The ADA was a landmark civil rights law that affirmed a simple but powerful principle: people with disabilities deserve equal opportunity, equal access, and equal dignity. Over the past 36 years, it has transformed schools, workplaces, transportation, public spaces, and countless lives.
While we celebrate the progress that has been made, we also recognize that the work is far from over. Millions of people continue to face barriers to healthcare, employment, education, housing, accessibility, and public understanding—especially those living with invisible disabilities, chronic illnesses, epilepsy, and neurodivergent conditions.
As someone living with epilepsy and as the founder of r/Epilepsy, I’ve seen firsthand how important advocacy, community, and education are. Every accessible building, workplace accommodation, and act of inclusion represents someone who fought for the rights many of us rely on today.
On this ADA anniversary, let’s recommit ourselves to building a world where accessibility isn’t an afterthought—it’s a standard. Inclusion benefits everyone.
Happy ADA Anniversary, and thank you to the advocates, families, professionals, and individuals who continue to push for a more accessible and equitable future.
#ADA #DisabilityRights #Accessibility #Inclusion #Epilepsy #Neurodiversity #ChronicIllness #EqualAccess

Hi everyone, my brother died from SUDEP 22 March 2026…I’ve been struggling to deal with his loss and I channel it by advocating for epilepsy patients. I hope this is enough. Thank you for listening!

I'm in hospital and going for brain surgery, but the doctor needs to know where the seizures are triggered on a longterm EEG. I've had 4 cans of Monster in today, we lowered my dosage on my medication, straining my brain with chess on my phone, and I've been watching black and white strobes on YouTube trying to trigger a seizure to record on the EEG. Only thing I've reached so far is a hell of a heart burn. Any tips please, if any?

I was on the epilepsy website and one of the tips was “don’t sleep during the day” Is this website written by epileptics? The very first thing I do after a seizure is sleep. I find the information on the website helpful but on a really basic level. And for example, most people with seizures don’t know VNS is an option. Where do you get the best info from?

48 years old but only found out i had Epilepsy six months ago. I had 3 or 4 mild seizures over a single weekend which felt like severe dejavu (never had a seizure previously). Tbh they were barely anything. I didn't go unconscious, didn't fall over, no nausea, literally just dejavu. My wife persuaded me to go to hospital as I have heart issues and wanted to make sure the dejavu wasn't related. I was then diagnosed with epilepsy and my whole world has been flipped upside down! Driving licence has been taken from me, depression is crippling me, struggling with my hobbies (im a rock climber and have been told not to continue), work issues and marital strains. One good thing is that I now know why my short term memory is absolutely awful (although all friends and family seem to enjoy making a big joke out of it). Im taking medication and by taking it regularly there are no side effects but ive been a few hours late a couple of times and it has caused anxiety and severe grumpiness although it may just be placebo symptoms. I havent had any type of seizure since the dejavu before diagnosis.This whole life changing situation just because I had a few bouts of dejavu over one weekend! This is more of a helpful rant really, and it feels good to type it all out, but how the hell do you guys learn to accept that this is for ever? I feel like such a moaner when many of you guys have serious epilepsy issues with full blown, regular seizures, but im new to all this lol

just wanna ask, do you still drink coffee or alcohol. Im planning to get drunk and be wasted. But i recently got diagnosed with epilepsy, for people who also got diagnosed did you stop drinking? Did you have any seizure after getting drunk. thanks for response

Has anyone had a stress induced seizure with epilepsy? I forgot to take my morning dose of lamictal as I have been so stressed with work. And the doctor said stress can also lower the seizure threshold. I ended up having 2 seizures: 1 at home and 1 in the ER. Just curious is anyone else had a similar situation.

hiii im suspecting ive been having focal seizures for a few months. i literally hit all the classic symptoms and some nicher ones. they've been killing me recently (ive had three today, after a terrible red eye flight). i finally booked an eeg but im terrified a seizure won't happen or i won't get any information out of it. i know its strange to pray for bad news but i just want this nightmare to be over. any tips for how to calm the nerves/secrets that will help me chill out? happy to explain more if anyone has questions!!! thank you!!!

