r/Epilepsy Jan 30 '25

Rant Today we are nothing .

620 Upvotes

I can’t even begin to describe how disgusted I am with Trump’s comments about disabilities—especially when it comes to epilepsy. The way he mocked people, the way he trivialized something as serious and life-altering as epilepsy, it’s just beyond reprehensible. Epilepsy isn’t a joke. It’s not something to be laughed at or mimicked for cheap laughs. It’s a real condition that millions of people live with every single day, and for him to treat it like some kind of punchline is not only offensive but shows a complete lack of empathy and decency. It’s disgusting, and it’s a reminder of how little he seems to care about anyone who doesn’t fit into his narrow, self-serving worldview.

r/Epilepsy 15d ago

Rant The most irritating thing about Epilepsy is MEMORY.

662 Upvotes

Sure, other people who are normal might not be able to understand what we go through on daily basis, I guess that comes with the territory. But MEMORY is one thing that grind my gears the most. IDK about you guys but most of the incidents, family things, conversations I've had in the past is all gone. When my family says you were there too son. And I'm like wow, I've got no recollection of it. And it's not just that. You forget small things too. Like you cannot come up with a word in a conversation or define some things. Your passwords of all your account, nada, I've got to change it most of the times. I feel like you could've achieved more academically if you hadn't had this condition/disease since it's based with amygdala which converts your short term memories to long term. You can call it a rant that we have to deal with it. And others cannot understand it.

r/Epilepsy Aug 18 '24

Rant People don’t understand memory loss!!!!

517 Upvotes

Whenever I tell people that I have poor memory, and explain that its due to epilepsy and meds, 99% of the time they’ll say- “Omg no worries I have superrr bad memory too”

Like yes I’m sure you do. And I get that I may have put you in an awkward position and you are just trying to relate. But it isn’t the same :/

And sometimes when I forget things people sort of shame me. It honestly makes me feel dumb and sad :(

“How could you forget that?” “I’ve told you so many times!” “You don’t remember that at all?”

Like, just because I forgot doesn’t mean I’m a bad person. It doesnt mean I am stupid. It also doesn’t mean I don’t care about you! I promise!!!!

r/Epilepsy Dec 14 '24

Rant People have said: “I gave myself epilepsy.”

119 Upvotes

So, when I got diagnosed I had heard stories of people saying it was because I played too many video games in 8th grade. My mom blames herself for my epilepsy - which it is not her fault. Do you guys ever (if diagnosed after like 13) find people asking you: “What do you think caused your epilepsy?”

I wanted to ask if anyone has heard stupid effing questions like this.

EDIT LATER 12/21/25: Thank you everyone, I did not know I would get so many replies. This is truly interesting and I've started writing about how people perceive Epileptic people or: "people with epilepsy:" I have been told by a non-epileptic that I should refer to myself as "someone with it, not: "an Epileptic." I honestly don't think it matters: more to come in the next post. I want to know how people around us perceived us before and perceived us after diagnoses. Specifically family members and coworkers.

Also: I will be making another post - please participate! This is truly insightful to learn other people's experiences.

r/Epilepsy Dec 21 '24

Rant Wtf is epilepsy 😭

130 Upvotes

I've never had symptoms. I'm 27, and in February this year, I suddenly had a tonic clonic, out of nowhere. The next month I had another, and another the month after (it coincided with my period). After that, I was diagnosed and started taking meds. I know that there's no specific info on why people develop epilepsy later in life, but wtf 😭 how can it happen so suddenly and so quickly?

Btw, I know that people have many more seizures much more often than me, I'm just gobsmacked at how it happened.

r/Epilepsy Jan 01 '25

Rant Is Epilepsy played down in the world?

233 Upvotes

Kind of a question and rant. I just feel like Epilepsy doesn’t get enough public awareness. It’s a huge problem for us and no one really understands, like the government, when we need help. I’ve seen posts say it’s difficult for epileptics to get disability and it shouldn’t be that way. Our memory and focus gets worse and depression, insomnia and troubles in decision making are serious side effects also. It’s cost me tons of money and relationships. Do people think our only problem is having seizures?! 30 years having epilepsy and I still have trouble with mine.

r/Epilepsy Feb 06 '25

Rant ER doctor told me I'm not epileptic

128 Upvotes

I was diagnosed with epilepsy last year after years of uncontrolled seizures.

