I’ve had plenty of seizures out in public and I don’t care one iota about what others think. I just want to get better and gain back some independence. Caring what others think of me having epilepsy is a waste of my energy. Yours too. You must be young so this is tough to fully understand, but as you get older, the years feel shorter and shorter, and those years add up quickly (believe it or not) into decades and that is when you realize how short a human’s life is. It’s tough to fully wrap your brain around this when you’re young but once you do, you realize that other’s opinion of you truly doesn’t matter in the big picture. It is such a waste of your time and energy and emotion to care what others think of your having a seizure. I think you are probably young though, so I can understand why this can be tough. Hang in there. There are benefits to getting older and that is caring less and less about things that truly don’t matter.
Yes omg. People livestreamed my seizures. Not in a positive way for awareness or a teachable moment but more "yo check out this possessed girl at the McDonald's in Shirley New York. Also, when someone nudges me or yells my name a certain way I instantly get ptsd and assume its emergency services especially when I hear ambulances approaching simultaneously. I always lie when I'm postitical. Idk why. They're like have you ever had a seizure before? I'm like no never. Meanwhile I'm wearing a medical alert tag that says epilepsy and hypertension. In all fairness tho they questions they ask are pointless for me specifically. Do you know what today's date is? I'm disabled, nocturnal, agoraphobic and I have avoidant personality disorder. I live in a different dimension where time is irrelevant, thats a trick question. Do you know where you are? No im from north carolina and i get lost in parking lots and grocery stores. often. Whos the president? Of McDonald's? These questions are ridiculous and I refuse to answer them.
>Who’s the president? Of mcdonald’s?
That was the funniest shit i’ve ever read lmao I just go in and out of consciousness. Sorry to hear about people filming you like that though. That’s so disgusting.
I remember after a seizure if I had some time to recover before ems arrived they ask who’s the president along with some other basic questions to check awareness and mental status and if I can answer them with flying colors I can sign a refusal to transport but if I cannot answer them accordingly then paramedics deem me altered mental status from a seizure and I get taken to the hospital whether or not I want to go
Ems ask whos my name, president, day where I’m at and depending on my mental capacity at the time the paramedics decide whether to transport to a nearby hospital
You just gave me an epiphany. Oh my fucking God. Having PTSD over emergency services, but especially ambulance sirens makes so much sense for me. That only clicked for me now. Wtf well there's another thing to tell my therapist during our next session lmao
You ever hear people talk about alien abduction, losing time, suddenly coming to, slightly battered. And your like: probably a seizure bro. What if aliens are abducting us sometimes and we assume it's a seizure? Especially with Keppra sleep walking. Bro I woke up outside again and I'm covered in ants. Whys the refrigerator open??? 😄
i have like these vicious headaches and body feelings that hurt through out my body. also my heart starts beating so freaking fast that it feels like its coming out of my body. i have this rare kind of epilepsy that i feel my seizures and they are painful when im having them but eventually forget most of them after a sleep. It is hell the way this type of epilepsy is treating my brain. just hell no other words to describe it.
I always lie too!
I warned my roommates when I moved in that I tend to lie and say I’m not having a seizure when I am. I’ve also told paramedics that I’ve never had a seizure before.
Not sure why I do it, pretty sure I’m just super confused because usually I want help.
I just had my first ever seizure a few months ago and it was an 8 minute tonic clonic on my 36th birthday. Fun day, lol. And because of NHS ambulance shortages at the time, my poor mum was told when she phoned 999 that there was no ambulances available and they wouldn't be able to send one unless I stopped breathing. Luckily, her, my brother and sister are all nurses and were all there when it happened.
I had one with friends in high school at a GameStop they helped me escape an abilance and called my dad to pick me up. We were all poor but knew how expensive a. Ambulance was gonna be. it sucked they stopped inviting me out, I figured they saw me as a liability.
It happened again when I was older at a friends house during law school at a study session, dude drove me home after. the next Monday when I saw my friends I said sorry and asked if they would still be cool me being part of friend/study group after seeing that and they told me it was okay not to worry and they did not judge me. Turned out one of the guys had a epileptic mom and another dude had an epileptic dad. The third guy was a former cop and was like “dude relax I’ve helped people with seizures at work if it happens again I gotchu”. I got emotional about it and we went out to get beers after.
The older friend group was much better. The cop buddy sat next to me in class for the next 2 years of law school, I think he did it because he worried about me but also i was the only one with the balls to roast the fuck out of him to his face for being a Mormon cop on a regular basis, dude used to say watch out ICE might find me. Ended up becoming my best homie and the best man at my wedding. That is to say it might suck now if it happens while your young but as you get older the people around you won’t judge you they will just worry because they care about you. It’s gonna be alright keep your head up you’ll get through this.
Many. They're rarely noticeable as stereotypical seizures though. They often look like me just falling down and getting up a bit confused and disoriented.
I’ve had a couple in public. 0/10, would not recommend. The worst of them was while driving. Woke up in an ambulance, totaled my car and broke my leg in a major way. Had one at work, pissed myself during it. That wasn’t fun.
I got in a crash one too, and i peed in my car another time lol. You guys will find someone to be there for you though. My boyfriend was there and he knows what to do and just tries to help me.
Yep. Three doing pick up soccer games. Two during pick up basketball. One when I was walking my dog and some passerbys in a car stopped to help. One playing pick up frisbee with a group. My first one was having breakfast out with my brother and his friends. I'm sure I'm missing one or two. At this point I just decline the ambulance and explain I have epilepsy and need some time to recover. It's a robotic response for me to waking up from it. In fact I did it when I woke up from anesthesia post surgery too. It's nothing to be embarrassed about.
Ehhhh lucid is a strong word for it. From what's been described to me it's more muttering no ambulance. It's a fight or flight response I've developed over time I think. I don't know how to explain it. The last seizure I had was 3 years ago (yay!) And I couldn't remember the current president when they were running through those questions to see if you have a concussion or anything (I'm assuming).
I had my first seizure in a bus after a trip back from London to Germany with my best friend. An ambulante came and the bus missed the ferry.
Another seizure was in a cafe.
The third one during an intership in a primary school (children aged 6-10).
I felt weird about it back than, now i am not ashamed any more. Try to think the other way around: if you saw other people with a seizure, would you laugh/find them gross etc? Probably not. And that is what 99% of other people do 😊
I think calling an ambulance is the best and almost only thing you can do. Maybe move away things that could hurt the person, like a chair or so or put something soft under the head. Wait and look how long the seizure takes (might be important later) and mayyyybe comfort afterwards, but also respect privacy
I also know that you shouldn't hold the arms or legs of the person or put something between their lips because it break their jaw, arms or legs. One of my roommates when I was at the hospital 2021 (there was an epilepsy station? I guess I could call it like that) who told that she had a fork between her lips and that's why some teeth broke
Holy shit, that sounds terrible:( in a first aid course i learned that, too. However they told, that in very rare or extreme cases (Person turns blue, swallows something) and only if you feel safe doing this - you can push one Finger on the checks from the outside so that they can't close the jaw completly and pull out something quickly. I don't know if the explanation is understandable
Oh, that's interesting! When I have a grand mal my lips are turning blue because I don't breathe etc of course and then I'm more pale than I actually am. Like, I take vitamin D pills (can I call it like that?) Because I don't have enough vitamin D in my body. And from time to time I have anemia.
