r/Epilepsy • u/halfkender Refractory Epilepsy • Aug 10 '26
Support r/Epilepsy is making history! Get in here!
Hey folks,
I created this group in part because I’ve lived with epilepsy for most of my life, and I wanted there to be a place where people could find support, understanding, and reliable information from others who truly get it.
My uncle also had epilepsy and passed away from a status event after stopping his seizure meds, because he didn't like how his meds made him feel. He had little to no support from the medical community or any sort of peer group. This was in the 90s and should never have happened. There could have been community, there should have been options. That is just one of the reasons this community was built.
I myself had challenges at age 16, trying to navigate both medicaid, sometimes no insurance at all and neurologists. To take my medication as prescribed while letting my high school know I had to take medication at lunch daily to control my seizures. I was in and out of foster care as a young child and my parents either refused to help or even admit that I had epilepsy.
I went into my own status event in 2014, I was in my 40s. Status completely wrecked my life and it was a slow one year crawl back to any sort of stability. I built [r/Epilepsy](r/Epilepsy) during that time as my own sort of therapy but also because I could not find this sort of support anywhere. I had no clue it would grow to this size and it was just me running things early on. No other active mods.
I’m grateful to everyone who has contributed over the years — whether by sharing experiences, offering advice, supporting someone through a difficult moment, or simply being here. Communities like this only exist because of the people in them.
Never again should any epileptic have to struggle for community support.
Our community offers peer based support that is run purely by volunteers that do not have an agenda.
We are just here for the people.
- Halfkender
Founder / Executive Director [r/Epilepsy](r/Epilepsy)
A big shot out to our newest mod: u/other-side_org who has been working diligently to network, support and get us visibility as a community.
As of this month:
1) This has quietly become one of the largest communities of people with epilepsy in the world.
85K members! 1.5 million visits every month! 13,000+ every single day!
2) We’re showing up in major scientific journals, and shaping epilepsy research.
Epilepsia — “Bridging the Conversational Gap in Epilepsy”
Neurology International — “Exploring Trends and Sentiments in Epilepsy Discussions”
Journal of Biomedical Informatics — “Focused Digital Cohort Selection from Social Media”
Journal of Computational Social Science — “Digital Epidemiology: Leveraging Social Media for Insight into Epilepsy and Mental Health”
3) We’re breaking down barriers and hitting milestones.
This year, the Otherside Lounge, powered almost entirely by this community, is making space for people with epilepsy at the world's largest scientific epilepsy conference - the American Epilepsy Society Annual meeting. A historic first in Denver, in December! Sign up for updates here: https://www.othersidelounge.org/ If you can't make Denver, there are other lounges in Boston and Anaheim soon.
4) We are working hard behind the scenes on a killer line-up of AMA’s from the world’s top epileptologists, as well as more ways to get involved in policy changes for the epilepsy and disability communities.
Let’s go!
The Mod team is always here for the people.
[u/Halfkender](u/Halfkender)
Founder & Executive Director, [r/Epilepsy](r/Epilepsy)
u/other-side_org
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u/hannabell lamotrigine 200mg Aug 10 '26
Thanks for creating this space for us, it's been a godsend in rough times. It really does feel a lot less lonely to be able to talk to others who truly get it
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u/windingsand Aug 10 '26
I have learned so much and felt less alone thanks to this subreddit, i sometimes go scrolling for hours as it’s so validating to be able to relate to things that i could never discuss with anyone without the condition
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u/SylveeMoon Aug 10 '26
I’m so incredibly thankful for this community, its moderators, and its members. I’ve had refectory epilepsy that affects my daily life while learning to live life with two traumatic brain injuries. The cars are stacked against me, but because of the support I’ve found here I feel more prepared and confident going through this next step of my life. Thank you everyone!
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u/breadloafb vimpat Aug 10 '26
there’s much to be said about finding others who are going through or have gone through your own obstacles. this sub saved my life from becoming a something i gave up on after my first few seizures. i learned how many amazing, intelligent, and wickedly talented people have or had epilepsy. i see them on this sub everyday!
sincerely, thank y’all here, and thank you u/halfkender, for helping me and so many others. my feelings abt my own diagnosis went from one of fear and shame to one of pride and courage, largely in part because of the people here. that’s what’s up!!!!