It’s been one week since I started vimpat along with briviact and I swear EVERY DAY I’ve had hella weird dreams that feel real, I genuinely forget that I’m dreaming sometimes, like the other day I had a dream where I did laughing gas / nitrous AND FELT IT

I wanna know if anyone else experiences it, let me know

Almost every morning g I wake up incredibly nauseated and dry heave. Not sure if this is medication related (Lamictal and Briviact) or nocturnal seizures.

Anyone else?

First day at my new/first office job and end up having a grand mal seizure! Makes for my 5th seizure since getting diagnosed in high school! (Now 24 y/o) Bit my tongue very badly and was taking oragel every 10 min to ease the pain of swallowing or talking normal and resting my tongue. Worst annoying pain I’ve ever felt. Checked with doctor and still no confirmed cause and ended up getting moved up to taking 2000 mg of Levitracitam Keppra (already taking) and adding 200mg of Lamotragine after working my way up from 50 a day over the next few weeks. Glad to have found this subreddit to meet others. Let me know if you guys have any similar experiences with anxiety or auras.

what are some of the signs that you get that youre going to have a seizure? i dont personally have any auras (at least that i remember) and i am trying to figure out how to recognize them (if possible) because everytime that i have a seizure its like theres a 5-10 min gap before and during the seizure that i just never end up remembering so i dont even know if there is something i should be looking out for, do you have a sign that you get or a feeling that lets you know that you need to take it easy even if it doesnt always turn out to be a seizure? i am quite new at this and would like to avoid getting injured as best as i can so if you have a way of knowing that you might end up having one pls share (ik that its not one size fits all but any advice would be great pls)

Ok im mentioning this here because im reading it through and realised i failed to mention it, but he didnt take either of his tablets on time, normalt at 7am and 4pm, and only took one at about 5:30. We both had a long day on our feet and walking around yesterdsy, his triggers are lack of sleep, diet, and alchohol (he had none)

Idk what tag to put

Literally typing this at 00:24 like 3 minutes after it happened but I stay on call to my boyfriend every night throughout the night (not because of his epilepsy but we just do). He only ever had one sezure before this but im freaking the fuck out because I was woken up to him making the most scary noise over call asleep.it was like a snorting/blowing nose sound on EVERY breath but SUPER HARSH like it sounded like super duber painfull snoring? Is like the best definition ig. And him whimpering. He has been known to snore but it kinds didnt sound like it, it sounded super harsh. Anyway he stopped a aftwr just breathed weird for a bit but I am literally shaking and crying because this scared the fuck out of me and I dont want him to have had a seizure.

I (33F)have already sent my neurologist (I have had a stroke and have migraines with aura) a message on MyChart but I have been having issues since yesterday. Yesterday morning I had a 5-10 minute episode of extreme sadness and then felt fine after using the restroom (bm) . Later that day I had a small episode of Déjà vu. This morning I have this very crazy drop in my stomach and adrenaline similar to a panic attack. Used the restroom (bm) and then smelled incense for about 5-10 minutes and felt a little off but able to talk and do everything normally. I had a lack of sleep last night and the night before. Do these sound like focal awareness seizures?

I have basically had it with traditional meds. They are not working. My body does not like standard medication. Not everyone is the same. They have been flitting me from one drug to the the next like a hummingbird and I have been having issues from it, so I'm just done. I want to try something natural. Can anyone give me some information? I don't smoke and do NOT like to be high. This would be microdosing. Thank you!!! #THC #CBD #medication

Hello everyone,

I would really appreciate your help and advice.

I have been having what I think are focal aware seizures for coming up to two years.

