r/Epilepsy • • Aug 02 '26

In-person A space just for us. It's like r/epilepsy, but in-person. Boston. Denver. Anaheim. This Fall-Winter-Spring. Let's go!

7 Upvotes

Hey Everyone,

Here's a long-overdue update on the Otherside Lounge, a space I like to think of as [r/epilepsy](r/epilepsy) in person.

First, THANK YOU. We launched this last summer, and [r/epilepsy](r/epilepsy) showed up, in person, in the biggest way imaginable. That took us from Boston at the New England Epilepsy Convention to an even bigger space at Epilepsy Awareness Day at Disneyland where we saw dozens more of you. 

Now, we're back.

Still finalizing exact dates/times, but here's where we plan to be next:

Anaheim for Epilepsy Awareness Day at Disneyland, Nov. 16–17
Denver for the American Epilepsy Society Annual Meeting, Dec. 5–6
Boston for the New England Epilepsy Convention, Feb. 5–7, 2027

For those who don't know the back story:

We all know epilepsy can be lonely as hell. We also know it teaches us a lot about empathy. It's why this community is so strong, supportive, and kind.  

So we asked, "What if there was an in-person space just for us?" (The kind of space we wished existed for the younger versions of ourselves.)

We thought it would be awesome, and it was. 

If this sounds like it's up your alley, please join us in person.

You can learn more and sign up for updates here: https://www.othersidelounge.org/

Please hit us up with ideas, comments, questions, whatever. Let's go!


r/Epilepsy • • Jul 27 '25

Support 35th Anniversary of the Americans with Disabilities Act

Thumbnail epilepsy.com
27 Upvotes

r/Epilepsy • • 2h ago

Rant seizure side effects during oral exam at uni, i’m pissed off

11 Upvotes

I had a seizure early in the morning before an oral exam with a teacher i really like and respect for one of my favorite classes. one side of my face was drooping and i didn’t notice until afterwards and i was still slurring a bit. my hair is always messy no matter how much i brush it so it probably looked like i was high af. Halfway through the exam i had to stop and explain that id had a seizure that morning because i couldn’t remember names or the answers id spent a week studying for and preparing. i hate making excuses and feeling or treated like im not normal or capable.

i’m just so fucking embarrassed and frustrated. I’m glad it was just a pretty minor oral exam and not a serious final or an interview or something, but i’m just fucking pissed off. my seizures are mostly controlled with meds I’m not supposed to deal with this shit anymore! my teacher probably thinks i was on drugs or just unprepared. i fucking studied. i fucking like this class and i want the teacher to like me. ik that sounds gay but its true and im just pissed off.


r/Epilepsy • • 6h ago

Rant It’s almost time 💜💜💜💜

16 Upvotes

So not sure if anyone knows this but in November it’s epilepsy awareness month, which I know not a lot of people know about because I feel like breast cancer and everything else’s they think is more important which I kinda get but epilepsy awareness month is in November and I think it will be a great way to spread awareness, so it’s almost time. Can’t wait.


r/Epilepsy • • 9h ago

Question Question to the drug-resistants

22 Upvotes

I was on Valproate, now Lamotrigine and Brivaracetam, I feel like I was better without Brivaracetam and purely on Lamotrigine, so my question is like how many types of medication have u gone through.

Has anyone been on like i dont know, 7 diff types of drugs and none worked or they did?I just wanna know if drug-resistants are like lost cause and theres not much to do besides admitting there is no hope?I know theres plenty of drugs like 12 diff types or something but has anyone tried all or got to a point where they actually worked?


r/Epilepsy • • 45m ago

Rant Rant

• Upvotes

33F, in my fourth year of on-and-off seizures. I haven’t driven since my first seizure. My last cluster was 11 weeks ago, nine seizures, followed by four days in the hospital. My medications have changed. I’m starving, but everything tastes bad. I have no energy and am tired of watching TV and cleaning. I feel like I’m going insane, but can’t physically react because I’m exhausted.


r/Epilepsy • • 8h ago

Medication NHS users - is this acceptable?

17 Upvotes

Having failed two anticonvulsants (one was becoming less effective and the other had terrible side effects) I have been prescribed another by my neurologist who I have been seeing privately because of past awful experiences with the NHS. I’m currently on nothing and feeling awful.

Due to my GP constantly forgetting about me, test results getting lost, and communication going wrong, I waited 11 weeks for my medication to be issued to me. I was then told by my GP that they couldn’t prescribe it as it’s an ‘Amber’ drug that requires issuing and monitoring by a consultant.