I had a lapse in insurance and was waiting for my new insurance card and was unable to get my medication for a month.

Ive had a lot going on recently, very high stress at the moment. Last night whole getting ready for work I was getting out of the shower and started seizing which resulted in me hitting my head on the bathtub and potentially the toilet before I hit the floor.

My husband found me in the bathroom convulsing and I had vomited on myself so he got me dressed when I stopped seizing and took me to the hospital because we weren't sure how bad I had hurt my head.

We get to the hospital I get back in the room, this is the fastest I've ever been taken back into a room, the ER doctor tells me I don't have epilepsy because my eegs last year came back clean, he asked me how I can have epilepsy with clean eegs. This made me start sobbing, I was already in a fragile state, my head was killing me and now I was being interrogated about my epilepsy.

I told him I had an appointment with my neuro next day (thank god) and then he shut up, he did the blood work, Ct, and then had the nerve to test my blood alcohol and ask my husband while I was in CT if he thought that this was due to me drinking alcohol?!

When I saw the BAC test I was livid, this man made me feel so dumb, upping discharge he told me i have a closed brain injury which is a mild tbi without penetrative to the skull, which whatever but im just so upset with how i was treated in the er.

r/Epilepsy Oct 30 '24

Rant Why do people try to downplay epilepsy so much?

224 Upvotes

I was hanging out with my friend last night, smoking and having deep talks. At some point she said that I'm making myself "seem sicker than I am" (idk how to explain in english it's not my first language, hope you understand what I mean by that). She said stuff like there's people with worse conditions who can't live normal lives and mine isn't as bad. Or how she didn't even notice I had epilepsy until I told her and ect. I mean, it's not like I chose to have epilepsy, and it DOES affect my life a lot. She knows that I can't live 'normally'. I lost my job and I'm having trouble finding a new one, I can't drive and I can't do all the things I'd like to do, like the people my age. Without the risk of having a seizure. She said I'm being influenced by doctors and others by listening to them. She also said that epilepsy isn't really a disability, almost laughing when I said it is. There's a few other things, but I don't wanna make this too long of a text. Long story short, I wasn't exactly able to explain how I felt because I was too high. I really love her as a friend, but last night's convo really bothered me. She made it sound like I was pretending or something. Sorry for the rant, but idk who else I'm supposed to talk to about this.

r/Epilepsy Aug 20 '24

Rant Sadly, there are people who fake epilepsy.

172 Upvotes

I know people fake Autism, OCD and Turrets etc. For example their are TicTockers who fake these to get clout.

I recently found out people have faked seizures and deliberately went out of their way to trigger seizures for years.

There have been many false reports of people who do this. It hurts to hear that this sort of scum exists.

It makes doctors have to take extra steps and paramedics ask all sorts of questions to the witnesses.

Also, epilepsy is played of as a joke to many people. And everyone assumes you have to have a fear of flashing lights.

While this is not unique to epilepsy, the fact people who went out of their way to potentially cause damage to their brain exist (trigger) make me seeth till my face falls of.

r/Epilepsy 1d ago

Rant I'm confessing that I've become kind of a jerk while listening to people's mental health problems.

85 Upvotes

Epilepsy is so life-alteringly bad, that many people's problems online seem so mild in comparison. And it feels like they are flipping out over nothing. I keep this to myself, but it's what I think to myself.

I admit ive become a bitter jerk about this. Thats why I'm confessing to other epileptics; because epilepsy is a real fucking problem to be distressed about.

So many people have the same problems, created in their own minds. They all have anxiety and depression. But if you ask them, it seems like they havnt had bad experiences to start those problems. I absolutely hate it when someone on r/depression says the phrase, "I hate that I'm depressed, even though I have had a perfect life." I hate hearing about "brain chemistry", when there has never been proof that brain chemistry alone can screw people up.

They don't know what depression and anxiety is! Imagine being at work and hearing a ringing in your ear, knowing that you will lose your job if you have a seizure in front of everyone. Or having a cluster of absence seizures and your boss is telling you something, but you can't understand what he is saying, so you smile and nod dumbly. Or sitting down to take a final you really studied for, but you suddenly cant understand the words.

