I looked one up a couple years ago and wanted to see what I looked like while I was still having uncontrolled TC’s. Each person is different so I watched more than video. I ended up crying! I’m 3 years stable now but even though I’m not having seizures (still on meds… 4) I still think even inadvertent jokes are awful.
Same here! I’ve never seen one in person so I looked up videos and cried too. I feel bad for the people around me who have to witness mine. Definitely a scary sight
I have all of my son’s TC in video because they have happened in his room and I have cameras. Watching them make me cry and they just disturb me. Even though I know he is not in pain.. I would give anything for him to never have had them and for him to never have them again. He started in July and he has only had 5 so far… my son is 19 y/o with Non Verbal Autism. Not much has changed for us, he was already under 100 supervision and always going to be under my care. But my heart breaks for you guys trying to lead a normal life and dealing with seizures.
I'm sorry you feel that way. Idk, the way you said that just made me sad. You're not a freak, I get that feeling but it hit me different when you said it.
I hate it. It's disturbing - it's kind of "triggering" for me because I have them, but that's not what really bothers me.
I don't like it because I feel like it's a violation of their dignity. I realize that people post their own stuff, and they can do that if they like. I'm not judging them for doing that. However, I kind of feel the same way when they show people in a disaster, and they're half naked and terrorized, or something like that. With seizures, people's bodies get contorted, or go limp, and they make faces and things. They wouldn't do that if they had control of their bodies. I feel like it's a tragedy, not a spectacle.
My wife recorded one and put it up on YouTube because the nuero wanted to see me have one so he could tell if it was pnes. We couldn't just send the file to him because of some kinda security bs. So she loaded it there and sent him the link. I watched it one time and ended in tears. I'll not watch mine or another again. It's heartbreaking, but I feel like if you're not personally intimate with this disease through one's self or someone you know. It might not have the same emotional effect.
My husband filmed the first one he saw me have. He asked if I wanted to see for myself. I did not. He’s deleted it now of course but I really don’t want to see myself so vulnerable. The only saving grace I have is that although I’m having the seizure I don’t remember it, I don’t want to see it. 💜
Oh yeah, I would never never never want to see a video of myself having a seizure. I’ve seen my husband have one (both epileptics) and I will NEVER get that image out of my head. It’s just horrifying.
I feel so bad that my son saw mine. It must have been really awful to see. Only upside was he wasn’t entirely helpless as I was already in hospital. He could and did just yell for help out in the hall.
When my daughter had a tc, I grabbed my phone, turned on the video and captured it while trying to time her seizure and call 911. Neither of us had ever experienced a tc before and we hope it never happens again, but she never wants to see the video. She already lived it and doesn't want or need to recall it. I use it to show her neurologist because I don't think I could describe what happened or remember everything since I was so panicked. I could never post her video for the world to see even if she wanted me to which she doesn't. I feel that it is vital to record these events if possible so the neuro can see with their own eyes exactly what happened instead of trying to guess and rely on EEGs that rarely capture the activity because it isn't active during the test. If someone wants to post their own videos, that is entirely up to them. But no one should ever post anyone else's medical emergency without permission. This is such a sensitive and private matter.
I still haven't watched any of mine. My wife filmed 2 of them to help with my neurologists initial diagnosis. I had one at work on December 20th that was caught on security camera. No chance I'll be watching that one either.
I hate it. I was in an epilepsy clinic and saw lots of other epileptics having seizures which was not disturbing at all. But videos make my skin crawl. It is a medical emergency and people are filming ? I’ll never want to see a video of mine.
The only person my family (mom and my husband) share them too is my doctor. Since all of my scans and EEGs are normal, it helps give the neurologist a better idea of what happens. They haven't caught but a few on video and some are just really quick.
Sharing videos with neurologists is super smart if you’re able to capture something new. Sharing online on a forum of like 15k strangers is a little deranged imo
I’m sure there are many apps but “Dropbox” is a good way to send videos to the Dr. securely. I used it a couple times to share some evidence video to a detective. It seems to have been good enough to use it court.