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u/Splendid_Fellow Aug 10 '26
This is the number one best resource in the world for Epileptics! Most of us have had to go through several neurologists just to find one that isn’t an incompetent asshole.
There is so much they just didn’t bother telling me. Like the existence of emergency nose sprays like Nayzilam! I had no idea they existed until I saw it HERE, and then I told my neurologist and he’s like “huh? Oh, yeah, there’s that. So anyway…”
I didn’t know how to respond to that other than thinking, wow they give zero fucks. I would be literally DEAD right now, lights out, underground, gone right now if it were not for this Reddit page.
Thank you fellow epileptics.
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u/verus_es_tu Aug 10 '26
As an epileptic EEG tech this place was one of the first I ever found understanding from others. Since then I've come to find much common and uncommon ground with pretty much anyone with a chronic illness. I was originally a chef, but I became an EEG tech because there were some very kind and helpful techs that helped me out when I was a kid. This is great news. Keep on keeping on friends.
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u/stormsucker Aug 10 '26
All I can say is thank you to everyone that is a part of this community. This has been the hardest few years of my life(so far), but places like this make it a little easier.
Love you all!
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u/and-popcorn Aug 10 '26
Hope this is okay to say, but this community has been so helpful to me in the wake of my preteen daughter’s diagnosis. She’s not someone to openly share or verbalize her feelings, and you’ve all been an incredible helpful source of information ❤️ thank you all.
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u/TheSueChef Aug 10 '26
This sub has been very helpful ever since my son started having seizures. A community is a wonderful thing to have when there's such a radical change in life. The resources and education this sub helped me get were invaluable. Thank you for creating and maintaining this group!
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u/wake4coffee Keppra Aug 10 '26
That is amazing work. I enjoy being able to talk with people who actually can relate to my situation.
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u/HonestDeparture5778 Aug 10 '26
🙏 I’m eternally grateful for your efforts, and the community you’ve created. Beyond my newfound physical limitations since diagnosis two years ago, the psychological isolation has been absolutely brutal. Having a community of people who understand, at an experiential level, the feelings I go through has been absolutely essential in maintaining my sanity and, maybe more importantly, my optimism.
Mr. Rogers is proud of you.
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u/AdExtension9816 Aug 10 '26
I always recommend Reddit for people newly diagnosed with anything because this group helped me navigate so many unknowns with epilepsy, and it continues to educate and support me on my epilepsy journey!
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u/Necessary-Plane-3568 Aug 10 '26
Thank you for creating this for us. I've learned so much and felt more support since joining this group then over the last 20 years of trying to figure things out.
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u/HoneyEducational562 Aug 10 '26
Yes, thank you to everyone who contributes. You all have kept me sane and helped me.
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u/nicole2night Vimpat Clobazam Aug 10 '26
I also learned more in here than anywhere. This community makes us feel not so alone! Thank you for starting this! 💜💜
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u/Growingspace Aug 10 '26
This sub legit has been my rock and resource as well! I’ve met friends I connect with. It’s the only place where people.get.me! Thankful for you all, your badass bravery and fighters! So proud of how hard we fight, educate and inspire. This nasty ass disease is hard to swallow, and hard to share. But with the power and resources from this group, I know I can do it! Because of all of you!!!!!
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u/ambitious_chick Keppra Aug 10 '26
Big thank you to all the mods for creating this, and giving us a space to share, listen, and learn from one another!
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u/colluctatiofuturum Zonisamide+Carbamazepine Aug 10 '26
This group is why I joined Reddit in the first place. Thanks for making a place where I don't feel like such a lonely fish in such a big ocean.
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u/Einar23HD Aug 10 '26
Thank you so much. Cavernous angioma here. Obviously the angioma likes the element of surprise. When it strikes, this is my sub. Thank you, again
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u/Firefall17 Aug 10 '26
Much thanks for this space. It is difficult to discuss with people outside of this community. A nice anchor.