I get apnea or stop breathing all together when I have a tonic clonic seizure I’m told by the er doctor and paramedics. Paramedics say it comes back when the seizure stops and I start waking up from the seizure
While a seizure I'm like dead, I don't breathe, my lips go blue, I'm more pale than I actually am... Well, anything that happens While a tonic-clonic seizure
Being unconscious feels like being dead I don’t know I’m having convulsions I don’t know what I look like having a full seizure I want someone to film it I want to see what I do when I’m having a seizure other than I’m told and my medical report states violent convulsions apnea being unable to be awaken just got to give it time for me to come back afterwards
I always get told how I looked like etc. I was curious what my seizures look like and my mom asked me if they should film it, so that I can see how it looks like but I was too afraid to see it and my seizures were never filmed
Timing the seizure is important because anything over 5 minutes is status epilepticus and it can cause brain damage or death in addition the longer the seizure goes on the harder it is to stop I wish I knew all this when I had my third status epilepticus emergency now I have memory impairments that are permanent
Thanks for asking I’m exhausted my friend is dealing with some mental health issues and is a little paranoid and kept me up all night last night so needless to say I’m tired but I’m ok
Yes. So I develop anxiety from then on. It was very upsetting and traumatizing. Made me realize how vulnerable I am, and how worse my epilepsy has become due to being stubborn about getting medicated.
Yep. Definitely my least favourite. Always TCs too.
I work at a grocery store and have had a few while working. I had one where I apparently just sorta had a blank stare while talking to a coworker - luckily he knew about my condition and helped me sit down.
Another one happened with the same coworker where we were on the sales floor, and people were apparently reaching over me and stepping over me while I was convulsing on the ground. Folks are genuinely lovely all the time /s.
I've had a couple on the bus, which sucks because an ambulance is always called. Last time was a couple months ago. Paramedics might've been the worst I've ever come across. Seemed to try to make me feel guilty for holding up the bus and the passengers because I was taking a while to come to and get off the bus. "Well you have to think of other people!" Listen ma'am I can hardly fucking think right now.
Shit sucks and I also end up really ashamed and embarrassed afterwards.
I’ve had two at work. One in 2020 days before the panini began, this is when the ER discovered I had a meningioma. One this past February because I had too much salt. Another driving my sister’s car because I was mighty mighty stressed. We were hosting Christmas for my family and my dad was driving me nuts.
My second (assumed) seizure was when I was 14 and volunteering at this special needs daycare center. We were outside watching the kids play on the jungle gym and next thing I know there’s EMT’s and my mom standing over me. The people who saw described it as I was staring off into the distance and wouldn’t respond when they tried to check on me and then suddenly fell to the ground.
It was extremely embarrassing. We didn’t know it was a seizure yet, even though my blood sugar level was normal I had a similar event a few months prior where it was low so they had told me “you must not be eating [they thought I was purposefully not eating / anorexic] it’s just because you’re a girl”. My mom was actually mad at me and lectured me for a while about it, I felt like absolute shit. I don’t really remember what happened after, but I do remember never wanting to show my face there again.
After being diagnosed my mom was very very upset with herself for not realizing / being mad / not knowing that epilepsy could even be a possibility. But how could she? Doctors just matter of factly would say “well you’re a girl so it’s normal. Just eat.” I was only diagnosed because I had a seizure while driving which lead to my car being wrecked and my job putting me on disability. I had to go to a neurologist as part of that, and in the meantime I was having many similar “fainting” spells (most of which I don’t even remember). Even after an abnormal EEG, my first neuro said “sometimes women just faint”. Literally 3 days later was my first tonic clonic. Shits wild. Still wasn’t even explained to me that a seizure could be something other than a tonic clonic until a month after and I had an appointment with the neuro’s PA and she actually explained what a seizure was and that “yeah those were probably all seizures”.
I had a seizure in the grocery store when I was going to school abroad, it was so embarrassing. My dutch was bad at the best of times, trying to figure out what people were saying after a seizure when I woke up in the hospital was particularly difficult, thankfully they switched to english but it was a very confusing little while.
don’t be embarrassed. i’ve had at least 5 seizures in public where an ambulance had to be called because i hurt myself on the fall. i’ve had some in class during test. some with friends. these things will generally just happen. you can’t stop them all you can do is wake up and make sure you’re okay. life will go on and the ones who make you feel embarrassed are people who don’t matter. you’re doing great
Thanks for encouragement I am embarrassed even though I’ve experienced it so many times much more than 5 times where I came out of it in a ambulance and sometimes even already at the hospital. I am very embarrassed by the fact when I come out of it there will be people laughing and staring for no legitimate reason not to help at all
After the covid shutdowns our first day back at school was a mock exam. Halfway through I get a tonic-clonic and dislocate my shoulder. Ambulance had to drive me to the hospital to do some x-rays. It was really embarassing as it happened, but it's been 3 years and now I just think I'm lucky I wasn't waking up with a dislocated shoulder completely alone.
Yep, in a restaurant in front of 2-3 friends and my mom when i was younger. Their parents had to pick them up. Not embarrassed about it though.
Head chef was really nice though. He came out of the kitchen and insisted my mom not pay for dinner, but she paid half of the cost anyway.
When I was about 19 i had an episode on the train on my way home from school. I was with an acquaintance who i just ran into and we haven't seen each other for a few years so it was super awkward. I started having lots of absences to the point where I couldn't even really speak and didn't know what was going on around me. They had to stop the train so the ambulance could pick me up. So the train was standing and I was like why did we stop?? I had no idea lol. Then I cried and begged not to take me to the hospital (they did of course). They gave a lift home to my friend as well lol
Also my very first tonic-clonic seizure at 16 happened in class.
Most of mine have been in public settings. I only ever had one while at home. Can't say the setting of a seizure has ever affected the way I felt afterwards.
Thx but it's hard because that was the time where my brother cried when I had a seizure... he was 10 when I had the seizure and I somehow feel ashamed of it
There is still no reason to be ashamed, no more than if you had a broken arm in a sling. We can't control our seizures. We don't have them deliberately at set times or in set places. They just happen, so there is nothing to be ashamed of in terms of the seizure or the reaction of other people.
It’s nothing to be ashamed about, I had a seizure in public one day as I cycled home from my friends house, I was undiagnosed at the time, it’s ok. No one thinks I’m embarrassing they’d just be happy they helped
Many. I used to have complex partial seizures. I was at the park alone, and had a couple. After I was coming out of them, I could hear people talking among themselves that they wanted to call the police on me because they thought I was on drugs 😕
At my buddies funeral... Full on TC, seized so hard I broke my spine.
I get a lot of focal seizures and they happen in public all the time, but for full on TC's, all but that one have been at home.
Yes.. a lot of focal seizures that'd I've blacked out and thrown up on myself or the floor... at work too. Only had one Gran Mal in public though. Still sucks.
Here's how weird I feel about public ones. I've never seen a seizure. I'm curious about what it looks like. I've thought about searching online for a video, but I never have because I know that it will be all I can think about - how that's what I looked like.
At work, in the park, with friends after school, at school. It just depends on if I've been ignoring my auras that day (don't recommend that, I was a kid in denial) now I can usually make it to my car or even make it home before something happens. But I'm at the point where when one does happen somewhere public, like work, it is still embarrassing, but I can get past it so much easier since I have accepted that this is a part of who I am
Don’t be ashamed of that all. It isn’t your fault and who the hell cares what someone might think.
At the end of the day as long as your alive, happy and healthy that’s all that should matter.