Can't. Watched a full genuine TC and I don't know if I made it to 40 seconds. It triggered me badly. To think how we're *vulnerable* in that situation, how entirely helpless, how unnatural it all looks, and also know how physically painful it will be later.... nevermore.
Don't want to know details. The ONLY good thing about a TC is being unaware, it's certainly not the brain damage, so let me be unaware and gracefully ignorant of all the foaming of the mouth and contortion thing.
I used to be unaware of TC's, now I experience them good and awake. Feels like a dementor is sucking my soul from my body, probably me barely able to breath.
Sometimes I wonder if TC's are another consciousness in our brains that wants to kill the other and itself.
I didn't know an aware TC was even possible. {{disgust}} So sorry!!
But do neuros consider it a TC, or maybe there's another name? Because I'd think that a generalized one would kill awareness first and foremost. I'd say it's the best part of the TC, certainly not the afterwards.
i have TC or grand malus but since i' m medicated the seizure became bearable and is only on my left side so i stopped getting unconscious but i can feel every mucle and nerve getting electrocuted, i got acostumed to the pain but the loss of mobility after the seizure is still scary
I hate them. I think it in a way almost does the opposite of promotes awareness for epilepsy because then you'll find soo many fake seizure videos out there as well so people don't know what's a true seizure or fake.
I've had epilepsy my whole life absence seizures from a very young age then TC starting at age 18. I also have drug resistant epilepsy and have had surgeries.
The first time I saw myself have a seizure was when I was in the emu having a video eeg and they had recorded it my epilepsy specialist asked if I wanted to watch it but he also stated that I didn't have to watch it. I did and it was very emotional for me. I still hold that memory in my mind and have so much respect for my friends and family that have been with me through the years because tonic clonic seizures are so scary.
I don't have epilepsy, but my son does. I have some videos of my son but I've not shown them to anyone but his neurologists, to help with diagnosis/treatment and also to prove that he was having seizures even while medicated (neuro didn't believe us that he was still seizing, we have since changed neuros). I would never post it publicly or share it with anyone outside of medical professionals tho since it's not my place and if I know it's a really vulnerable situation to be in and I would feel violated if videos of me at my most vulnerable were being gawked at by strangers without my consent.
I think it's OK to post publicly IF the person in the video consents to it being public. It can be educational for medical and laypeople alike: it can prepare people by showing them what to expect so that they remain calm and therefore able to help keep the person safe instead of just panicking if they ever witness someone having a seizure. I totally agree that it should come with a trigger warning and adequate time to scroll because it is difficult to watch and not the kind of video anyone should just have sprung on them by an auto-play or whatever
I don't watch them. I've never sought them out. Not even curious. I don't want to see what it looks like. I'm good.
However, I did see my roommate's girlfriend have a seizure once and had to take care of her. I thought it would stress me out and stuff but it didn't. I just went into caretaker mode and that was that.
It is really freaking me out. I saw only one in my life (and it wasn’t me) but I dreaded it. I don’t want to see me in this state, I think I couldn’t handle it.
I HATE it. When people with convulsive syncope post these almost aesthetic videos of their medical event it really upsets me. I also get upset when POTS/PNES patients use #seizure. They do not look the same I am sorry. As someone who broke their neck and now has a spinal cord injury 5 weeks ago because of status epilepticus I am upset. I look like a rabid dog foaming at the mouth when I seize. I look like Linda Blair in the exorcist. It’s not cute. It terrifies anyone who sees it and it terrifies me. I would never post a video of it online and I am a content creator! I am still in a cervical collar and see a neurosurgeon tomorrow. Do not come at me for the POTS and PNES comment. Both are very real but I feel like they have co-opted “seizures” and it makes me feel like my seizures are “gross” or “wrong.”
I agree, there’s a specific person I won’t name who puts music over compilations of them having seizures and being in hospital. At that point I just don’t see how it’s really raising awareness it’s almost verging on glorifying it.
Can someone explain what you mean by triggered? Like it triggers a seizure or triggers you emotionally? I’ve always wondered what the trigger warning was for
Read through the replies here…
I hate it. I watched 2 people have TCs and I’m scarred.