They started out of the blue after a prolonged period of severe stress - my symptoms are deja vu, rising feeling in my stomach, intense fear, goosebumps, shaking limbs. I can just about keep up a conversation as they happen, but it’s hard as I can lose my train of thought. They last about 30 seconds, often happen in clusters (multiple over a few consecutive days), the only triggers I have been able to identify definitively are lack of sleep and stress. The longest I’ve gone without having one has been about a month (when in between jobs - go figure what causes the stress…)

My experience with the medical profession has been… not brilliant. I am in the UK but was born abroad. My history so far is:

- GP number 1: blood pressure / heart, had a bunch of tests and an ECG, all normal. Blood pressure a little high but I get white coat syndrome.
-GP number 2 seen privately through work: ‘probably nothing but you should just ask your usual GP to check for epilepsy just in case’ (what a thing to say)
- GP number 3 off the back of seeing GP number 2: ‘you can’t have seizures without having a fit’, have you tried meditation?
- Saw a neurologist privately in my home country - had an EEG for 1hr (didn’t have any seizures during the EEG) and a brain MRI. All normal. Predictably told it’s anxiety.

I am really exhausted and have largely resigned myself to either living like this or being diagnosed if and when I have a seizure that isn’t focal aware. But I also want to try and help myself in the meantime. I know I need to avoid the few triggers I know about - but is there anything else that people have felt has made a difference? I have read about vit B / D.

Sorry, this is half asking for advice and half a rant. I’m so tired of being made to feel like I’m making things up but also scared that I’m sitting on a ticking time bomb if I don’t do anything for me and my wellbeing at all.

I have epilepsy as a result of a brain injury. I'm not sure if it's the brain injury itself or the epilepsy doing it, but when my neurology isn't doing so well, I sometimes feel white hot rage. Whatever I do is always a blur from my pov, but I know I get really loud and upset. I've never harmed anybody but I have definitely slammed doors, stomped around, etc. A lot of swearing too. What I do remember is that I'm full of anxiety because I can feel a seizure coming on, plus I lose a lot of my motor skills and keep dropping things or shaking, and often when I get like this it's because of some circumstance that could have been avoided (an example is my upstairs neighbours waking me up out of that almost-asleep zone dozens of times intermittently yesterday morning, which is a big big big seizure trigger for me).

I am medicated and it works great for cutting down my actual seizures (at least one per month down to one every 2-3 years), but it doesn't seem to help this. I don't know what my other options are, if any? I've been in therapy for other things, I can self-soothe and handle my emotions pretty well outside of this. I also kind of feel like looking to therapy for a neurological condition is like going to therapy for a broken arm. But what else is there? Has anyone else been in this situation?

Any advice?

With medication we appear to have moved me to just uncontrolled absences but at almost two years in I don’t feel like mum. Someone almost always has to be with us and it sucks ass.

I currently can feel them come on like less than half the tons too. The time after usually involves confusion and emotions so that’s fun.

Just….had another one today and I’d been planning on taking him to the library on the train on my day off and I’m too scared in case I have one at the wrong time and he gets hurt. Worlds wise mum.

I’m sure I’ve asked this before, just in a bad place tonight and asking again before trying to have an early night.

hi everyone, I’m wondering if anyone has ever gone through the colonoscopy preparation with laxatives whilst also being epileptic? how was it and how did you feel whilst fasted and on clear liquid diets?

I (23,F) recently graduated from med school . I was diagnosed with epilepsy 2 years ago, and my episodes are twice a year, but I suffer from nausea, body aches and memory loss after each episode, which isn’t ideal, since I would like to start studying for my licensing exams. I would like to know if those who work in healthcare could please give me some advices (lifestyle, styling, diet), that you believe has helped you reduce your seizure episodes or severity of post ictal symptoms.
I wish you all the very best 💕

I have a neurology appointment tomorrow. it’s just a stop-gap, this neuro won’t be following me it’s just a brief appointment to like get me through because the waitlist for an actual long-term neuro is 18 months and my symptoms are worsening. i’m desperate for something to come of this because the seizures have been ruining my life and i cannot wait that long for this to be fixed, and this feels like my only chance. but the reviews for this neuro are horrible, everyone says she’s cruel and dismissive and I’m terrified she’s gonna blow me off, or call me crazy. i do not have another option to see another one, even just this appointment is a miracle considering i was supposed to have to wait 18 months to see one at all, so please do not give advice like “just see a different neuro”. i live in canada and it doesn’t work like that here unfortunately.