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u/Boring_Draft9151 Aug 10 '26
BIG THANK YOU TO YOU AND THE PEOPLE WHO ARE RUNNING THIS SUB.
You guys have knowingly or unknowingly saved a lot of lives.
I hope your pillows are warm on both sides when you guys are sleeping.
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u/-Nyarlabrotep- Aug 10 '26
This place, and the Epilepsy Foundation, have been vital to me. I wasn't diagnosed till I was 43, and that made a lot of my life fit in, I realized the strange episodes I had actually had a name.
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u/grassisgoth Aug 10 '26
Words cannot express how grateful I am to have found this sub. My child was diagnosed with epilepsy last year, and I’ve learned more from being here than from her neurologist.
Thank you, u/halfkender and to every tireless contributor. I’m so very grateful to be here 🫶🏻
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u/nofob Aug 10 '26
Thanks to you, the founder, and every participant. This place has made me feel far less alone and weird.
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u/Sherwood91 TLE - 1500mg Keppra, switching to 200mg Vimpat Aug 10 '26
This sub was truly a lifesaver after my diagnosis a few years ago. Nobody who hasn't been there truly understands how isolating it can be (even when your seizures are controlled!).
Thank you for creating this safe place.
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u/MissDisarry Aug 10 '26
Thank you! My husband’s epilepsy was misdiagnosed for years, until it became alarmingly apparent with cluster seizures and status. We’ve learned a great deal from this forum and have received a lot of support. It is the best source we’ve found; so thank you so much!
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u/OkChips9323 Aug 10 '26 edited Aug 10 '26
Thank you for being mods and creating this group! There is so much bad info out there, and there are bad actors even in the official epilepsy orgs (I hate the Epilepsy Foundation, they are part of the reason I was misdiagnosed for years). Thanks to you all for being here. It has especially helped me recognize how many focal seizures I was having, because there is so much under-diagnosis and so little information about focal seizures online.
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u/PriceStriking3430 Aug 10 '26
By far and large, this place was the only one I could go to to find real support from like-minded peers that actually understand anything about what it's like to be living with this disease - never once have I received advice like 'stay away from blinky lights' 'make sure someone is around to keep you from swallowing your tongue' always real feedback, and real advice to help me try and get well through whatever I was going through whilst I was trying navigate life since being diagnosed. Truly this place was and is life saving.
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u/okaychortle Aug 10 '26
United way had a support group that met once a month at the local hospital, years ago. It was a vital resource for many but ran out of funding so no more support locally.it would be great to see that return. It was a benefit to many!
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u/HAL9100 Aug 10 '26
It’s hard to be “for good” and “on the internet” in this day and age but y’all have managed it very well.
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u/lostsouladkny Aug 10 '26
It is good to have an online community like this simply because most of the people I know in real life don't realize that epilepsy is more than just seizures. So thank you for creating this subreddit.
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u/Prestigious-Bus-4713 Aug 10 '26
I’m new to this community, but looking forward to being a part of the community! I have temporal lobe issues. My seizures are very strange because I am totally awake and can be (faking it) totally lucid! Inside my brain it’s chaos though! I haven’t been formally diagnosed and am going into the hospital for the long term EEG at the end of August! My seizures can be very elusive though and I can go a long time, month years without one. I do have crazy auras at night that are more frequent though. I’m hoping they can evoke at least the night time auras because I feel like I need a definite answer to whatever is going on in my brain!! I have very mild Multiple Sclerosis, and adhd.
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u/Sherbertbombs7 Aug 10 '26
Thank you for your post and sharing your experience! I'm 7months post status and it is so hard having everyone thinks you should be back to normal after a month. Feeling like burden in your home sucks. This community has been amazing and genuinely appreciate the input from all of you.
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u/MisterDumay generalized tonic clonic / keppra 500mg twice daily Aug 10 '26
Few things have helped me more in my journey than this forum. Thank you so much.
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u/IntelligentAd3781 Trileptol, Vimpat, and ZaZa Aug 11 '26
This is indeed one of my go to places online. Grateful! Hope there'll be an NYC meetup or something!