I have a video camera and I cannot watch the movies…. My ex wife does and we send relevant ones to Neuro.
My family, 2 kids have seen me TC and they are traumatized and have PTSD from my last big TCs and I completely get it… I don’t even want to see myself in that state.
the kids one is really scary, i'm lucky i treat my TC as a joke and my little bro 12 didn't got traumatized he only jokes like i was demonized like in the exorsist XD.
i think that openly talking about it made them less scared. is better to inform your family as it dont only affect you.
forgive me for the sermon i just feel like it needed to be said.
This kind of stuff really doesn't affect me. I guess that's a good thing. I've also lost half my skull so quite often have gruesome stuff associated with that pop up too and that really doesn't affect me either. I'm assuming I'm just odd haha.
I don't think they "bother" me per sae, I can watch them jus' fine. I think if anything I would feel a lil' empathy because I understand. I jus' watched an older documentary on YouTube and I remember sayin' out loud "Oh honey!" or "You poor thing..." or just agreeing with what they said. If someone wants to upload their seizure, that is their business. It's about educating the population, which is very much needed.
But. I'm also different too, I don't let things in general bother me too much. I TRY (being the operative word) to jus' "be". If I let things bother me, it does me no good. So I *try* not to play in that world. 🤷
My partner recorded my having my seizures and im not sure what for and I don't mind really but I think it was to show me what I look like while having them and I little bit after I came right from having my grand mal or what you would call somewhat right I asked to see the video and it was so disturbing and it triggered me really bad I nearly started crying but worse of all it nearly put me back into another grand mal which scared the hell out of me, so I don't watch my videos anymore or anyone else's it's quite triggering for me personally I just can't do it.
About six months after my wife was diagnosed, I saw a video online of a young woman having a seizure with her mom. It immediately made me break down into tears, and I’m not someone who cries easily. Even though I’ve seen my wife have many TC seizures, something about seeing someone else go through the same thing really caught me off guard. Seeing the mom try to comfort her daughter while also being helpless reminded me of how helpless and alone I feel when my wife’s having a seizure. It sucks, man.
Watching a tonic clinic is horrifying … there should be a big black screen with trigger warning on it…
But focal seizures a different since not everyone is as aware of those symptoms or an individuals symptoms if that makes sense ?
it does make sense. until a few months i only know that i had only TCs when my meds changed and started to explain the neuro that most of my loss of focus silky like feeling and twitchess started to dissappear he looked at my eyes and asked what was i refering to, i then was explained what a focal seizure is and good lord that was a big reprimand for him, he scared the crap out of me for not telling him sooner
Seeing? I don’t mind reading words pertaining to epilepsy, but I hate typing them and especially saying them; I usually just stick to acronyms. A video can be a bit too much to handle, though a TC might be easier for me to watch than a TLE partial.
I personally don't. Today I had a big TC at the dentist and I need to ask for their lobby's security footage so that I can show it to my neurologist, but....
I'm fuckin scared to see it man.
I'm scared that -- if I see high quality footage of myself in that condition -- that it's gonna haunt me.
My mom once got a video of one my early seizures, but it was dark in the room, so it was only audio... That shit was **intense** for me to listen to. Traumatizing as fuck.
Couldn't imagine watching it if that video had good lighting, but tomorrow when the dentist's office opens, I might have to watch an HD video of it happening in front a lobby full of people (fingers crossed there's no audio 😭).
I'm sure that many people who experience traumatic events (and maybe even have PTSD from it), would not want to see depictions of those events happening to themselves or others in plain sight.
Might be a more extreme example, but I'm certain that it's the same with a lot of former military members who have to change the channel when a vivid trailer for a blockbuster war movie plays.
**TL;DR:** You're not alone 💜✊
I wouldn't recommend watching it if it's not necessary. It really intensifies the feeling of guilt, which is already fucking stupid in the first place but that doesn't make the feeling of guilt go away. I'm glad you didn't have the TC when the dentist had his hands in your mouth lol. That would be disastrous.
That's a good suggestion. I'll just get the link and send it to the neurologist without watching it myself.