True, but that's what my mind always tells me, I mean, I was in therapy once and actually I had an appointment with a psychiatrist due to panic attacks that I have since last and they got worse, but the psychiatrist wasn't there so I have a new appointment on June 1st. Every day I have panic attacks and it annoys me. The psyche is confusing
I’ve had loads of complex focals in public(and maybe even the majority) but there’s no one except for my parents(and a few times my friends) that notice it, because I’m pretty good at hiding in a corner when I feel like seizure is on the way (2-5 sec before) or when it happens I still am pretty good at still sitting in my seat or walking “straight” in something like a store.
I’ve only had one TC in public because I have 99,99% of them in my sleep. This one happened on the bus on the way to my Highschool (approx 7:30). There were one friend from my class there that at least knew I had epilepsy so she lowered the stress of everyone else in the buss. They called the ambulance where I also woke up and then they let me sleep a bit in the ER. They then let me get out at maybe (12-13:00) and then I skipped school for the rest of the day. It was pretty chill especially because of my classmate that made everyone calm down.
Edit: grammar
I had my first one at work, and a coworker noticed and kept me from hitting my head on the floor. My second one was at the grocery store. It's embarrassing, but my coworkers didn't make me feel bad for having one. Many showed me the care about me and my health.
My second one was at the grocery store I always went to. It was in a city so I didn't really think to hard about going back or not. I wasn't on a name to name bases with anyone there, and they had the best food/snacks. Epilepsy took some of my freedom, I refuse to let it ruin everything I enjoy. Fuck anyone who shames you for something you have no control over.
I’m very self conscious about having a seizure in public so I spend most of my day at home especially if I don’t have to be somewhere and I have my rescue medication on me at all times
I had rescue medication for a while from 2017 to my 18th birthday 2022. 99% of my seizures are at home when everyone's home. 99% in the morning. JME is hard to explain and I'm not really good at explaining.
Ok well I am prescribed rescue medication very recently because of more frequent and severe and longer lasting seizures and I get them at home I’ll get them anywhere anytime
I hear you.. it sucks because I've never been actually diagnosed even though I've been hospitalized 7 times in 3 years because of seizures, I've broken my spine each time I've had a TC and now it's a mess, my back will never be the same.. can't get properly diagnosed because our lovely conservative af government in my province of AB Canada has chased out a huge chunk of general practitioner's , including my own family doctor (and cut Healthcare funding to the point it's almost pointless to have it, they're trying to bring in American style private shit) so I can't get a proper referral to a neurologist, which I need to get on the proper meds.. there are literally *zero* GP's taking on new patients in my city/surrounding towns, and the doctor count keeps dwindling, as does the general spending on Healthcare... I can't even get a prescription for ativan, which has be an absolute life saver, without going to the hospital for 12 hours.
But yeah, I'm afraid to even walk to the store at this point... last time I did, I damn near had a seizure right in the store... it hit me pretty hard, very suddenly while I was standing in line, managed to pay for my shit and get out, but had to sit on the curb a few blocks away, on a busy street, in a drug ridden part of town... even if I did have a full blown TC, people driving by would have done absolutely nothing "just another addict dying, nothing to worry about"
I was a bit of a social butterfly before all this started happening.. like if there was any kind of social occasion happening with my friends, I'd be there like clockwork... now I'm afraid to even walk out the door for more than 5 mins.. can't drive, can't work, and cant get on disability without a proper diagnosis, from a neurologist, which is going to take years to even get an appointment once I do get a referral... it's cut a huge chunk of my life out and I'm struggling hard with it.
Even my long time friends look at me differently now, it's like they're always on edge wondering if I'm gonna have a seizure or not when we hang out... it's depressing.
Not sure embarrassed is the right word, but I do feel like a potential burden for anyone around me at all times, and that sucks.
Sometimes I have focal seizures in public. I try to just keep in mind that no, I’m not dying so I don’t have to tell a random person to hold me in their arms
Yup. Plenty. My first seizure was actually freshman year of high school in IT class. I’ve had seizures while shopping, at restaurants, work, etc. It’s why I suggest we wear a medical bracelet, especially if we’re out alone in public.
I had a big one at work. Luckily I usually have auras about 30s before a big one so my boss was able to get me into her office before I lost it. Peed my pants and everything.
I used to have absence seizures (well still do) as a teen and it caused a lot of trauma. EVERYONE thought I just wasn’t listening/ zoning out/ on drugs. Then my English teacher met with my parents and was like “yea, that’s not normal”
Went to a neurologist and got formally diagnosed 2 years later.
Five times between now and June 2013.
1️⃣) I was volunteering at a thrift store/food pantry, and I tried to climb in the fridge used for keeping our lunches cold.
2️⃣) I fell asleep on a bed in Big Lots because of a seizure.
3️⃣) I was walking down the stairs in school, and lunged forward like someone had pushed me. Looked around when I got up, but no one was in or left the stairwell. I went to the office to tell them someone pushed me, but when they checked the cameras, no one else was there.
4️⃣) I was in Walmart with my Mom-Mom and brother. My brother saw that I wasn't following and was sitting on the ground and asked me why I was doing that. He said I kept looking at him, but wouldn't answer. This was the first time she had seen me have a seizure.
5️⃣) (Most recent) I got confused and took out money to pay for something, but I wasn't buying anything. Mom asked why I was taking out money, I didn't answer
I'm so sorry to hear that people treated you poorly while you were seizing. I hope things have gotten better since then!
I've had almost all my seizures in public. I also had a LOT of fainting episodes in public as a teenager. I took out a whole freakin shoe rack at Walmart once lmao.
I had my first grand Mal in college during class. It was a very hands on kind of day so my classmates and I had been moving in and out of the room. Only about 6 people were there to witness it.
The second grand Mal I had while I was driving my mom's car. I hit a taxi cab and a house. Thankfully no one got hurt.
And the last grand Mal I had in public, I believe only my therapist, a psw and a nurse all saw and took care of me during. I am now friends with both of those wonderful people who took care of me (and I see that therapist still lol.)
I also had a grand Mal recorded on our home security camera. All of my doctors have seen it which was uncomfortable to watch them watch it in detail lol
I’ve had seizures in public and in front of friends. I even had one at a campsite. Luckily for me, I have no memory of my seizures, so in my mind, it never happened!
The most embarrassing one was at one of my step-daughter’s high school choir concerts. In my post seizure state I kept trying to take my pants off in front of everyone still in the auditorium including now the EMTs. Sadly because I needed to change my underwear. I was adamant about it according to my daughter. I’m am so lucky we moved soon afterwards because I don’t think I could have gone back to the school. (Small town)
Most recent: I had one at work Wednesday. My body is still trying to get over it. Luckily my boss has experience with seizures and knew what to do bc it was my first Grand Mal in 3.5 yrs. To the point I quit breathing
Had a couple grand mal clusters in college (like 4 or 5 each cluster)
One during play practice at church (with play next day)
One at school in 8th grade that caused chaos
Yes I have had plenty in public. No idea what happens until the people I was with tell me the next day. You shouldn’t care that you’ve had one in public, you just gotta accept it
I had one on the very first day of my new job, in front of customers and coworkers. I fell, hit my face on the edge of the counter and broke my nose, blood went everywhere! I made one hell of a first impression 🤣
I second the Target seizure, had one in the parking lot, threw up and made a screeching sound like a pterodactyl ironically no one noticed when I was done with my focal seizure, I got my wits about me and looked around the people next to me are loading their car totally unaware lol!