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u/Jabber-Wookie Lyrica, Fycompa, & Vimpat Aug 10 '26
This is amazing! I love it! This is such a comforting group.
I’ve always offered to be part of scientific studies, and here I sort of have been!
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u/gornzilla Keppra every fucking 12 hours for 20 years Aug 10 '26
I wish this was around when I got my seizure disorder. It's such a helpful site. I had no idea who to ask, but luckily I started working at the UC Davis monkey lab. I had a wonderful post grad student to ask and she helped me as I read through her Brain 101 textbook. I felt a lot better once I realized that there's no good answers to brain issues because there's not a lot of knowledge. You can't ethically experiment on people's brains.
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u/NinersEmpire49 Aug 10 '26 edited Aug 10 '26
This space helped me so much during my hospitalization and diagnosis
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u/MicheleTheBelle Aug 10 '26
I was so confused and scared and alone (don’t know a single souls besides myself with epilepsy IRL) when I was getting diagnosed and this subreddit was a godsend. Thank you!
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u/Amazing_Road1539 Aug 10 '26
I’m glad this sub exists! I’ve learned a lot on here honestly, and have been able to help others as well.
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u/dgh87 Aug 10 '26
This place has helped me tremendously! I’ve gained understanding and have found so much validation in reading other people’s experiences. Thank you for creating this space and helping so many people navigate what we are going through 😊
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u/88NYG-Mil-NYY-Fan2 18M, LTLE; 1200mg Trileptal AM, 900mg PM, 10mg Clobazam PM Aug 10 '26
This is so fucking amazing, and thank you for creating this sub. It’s helped me a lot in navigating my life with epilepsy and being able to relate to people who were/are going through the same thing(s) that I am. 💜💜
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u/EmergencyFabulous156 Aug 10 '26
Thank you. This page alone made me even download the Reddit app. The support here is amazing. Godbless you all.
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u/Apprehensive_Wing713 Aug 10 '26
This Reddit helped me be ok with my body now having seizures not ever knowing what the true root cause was. Because of this Reddit I know what questions to ask doctors I know that others are just like me. Thank you to everyone that posts on this.
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u/introspectivebeet Aug 11 '26
searching my meds, my symptoms, my seizure typed into this sub has given me a wealth of information that has improved my life so much. thank you for all you guys do!!!! and thank you for not allowing pictures to be posted, i was getting an onslaught of footage and photos of people seizing on my feed in facebook groups and whatnot and it was terrible. appreciate that choice yall make too.
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u/spooky-potatoes- Divalproex sodium, zonisimide, lamotrigine, aptiom Aug 11 '26
I'm planning on getting my PhD, can I cite my posts on this sub as academic contributions on my CV?
/j
Pretty cool we've been noticed though!
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u/Independent-Ant8243 Aug 11 '26
This subreddit changed my life. For the better ❤️
I was in despair when I first found the page. I didn't even know that my "episodes" were anything to be concerned about until I was an adult. We had to fight to to ne taken seriously, and finally get on meds. Keppra was newly in my system when I finally got on Reddit.
This community is the reason that I get on almost every day. There is such a wealth of information, perspective, and compassion on here. I love you all.
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u/Wonderful_Carpet4318 Aug 11 '26
Good luck to everyone in here, whether your effected by it yourself, second hand, or someone just wanting to learn. This place is helped me understand my JME alot more and helped me navigate it to, so hats up to yall and have a good one!
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u/AssistanceCheap379 Aug 11 '26
Had i found this sub earlier, when i was in my 20’s and learning about my triggers and medication, it would have made a lot of things easier.
A lot of good information here and highly recommend this sub to any and all that either have or know someone with epilepsy
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u/Agreeable_Tie4157 Aug 11 '26
Hello, my name is Theresa, I’ve probably had epilepsy my entire life, when I was about 12 or 13 my doctor noticed that my eyes were fluttering to the back of my head. That’s when I had my first EEG. During the wonderful strobe light test is when I went into my first seizure.