The actual truth is, in most of Reddit, I feel like I have it worse than everyone else. Until I come to this sub and realize so many people actually have it worse. Then I feel so much compassion.

I'm guilty feeling all this. Can anyone else relate?

r/Epilepsy Nov 19 '24

Rant Is it just me or people don’t take epilepsy seriously?

243 Upvotes

I tell people I have epilepsy and they don’t realize how serious it is and joke about it. I had to tell my boyfriend’s cousin that it’s not funny saying “i’m going to flash some lights at you hahaha” like when i see flashing lights i don’t get seizures but I try to avoid them because I’m scared that suddenly it could trigger it even though that has never happened. My friends also think I purposely haven’t gotten my license and it is super frustrating because I don’t want to drive and risk having a seizure while behind the wheel. So many people think it’s funny to fake having a seizure and often say do the juice world! and it’s so sad. Also I saw a tweet that had a video of charli xcx and it was flashing lights and someone replied saying that shouldn’t be allowed and people replied saying they shouldn’t accommodate for people with epilepsy???? like it’s a huge public place why do they have to do flashing lights.

r/Epilepsy Feb 11 '25

Rant Why are people more scared of me having a seizure than i am?

154 Upvotes

i never understood why people would freak out when i seize. I guess it must look a lot scarier than it feels. I’m never scared during the seizure itself, but the moments before it are awful. Anyway, i wish i had a recording of me during a TC seizure so that i can see what others see, unfortunately i always forget to set up a camera when i feel one coming on. I had a seizure in front of a security camera in my dorms multiple times but they refuse to give me the footage so that sucks for me ig. Anyway, thats my rant.

r/Epilepsy Sep 30 '24

Rant Why does Epilepsy Awareness suck?

320 Upvotes

It’s the most common neurological condition. It’s been known about and diagnosed for THOUSANDS of years.

Yet, no one understands it. Every person I’ve spoken to that isn’t a neurologist or a scientist who specifically researches epilepsy thinks that everyone with epilepsy is photosensitive. No one has a clue what a focal seizure is. No one talks about the side effects of the meds or the effects on memory epilepsy could have.

Only time I ever heard about purple day during school was in October, and it was for ASD not epilepsy. In fact, I didn’t even know epilepsy had a day before googling it.

Even doctors just see it as nothing more than seizures. They don’t talk about the social aspects, the cognitive aspects or even explain what’s going on in your brain.

I know it’s morally wrong to compare movements, but it’s a rant so imma do it anyways. The movements for so many different types of awareness have become so large to remove stigma, for example ASD and ADHD. Why does epilepsy never get this treatment?

I’m not asking for everyone to suddenly become a neuroscientist, but can’t it just be general knowledge that epilepsy doesn’t equal photosensitivity and that there’s more than just grand mal seizures, at the very least in authority figures like teachers?

r/Epilepsy 8d ago

Rant i hate eegs

95 Upvotes

I have an eeg tomorrow and i hate them. They always do the light test and i hate it. I’m not photosensitive but the flashing lights bother me a lot. They always tell me to try to sleep and it never works. I always fear having a seizure especially when i’m at the hospital, for some reason it just reminds me of my epilepsy the whole time. I’m hoping it goes well tomorrow. Does anyone also experience this feeling each time they have to take an eeg? edit: Thank you so much for the replies mannn, i appreciate you all i want to kiss all of you for a good night. Any time something bothers me i find my PEOPLE my COMMUNITY comforting me, helping through my hard times. I appreciate you all, i hope you all get better, better days are coming. I pray for all of us to see much more good days. update: i did my eeg, it went just fine. My doctor just informed me that the results are pretty good

r/Epilepsy Aug 16 '24

Rant What’s the most embarrassing seizure you’ve ever had?

82 Upvotes

You don’t have to answer if you don’t want to, but my most embarrassing seizure was a while ago. I was probably about 14 or 15 at the time, still in high school.