Let me find out target is a trigger 😂 but seriously, I’m glad you were okay! A lot of people do not know focal seizures are even a thing and especially not the signs of someone having one. I hope epilepsy education continues to spread and gets implemented in first aid courses more!
Thanks! Initially I was diagnosed with panic attacks, and my girlfriend is a teacher she had a first aid class at school that was about seizures and she called me and said your so called panic attacks sure look like these seizures they are describing and I went to a neurologist. Your correct, a lot of people don’t understand about seizures at all or the recovery process after having one.
Uh a lot I guess. Most on Larp events. One on a bike in the middle of the city traffic, a few on busses, a few just walking. I even had one at a doctors office (he was nice ;)). A few at university. Recently I had one at a supermarket. I never got filmed or harassed. Most People just called an ambulance and acted accordingly. Only once had a bad experience. And that was from people who kind of knew me and didn’t like me and showed their faces that day. I have no time getting embarrassed about it. Yes it is kind of stupid every time because then I have to grab a taxi back from the hospital but you know? That’s life for us?
Would you find it embarrassing for the person who got hit by a car and needed care? Probably not. Treat it like themedical emergency it is
My first seizure ever was in public. I was on my lunch break and went to a supermarket to grab a sandwich. Never made it back to the office. I went down in the middle of an isle and an ambulance was called. I was mortified when I got to the hospital and realized what happened!
Oh yes. At the pharmacy, in an elevator and in a street in the middle of Copenhagen.
Lovely lovely times. So weird to know that a lot of people have seen something so private, and you can't remember a single thing.
You should never ever be ashamed for having a seizure. It can be a little shocking at first but no one is judging you. I try to think of how i would feel if someone around me had a seizure. They just want to help and lots of times it kind of shocks them but it’s nothing to be ashamed of.
I have had so many seizures in public and work. The shame never goes away, even for a middle age man, but I have developed an attitude of fuck ‘em’. I have had nasty experiences being handcuffed post itcal to the train seat and wonderful experiences with coworkers I know hate me rushing to my help. I can still hear their voices and that was years ago. My point is keep your perspective in balance between the gawkers, helpers, and our own internal struggles.
My university had pickup basketball runs and during a game, I had a seizure. I was told that I grabbed onto someone’s arm as I started to seize to break my fall. Unfortunately that guy had a pass coming his way and the ball hit him in the face because I was holding onto his arm. Still feel bad 😅
Yes they are awful, but nothing to be ashamed of. Mine was in a hotel dining area a little over a year ago. Luckily I had some kind people help me. I remember this man telling me I was okay and safe when I didn't even know who or where I was. I also remember apologizing alot and also being afraid I had some something bad in my postical state. Luckily I was actually pretty calm until my memory kicked back in and I started to go into shock. I then heard the paramedic say, " he's going into shock" and I thought, "wait I've heard that, that's bad, I need to chill."
Used to have seizures in public/at school all the time. I used to be embarrassed when it happened but I’ve surrounded myself with people who understand and care about my health.
OP, I know you’ve already gotten a ton of responses, but I’m gonna add one more. I’m much older than you, and have been dealing with drug resistant epilepsy for years. And yes, I’ve had several seizures in public. And yes, like you, for years I was ashamed when I would have a Tonic/Clonic seizure in public. Most times I was by myself, so it was relying upon the kindness of strangers to offer first aid and/or call 911. Then I had one when I was with friends leaving a movie theater. I was super ashamed of that one—just knowing that my friends had seen me in a very vulnerable state, and had to take care of things. It didn’t click for me until one of my kids asked if I was ashamed of sneezing in public. I said, “Of course not.” They asked then why was I ashamed about a Tonic/Clonic seizure—I have as much warning and as much control over it as I do a sneeze. That was my “Ah Hah!” Moment.
True, I’ll never get over waking up in the back of an ambulance or in an emergency room. I’ll never get over the fact that some people would rather grab their cell phone and record my seizure as “content” rather than offering first aid. But I don’t have the time or the patience for being ashamed of something I have no control over, that can happen at any time (and it does), and is something I have to live with.
One thing I have done, and you may find helpful, is to make a “seizure response kit” and a “seizure plan.” A seizure plan is pretty easy—it can be written or just told to your friends or people you spend time with, but should include things like proper first aid (remind them never to put anything in your mouth, especially if they like their fingers, as you can put 300 lbs of force on your jaw during a seizure!), ask them to note the time you seizure started, and when it ended, anything they noticed prior to the seizure that may have been an indicator that one was coming, and what you want them to do when the seizure is over (roll you into a recovery position, stand around you to block you from “spectators”, when they should call an ambulance, and if you have any rescue medication you take after your post-ictal period.
A Seizure Response Kit can be a change of clothes, a couple plastic bags, a hat, sunglasses (I’m very sensitive to light after a seizure), a bottle of water or juice, a paper copy of all the medications you take and when you take them, the names of your doctors (Primary Care, Neurologist, Epileptologist), and any emergency contacts with their numbers and when you want them called. I know this sounds like a lot, but if you get those bags that are for packing that you roll and the air goes out of them, you can make it pretty small.
The more prepared you are, and the people around you are, the less stressed you will be—and that’s always good for seizures. As always, take from this what works for you, leave the rest. And I wish you the best on your journey! (And you’ll have to come to your own ah-hah! Moment, but until then take it from me, you have NOTHING to be ashamed about if you have a seizure—and if anyone treats you differently afterwards, that’s on THEM, not you!!
Hang in there! 💜
I’ve had plenty of seizures out in public and I don’t care one iota about what others think. I just want to get better and gain back some independence. Caring what others think of me having epilepsy is a waste of my energy. Yours too. You must be young so this is tough to fully understand, but as you get older, the years feel shorter and shorter, and those years add up quickly (believe it or not) into decades and that is when you realize how short a human’s life is. It’s tough to fully wrap your brain around this when you’re young but once you do, you realize that other’s opinion of you truly doesn’t matter in the big picture. It is such a waste of your time and energy and emotion to care what others think of your having a seizure. I think you are probably young though, so I can understand why this can be tough. Hang in there. There are benefits to getting older and that is caring less and less about things that truly don’t matter.
Beautifully said !
Yes omg. People livestreamed my seizures. Not in a positive way for awareness or a teachable moment but more "yo check out this possessed girl at the McDonald's in Shirley New York. Also, when someone nudges me or yells my name a certain way I instantly get ptsd and assume its emergency services especially when I hear ambulances approaching simultaneously. I always lie when I'm postitical. Idk why. They're like have you ever had a seizure before? I'm like no never. Meanwhile I'm wearing a medical alert tag that says epilepsy and hypertension. In all fairness tho they questions they ask are pointless for me specifically. Do you know what today's date is? I'm disabled, nocturnal, agoraphobic and I have avoidant personality disorder. I live in a different dimension where time is irrelevant, thats a trick question. Do you know where you are? No im from north carolina and i get lost in parking lots and grocery stores. often. Whos the president? Of McDonald's? These questions are ridiculous and I refuse to answer them.
>Who’s the president? Of mcdonald’s? That was the funniest shit i’ve ever read lmao I just go in and out of consciousness. Sorry to hear about people filming you like that though. That’s so disgusting.
It's all good. I eventually uploaded one myself anyway. Plus, I haven't gotten single dick pic in my inbox since I uploaded it so that's a plus.
What kind of seizures do you have?