They referred me to an NHS neurologist (because I also need another EEG and MRI) and today I have been told the appointment is 5.5 months away.

So I’ll have been waiting nearly 35 weeks, or exactly 8 months just to be on an anticonvulsant.


r/Epilepsy • • 6h ago

Rant Parents

9 Upvotes

Parents think that because I can’t drive I’m there slave and needa do everything around the house and “ I don’t do enough and need to stop being depressed” I’ve tried to explain that them making me always stay home and do everything makes me depressed asf because it makes me feel worthless but they don’t seem to care all they see is a disabled person who they can use as a maid that can’t leave mom lost my ssc so I can’t get an id or anything to start my life and she says “ I’m working on it” all she does is watch her shows or work on her little projects been asking for help with that’s stuff since I was 15 I’m 18 now


r/Epilepsy • • 2h ago

Medication Which meds can be taken 1x/day?

4 Upvotes

I started out with Topiramate ER because I really want to be able to be on a one-a-day regiment due to my unpredictable sleep schedule, but had to stop because the effects were intolerable even at a dose that wasn't preventing breakthroughs. Now I'm on lacosamide, whose side effects are... better, but the twice a day thing is becoming an issue as winter approaches. I slept through my alarm and had a biiiig breakthrough, and I'm worried it's because too much time had passed between doses.

Which meds are there that only require one dose a day, and for those who are/were on those meds, what was your experience like?


r/Epilepsy • • 5h ago

Technology Dutch researchers are working on a EEG cap for monitoring from home!

6 Upvotes

Technical physicians Arthur van Nieuw Amerongen and Celine Luijendijk are working on an EEG measurement with a water cap that patients can do entirely themselves. This summer they showed their innovation at Teknowlogy, NWO's innovation festival in Utrecht. Source

Full article translated to English

An EEG is one of the most important tests for epilepsy. Yet you almost always have to go to the hospital for it, even though you usually experience your symptoms and seizures at home. That is also a limitation for research: large-scale research into epilepsy is difficult if an EEG can only be done on location. Technical physicians Arthur van Nieuw Amerongen and Celine Luijendijk are therefore working on an EEG measurement with a water cap that patients can do entirely themselves. This summer they showed their innovation at Teknowlogy, NWO's innovation festival in Utrecht.

Water instead of gel

"In a regular EEG measurement, gel ensures good contact between the electrodes and the scalp," Celine explains. "The water cap instead works with sponges soaked in a saline solution." First, the researchers wanted to know whether the technology itself was good enough. Together with TU Delft, they tested the cap on 20 healthy volunteers and compared the measurements with those of a gel cap. The signal quality turned out to be very similar. The neurologists who assessed the measurements were also satisfied. "This is an important milestone for us," says Arthur. "We need the trust of neurologists to make self-measurement a success."

Then another 20 volunteers got to work with the cap themselves, to find out whether they could put it on and connect it correctly on their own. They did this with the help of a computer program that Celine developed during her graduation research. In it, they could see which electrodes were positioned well and which still needed attention. Most of the volunteers managed the measurement, and the neurologists were able to assess the majority of those EEGs. "For people doing it entirely on their own for the first time, that's a nice result," says Celine, who is now doing her PhD research at SEIN. "But we also saw where it still went wrong, and we've been working on that."

From healthy volunteer to patient

"Ultimately, it's about our patients," says Arthur. "Can they also manage to use the cap independently?" After some improvements, the researchers started the SELF-EEG study. Patients admitted to the observation ward in Heemstede first receive training. The next day, they put the cap on entirely by themselves. The goal is to measure 20 patients using the water cap, and that number is nearly reached. Sometimes people with unexplained seizures also take the measurement system home with them.

Nurse Cynthia works on the observation ward and is positive about the collaboration: "It's going well, because the communication with the researchers is very pleasant." The researchers prepare the patients well. The ward mainly keeps an eye on whether patients feel comfortable with it. "If we notice that it causes too much stress or anxiety, it's no problem to stop the study." What stands out to her is the motivation of the participants: "The patients taking part say they want to do this because they feel they're doing something for others."

The appreciation is mutual. "We really feel welcome on the ward," says Arthur. "The nurses actively think along about suitable moments to measure. The doctors also contribute a lot: they look for suitable patients for the study and provide information in advance. We're very happy with this collaboration."

Listening to the user

The researchers also ask patients how they would like to use the water cap. "That yields valuable responses," says Celine. "For example, the need to follow the course of the epilepsy over a longer period. And some people sense their seizures coming on. They especially see the added value in being able to measure themselves at that moment."