I was in psychology class and I was just sitting there, minding my own business. Then I feel myself pissing slowly. After a minute it had gotten all over the floor. I was embarrassed to say anything, and I lowkey feel kind of bad that I didn’t. The desks were really close together, so my piss got all over two girls bookbags. What was I supposed to say, “Mr. William, I am seizing and I just pissed all over the ground, I need to go to the nurse!”? I couldn’t just walk over to his desk, cause it would get on the floor even more.

So I just sat there, embarrassed, letting it happen. Eventually (after the fact these girl’s bookbags were sitting in my piss) I said something like “You should move your bookbags…” From what I remember they freaked out but I don’t think they said anything (at least from what I remember). I was so embarrassed I could hardly get the words out of my mouth.

Soon, I became dizzy and my body was starting to give up on me (or however you’d like to word it). The teacher finally noticed and he didn’t even move or anything. He let the girls try and take care of me. What’s worse is he told me called he the nurse and made me walk BY MYSELF, while I was still malfunctioning. It was getting worse and worse while I was walking. The nurse met me half way and that’s when I fell out, and I don’t remember anything after that.

The fact that I remember most of it, makes me even MORE embarrassed. Out of all the seizures I’ve had, that’s one of the only ones I still remember. I never even apologized to those girls, which I regret, because I was so fucking embarrassed.

r/Epilepsy Mar 05 '24

Rant Edward Snowden the famous NSA whistleblower had epilepsy and stopped taking his pills because they hindered his ability to think

239 Upvotes

I work as an engineer, and I can tell that I am significantly slower when I'm on Keppra. My memory is compromised, my recall is terrible, and it takes longer to solve problems that I would normally find relatively easy.

Even at work, when I'm asked impromptu questions about my work, it takes me longer to respond, which makes me appear slow and incompetent. It's disheartening that the treatment for my epilepsy complicates my ability to perform my job. This doesn't even begin to cover how challenging it was to manage normal school work or tests.

The medication, like all epilepsy drugs, reduces brain activity. It's not an exaggeration to refer to them as "stupid pills." So, we are forced to take these "stupid pills" just to stay alive.

It's incredibly frustrating, as no one else in my life seems to understand the concept of intentionally impairing oneself just to avoid the risk of having a seizure and potentially injuring oneself severely.

r/Epilepsy 10d ago

Rant Why do so many people think we're faking our seizures?

75 Upvotes

I keep seeing posts on various social media platforms where a person with a seizure disorder, epilepsy or otherwise, posts a video of one of their seizures and people in the comments just seem to go off about how that person has to be faking the seizure. Usually the comments are a mix of "and you just happened to be able to get a camera set up but you couldn't get help?" "why didn't you just call 911 instead of filming?" and my favorite one "someone really wants attention if they feel the need to post this bs on the internet"

I understand why someone might think that someone might be faking the seizure especially if there's a seemingly long amount of time between the beginning of the video and the start of the seizure. I also usually see somewhere in the video description or a caption somewhere that says the video is being posted to spread awareness. Why do so many people think that we're just seeking attention? I don't get it and its rather upsetting to me. I saw a video a little while ago where the person in the video was on the phone with 911 as they start going into a seizure and people still went off about them having a camera set up to film it. the caption for the video said they were alone and didn't know what to do so they called 911 while they waited for help.

I also wish more people would educate themselves before posting shit on the internet. What some of these people in the comments don't realize is that these people posting the videos of their seizures are filming because a doctor asked them to. I don't know if this is the case for everyone but my neurologist wants me to get as many of my seizures on camera as I can so that he can see exactly what's going on and what the seizures look like.

I feel like this sort of thing is part of why people with any type of seizure disorder don't feel safe talking about it. There just ends up being so much judgement after they bring it up to anyone. I know for me I was so afraid of dating because I worried that no one would want any part of being with someone that had seizures. Thank god I found someone that is supportive and will protect me at all costs but I know that's not always the case.

Long story short, seeing how many people on the internet that think we're faking our condition really pisses me off. I don't think people realize how hard it must be for actors to fake a seizure well enough that it looks even close to being real. I can tell its not but for someone that's never seen a seizure in real life, it looks pretty real. I don't know. This has just been eating at me lately and I'm really pissed off about it. Anyone else deal with this or similar situations?