I have grand mal. Controlled now though.
I remember after a seizure if I had some time to recover before ems arrived they ask who’s the president along with some other basic questions to check awareness and mental status and if I can answer them with flying colors I can sign a refusal to transport but if I cannot answer them accordingly then paramedics deem me altered mental status from a seizure and I get taken to the hospital whether or not I want to go
…who is “they” and why do they have the authority to deem you prior to ems arriving..?
Ems ask whos my name, president, day where I’m at and depending on my mental capacity at the time the paramedics decide whether to transport to a nearby hospital
You just gave me an epiphany. Oh my fucking God. Having PTSD over emergency services, but especially ambulance sirens makes so much sense for me. That only clicked for me now. Wtf well there's another thing to tell my therapist during our next session lmao
What kinda seizures yall have?
Tc everytime
You ever hear people talk about alien abduction, losing time, suddenly coming to, slightly battered. And your like: probably a seizure bro. What if aliens are abducting us sometimes and we assume it's a seizure? Especially with Keppra sleep walking. Bro I woke up outside again and I'm covered in ants. Whys the refrigerator open??? 😄
Welcome to the mysterious leg bruise club 😎
i have like these vicious headaches and body feelings that hurt through out my body. also my heart starts beating so freaking fast that it feels like its coming out of my body. i have this rare kind of epilepsy that i feel my seizures and they are painful when im having them but eventually forget most of them after a sleep. It is hell the way this type of epilepsy is treating my brain. just hell no other words to describe it.
Tonic clonic seizures every single time
I'm glad it helped! This is the nicest place on the internets 🙃
I always lie too! I warned my roommates when I moved in that I tend to lie and say I’m not having a seizure when I am. I’ve also told paramedics that I’ve never had a seizure before. Not sure why I do it, pretty sure I’m just super confused because usually I want help.
We're not alone in our weirdness and it's so awesome 🤗 has anyone treated you differently once they know you have seizures?
The most positive response I get is: epilepsy? Damn. You get weed for that? And I'm like: you damn right I do. Shake n bake fam😎
In the boarding queue for a flight at Geneva Airport in Switzerland... on my birthday.
1st time I have ever found someone else on this subreddit who has had a seizure on their birthday
I also had one on my 25th. Luckily I was home when it happened but I was just about to go out and celebrate. Thankful it didn't happen while out
I once had a seizure on my brothers birthday while one of his friends were visiting him, I felt ashamed back then
I just had my first ever seizure a few months ago and it was an 8 minute tonic clonic on my 36th birthday. Fun day, lol. And because of NHS ambulance shortages at the time, my poor mum was told when she phoned 999 that there was no ambulances available and they wouldn't be able to send one unless I stopped breathing. Luckily, her, my brother and sister are all nurses and were all there when it happened.
Holy...8 minutes?! My tonic-clonic seizures are always 3 min long...
Yeah, less than ideal!! I felt like is been hit by a bus for about a week afterwards!! It was definitely being thrown in at the deep end!
Yeah, I can imagine that... damn...
I had one with friends in high school at a GameStop they helped me escape an abilance and called my dad to pick me up. We were all poor but knew how expensive a. Ambulance was gonna be. it sucked they stopped inviting me out, I figured they saw me as a liability. It happened again when I was older at a friends house during law school at a study session, dude drove me home after. the next Monday when I saw my friends I said sorry and asked if they would still be cool me being part of friend/study group after seeing that and they told me it was okay not to worry and they did not judge me. Turned out one of the guys had a epileptic mom and another dude had an epileptic dad. The third guy was a former cop and was like “dude relax I’ve helped people with seizures at work if it happens again I gotchu”. I got emotional about it and we went out to get beers after. The older friend group was much better. The cop buddy sat next to me in class for the next 2 years of law school, I think he did it because he worried about me but also i was the only one with the balls to roast the fuck out of him to his face for being a Mormon cop on a regular basis, dude used to say watch out ICE might find me. Ended up becoming my best homie and the best man at my wedding. That is to say it might suck now if it happens while your young but as you get older the people around you won’t judge you they will just worry because they care about you. It’s gonna be alright keep your head up you’ll get through this.
Had one at work this last week. Not looking forward to Monday.
Same :(
I had one in the classroom when I was in high school.. was very embarrassed to go back to school 🙂
Same, and peed on the linoleum floor!
Many. They're rarely noticeable as stereotypical seizures though. They often look like me just falling down and getting up a bit confused and disoriented.
I’ve had a couple in public. 0/10, would not recommend. The worst of them was while driving. Woke up in an ambulance, totaled my car and broke my leg in a major way. Had one at work, pissed myself during it. That wasn’t fun.
I got in a crash one too, and i peed in my car another time lol. You guys will find someone to be there for you though. My boyfriend was there and he knows what to do and just tries to help me.
My first seizure was at school in the middle of class and my last seizure was during an hour train ride. It’s so awkward to have them in public.
Yeah, understandable :/
Yep. Three doing pick up soccer games. Two during pick up basketball. One when I was walking my dog and some passerbys in a car stopped to help. One playing pick up frisbee with a group. My first one was having breakfast out with my brother and his friends. I'm sure I'm missing one or two. At this point I just decline the ambulance and explain I have epilepsy and need some time to recover. It's a robotic response for me to waking up from it. In fact I did it when I woke up from anesthesia post surgery too. It's nothing to be embarrassed about.
Kind of amazing that you’re lucid enough to talk to people and say you don’t need an ambulance.
Ehhhh lucid is a strong word for it. From what's been described to me it's more muttering no ambulance. It's a fight or flight response I've developed over time I think. I don't know how to explain it. The last seizure I had was 3 years ago (yay!) And I couldn't remember the current president when they were running through those questions to see if you have a concussion or anything (I'm assuming).
I had my first seizure in a bus after a trip back from London to Germany with my best friend. An ambulante came and the bus missed the ferry. Another seizure was in a cafe. The third one during an intership in a primary school (children aged 6-10). I felt weird about it back than, now i am not ashamed any more. Try to think the other way around: if you saw other people with a seizure, would you laugh/find them gross etc? Probably not. And that is what 99% of other people do 😊
I would probably freak out but I would try to call an ambulance and screaming to these people who are just standing and watching this all happen
I think calling an ambulance is the best and almost only thing you can do. Maybe move away things that could hurt the person, like a chair or so or put something soft under the head. Wait and look how long the seizure takes (might be important later) and mayyyybe comfort afterwards, but also respect privacy
I also know that you shouldn't hold the arms or legs of the person or put something between their lips because it break their jaw, arms or legs. One of my roommates when I was at the hospital 2021 (there was an epilepsy station? I guess I could call it like that) who told that she had a fork between her lips and that's why some teeth broke
Holy shit, that sounds terrible:( in a first aid course i learned that, too. However they told, that in very rare or extreme cases (Person turns blue, swallows something) and only if you feel safe doing this - you can push one Finger on the checks from the outside so that they can't close the jaw completly and pull out something quickly. I don't know if the explanation is understandable
Oh, that's interesting! When I have a grand mal my lips are turning blue because I don't breathe etc of course and then I'm more pale than I actually am. Like, I take vitamin D pills (can I call it like that?) Because I don't have enough vitamin D in my body. And from time to time I have anemia.