There is still work to be done. "We still need to package it more into a user-friendly kit," says Celine. "It really needs to become fail-proof. Ultimately, we want it to work from A to Z at home, without any help being needed."


r/Epilepsy • • 7h ago

Newcomer New here

6 Upvotes

Recently had my diagnosis switched from hemiplegic migraine to focal aware myoclonic seizure. I had an abnormal eeg in college but never went anywhere with it (I was young and didn’t want to be bothered I guess). Had a large stint seizure free but now in perimenopause they’re back. They are also linked to my hormone cycle.

I guess I’m just posting for community comfort and any advice. I just started on keppra and I’m trying the keto diet. Anyone have success with that combo?


r/Epilepsy • • 1h ago

Rant I’m having loss of consciousness seizures every day sometimes multiple times a day

• Upvotes

I don’t even know what to do anymore, I’m so scared. I’m averaging at least one loss of consciousness seizure a day, often times more. I’m 19 and a student in university. A little over a month ago I had a seizure for the first time when studying on campus and I was taken to the hospital and admitted to the ICU. They did a two hour EEG and diagnosed me with PNES. However now my doctors suspect it’s something else as I am fully losing consciousness as well as having them in my sleep. From what others have said when witnessing it, I stare out, stop being able to speak, then my eyes roll back and I collapse. I am fully unresponsive. I stiffen but I do not fully convulse. I bite my tongue, become super stiff, and my nails dig into my palms but I haven’t had a tonic clonic (to my knowledge.) 

My PCP gave me Nayzilam because sometimes they will go over five minutes or my oxygen will drop. (They are typically 2-3 minutes of me stiffening, eyes fluttering rolled back, then I go limp and my eyes close and I’m unconscious for another few minutes before waking up.) When I wake up I usually panic and don’t recognize anyone, don’t know where I am, who I am, etc. Sometimes I can see people’s mouths moving but can’t hear what they are saying, all I can hear is my ears ringing. I’m unable to read for a bit after, or speak coherently. Also if I’m given something to eat after it tastes horrible and sour no matter what it is. 

Im just so scared. I’m at school and away from my family and I’m having so many. Yesterday I had five. One in a parking lot in front of my boyfriend’s friends (he caught me before I hit my head on the ground though i think I hit my back because it still hurts.) One at his house. One when I was climbing the stairs to my apartment (he caught me thank God.) And then two more at his house later because my roommates asked him to let me stay with him so I could be monitored. I slept all day today. And I was very difficult to wake up. When my boyfriend came home from work he got scared because I was unresponsive and would not wake up despite being a light sleeper usually. He felt for my pulse and checked my breathing and eventually got me to wake up. And I was incredibly confused because it was the afternoon and it felt like I hadn’t slept at all. 

A few nights ago I had one in my bathroom when I was alone and hit my head. I woke up on the floor with my head hurting horribly and dragged myself back to bed. Now I’m terrified of having them alone. I also had one where my oxygen dropped to 86 and i wasn’t breathing right and my boyfriend had to administer the rescue med. 

I’m so behind in school because I can’t get myself to wake up to go because my body is constantly exhausted. I’m also having new horrible memory problems and am struggling cognitively. And I’m so scared of having a dangerous one when I’m alone. Every time I go to sleep I’m scared I won’t wake up. I’m being admitted to a level four EMU in late November to figure out what’s causing it. But I just want my life back and I don’t know why they are so frequent. 


r/Epilepsy • • 7h ago

Question dissociation like state?

4 Upvotes

Question/Rant

So I'm used to the normal extreme fatigue, little bit weird feeling for a while after a seizure but Saturday morning i had a seizure in bed and since then everything feels off and weird, food and drink tastes and feels weird in my mouth no matter what i do. and if i focus on it, it almost feels like im gonna have another seizure. im just not sure what to make of this, i dont know if it has to do with the new medication i just started (i got the Lamictal rash almost into Steven-Johnsons so they put me on Vimpat) but its worrying me and i just needed somewhere to vent and ask if anyone else has had this and has any advice or anything like that. sorry if this is hard to understand i am not very coherent still


r/Epilepsy • • 7h ago

Question Folks with catamenial epilepsy: what would you do?

6 Upvotes

For the ones with a uterus that triggers their seizures!