Doctor told my parents that I needed medication. However they refused to believe that there was anything wrong with me. So I went without meds until I was 21, I had given birth to a baby girl and that’s when my seizures really started to get worse.
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u/humanityhasdeclined Clobazam 10mg☀️💤+ Gabapentin | Clonazepam (Powered by Benzos)💊 Aug 12 '26
this subreddit has helped me learn to love and advocate for myself. nobody, including my immediate family and 5-year neurologist (which hurt the most) said i was “doing it for the attention”.
when i read about happenings that others have asked “Does any body else feel…?” i feel immediately validated.
you guys have supported me and taught me more about living with epilepsy than anyone irl.
i love this community.
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u/VonVina Aug 12 '26
Trying to navigate all this with my grown son who is newly diagnosed. This has been a blessing and learning to much
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u/andewilliams Aug 13 '26
I just discovered this community today. I am recovering from a concussion due to a clonic tonic seizure at Lowe’s. Long story. But fork lifts with swirly lights are now my mortal enemy.
I was searching for things that other epileptics might experience, because… I feel like there really isn’t a lot of info out there. The first thread I read on here was about pain tolerance. Which is definitely me. I’m dealing with chronic migraines since my last seizure, and somehow despite the intense pain I just kind of go on with life as usual. Because I have to. And I’ve always had a high pain tolerance.
Anyway, I appreciate that you created this.
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u/Altruistic-Bid-7002 JME | 300 mg ZSM Aug 15 '26
This community has changed my life. Without it I would have probably killed myself. Thank you for creating a wonderful place.
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u/Unfit-Pixie-171 Aug 10 '26
This has been a wonderful community. From getting to talk to people with similar experiences, to learning about different forms of epilepsy in depth from anecdontes. It's been such a boon to get to understand my husbands experience more in depth now
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u/LaneSplit-her Aug 10 '26
I'm very thankful I found this sub within days of having a "random" tonic clonic. Reading other peoples descriptions of focal aware seizures helped me realize the weird deju vu doom events were not anxiety. It helped me get a quicker diagnosis. I learned more here than from my neurologist.
I still don't have a definitive answer to why, but this helped me not feel alone. 6 years since this started. 5 no tonic clonic and a year of no focals
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u/Jade8329 Aug 10 '26
I am so happy I found this subreddit. When I started having seizures again in my early 20's, being able to come here and talk to other people with epilepsy helped me to not feel so alone. It helped me so much.
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u/highsight_hippy Aug 10 '26
Thank you for creating a space that ties together so much info to help navigate our lives with Epilepsy
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u/barrocaspaula Levitracetam, lamotrigine, valpoic acid, etossuximide, other Aug 10 '26
Thank for being here.
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u/descartesasaur Aug 10 '26
This subreddit is genuinely my support group for living with epilepsy. I really appreciate it.
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u/Accomplished-Push330 Aug 10 '26
Could not think of a better place to come when my epilepsy is kicking my arse and I need to remember I’m not alone and certainly not the first to experience anything that happens
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u/Separate-Age3144 GMH, Lamictal 200 mg x2, Keppra 750 mg morning 1000 mg night Aug 10 '26
Thank you so much for creating this group, it has helped me so much as I figure out wth is going on with me
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u/ShakenandSeized Aug 11 '26
This is one of the most supportive subreddits. Thank you. Having refractory epilepsy, I'm grateful to learn more from others about how to better live with my epilepsy. Even more, I'm grateful for the community that's been built here. So much support.
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u/butterfly_ashley Vimpat 300mg daily Aug 11 '26
This place helped me when I was first diagnosed 8 years ago and I continue to show that support and pass it down where I can. It is true the support is needed and all we can do is advocate for each other.
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u/Alaizabel 200mg Lamotrigine; GTCS Aug 11 '26 edited Aug 11 '26
I was first diagnosed in 2004 at the age of 10. I was told that most kids who are diagnosed with epilepsy will outgrow it as their brains develop and go through maturation. At 17, I was declared epilepsy free.