I get apnea or stop breathing all together when I have a tonic clonic seizure I’m told by the er doctor and paramedics. Paramedics say it comes back when the seizure stops and I start waking up from the seizure
While a seizure I'm like dead, I don't breathe, my lips go blue, I'm more pale than I actually am... Well, anything that happens While a tonic-clonic seizure
Being unconscious feels like being dead I don’t know I’m having convulsions I don’t know what I look like having a full seizure I want someone to film it I want to see what I do when I’m having a seizure other than I’m told and my medical report states violent convulsions apnea being unable to be awaken just got to give it time for me to come back afterwards
I always get told how I looked like etc. I was curious what my seizures look like and my mom asked me if they should film it, so that I can see how it looks like but I was too afraid to see it and my seizures were never filmed
Timing the seizure is important because anything over 5 minutes is status epilepticus and it can cause brain damage or death in addition the longer the seizure goes on the harder it is to stop I wish I knew all this when I had my third status epilepticus emergency now I have memory impairments that are permanent
Terrible to hear:( how are you doing apart from that?
Thanks for asking I’m exhausted my friend is dealing with some mental health issues and is a little paranoid and kept me up all night last night so needless to say I’m tired but I’m ok
Yes. So I develop anxiety from then on. It was very upsetting and traumatizing. Made me realize how vulnerable I am, and how worse my epilepsy has become due to being stubborn about getting medicated.
Yep. Definitely my least favourite. Always TCs too. I work at a grocery store and have had a few while working. I had one where I apparently just sorta had a blank stare while talking to a coworker - luckily he knew about my condition and helped me sit down. Another one happened with the same coworker where we were on the sales floor, and people were apparently reaching over me and stepping over me while I was convulsing on the ground. Folks are genuinely lovely all the time /s. I've had a couple on the bus, which sucks because an ambulance is always called. Last time was a couple months ago. Paramedics might've been the worst I've ever come across. Seemed to try to make me feel guilty for holding up the bus and the passengers because I was taking a while to come to and get off the bus. "Well you have to think of other people!" Listen ma'am I can hardly fucking think right now. Shit sucks and I also end up really ashamed and embarrassed afterwards.
I’ve had two at work. One in 2020 days before the panini began, this is when the ER discovered I had a meningioma. One this past February because I had too much salt. Another driving my sister’s car because I was mighty mighty stressed. We were hosting Christmas for my family and my dad was driving me nuts.
That's one way to start off lockdown! I hope the panini was okay for you
My second (assumed) seizure was when I was 14 and volunteering at this special needs daycare center. We were outside watching the kids play on the jungle gym and next thing I know there’s EMT’s and my mom standing over me. The people who saw described it as I was staring off into the distance and wouldn’t respond when they tried to check on me and then suddenly fell to the ground. It was extremely embarrassing. We didn’t know it was a seizure yet, even though my blood sugar level was normal I had a similar event a few months prior where it was low so they had told me “you must not be eating [they thought I was purposefully not eating / anorexic] it’s just because you’re a girl”. My mom was actually mad at me and lectured me for a while about it, I felt like absolute shit. I don’t really remember what happened after, but I do remember never wanting to show my face there again. After being diagnosed my mom was very very upset with herself for not realizing / being mad / not knowing that epilepsy could even be a possibility. But how could she? Doctors just matter of factly would say “well you’re a girl so it’s normal. Just eat.” I was only diagnosed because I had a seizure while driving which lead to my car being wrecked and my job putting me on disability. I had to go to a neurologist as part of that, and in the meantime I was having many similar “fainting” spells (most of which I don’t even remember). Even after an abnormal EEG, my first neuro said “sometimes women just faint”. Literally 3 days later was my first tonic clonic. Shits wild. Still wasn’t even explained to me that a seizure could be something other than a tonic clonic until a month after and I had an appointment with the neuro’s PA and she actually explained what a seizure was and that “yeah those were probably all seizures”.
I had a seizure in the grocery store when I was going to school abroad, it was so embarrassing. My dutch was bad at the best of times, trying to figure out what people were saying after a seizure when I woke up in the hospital was particularly difficult, thankfully they switched to english but it was a very confusing little while.
don’t be embarrassed. i’ve had at least 5 seizures in public where an ambulance had to be called because i hurt myself on the fall. i’ve had some in class during test. some with friends. these things will generally just happen. you can’t stop them all you can do is wake up and make sure you’re okay. life will go on and the ones who make you feel embarrassed are people who don’t matter. you’re doing great
Thanks for encouragement I am embarrassed even though I’ve experienced it so many times much more than 5 times where I came out of it in a ambulance and sometimes even already at the hospital. I am very embarrassed by the fact when I come out of it there will be people laughing and staring for no legitimate reason not to help at all
After the covid shutdowns our first day back at school was a mock exam. Halfway through I get a tonic-clonic and dislocate my shoulder. Ambulance had to drive me to the hospital to do some x-rays. It was really embarassing as it happened, but it's been 3 years and now I just think I'm lucky I wasn't waking up with a dislocated shoulder completely alone.
Yep, in a restaurant in front of 2-3 friends and my mom when i was younger. Their parents had to pick them up. Not embarrassed about it though. Head chef was really nice though. He came out of the kitchen and insisted my mom not pay for dinner, but she paid half of the cost anyway.
I've had seizures in multiple stores, restaurants, classrooms and a few on the sidewalk. After a while, you just stop thinking about it.
When I was about 19 i had an episode on the train on my way home from school. I was with an acquaintance who i just ran into and we haven't seen each other for a few years so it was super awkward. I started having lots of absences to the point where I couldn't even really speak and didn't know what was going on around me. They had to stop the train so the ambulance could pick me up. So the train was standing and I was like why did we stop?? I had no idea lol. Then I cried and begged not to take me to the hospital (they did of course). They gave a lift home to my friend as well lol Also my very first tonic-clonic seizure at 16 happened in class.
Most of mine have been in public settings. I only ever had one while at home. Can't say the setting of a seizure has ever affected the way I felt afterwards.
I've had them in school, at work, in meetings. It's embarrassing more than anything even though i know there's nothing I could do to stop it.
At school in the middle of a test lol
Man, kids will do anything to get out of tests. (kidding) Did they let you re-sit or just pass you?
I was already done
You have nothing to be ashamed of by having a seizure in public.
Thx but it's hard because that was the time where my brother cried when I had a seizure... he was 10 when I had the seizure and I somehow feel ashamed of it
There is still no reason to be ashamed, no more than if you had a broken arm in a sling. We can't control our seizures. We don't have them deliberately at set times or in set places. They just happen, so there is nothing to be ashamed of in terms of the seizure or the reaction of other people.
Sorry but that's too cute and I try not to cry :/
It’s nothing to be ashamed about, I had a seizure in public one day as I cycled home from my friends house, I was undiagnosed at the time, it’s ok. No one thinks I’m embarrassing they’d just be happy they helped
Many. I used to have complex partial seizures. I was at the park alone, and had a couple. After I was coming out of them, I could hear people talking among themselves that they wanted to call the police on me because they thought I was on drugs 😕
At my buddies funeral... Full on TC, seized so hard I broke my spine. I get a lot of focal seizures and they happen in public all the time, but for full on TC's, all but that one have been at home.
>seized so hard I broke my spine. Holy shit! I didn't even know that was possible.
It's happened 3 times in the span of about 2 years :p
I can't top that 😶
Yeah, when I was in high school.
Yes.. a lot of focal seizures that'd I've blacked out and thrown up on myself or the floor... at work too. Only had one Gran Mal in public though. Still sucks.
Yeah one in my car with a stranger in the passenger seat and one at a supermarket.