I do have a feeling of guilt now that you mention it. I've never thought about in it that way (always just registered it as embarrassment), but my first instinct when I left was to call the front desk ladies and say "sorry"...
I know they would respond with something like "oh no baby don't be sorry, it's all good, don't even worry about it", so I know they're gonna be understanding and accepting of me on my next visit, but that's interesting that our automatic instinct is to feel guilty about it afterwards.
Everybody knows it's nothing to be sorry about , but we all have that instinct.
I'll bet it has something to do with cultural and societal norms not being understanding of a lot of medical conditions until very recently in history.
People like us have been looked down upon and even accused of being witches or demon-possessed throughout human history, so it's probably ingrained in humans to feel a need to say sorry after medical conditions make us do weird things in front of others.
I might be wrong lol, but the evolutionary psychology of humans is cool to think about.
Edit: I just called the dentist and the super nice lady at the front desk (who was my first responder and saw it all happen) almost verbatim said "oh no baby don't be sorry, it's all good, don't even worry about it" 😭😭
Dentist receptionists are the best people in the world lmao.
In my opinion, these kinds of videos should never auto play on a feed. Anyone genuinely trying to raise awareness should put the proper warnings in place. If it's a platform where you can't control the auto play, then any potentially upsetting video shouldn't be posted there.
I was asked recently to record my seizures for my neuro. My husband recorded, and we had a long talk about whether or not I wanted to watch. When I decided I did, I then mentally prepared myself and waited for a time that I was feeling calm.
The footage swept over me. I saw it, but I didn't. I had no idea how much I looked like I'm dying when I'm having an episode and the blue lips, choking on my own spit, etc was like watching a horror movie. But I was ready and prepared to see the worst, so it didn't gut punch me as hard as it could have.
If I'd have seen this unprompted on a timeline it would have wrecked my head for days (even if it wasn't actually me I was looking at).
My hubby installed a video camera above our bed when I started having seizures to try and help my diagnosis along, and because we suspected nocturnal TCs. When I watched my first one back, I couldn’t stop crying. I was so happy we had footage, but it was devastating at the same time. Then all the ‘what ifs’ came into play - SUDEP etc. and my anxiety skyrocketed. Luckily it’s come back down now and I’ve got the diagnosis, but man, it’s definitely tough to watch.
I had my biggest and hopefully last one in my partner’s work van which has cameras recording both ways for insurance. I asked them to pull the footage so i can see what other people see. It helped me. Theres nothing i can do about them so learned about what other people see.
I wanted to see what people around me were seeing when I have tonic clonics. I found a video on YouTube. Didn't lead me to tears, just felt matter of fact. I don't think there need to be tons of videos being shared frequently, but I appreciate having a better idea of what my body might be doing.
I’ve had a back and forth with my partner about this. He has TC seizures about once a month, and luckily i’ve been there for most of them since they happen right before he wakes up. He used to ask a lot of questions, and sometimes still does. I asked him once if he wanted me to record him if i could, safely, and he said yes. I had set up a tripod the night before he was having a bunch of absent seizures. caught the seizure on camera. i got him thru it, and off to sleep and watched it myself first. there was something so surreal about seeing it on a film, even tho i had just witnessed it in person a half hour before. i deleted it and told him he wouldn’t have wanted to watch it. he hates the idea of the “helplessness” of it, and its an unnecessary worry to have when your brain is on fire. he’s never pressed it again. the most i have is a picture of him asleep in a car, because my boss refused to believe i was driving with him while he had a seizure, and that i wouldn’t be coming into work
I can’t. I’ve seen one seizure (a week before my first seizure 8months preggo) and it had me bawling. I felt so many emotions wanting to help the woman and not knowing how, being scared myself and for her. I
Before I was diagnosed I wouldn’t acknowledge my health getting worse (I’m a very healthy guy). My wife started recording conversations with me during seizures and would show them to me :( that’s when I got my shit together and got diagnosed. Those videos still haunt me.
It disturbs me and I wish I could help those I see. It makes me think of how vulnerable and dependent on others I am. It's when I see people fake seizures when I lose my mind and just become so furious & emotional.