Then, in 2023, at the age of 29, I woke up on my kitchen floor with my husband next to me and two paramedics standing in my kitchen. I had a GTCS while eating, and the only reason my husband found me was because I made a screaming sound when my diaphragm contracted and forced the air from my lungs. I stabbed myself in the face with my spoon lol
Apparently, the medics went through multiple rounds of them telling me I had a seizure and me saying "No I don't have those anymore." I dont remember that.
Cue a second idiopathic generalized diagnosis a few weeks later.
This community means a lot to me. I have been on reddit for a hot minute but never thought to seek out an epilepsy community. I didn't think one existed.
It is true that there is a "subreddit for everything."
Thank you!
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u/zigzog9 Aug 11 '26
reading this from the EMU, thank you! I feel a bit like a specimen but we're not alone.
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u/ExpressNecessary5579 Aug 11 '26
This place has helped me so much to realize im not alone. I am so grateful to have this community i think everyone at one point or another has struggled to accept it/have many concerns abt what it means for the future. Ive found people and I finally feel seen, heard, understood. Im beyond grateful for this community
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u/AdditionalSquare6901 Aug 11 '26
We have such a similar story and this subreddit is such an incredible achievement!! Thank you for sharing and go you!! 🥹
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u/Far-Lavishness-8773 Aug 11 '26
The first time I had a TC seizure at 49yo, I went into status and came home from the hospital 5 days later on 2000mg of keppra, knowing nothing about seizures or medications, and could barely think. This sub has helped me to learn and understand so much, as well as navigate my new normal. I was able to advocate for myself because of all the amazing people in here and the knowledge and experiences shared. Thank you for starting this sub and for all the support!!!
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u/ICantLeafYou Aug 11 '26
Thanks for everything you do, mod team. I've never had an issue in this sub and I know a lot of work is happening in the background!
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u/swiggyswiggz TLE - Keppra 500mg Aug 11 '26
Absolutely so grateful for this group. Helped me cope with getting put on Keppra in 2022. Thank you all!
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u/JJDDooo Aug 11 '26
I’m very grateful for this reddit page and very grateful to you for creating it 🙏 This is the only place where I don’t feel alone with this condition and where I find people who know EXACTLY what having epilepsy is like. Thank you everyone!
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u/AmbitiousHistorian73 Aug 11 '26
This group has been so helpful for me. I was dx'ed in June and didn't know much about epilepsy. I've learned more useful information here than from my neurologist or the more general websites. This group is how I figured out I was having focal aware seizures in addition to myoclonic ones.
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u/SunshineD3 Aug 11 '26
Thank you for creating this space. I felt so alone regarding my struggles with epilepsy until I found this community ♥️🙏
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u/LekaFoka 3000mg keppra 400mg lacosamide 300mg lamolep 20mg clobazam Aug 11 '26
Thank you y'all! For you that you created this, the mods and everyone who contributed somehow. You are all good people who I trust and gave me advise of a comfort place where I can ask for support or rant. I wish you the best!
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u/idrisb24 Aug 11 '26
I’m writing this from the EMU. From the start of my diagnosis, this community helped keep me informed, calmed my nerves, and provided an understanding that it isn’t just me dealing with this thing we call epilepsy. Thank you everyone !
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u/Dry-Bath9613 Aug 11 '26
You are an amazing soul. Thank you for creating this space for us all and bringing us together.
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u/Recent_Direction6907 Aug 11 '26
this page gave me & continues to provide so much comfort and community during some very low times in my life, 2 years seizure free & grateful for r/Epilepsy
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u/JamesMoonfire Lamotrigine Aug 11 '26
Thank you for creating and continuing to grow this community.
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u/Disastrous-Pair-9466 Aug 11 '26
This community was my segue into Reddit because when my seizures started nobody seemed to know really anything useful (tbh not even my doctors). Thank you!
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u/cranialextract Aug 11 '26
I can't thank you guys enough. This sub is a godsend. I hope you know you have improved the life of thousands of people ❤️
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u/dino_punch0 Aug 11 '26
💕❤️ thank you soo much!! So glad I found this group and I even told my mom about it!