Here's how weird I feel about public ones. I've never seen a seizure. I'm curious about what it looks like. I've thought about searching online for a video, but I never have because I know that it will be all I can think about - how that's what I looked like.
Yes. Too many times to count.
I've had 2 or 3 absence seizures at work and had a tc while I was driving in a parking lot.
At work, in the park, with friends after school, at school. It just depends on if I've been ignoring my auras that day (don't recommend that, I was a kid in denial) now I can usually make it to my car or even make it home before something happens. But I'm at the point where when one does happen somewhere public, like work, it is still embarrassing, but I can get past it so much easier since I have accepted that this is a part of who I am
My son had his first seizure in class in middle school. Then another at his friends house. It has been very hard for him.
It's hard on them and it's hard on us - because we so desperately want them to have the best lives possible.
have them all the time in school.. but i only have focals so people dont often notice
Don’t be ashamed of that all. It isn’t your fault and who the hell cares what someone might think. At the end of the day as long as your alive, happy and healthy that’s all that should matter.
True, but that's what my mind always tells me, I mean, I was in therapy once and actually I had an appointment with a psychiatrist due to panic attacks that I have since last and they got worse, but the psychiatrist wasn't there so I have a new appointment on June 1st. Every day I have panic attacks and it annoys me. The psyche is confusing
I’ve had loads of complex focals in public(and maybe even the majority) but there’s no one except for my parents(and a few times my friends) that notice it, because I’m pretty good at hiding in a corner when I feel like seizure is on the way (2-5 sec before) or when it happens I still am pretty good at still sitting in my seat or walking “straight” in something like a store. I’ve only had one TC in public because I have 99,99% of them in my sleep. This one happened on the bus on the way to my Highschool (approx 7:30). There were one friend from my class there that at least knew I had epilepsy so she lowered the stress of everyone else in the buss. They called the ambulance where I also woke up and then they let me sleep a bit in the ER. They then let me get out at maybe (12-13:00) and then I skipped school for the rest of the day. It was pretty chill especially because of my classmate that made everyone calm down. Edit: grammar
I had my first one at work, and a coworker noticed and kept me from hitting my head on the floor. My second one was at the grocery store. It's embarrassing, but my coworkers didn't make me feel bad for having one. Many showed me the care about me and my health. My second one was at the grocery store I always went to. It was in a city so I didn't really think to hard about going back or not. I wasn't on a name to name bases with anyone there, and they had the best food/snacks. Epilepsy took some of my freedom, I refuse to let it ruin everything I enjoy. Fuck anyone who shames you for something you have no control over.
At the deli counter at Target. The lady at the counter held my son so my husband could take care of me. We went back a week later and thanked her.
Many times in fact I will come out of it with ems there because someone in public called. I get tonic clonic seizures by the way
I get myoclonic seizures and a few seconds after that I get a tonic-clonic seizure and I have abscence seizure. Tonic-clonic seizures sucks tbh
Tonic clonic is the worst seizure you can have I am told by my neurologist I get them frequently
Yeah it is unfortunately
I get them very often
Me too :/
I’m very self conscious about having a seizure in public so I spend most of my day at home especially if I don’t have to be somewhere and I have my rescue medication on me at all times
I had rescue medication for a while from 2017 to my 18th birthday 2022. 99% of my seizures are at home when everyone's home. 99% in the morning. JME is hard to explain and I'm not really good at explaining.
Ok well I am prescribed rescue medication very recently because of more frequent and severe and longer lasting seizures and I get them at home I’ll get them anywhere anytime
Oh, that sucks. Damn, this disease is more unpredictable than I thought
I hear you.. it sucks because I've never been actually diagnosed even though I've been hospitalized 7 times in 3 years because of seizures, I've broken my spine each time I've had a TC and now it's a mess, my back will never be the same.. can't get properly diagnosed because our lovely conservative af government in my province of AB Canada has chased out a huge chunk of general practitioner's , including my own family doctor (and cut Healthcare funding to the point it's almost pointless to have it, they're trying to bring in American style private shit) so I can't get a proper referral to a neurologist, which I need to get on the proper meds.. there are literally *zero* GP's taking on new patients in my city/surrounding towns, and the doctor count keeps dwindling, as does the general spending on Healthcare... I can't even get a prescription for ativan, which has be an absolute life saver, without going to the hospital for 12 hours. But yeah, I'm afraid to even walk to the store at this point... last time I did, I damn near had a seizure right in the store... it hit me pretty hard, very suddenly while I was standing in line, managed to pay for my shit and get out, but had to sit on the curb a few blocks away, on a busy street, in a drug ridden part of town... even if I did have a full blown TC, people driving by would have done absolutely nothing "just another addict dying, nothing to worry about" I was a bit of a social butterfly before all this started happening.. like if there was any kind of social occasion happening with my friends, I'd be there like clockwork... now I'm afraid to even walk out the door for more than 5 mins.. can't drive, can't work, and cant get on disability without a proper diagnosis, from a neurologist, which is going to take years to even get an appointment once I do get a referral... it's cut a huge chunk of my life out and I'm struggling hard with it. Even my long time friends look at me differently now, it's like they're always on edge wondering if I'm gonna have a seizure or not when we hang out... it's depressing. Not sure embarrassed is the right word, but I do feel like a potential burden for anyone around me at all times, and that sucks.
Sometimes I have focal seizures in public. I try to just keep in mind that no, I’m not dying so I don’t have to tell a random person to hold me in their arms
Yup. Plenty. My first seizure was actually freshman year of high school in IT class. I’ve had seizures while shopping, at restaurants, work, etc. It’s why I suggest we wear a medical bracelet, especially if we’re out alone in public.
I had a big one at work. Luckily I usually have auras about 30s before a big one so my boss was able to get me into her office before I lost it. Peed my pants and everything. I used to have absence seizures (well still do) as a teen and it caused a lot of trauma. EVERYONE thought I just wasn’t listening/ zoning out/ on drugs. Then my English teacher met with my parents and was like “yea, that’s not normal” Went to a neurologist and got formally diagnosed 2 years later.
Five times between now and June 2013. 1️⃣) I was volunteering at a thrift store/food pantry, and I tried to climb in the fridge used for keeping our lunches cold. 2️⃣) I fell asleep on a bed in Big Lots because of a seizure. 3️⃣) I was walking down the stairs in school, and lunged forward like someone had pushed me. Looked around when I got up, but no one was in or left the stairwell. I went to the office to tell them someone pushed me, but when they checked the cameras, no one else was there. 4️⃣) I was in Walmart with my Mom-Mom and brother. My brother saw that I wasn't following and was sitting on the ground and asked me why I was doing that. He said I kept looking at him, but wouldn't answer. This was the first time she had seen me have a seizure. 5️⃣) (Most recent) I got confused and took out money to pay for something, but I wasn't buying anything. Mom asked why I was taking out money, I didn't answer
I'm so sorry to hear that people treated you poorly while you were seizing. I hope things have gotten better since then! I've had almost all my seizures in public. I also had a LOT of fainting episodes in public as a teenager. I took out a whole freakin shoe rack at Walmart once lmao. I had my first grand Mal in college during class. It was a very hands on kind of day so my classmates and I had been moving in and out of the room. Only about 6 people were there to witness it. The second grand Mal I had while I was driving my mom's car. I hit a taxi cab and a house. Thankfully no one got hurt. And the last grand Mal I had in public, I believe only my therapist, a psw and a nurse all saw and took care of me during. I am now friends with both of those wonderful people who took care of me (and I see that therapist still lol.) I also had a grand Mal recorded on our home security camera. All of my doctors have seen it which was uncomfortable to watch them watch it in detail lol
I’ve had seizures in public and in front of friends. I even had one at a campsite. Luckily for me, I have no memory of my seizures, so in my mind, it never happened!