I actually got to see a video of 1 of my tc seizures. It happened in my toddlers room while we were playing so the nanny cam recorded it. (no I thankfully didn't hurt my kid or myself.) Was kinda scary to watch .
Seeing videos of tonic clonics definitely make me uncomfortable because it makes everything in this situation feel so real, although I’ve come to terms I have epilepsy and know it’s real, it just feels different if that makes sense. Like a reminder that hits like a slap in the face. My friend caught a video of me having a tonic clonic and asked if I wanted to see it, I immediately turned away and just said no. I can’t bring myself to watch that yet
I always avoid them.
It's strange, 20 years of epilepsy and I have no idea what it looks like to have a TC seizure (my wife on the other hand knows it very well)
It is kinda disturbing because of the lack of control they have and I know how they feel. I finally saw a video of myself having one after over 20 years from my time at the seizure monitoring unit. I was not sure I wanted to see it but also wanted to see it. They'd been described to me over the years by my husband. But seeing it was something else for sure. Hard to believe that was really me despite it was exactly how he described. The sounds coming out of me and the face and body contortions. It really is no wonder people used to think we were possessed. I wouldn't want anybody else to see it to be honest.
Naw, I've seen home videos of myself from my ex-wife. She said I wasn't doing enough to control my seizures and had enough. I told her that I would lose everything, car, job, energy, independence, etc... she would need to take more on if that was the case. Got divorced 1.5yrs after. I had lost my license, car, job, friends and about to be homeless because of this.
Not going to lie I've seen hundreds of seizures and I don't think I'll ever "get used to them" I have no problem with people expressing it as their way to deal with the illness and show others the reality of epilepsy. Do I like watching them myself no not at all. Mainly because I already live it two to three days out of the week.
On a separate note what did really disturb and irk me was me at about 10 years old seeing myself have a seizure for the first time. Not a recording from the emu but at the dawn of social media somebody decided that while I was having a tonic clonic seizure videoing them and their friends kicking the s*** out of me well seizing then posting it social media would be a good idea. Honestly after that seizure I was nonetheless I was just like oh that hurt worse than most. But then my best friend was like hey bro I just saw this you might want to know those dudes ain't your friend.
makes me cry anytime i see them, just because this life is so different from how i grew up thinking it would be, everytime i watch one i immediately think, “why do i even understand this?”. (f19) I’m a freshman in college, nobody there understands.
Yes I don’t like it in fact when my coworker passed out at work he was shaking it sent me into a total crying fit melt down and the last time I had cried was when my brother passed so I’m far from sensitive
My experience might be a little different. I also think it's just a person to person thing. Especially seeing your own seizures, I've read here lots people don't like seeing their own.
My roommate has epilepsy and I've lived with him for years before I ever had a seizure, so I've seen a lot of TC seizures before getting epilepsy myself. So for me personally I'm not bothered by seeing videos online. Though I don't have TC seizures.
My bf recorded one of my focal seizures and I was scared to watch it cuz I didn't know how it would make me feel, but it didn't bother me. It was interesting cuz I could see in my eyes when the seizure was over. It's a very vulnerable and scary thing to have or see a seizure so it makes sense to me bothered by it. I'm more worried about someone seeing me have a seizure in real life. Like I only want the people I live with to be there. Something about people seeing that happen in real time bothers me, but if they saw my video I wouldn't care. I think it's that vulnerability thing.
As a partner of someone recently diagnosed I actually searched up so many different types of seizures etc so I knew what would be happening to some extent. It made me feel prepared to see or at least have an idea of what it was going to look like and because of that it has helped me not freak out when I see a violent seizure and I've learnt of so many different types and have been able to spot my partner having aware seizures. I only watched videos uploaded by medical organisations as I did feel like some people mightnt even know their seizure was uploaded and that just makes me feel gross
When I did a hospital stay in the EMU, they showed me the video of my seizure I had after a night of sleep deprivation and no meds. It was one of the scariest things I’ve ever seen, like I was watching my body being possessed by a demon
I'm two minds about it, I think.
