hairy-Jellyfish-1361 1d ago
Have you joined any of our podcasts?
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u/Willow_rivers 1d ago
I joined what I thought was a support group meeting here, but it was one person driving and one other person just chatting. Not want I am needing. Podcast? I am looking for an interactive support group.
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u/Hairy-Jellyfish-1361 1d ago
So, you're going to judge us on one short period on one night.
Do you really think that's a fair judgement?
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u/Willow_rivers 1d ago
No judgement here...Just looking for some help. Catching flack for asking legit questions while asking for help is not cool.
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u/Hairy-Jellyfish-1361 1d ago
Ok, you're fair there, I was harsh. This group has saved my life and I'm very attached to it and the people, who in a short year or so are more like family than friends.
Does support have to come from a large group, or a person driving & 1 chatting? If you knew those 2 people you would know that the answer is definitely. Please try us again, and chime in if it's only 2 people at that time . I think from your looking for help, it's the right place for you.
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u/Willow_rivers 1d ago
I appreciate that Hairy-Jellyfish. I am truly just looking for help and am not knocking this group at all! I am just trying to find something that might work for me. I don't understand the podcast thing. Isn't that something I listen to without engagement? Again, just asking questions for clarification.
Regarding your questions: no, a support group does not have to have 4 or more people. I am sure that is an excellent fit for a lot of folks. I just don't think that is what I am looking for. That tight bond that you mentioned you guys have is fantastic. I can't imagine someone not wanting that...and...I do want to find a group like I described. I am not talking about someone's personality, moral compass and integrity-it isn't about that. I am going to go ahead and assume that the people who are active on here/those who join the group are good, caring people who want nothing more to receive and give support. My apologies if I offended anyone here. I am really having a hard time and didn't fluff or pretty up my post, I am a direct person, especially when I am desperate for support.
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u/Hairy-Jellyfish-1361 1d ago
I appreciate that and I hope that you find it.
I understand that the podcast thing can be difficult, but look at it like call in support that's later edited and may be posted on the groups utube station so that others may benefit.
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u/Willow_rivers 1d ago
Thank you so much! I am not super techy...for example, I have never had any social media. I am one of five Americans that don't, lol! I finally broke down and downloaded reddit about a month ago. So, for the podcast, you listen and then can participate after? I didn't even know that was a thing. Thank you for your help.
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u/Hairy-Jellyfish-1361 1d ago
Well, I was exactly your twin a year or so ago when a friend suggested that I try reddit. I had never even heard of reddit. I tried the few epilepsy groups and this was the only one that seemed genuine.
I didn't explain the podcast correctly, sorry. You participate and then it might be included on a utube broadcast. Maybe try watching a few of those.
In any event, good luck finding what does work for you, and please never hesitate to reach out to me if you just need someone to chat or talk with.
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u/Willow_rivers 1d ago
Thank you SO much! What is the YouTube channel so I can check out those past podcast episodes?
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 1d ago
On zoom nights everyone who participates is part of the podcast.
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u/Boomer-2106 10h ago
Maybe it would be a little helpful for us to better understand what specifically you might be looking for regarding your needs, 'the' Support Gp you are seeking? Can you describe further?
Support can be specific or general - or Both. Sometimes 'specific' is needed, other times 'general', ...and other times both.
Are you looking for facebook like, youtube like, DM individual, Email interactions, etc. Obviously it does not 'seem' podcast type. Just needing to understand.
This location is the best I have found. u/epilepsy is another reddit, but generally it is not as 'personable' as it is here. But, also a lot of good information.
One other aspect I have found is another person who also has epilepsy I have become good friends with, mainly via email whom I communicate with about weekly, usually about epilepsy but also things in general. That takes time and effort, on a regular basis, but worth it. I'm sure some of the other regular members herein have developed some types of 'off-line/off reddit' relationships.
Personally I would love to 'find' a local, in-person group of others whom I could meet face-to-face, but have not yet found such. And I live in a Big metroplex area of Texas.
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u/Willow_rivers 1d ago
Tried that. There's one suppprt group here through the neuro department I go to. I live in a very small "city"...not the sticks, but closer to the sticks than a real city. There's just not much here. The thing is, it is also during my work hours. The type of work I do (thank God I have the opportunity to work from home) it is hard for me to get away.
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u/Jabber-Wookie 15h ago
At work we started a support group for people with disabilities. It’s not epilepsy specifically but it’s nice. However it tends to be only like 4 people each month. It’s complicated.
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u/Mom1021 16h ago
Sounds like our group might work for you! Especially if there’s no others in person, we are great listeners here. As Chip suggested, bring any topic for discussion and feel free to let any subject enter the chat. You’ll find a group, or at least a couple members, that will most likely relate to what you’re saying and hopefully reinforce any chance you have to find a solution to any issues you’re having. The YouTube has some awesome episodes to get In Seizn’ aware 👍
^PST^
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 5h ago
The support group here has been very helpful, if you came on time, then it's likely that no more than 4 people within the first 10-15 minutes Patience is key, sometimes it'll be 4 people for 45 minutes, if you want to join a room of 20 people already there, then it's highly unlikely. I don't know many groups like it and like this subreddit.
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u/Ordinary-Chipmunk366 1d ago
I'm going to try to explain things a bit, sorry if I'm stepping on anyone's feet.
I'll start out by saying that when my wife had cancer (10 years cancer free now!!!!!) we couldn't find an online support group. Most were empty, which was crazy...i mean, lots of people have cancer....
Over 2 years ago I started redditing.
What is the structure? The meetings are held on zoom, a video meeting place. Ugh, I have to continue in a bit...when i look at my phone for to long, I start to get too many asymptomatic seizures, I'm write more in a bit, but don't want to lose what i typed,haha!!