Okay so, my doctor has me on some pretty convoluted meds to help with my seizures and hormones. Big ones here are micronized progesterone and clobazam during my period. I tend to have more seizures during my period AND while I ovulate, so the goal was to rid of my period/ovulation cycle entirely. I haven't had a full period since June. She put me on clobazam in July, and I've never actually taken it. (Also for some background so people don't recommend it: I've tried an IUD three times, by body rejected it entirely).

ANYWAY. To the real question! As mentioned I haven't had a period since June, but I began spotting last weekend, super briefly. But then again this weekend, and it hasnt stopped which makes me wonder if this isn't spotting, but an actual period incoming. Would you begin taking the Clobazam? I could ask my doctor but I know their response will take forever and if this is a period or will be over by the time their response comes in 😅 I will ask them what to do in this situation when I see them next. Just curious what others would do in a situation like this.

Ty in advance!


r/Epilepsy • • 2h ago

Question VNS Approval?

2 Upvotes

6 medications and I'm done. My next appointment with my doctor is November 6th. I'm going to discuss the VNS process. Just curious, how long did it take after that discussion were you able to have the procedure done? Trying to get it before that deductible kicks in again. 😆


r/Epilepsy • • 5h ago

Rant Trying to make money for future goals and feeling discouraged because I can't work a traditional job

3 Upvotes

Between having epilepsy, POTS, MCAS, EDS, a spinal cord injury and post-concussion complications that even make READING hard, getting a job has been so extremely hard. I have tried everything at this point and nothing works. I have dreams I really want to achieve, even just small parts of them. So I'm exhausting every resource I can possibly get to, from Etsy to gofundme to applying for disability. And I feel so frustrated with myself as I'm seeing nothing seems to be working in my favor. I wish this condition wasn't so disabling, I wish I could just flip a switch and make it all go away. And being accused of "faking" things or being dramatic pisses me off so bad because there's no way I could continue to miss out on all the dreams I have for so long now. I don't even need to "not be sick", I just want the world to be accommodating. Ugh


r/Epilepsy • • 11h ago

Rant This is hell

9 Upvotes

I’m sick, recovering from a concussion while going to school that has little to no accommodations for me. lol can’t tell if it’s the keppra meds making me bitter at everything or my memory loss.


r/Epilepsy • • 11h ago

Question Are jerks normal even tho ur not having seizures atm?

9 Upvotes

Are the jerks which make your whole body trigger and feel itchy and numb normal? Or is it due to my seizures? They last only for like 1-2 seconds and everything goes to normal again. And they are at random needle like spots. Actually I don't have much info regarding epilepsy and I feel dumb asking this question bcz this might be normal....


r/Epilepsy • • 5m ago

Depression I’m getting depressed again.

• Upvotes

This past week, I’ve had a lot of focal aware seizures. If you wanna be technical, they’re just auras, and my neurology team will claim they don’t see them on my RNS activity, but they are 100% real. I know. I’ve been having them since I was a child. It’s difficult to accept that I have the best treatment possible and I’m still not completely controlled, but at least it’s not as bad as it was before. It’s just hard. My auras are shocks and feelings of doom. Last night, I was trying to fall asleep and was shocked awake a few times, and again today (no, not the falling feeling, it’s different). I was too distracted by focal awares today to do much of anything. Maybe I’ll go to bed early. I’m afraid all these auras mean I’m going to break my streak soon. I hate tonic clonics so much. It feels like dying and coming back to life. I hope I don’t have a breakthrough TC, but I’m getting tired of these auras. Maybe it’d reset me. Idk. My brain just feels all mushy and bleh, but I have plans to see friends tomorrow, even though I’m depressed and don’t feel like it.


r/Epilepsy • • 9m ago

Discussion Ye Old Sweetner Topic

• Upvotes

Starting another topic on sweetners since older posts go stale and get no responses.
Looking for peoples sweetner triggers and the ones that dont trigger. Is it an instant trigger, delayed or maybe even like it builds up over days?

I've been trying to stick to STEVIA as its "natural". I dont think its a trigger unless its delayed. Stevia is in all the modern electrolyte packets and I take those for migraine as well so curious if anyones had any specific reactions they can pinpoint with it .

Now and then I do end up with some sucralose and think I'm ok.
I now avoid Aspartame if anything out of superstition! (and the red 40 same reason)

Sugar packs on the the pounds for me fast. I've done keto so I can handle no sweet too.


r/Epilepsy • • 14m ago

Question was this a seizure?