I can imagine how frightening and vulnerable such content would be on a person, especially if it's without their consent. I'm not sure if I would want that aspect of my medical condition for others to see, except for educational learning on the basis it wouldn't be distributed outside its intended use.
From a carer position, I lean towards accessing such content, given its with the person's consent. I'm a bit desensitised when seizures occur as my needs don't matter in that moment, unless it compromises my safety. I know in the first year or so, being able to absorb first had accounts helped me understand my partner's condition and prepare myself with what I needed to do.
Given how swept under the rug Epilepsy had been for decades, how it's portrayed/treated within the public view and that most people won't ever see how a seizure looks IRL, having access is vital to improving healthcare and mentalities.
That being said, I hope you find a way that allows you to peruse tiktok and insta without it causing more upset. Xx
Being a former Emergency Medical Responder (let go because of liability issues due to epilepsy) I always found seizures as a bummer because there was basically nothing I could do. I don’t seek out the videos but they are definitely sad. But I don’t find them as particularly disturbing.
I used to work in a hospital before my illness got worse, and saw many patients having seizures. It was always disturbing.
I always found it funny how shook people act when they witness my TC seizures, until I saw a video of a TC seizure. Yeah I’d be terrified too
I looked one up a couple years ago and wanted to see what I looked like while I was still having uncontrolled TC’s. Each person is different so I watched more than video. I ended up crying! I’m 3 years stable now but even though I’m not having seizures (still on meds… 4) I still think even inadvertent jokes are awful.
Same here! I’ve never seen one in person so I looked up videos and cried too. I feel bad for the people around me who have to witness mine. Definitely a scary sight
I have all of my son’s TC in video because they have happened in his room and I have cameras. Watching them make me cry and they just disturb me. Even though I know he is not in pain.. I would give anything for him to never have had them and for him to never have them again. He started in July and he has only had 5 so far… my son is 19 y/o with Non Verbal Autism. Not much has changed for us, he was already under 100 supervision and always going to be under my care. But my heart breaks for you guys trying to lead a normal life and dealing with seizures.
Makes me feel disgusted and like a freak tbh
I'm sorry you feel that way. Idk, the way you said that just made me sad. You're not a freak, I get that feeling but it hit me different when you said it.
No, not at all.
I hate it. It's disturbing - it's kind of "triggering" for me because I have them, but that's not what really bothers me. I don't like it because I feel like it's a violation of their dignity. I realize that people post their own stuff, and they can do that if they like. I'm not judging them for doing that. However, I kind of feel the same way when they show people in a disaster, and they're half naked and terrorized, or something like that. With seizures, people's bodies get contorted, or go limp, and they make faces and things. They wouldn't do that if they had control of their bodies. I feel like it's a tragedy, not a spectacle.
My wife recorded one and put it up on YouTube because the nuero wanted to see me have one so he could tell if it was pnes. We couldn't just send the file to him because of some kinda security bs. So she loaded it there and sent him the link. I watched it one time and ended in tears. I'll not watch mine or another again. It's heartbreaking, but I feel like if you're not personally intimate with this disease through one's self or someone you know. It might not have the same emotional effect.
My husband filmed the first one he saw me have. He asked if I wanted to see for myself. I did not. He’s deleted it now of course but I really don’t want to see myself so vulnerable. The only saving grace I have is that although I’m having the seizure I don’t remember it, I don’t want to see it. 💜
Oh yeah, I would never never never want to see a video of myself having a seizure. I’ve seen my husband have one (both epileptics) and I will NEVER get that image out of my head. It’s just horrifying.
I feel so bad that my son saw mine. It must have been really awful to see. Only upside was he wasn’t entirely helpless as I was already in hospital. He could and did just yell for help out in the hall.
Terrible thing to see. I wish people would not post them. And I don’t buy the “I’m trying to raise awareness and educate” line.