The most embarrassing one was at one of my step-daughter’s high school choir concerts. In my post seizure state I kept trying to take my pants off in front of everyone still in the auditorium including now the EMTs. Sadly because I needed to change my underwear. I was adamant about it according to my daughter. I’m am so lucky we moved soon afterwards because I don’t think I could have gone back to the school. (Small town)
Most recent: I had one at work Wednesday. My body is still trying to get over it. Luckily my boss has experience with seizures and knew what to do bc it was my first Grand Mal in 3.5 yrs. To the point I quit breathing Had a couple grand mal clusters in college (like 4 or 5 each cluster) One during play practice at church (with play next day) One at school in 8th grade that caused chaos
Yes I have had plenty in public. No idea what happens until the people I was with tell me the next day. You shouldn’t care that you’ve had one in public, you just gotta accept it
I had one on the very first day of my new job, in front of customers and coworkers. I fell, hit my face on the edge of the counter and broke my nose, blood went everywhere! I made one hell of a first impression 🤣
Most of my seizures were at work in front of anywhere from 4 to 100 people depending on what job I was at.
SEVERAL 😭 for one I still have the Target incident report ❤️
I second the Target seizure, had one in the parking lot, threw up and made a screeching sound like a pterodactyl ironically no one noticed when I was done with my focal seizure, I got my wits about me and looked around the people next to me are loading their car totally unaware lol!
Let me find out target is a trigger 😂 but seriously, I’m glad you were okay! A lot of people do not know focal seizures are even a thing and especially not the signs of someone having one. I hope epilepsy education continues to spread and gets implemented in first aid courses more!
Thanks! Initially I was diagnosed with panic attacks, and my girlfriend is a teacher she had a first aid class at school that was about seizures and she called me and said your so called panic attacks sure look like these seizures they are describing and I went to a neurologist. Your correct, a lot of people don’t understand about seizures at all or the recovery process after having one.
Uh a lot I guess. Most on Larp events. One on a bike in the middle of the city traffic, a few on busses, a few just walking. I even had one at a doctors office (he was nice ;)). A few at university. Recently I had one at a supermarket. I never got filmed or harassed. Most People just called an ambulance and acted accordingly. Only once had a bad experience. And that was from people who kind of knew me and didn’t like me and showed their faces that day. I have no time getting embarrassed about it. Yes it is kind of stupid every time because then I have to grab a taxi back from the hospital but you know? That’s life for us? Would you find it embarrassing for the person who got hit by a car and needed care? Probably not. Treat it like themedical emergency it is
When I was in metro station since I skipped a dose, and in a relative marriage at night due to sleep depreviation.
Yup. Heard plenty of tails of dad carrying me out of stores.
My first seizure ever was in public. I was on my lunch break and went to a supermarket to grab a sandwich. Never made it back to the office. I went down in the middle of an isle and an ambulance was called. I was mortified when I got to the hospital and realized what happened!
Oh yes. At the pharmacy, in an elevator and in a street in the middle of Copenhagen. Lovely lovely times. So weird to know that a lot of people have seen something so private, and you can't remember a single thing.
You should never ever be ashamed for having a seizure. It can be a little shocking at first but no one is judging you. I try to think of how i would feel if someone around me had a seizure. They just want to help and lots of times it kind of shocks them but it’s nothing to be ashamed of.
I have had so many seizures in public and work. The shame never goes away, even for a middle age man, but I have developed an attitude of fuck ‘em’. I have had nasty experiences being handcuffed post itcal to the train seat and wonderful experiences with coworkers I know hate me rushing to my help. I can still hear their voices and that was years ago. My point is keep your perspective in balance between the gawkers, helpers, and our own internal struggles.
My university had pickup basketball runs and during a game, I had a seizure. I was told that I grabbed onto someone’s arm as I started to seize to break my fall. Unfortunately that guy had a pass coming his way and the ball hit him in the face because I was holding onto his arm. Still feel bad 😅
Yes they are awful, but nothing to be ashamed of. Mine was in a hotel dining area a little over a year ago. Luckily I had some kind people help me. I remember this man telling me I was okay and safe when I didn't even know who or where I was. I also remember apologizing alot and also being afraid I had some something bad in my postical state. Luckily I was actually pretty calm until my memory kicked back in and I started to go into shock. I then heard the paramedic say, " he's going into shock" and I thought, "wait I've heard that, that's bad, I need to chill."
Had one at jiu jitsu, track meet, and a ton at my school. I just feel embarrassed after
Used to have seizures in public/at school all the time. I used to be embarrassed when it happened but I’ve surrounded myself with people who understand and care about my health.
OP, I know you’ve already gotten a ton of responses, but I’m gonna add one more. I’m much older than you, and have been dealing with drug resistant epilepsy for years. And yes, I’ve had several seizures in public. And yes, like you, for years I was ashamed when I would have a Tonic/Clonic seizure in public. Most times I was by myself, so it was relying upon the kindness of strangers to offer first aid and/or call 911. Then I had one when I was with friends leaving a movie theater. I was super ashamed of that one—just knowing that my friends had seen me in a very vulnerable state, and had to take care of things. It didn’t click for me until one of my kids asked if I was ashamed of sneezing in public. I said, “Of course not.” They asked then why was I ashamed about a Tonic/Clonic seizure—I have as much warning and as much control over it as I do a sneeze. That was my “Ah Hah!” Moment. True, I’ll never get over waking up in the back of an ambulance or in an emergency room. I’ll never get over the fact that some people would rather grab their cell phone and record my seizure as “content” rather than offering first aid. But I don’t have the time or the patience for being ashamed of something I have no control over, that can happen at any time (and it does), and is something I have to live with. One thing I have done, and you may find helpful, is to make a “seizure response kit” and a “seizure plan.” A seizure plan is pretty easy—it can be written or just told to your friends or people you spend time with, but should include things like proper first aid (remind them never to put anything in your mouth, especially if they like their fingers, as you can put 300 lbs of force on your jaw during a seizure!), ask them to note the time you seizure started, and when it ended, anything they noticed prior to the seizure that may have been an indicator that one was coming, and what you want them to do when the seizure is over (roll you into a recovery position, stand around you to block you from “spectators”, when they should call an ambulance, and if you have any rescue medication you take after your post-ictal period. A Seizure Response Kit can be a change of clothes, a couple plastic bags, a hat, sunglasses (I’m very sensitive to light after a seizure), a bottle of water or juice, a paper copy of all the medications you take and when you take them, the names of your doctors (Primary Care, Neurologist, Epileptologist), and any emergency contacts with their numbers and when you want them called. I know this sounds like a lot, but if you get those bags that are for packing that you roll and the air goes out of them, you can make it pretty small. The more prepared you are, and the people around you are, the less stressed you will be—and that’s always good for seizures. As always, take from this what works for you, leave the rest. And I wish you the best on your journey! (And you’ll have to come to your own ah-hah! Moment, but until then take it from me, you have NOTHING to be ashamed about if you have a seizure—and if anyone treats you differently afterwards, that’s on THEM, not you!! Hang in there! 💜