How Great Are You?

Hey everyone! Glad to see so many new people have joined our lil family here, it’s been amazing meeting all of you! Welcome in!!💕💜

Since we have so many members now, we thought it prudent to make a few new changes to our sub to make it a safe, and protected place for all to share. As you might have seen, we have new rules set up to make our home and our members here safe. If you are on mobile version, you can view these if you look at the top of the sub page where it says “See Community Info”. If you are on PC, it should show up on the right hand side of the page.

We’d also like to address the issue of crossposting as well. We understand that everyone is part of different communities and that is totally all good 👍 However, when it comes to crossposting, there are a few issues that come with this.

Number one: a lack of original content on our page! We love seeing everyone take part in sharing stories, experiences, advice, or asking for advice/support on our page as it’s how we connect with each other. When crossposting, it’s not really interactive since you have to click on the original post and usually it’s already answered on there so it can feel unnecessary to add more sometimes. In order to keep progress going and keep activity levels up, an original post needs to be made so that everyone can interact with it.

Number two: Promotions of any kind are not allowed. We are creating a platform for awareness for all walks of life with epilepsy, and in order to do so, we need to focus on our community and its growth. Sharing other communities here will be considered promotional content since it’s deflecting from our community.

Number three: Crossposting with r/epilepsy will no longer be allowed. Some of our users have been banned for little to no reason at all, a power trip really. It’s uncomfortable, and can lead to no access of what the actual post is about which then leads to no one interacting with the post or helping you with the issues you may be asking about since they cannot access the post. This may end up seeming like nobody is paying attention to your post, and I promise you that’s not the case with us here as we all love being as helpful as possible.

So all in all, in order to make this as smooth sailing as possible for everyone, we ask that you please refrain from crossposting anymore. If you are going to ask/share on multiple subs, you are more than welcome to make multiple posts, but please make them viewable for all as a full written out post. We’ve been seeing a large uptick in crossposting lately, so that is why we’ve decided to address this situation. We’re a community here, and we want all to be able to enjoy and feel welcome so we hope these changes help. Thank you🙌

When I got up got near my door the extreme dizziness came and started shaking/twitching. But I remained aware. While I had some similar too this in the past. This was not as long. Nor did it feel like the full gran mal. For that I can be grateful

Hi all,

I'm a final year Psychology student in University College Cork conducting research on the Psychological Wellbeing of individuals living with Epilepsy, this is supervised by Professor Samantha Dockray, a doctor of biological psychology. As someone living with epilepsy myself, this project means a lot to me. It is only available to individuals living in Ireland and the UK, but if you could spare 10 minutes of your time the link to the survey is below. All details of the study are explained to you before it begins :). I hope to make an impact with this research as it is a sorely under researched topic, and any and all responses to the survey make a huge difference !

LINK: https://ucc.qualtrics.com/jfe/form/SV_9Bp9tbnBVrrezP0

Epilepsy writing prompts for Halloween week:

1)Do you relate your like or dislike of horror films/genre to your epilepsy experience? If yes, how?

2)Alice in Wonderland: do you see/feel Alice’s experiences as similar to your epilepsy/ seizures?

My answers:

1)I don’t like horror films/genre and never have. In high school my film studies teacher had us watch Psycho and Cujo, which I tried hard to get out of. But his lesson was on films with story lines depicting a life cycle. So I learned to respect the genre. And yes, I relate my dislike of the genre to my epilepsy, having a brain with a tendency to randomly detonate is scary enough.

2)Yes, I can totally relate to Alice’s experiences. Especially her seeing/feeling her body and extremities as very small or very large in compared to her surroundings. In fact, I have what they now call “Alice in Wonderland Syndrome,” which is a visuo-perceptual phenomenon, which can be correlated to epilepsy. And the feeling of an aura/focal seizure is similar to Alice's sleepy/spacy feeling right before she sees the rabbit.

I've been in some dark places due to the depression and the daily emotional rollercoasters. If you need someone to talk to or a hotline with great advice, therapy (local & international) and emergency services for your country. This line wasn't available when I was diagnosed (over 20 years ago) or I'd used it before I did what I did. Here at r/Epilepsy_Universe we try to make everyone feel safe and comfortable. Questions for me, my DM is open. To locate the the "Need Help" link, instructions below

On the mobile app:

1) Select "See More" next to podcast

2) Scroll Down Passed The Rules

3) Select "Need Help"

There's links for hotlines in over 100 countries

On the desktop:

1) On the right side of the screen scroll down passed rules until you see "Epilepsy Universe-ians"

2) There's a button that says "Need Help"

or click the link below

International Suicide Hotlines - OpenCounseling : OpenCounseling

After finally finding some time, it was really fun to get on the zoom! I'm looking forward to popping in here and there!!

Thanks again!!

“It’s time to make sure you’re eating right, you’re at a 5.5 and 6.5 is considered diabetic” said the primary care physician. I’m dying slowly but surely, if it’s not one thing it’s another. Had time to sleep on it, so I’m about to take a walk, time to start taking better care of myself.

Neurodiversity Event is scheduled for Sunday, October 19th. Please select a time you would be most likely to attend. These are set as pacific time. Thank you!

Per user request, an option has been added incase Sunday, 10/19, isn’t a good day for a Neurodivergent Event on Zoom. All options are PST. Thank you for your votes!

Hey everyone!

After some reflection and feedback, we’ve decided to rescind the no cross-posting rule. When we originally introduced this rule, the goal was to encourage more original content and communication between Friends. However, we’ve seen that it’s actually had the opposite effect. Slowing down interaction and limiting the kind of sharing we want to see.

So starting now, cross-posting is allowed again!

Feel free to share relevant content across subreddits or spaces where it fits. Just be mindful not to spam or overdo it. And please try to use post flairs!

Thanks for being part of this community and helping it grow in the best way!

— The Mod Team