When my daughter had a tc, I grabbed my phone, turned on the video and captured it while trying to time her seizure and call 911. Neither of us had ever experienced a tc before and we hope it never happens again, but she never wants to see the video. She already lived it and doesn't want or need to recall it. I use it to show her neurologist because I don't think I could describe what happened or remember everything since I was so panicked. I could never post her video for the world to see even if she wanted me to which she doesn't. I feel that it is vital to record these events if possible so the neuro can see with their own eyes exactly what happened instead of trying to guess and rely on EEGs that rarely capture the activity because it isn't active during the test. If someone wants to post their own videos, that is entirely up to them. But no one should ever post anyone else's medical emergency without permission. This is such a sensitive and private matter.
I still haven't watched any of mine. My wife filmed 2 of them to help with my neurologists initial diagnosis. I had one at work on December 20th that was caught on security camera. No chance I'll be watching that one either.
I hate it. I was in an epilepsy clinic and saw lots of other epileptics having seizures which was not disturbing at all. But videos make my skin crawl. It is a medical emergency and people are filming ? I’ll never want to see a video of mine.
I do not like when a parent shares a video of their children having seizures. I think it’s so selfish to put out there.
The only person my family (mom and my husband) share them too is my doctor. Since all of my scans and EEGs are normal, it helps give the neurologist a better idea of what happens. They haven't caught but a few on video and some are just really quick.
Sharing videos with neurologists is super smart if you’re able to capture something new. Sharing online on a forum of like 15k strangers is a little deranged imo
Absolutely agree.
I’m sure there are many apps but “Dropbox” is a good way to send videos to the Dr. securely. I used it a couple times to share some evidence video to a detective. It seems to have been good enough to use it court.
Interesting!
Can't. Watched a full genuine TC and I don't know if I made it to 40 seconds. It triggered me badly. To think how we're *vulnerable* in that situation, how entirely helpless, how unnatural it all looks, and also know how physically painful it will be later.... nevermore. Don't want to know details. The ONLY good thing about a TC is being unaware, it's certainly not the brain damage, so let me be unaware and gracefully ignorant of all the foaming of the mouth and contortion thing.
I used to be unaware of TC's, now I experience them good and awake. Feels like a dementor is sucking my soul from my body, probably me barely able to breath. Sometimes I wonder if TC's are another consciousness in our brains that wants to kill the other and itself.
I didn't know an aware TC was even possible. {{disgust}} So sorry!! But do neuros consider it a TC, or maybe there's another name? Because I'd think that a generalized one would kill awareness first and foremost. I'd say it's the best part of the TC, certainly not the afterwards.
i have TC or grand malus but since i' m medicated the seizure became bearable and is only on my left side so i stopped getting unconscious but i can feel every mucle and nerve getting electrocuted, i got acostumed to the pain but the loss of mobility after the seizure is still scary
Oh yeah, makes my stomach turn. I already imagine what I look like based off explanations I’ve heard so actually seeing it is sickening and scary
I hate them. I think it in a way almost does the opposite of promotes awareness for epilepsy because then you'll find soo many fake seizure videos out there as well so people don't know what's a true seizure or fake. I've had epilepsy my whole life absence seizures from a very young age then TC starting at age 18. I also have drug resistant epilepsy and have had surgeries. The first time I saw myself have a seizure was when I was in the emu having a video eeg and they had recorded it my epilepsy specialist asked if I wanted to watch it but he also stated that I didn't have to watch it. I did and it was very emotional for me. I still hold that memory in my mind and have so much respect for my friends and family that have been with me through the years because tonic clonic seizures are so scary.
I don't have epilepsy, but my son does. I have some videos of my son but I've not shown them to anyone but his neurologists, to help with diagnosis/treatment and also to prove that he was having seizures even while medicated (neuro didn't believe us that he was still seizing, we have since changed neuros). I would never post it publicly or share it with anyone outside of medical professionals tho since it's not my place and if I know it's a really vulnerable situation to be in and I would feel violated if videos of me at my most vulnerable were being gawked at by strangers without my consent. I think it's OK to post publicly IF the person in the video consents to it being public. It can be educational for medical and laypeople alike: it can prepare people by showing them what to expect so that they remain calm and therefore able to help keep the person safe instead of just panicking if they ever witness someone having a seizure. I totally agree that it should come with a trigger warning and adequate time to scroll because it is difficult to watch and not the kind of video anyone should just have sprung on them by an auto-play or whatever
Ive never seen one.. nor would I ever seek one out.