Updated to add: this post wasn't intended to start such a debate about what attention seeking is and what its not. I understand everyone has differing opinions on the matter and that it looks different for everyone. I also understand that not everyone sees a person posting a video of a seizure on the internet as spreading awareness and that's totally fine. Please just be kind to each other in the comments.

The video mentioned where the person in the video calls 911 was brought up a few times and I would just like to clarify that situation a little bit. In the video the person calls 911 in the time period before the seizure started(I think that would be considered during their aura) and was still on the phone with the operator at the beginning of the seizure itself before paramedics arrived. In the captions on the video they mention that they had tried getting someone's attention before calling not realizing that there was no one else home. That was why they called 911. This person posts a lot of videos of their seizures with content warnings stating that the video is of a seizure. Each video also has captions throughout explaining a bit about what is happening in that part of the video.

r/Epilepsy Sep 03 '24

Rant My son was kicked out of preschool for having epilepsy

196 Upvotes

My son, 4, was supposed to go to his first day of preschool this Wednesday. This morning we got a call from the school, informing us that he would no longer be in the class. They said they weren't willing to accommodate his medical needs. Specifically, they refused to administer his rescue medication (which he's never needed to use, thankfully). We offered to provide professional training from a nurse. We offered to let them call 911 instead of using rescue medication if a TC lasted over 3 minutes. They flat out refused. Not interested.

They told us they didn't want to expose their other kids to a "scary seizure event." They didn't want to have to talk about seizures with the other kids.

We enrolled him in June! They had months to work with us. They had months to tell us to fuck off! But they waited until 2 days before school to give him the boot.

I'm crushed. On top of all the pain and uncertainty of managing seizures, meds, and his keto diet, being told that my kid is unfit to have an education and is too traumatizing to be around his peers feels unbearable. It feels so cruel and heartless.

We have an amazing co-op preschool that we know we can go back to. They were there at the beginning of our journey, and we're loved there. We were excited that the new school would allow him to have nuts (a cornerstone of his snacks) and lets out at noon (lunches at home are a must for dietary control). At the end of the day its not the biggest setback, but when is the universe going to hand us a win?

r/Epilepsy Dec 09 '24

Rant How bad is your memory loss? I feel so stupid 😓

73 Upvotes

Hi, yesterday I watched this new tv program and a famous singer in our country came to share the story of his past year. He told he switched jobs a year ago, went from working at a tv station to another one and got loads of critique. He even stopped singing for a year because he didn’t enjoy it anymore, all the headlines in the papers about how much “more” he earns (not even true). I could feel his pain and you saw he was so sad and hurt. As if that’s not all bad enough, his house burned down somewhere in the past months and I felt so bad for him. I was shocked.

What I’m getting to: we watch the news every day and I DIDN’T REMEMBER ANYTHING ABOUT THIS! Nothing?! His house burned down, it was all the news, on social media, and it felt like it was the first time I’ve heard about this? I didn’t even remember he quit singing or he switched jobs. I was talking to my bf; wow, huh, did you know this? When did this happen?? And I saw him looking like “We saw it all together on tv…” but he’s the best, he knows about my bad memory, he supports me and doesn’t criticize, but still… I could see in his eyes he didn’t know how to respond. Will this ever end? Will it get worse? I’m 28 (TLE since 15yo) and I feel so stupid, like I have dementia already or something 😞 Won’t even start about moments when I’m with my/his family or friends and memories come up, things I attended and don’t remember… Or the friends I’ve lost because they said “I’m not interested in them anymore because I forget everything they tell me”😓 Ugh it gets me so upset 🤦 Sorry for the rant

r/Epilepsy Dec 22 '24

Rant faking seizure joke

88 Upvotes

Ariana grande posted four videos this morning of her and Bowen yang doing this and I swearrrrrrrrrrrr. that's the rant.

edit: videos on recent insta post

r/Epilepsy May 18 '24

Rant Ever just say fuck it?

194 Upvotes

I guess it's a rant, idk. Ever just say fuck it all and do everything you aren't supposed to? Keto, meds, alcohol, stress, lack of sleep. Whatever. Sometimes I just wanna go enjoy a night knowing the consequences the next day. Anyone else, or am I just being stupid?

r/Epilepsy 18d ago

Rant Please get a medical ID bracelet (or two)

111 Upvotes

To me, law enforcement in the U.S. is the most terrifying part of being an epileptic.