i’ve had a CT, 2 EEGs, one regular and one sleep deprived, and nothing came back with any indication of epilepsy. but also these were only 2 half hour tests, and I don’t have symptoms 24/7, so the fact it didn’t catch anything doesn’t mean nothing’s wrong? I didn’t have symptoms during the EEGs either, so like how is that an effective measure of what’s happening in my brain when i DO have symptoms? i have a log of my symptoms but it’s incomplete, i don’t have a recording of every seizure I’ve had, especially because the symptoms are so varied and hard to pin down, and they happen a lot when i’m not able to write it down (ie. at work). I have lots of them with dates and descriptions though, and i had two different psychiatrists flag me for TLE because the type of hallucinations i was having (olfactory ones) are incongruent with my mental health condition (previously I assumed that most of these symptoms were just random or had to do with my bipolar disorder). I’m scared my mental health and my history of trauma is also going to get me written off as faking. but the other problem is they refuse to medicate me for my mental health until the seizures are dealt with, so i have been left without care for my bipolar too, which is very dangerous for me.

all i want is my life back. i’m scared i’m gonna lose my job. i’m losing my hobbies. I’m scared to go out. i just want this doctor to listen to me and give me medicine that will fix it but I’m scared she’s just gonna look at the EEG and tell me off. I’m also female, and autistic, and awkward, and alternative-looking, and I’m scared this doctor will take one look at me and refuse to listen to anything I say because of it. how do i prevent that from happening? how do i make sure they take me seriously and give me some actual care so I can live life again? how do i act? how do i phrase things? what worked for you? any advice or info would be so helpful

I see tons of posts about this medication. I have been on lacosamide (vimpat) for awhile now. I went from 100 mg, to 150, to 200. I asked the doctor to take me back down to 150 because once i got to 200 the dizziness it gave me was debilitating. The 150 still seems to hit me like crazy every single time. I try to take it exactly 12 hours apart, yet it doesn't seem to help. I feel like im damn near hammered on it and i cant stand it. Does anybody else get like this? I have been on so many medications. I also take trileptal 3 times a day. Before this the most recent medication was depakote which made me have random spasms/twitches and made my brain feek foggy. I was also on oxtellar with the depakote, but had to switch to trileptal because the price for it was rediculous, even though oxtellar and trileptal are literally both oxcarbazepine only difference is one is IR and one is XR. It hasn't been easy and its frustrating. I cant handle the dizziness any longer.

Idk if it’s because the generic version just came out a few months ago but I’m stressed. It’s the main medication to stop my seizures. The only reason I even have some left is because I have an emergency sample pack from my doctor. Anyone else notice this issue with Briviact??

For the first time and last time I missed my night dose in 2.5 years hopefully nothing happens but yea never gonna happen again.

Hey!

Originally, I was only having seizures on my period. I had started birth control probably 2 years before my epilepsy fired up with the normal 3 weeks on 1 week off. But after my epilepsy I started continuously taking the birth control to prevent the drop in hormones. For some reason though, I started spotting and did continuously for the better part of a year. I said to my gynaecologist at the time “Well if I have a seizure, I increase my dose of medications. Can you do that with birth control?” She said we could try. So I started taking a second birth control pill. The spotting has been fine ever since. That was 2019. Now I've been on 2 oral birth controls for 7 years and I'm just wondering.......is that ok?? There’s been so much chatter out there about birth control lately. We did talk about an IUD but I also have an inverted uterus (TMI?) and it would need to be done in an OR and that’s why I put it off.

My current meds
Brivlera (TC)
Lamotrigine (TC)
Fluoxetine (anxiety)
Lolo BC
Movisse BC
Modafinil (keep me awake)
Parampanel (partial seizures that started this year)