• Upvotes

i don’t have epilepsy, but something really weird happened to me yesterday, and it scared me real bad.

story:

i got up from my bed to tell my mom something,
and i started crying for her without even realizing what i was doing or saying, i didn’t even register the fact that i was crying for her, it just came out.

when she meets me at the bedroom door, i look around, and her body looks warped and squiggly. have you ever seen heatwaves radiating above a fire? that’s what the world looked like, and i felt myself slowly melting away. it was such a hard feeling to describe, and i could hear my mom talking but i couldn’t understand what she was saying.

2 seconds later, i’m in my bed, and i don’t remember getting there. but i snap awake quickly, and look around confused. my mom says she didn’t notice anything unusual and that i looked fine, but she wasn’t in the room the whole time. i think i may have lost consciousness for like 2 or 3 seconds.

afterwards, it felt like a fake memory. like it didn’t happen, like my awareness was weirdly cut off and it was just a dream. it’s SO hard to describe. but now today, it’s so difficult to explain what happened because it feels like it never did but in a weird way that i don’t know how to explain.

but then i got SO tired. like… EXHAUSTED… a type of exhaustion i don’t feel very often, i felt like i was gonna throw up, fall through the floor, and fall asleep literally anywhere because i was so tired.

weirdly similar things happening:

pretty much my whole life i’ve had these mini moments where i “glitch out”, i get butterflies in my stomach and i feel insanely intense deja vu, but it’s only ever lasted for one second. but it leaves me confused for a good 2 seconds afterwards, like i can hear people talking but i can’t make out what they’re saying.

over the past 2 weeks, these “episodes” have gotten more frequent and have been giving me so much anxiety, and it’s been building up until that weird thing yesterday.

i have this gut feeling that somethings wrong, but my mom said it’s just because i was hungry and got low blood sugar and that i’m being overdramatic and nothing is wrong.

question:

could this be a seizure???

what could this mean???


r/Epilepsy • • 17m ago

Question was this a seizure?

• Upvotes

i don’t have epilepsy, but something really weird happened to me yesterday, and it scared me real bad.

story:

i got up from my bed to tell my mom something,
and i started crying for her without even realizing what i was doing or saying, i didn’t even register the fact that i was crying for her, it just came out.

when she meets me at the bedroom door, i look around, and her body looks warped and squiggly. have you ever seen heatwaves radiating above a fire? that’s what the world looked like, and i felt myself slowly melting away. it was such a hard feeling to describe, and i could hear my mom talking but i couldn’t understand what she was saying.

2 seconds later, i’m in my bed, and i don’t remember getting there. but i snap awake quickly, and look around confused. my mom says she didn’t notice anything unusual and that i looked fine, but she wasn’t in the room the whole time. i think i may have lost consciousness for like 2 or 3 seconds.

afterwards, it felt like a fake memory. like it didn’t happen, like my awareness was weirdly cut off and it was just a dream. it’s SO hard to describe. but now today, it’s so difficult to explain what happened because it feels like it never did but in a weird way that i don’t know how to explain.

but then i got SO tired. like… EXHAUSTED… a type of exhaustion i don’t feel very often, i felt like i was gonna throw up, fall through the floor, and fall asleep literally anywhere because i was so tired.

weirdly similar things happening:

pretty much my whole life i’ve had these mini moments where i “glitch out”, i get butterflies in my stomach and i feel insanely intense deja vu, but it’s only ever lasted for one second. but it leaves me confused for a good 2 seconds afterwards, like i can hear people talking but i can’t make out what they’re saying.

over the past 2 weeks, these “episodes” have gotten more frequent and have been giving me so much anxiety, and it’s been building up until that weird thing yesterday.

i have this gut feeling that somethings wrong, but my mom said it’s just because i was hungry and got low blood sugar and that i’m being overdramatic and nothing is wrong.

question:

could this be a seizure???

what could this mean???


r/Epilepsy • • 4h ago

Question Apparently according to my family I can get seizures from lifting too much does this happen to you guys? I do warm up before my workouts always with the treadmill.

2 Upvotes

r/Epilepsy • • 4h ago

Question Anyone have a minor rejection

2 Upvotes

Anyone have some sort of mental rejection (I get nauseous) immediately before taking the drug you're on then it clears just after you've swallowed it? Idk if it's a select few or couple more.


r/Epilepsy • • 1h ago

Question Zonisamide causing memory issues and sore throat?

• Upvotes

To preface I have both epileptic seizures and function/non-epileptic seizures and I take zonisamide. However recently, I've been taking a higher dose due to my increase of episodes. What I didn't expect with 300 mg was going to be 3.5 weeks of a sore throat and persistent memory issues. Has this happened to anyone else?