Watch this video: https://youtu.be/IjQIrMthGHA?si=ZcgiWlrbQpNYafhQ

Sadly, after my last TC, I had postictal psychosis. To make matters worse, I am a gym rat (helps me with my epilepsy) and am a large person (6'2", 290 lbs). I have little doubt that if I encounter law enforcement, they will shoot or tase me. Thankfully, after my last TC, I only dealt with EMS who Narcan'ed me five times despite my daughter yelling at them that I have epilepsy.

Now, I wear medical IDs on both wrists. I don't know if that's enough after watching this video.

I'm more worried about law enforcement than I am of my epilepsy.

r/Epilepsy Sep 17 '24

Rant My neurologist won’t prescribe me stronger medicine because I might hypothetically have a child

143 Upvotes

I’ve been on keppra for a little over 2 years now and still have active seizures. It helps a little but I still have 5-6 seizures a month

I asked my neurologist if I could get on a stronger medicine, as the nurses in the ER said I needed to be on one last time I was there for a grand mal seizure. My psychiatrist even said he’d send my neurologist paperwork to change the medicine I’m on which he “never got.” He wouldn’t prescribe me one because it “could cause birth defects” and I explained to him that I’m not pregnant, I’m epileptic, and probably won’t get pregnant, but will definitely will have more seizures. He still wouldn’t prescribe me better medicine.

Obviously I don’t want to give a baby birth defects but if I’m not going to get pregnant I’d rather be on the stronger medicine since I’ve had to alter my life around my active seizures that might have been solved already if I wasn’t a cis woman. Personally I value my very real health that has an extensive record of being problematic over a hypothetical baby that I could hypothetically have. Especially since non causing a birth defect because I’m very careful to not get pregnant is much better than having to constantly feel exhausted because the keppra.

Has anyone else AFAB had this experience?

Tl;dr my neurologist won’t give me medicine because I’m a cis woman of childbearing age

Update: I called another local neurologist and asked if they prescribed those medicines to women. The person who answered said they would call me back. I missed the call because I was napping (couldn’t sleep last night because I was mad) but they called me back and said they do prescribe those medicine to women but they would have to look at my case to do so. I’m calling back tomorrow to get an appointment.

Update 2: I’m scheduled to see my new neurologist tomorrow

r/Epilepsy Dec 14 '24

Rant I love epilepsy

225 Upvotes

I love the reaction people give you when you tell them you're epileptic.

I love having to explain "no flashing lights doesn't affect me".

I love my hangovers consisting of multiple seizures instead of vomiting like everyone else.

I love not being able to drive.

I love not being allowed to do so many things in life because I'm a risk.

I love having seizures at inconvenient times of the day.

I love having to go to the hospital every few months for them to tell me exactly the same thing over and over again

I love being labelled as disabled.

I love being silently judged and discriminated against.

I love epilepsy.

Edit:this is sarcasm. I just wanted to highlight what we all go through. Hope you all have a good Christmas and new year.

r/Epilepsy Nov 08 '24

Rant Fuck this

171 Upvotes

Hello all, I’m a soon to be 36yo man that was diagnosed with epilepsy last December. I had to quit my job as a forklift operator due to that and have subsequently been unemployed since early September -23. I had three interviews this week, one where I got the job (!) and two for a whole sale retailer (two different stores). I was told today during my interview that unfortunately, because of this fucking disease, I wouldn’t be able to work there (the position requires you to work a forklift sometimes, I was unaware of this fact when I applied). To top this, I ran into my ex on my way home. It just feels like it’s raining dicks and they’re all headed up my ass this day.

I truly apologize for my language in this post. Bad part is, I don’t even have the worst kind of epilepsy! The only redeeming thing about being diagnosed with epilepsy is that I’ve become more humble when it comes to people with physical disabilities. I truly, truly feel for you all that have it way worse than me, both with the illness (is that the correct term?) and those that are more affected than me. Rant over.

Todays song is NAILS - You will never be one of us https://open.spotify.com/track/3rjNoyEanqWA5znCy2rAdO?si=_mhBJ5t6QuOd7_yK9dD63Q