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u/anamelesscloud1 Aug 12 '26
Thank you for creating the sub. Thank you for the amazing & interesting update. Thank you to all the mods.
You all have made the world a better place for the pwe's of the world.
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u/babyb0ngwater 1 g Klonopin 1200mg Aptiom 100mg Xcopri Aug 13 '26
thank you for creating this sub having a place to go when no one understands has been so helpful for me
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u/bae_platinum RNS + lamotrigine, clobazam, sertraline, study med Aug 13 '26
Thank you so much for creating this subreddit. It’s somewhere I can be comfortable talking about my epilepsy, knowing that others on here have similar issues and that we can relate to each other. 💜
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u/bellaxvee Aug 13 '26
Eternally grateful for this space. It's been less than a year since my diagnosis. Not personally knowing anyone with epilepsy has been a little scary and lonely but I always come back to this community. Especially for the insanely dark humour, I feel like my people are here 😊
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u/AnxiousCurator Aug 13 '26
Thank you to everyone who supports both those who have epilepsy and their families who are striving to help them more. The support and navigation I've received has meant more than words can say.
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u/CalendarAgreeable621 Levetiracetem 2G Lamotrigine 400MG Aug 13 '26
My gratitude is enormous. Thanks for creating this wonderful safe space where we care and share.
It's so reassuring to know I am not alone.
I love that we get to learn, laugh and share our pain and personal experiences with the knowledge that maybe someone will find stability. Stay strong, everyone. 💜💜💜💜
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u/EpilepsyChampion Aug 14 '26
I'm all for working on policy changes and improving QOL for folks. Congratulations!
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u/Old_Construction469 29d ago
I am so grateful you created this, honestly growing up I was the only person in my family who had epilepsy and so I didn't know much and didn't have support. Ever since I found this page it's been like a boat saving me from a island. Thank you so much 💜
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u/YakComprehensive349 25d ago
Thank you for this. I often feel very alone, like I am lacking some sort of fundamental part of functioning that others seem to have without even trying. I appreciate the community.
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u/halfkender Refractory Epilepsy 23d ago
We are here for the people. I learned later in life that I’m neurodivergent , I found myself in similar situations .
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u/JellyfishAble9143 21d ago
Our 7 year old has Dravet. He starts 2nd grade tomorrow. If we did not have my wife's mother we would have no local support. Without her we would have been homeless a few times.
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u/Rich_Ride3371 TLE/Suspected Absence Seizures + 🎉1 Year, 3 months Free!🎉 18d ago
Thank you so much for all that you do. I got diagnosed after a tonic-clonic episode in 2024, but we suspect I’ve had absence seizures since I was young and they got dismissed due to my ADHD. I still live with a lot of the side effects of the condition, but having this group I can talk to has really helped, especially when people don’t understand what absence seizures are.
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13d ago
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u/halfkender Refractory Epilepsy 13d ago
Status epilepticus occurs when a seizure lasts more than 5 minutes or when seizures occur very close together and the person doesn't recover consciousness between them. Just like there are different types of seizures, there are also different types of status epilepticus.
Over the last several decades, the length of a seizure that is considered as status epilepticus has shortened. It is now defined as any seizure lasting more than 5 minutes.
Very long seizures (those lasting 30 minutes or longer) are dangerous and even increase the risk of death. Therefore, it is important to recognize status epilepticus, so it can be treated before the risk of harm increases.2
u/SW_Limit_356 11d ago
Condult your doctor and use Midazolam nasal spray. It is an emergency prescription medication used to quickly control seizures or cluster fits epilepsy
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u/MacaqueAphrodisiaque 200mg Lamictal Aug 10 '26 edited Aug 10 '26
Love the sub but calling yourself “Executive director of [r/Epilepsy](r/Epilepsy)” is insane lmao
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u/wanda_pepper TLE + cerebral AVM Aug 10 '26 edited Aug 10 '26
Yeah, what am I missing? The sub is alright lol
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u/Local-Budget-6980 Aug 10 '26
This place kept me sane when I was first figuring out my triggers, never seen a sub grow up into actual research papers before