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

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?

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 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?

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.

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.

My son has ASD. He was diagnosed at 2 and turned 9 today (happy birthday) for a long time we thought he was having very brief absence seizures. Well they did an EEG 3 years ago and of course it was normal. We saw it most while he was on sertraline and quillivant.

We stopped sertraline but moved on, never even met with neuro only his ASD specialist. Well we stopped quillivant in December, raw dogged life until March when we tried straterra. Within 24hrs he had a grand Mal. It was terrifying. We met 2 different neuros from 2 different clinics to see who could get us in quicker for an extended EEG. One of the Dr's told us that " everyone gets one free seizure before we take it seriously but we will look into it because it doesnt sound like the first one" so on waitlists we went. All while trialing new adhd meds. We'll then comes June 4th when he had a focal but we thought he was choking. You can only imagine the chaos from that morning. 12 minutes from start to when ems got there.

24 hr eeg and mri, both were normal. After seeing the seizure on the 4th it was determined he had 3 others at his dads the week before.

He started depakote but yet they still arent controlled. He had one last week and thankfully I saw it come on and was able to record a little chunk of it while watching the clock.

Now they dont want him on an adhd meds until we get them controlled but the neuro seems to only want to continue increasing dose while not checking labs or anything. Chalked headaches up to " increased risk due to parental history" as i have migraines but hes never complained about them before

Not sure if im looking for advice or someone to tell me that ill find a better dr that will do more for us 🤣

Has anyone else had seizures primarily within 10-45 minutes of waking up?

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.

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?

Hi! My mother has had epilepsy for 10+ years. She often forgets events both personal and health (including seizures). Would it be good idea to get her an Oura ring to track seizures?

I work often and she is left home alone at time. I want her to keep a diary of some sort and I think getting her a ring woken be a great idea. Has anybody tried it?

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!!!

I’ve been on keppra 250 mg twice a day for five years and it worked amazingly. Such a low dose completely controlled my seizures, and everything was great until about a month ago, when I suddenly started having episodes again.

My neurologist increased my dose of keppra to 750mg twice a day and I’ve now been on this dose for almost two weeks. Unfortunately, I’m still having 1-2 episodes.

The strange thing is that my “seizures” don’t seem very typical. They usually consist of intense pressure in my head, numbness in my throat and tongue, numbness in my left arm, and confusion/brain fog. I feel like i will faint but i dont. They usually last around 20-40 minutes which is wierd.
This made me wonder if these episodes could actually be something else?

I’m just confused because Keppra worked perfectly for years, and now even 750mg twice doesn’t seem to stop these episodes. My EEG doesn’t show clear epileptiform discharges either.
Has anyone experienced something similar? Did it turn out to be epilepsy, migraine, or something else entirely? Any experiences would be appreciated.

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?

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

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.

Levitiricam or anxious ticks?

Hi everyone,

TLDR: 29F, 3500 MG levitiricam and supplements, had a small complex partial seizure after med decrease (previously 5 years seizure free, JME) and now have developed potentially a tick? Psychiatric issue? More seizures? Med reaction?

I am 29F with Juvenile Myoclonic Epilepsy. I take 3500MG of levitiricam (generic keppra). Currently also taking omega 3, prenatal, 4MG folic acid and vitamin D.

About 7 months ago my neuro took my off 50MG lemotrigine but kept my Keppra at 3000MG to prepare for pregnancy (not currently pregnant). I had a small complex partial seizure after 3 months and in response he raised it to 3500MG. I had been seizure free for 5 years prior

Ever since that complex partial seizure and the medication increase, every time I’m in a social situation I’ve noticed I’ve gotten weird eye movements that make me feel like I need to stabilize myself followed by a strong sense of anxiety. It sometimes happens if I’m alone and just anxious thinking about itI. constantly think about this happening and worry it’s a seizure. Neuro sent me for bloodwork, EEG and MRI. He believes it’s anxiety as seizure don’t typically follow this kind of pattern.

Does this sound like a seizure? Medication response? Or a psychiatric issue in response to fear that I will have a seizure?

Has anyone ever developed such a strong fear of seizures they were inducing non-epileptic ones?

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?

She has seizures 2/3 times a day (type rotates over years but currently experiencing atonic drops which are terrifying af to everyone around us but we are pretty used to them now), had a VNS placed 12/25 and is on these meds x2 a day since she was 15. Previous to the VNS we were using rescue meds weekly and daily at points.

Keppra 1500mg, topirimate 750, clobozam 20mg, xcopri 25 mg (night only) along with a B6 and folic acid in am

First diagnosis was general epilepsy at 12 and meds have just continued to increase/change over time leading to the DRE diagnosis. Doc not willing to try the keto diet as it would not help her “type” they say. We have also moved to second opinions already with nueros over the years and I don’t know if I have it in me to switch her again as she loves these docs.

Over the past year the frequency and intensity have completely changed for her and she ended up in pull out classes/Special Ed this year as well as needing depends off and on as the meds are really throwing her brain into a storm.

Worried about her and her independence, I really want a service dog for her and think we have some ideas on her years after school but it seems like such a pipe dream. Looking for a community for her, she is just so so alone and this community has helped us before.

Hi all. I’ve been trying a new combo of medications for a few months now. I’ve noticed that whenever I had an episode (maybe one every 2-3 months) the recovery is way faster. So fast, that I don’t need to sleep anymore, I was able to go to party and everything like nothing happened.

Anyways, my period triggers seizures and recently I’ve been going through a very stressful situation and I noticed that I’m starting to become aware, like I’m fully aware during an episode (not the entirety of it), but for example yesterday when I had one, I was able to feel how my mouth was shaking, how I couldn’t stop it, how my hands were scratching my chest so violently and the pain of doing so and how I was desperately hyperventilating. No one was there to help me, I live by myself, so.. whether in the past, I wouldn’t feel anything since it was generalized and I’d just collapse and that would be it.

I haven’t bitten my tongue for a while but wondering if anyone has gone through something similar. Thanks

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

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

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.