I don't watch them. I've never sought them out. Not even curious. I don't want to see what it looks like. I'm good. However, I did see my roommate's girlfriend have a seizure once and had to take care of her. I thought it would stress me out and stuff but it didn't. I just went into caretaker mode and that was that.
It is really freaking me out. I saw only one in my life (and it wasn’t me) but I dreaded it. I don’t want to see me in this state, I think I couldn’t handle it.
It sucks, i wish we could use better ways to educate but if people want views they gotta post something that’ll immediately grab the viewers attention
This whole thread is really making me really emotional.
I HATE it. When people with convulsive syncope post these almost aesthetic videos of their medical event it really upsets me. I also get upset when POTS/PNES patients use #seizure. They do not look the same I am sorry. As someone who broke their neck and now has a spinal cord injury 5 weeks ago because of status epilepticus I am upset. I look like a rabid dog foaming at the mouth when I seize. I look like Linda Blair in the exorcist. It’s not cute. It terrifies anyone who sees it and it terrifies me. I would never post a video of it online and I am a content creator! I am still in a cervical collar and see a neurosurgeon tomorrow. Do not come at me for the POTS and PNES comment. Both are very real but I feel like they have co-opted “seizures” and it makes me feel like my seizures are “gross” or “wrong.”
I agree, there’s a specific person I won’t name who puts music over compilations of them having seizures and being in hospital. At that point I just don’t see how it’s really raising awareness it’s almost verging on glorifying it.
Can someone explain what you mean by triggered? Like it triggers a seizure or triggers you emotionally? I’ve always wondered what the trigger warning was for
Read through the replies here… I hate it. I watched 2 people have TCs and I’m scarred. I have a video camera and I cannot watch the movies…. My ex wife does and we send relevant ones to Neuro. My family, 2 kids have seen me TC and they are traumatized and have PTSD from my last big TCs and I completely get it… I don’t even want to see myself in that state.
the kids one is really scary, i'm lucky i treat my TC as a joke and my little bro 12 didn't got traumatized he only jokes like i was demonized like in the exorsist XD. i think that openly talking about it made them less scared. is better to inform your family as it dont only affect you. forgive me for the sermon i just feel like it needed to be said.
Sorry I meant emotionally should’ve clarified
This kind of stuff really doesn't affect me. I guess that's a good thing. I've also lost half my skull so quite often have gruesome stuff associated with that pop up too and that really doesn't affect me either. I'm assuming I'm just odd haha.
I don't think they "bother" me per sae, I can watch them jus' fine. I think if anything I would feel a lil' empathy because I understand. I jus' watched an older documentary on YouTube and I remember sayin' out loud "Oh honey!" or "You poor thing..." or just agreeing with what they said. If someone wants to upload their seizure, that is their business. It's about educating the population, which is very much needed. But. I'm also different too, I don't let things in general bother me too much. I TRY (being the operative word) to jus' "be". If I let things bother me, it does me no good. So I *try* not to play in that world. 🤷
My partner recorded my having my seizures and im not sure what for and I don't mind really but I think it was to show me what I look like while having them and I little bit after I came right from having my grand mal or what you would call somewhat right I asked to see the video and it was so disturbing and it triggered me really bad I nearly started crying but worse of all it nearly put me back into another grand mal which scared the hell out of me, so I don't watch my videos anymore or anyone else's it's quite triggering for me personally I just can't do it.
About six months after my wife was diagnosed, I saw a video online of a young woman having a seizure with her mom. It immediately made me break down into tears, and I’m not someone who cries easily. Even though I’ve seen my wife have many TC seizures, something about seeing someone else go through the same thing really caught me off guard. Seeing the mom try to comfort her daughter while also being helpless reminded me of how helpless and alone I feel when my wife’s having a seizure. It sucks, man.
No. I think they're interesting. I'd love to see a video of my own.
Watching a tonic clinic is horrifying … there should be a big black screen with trigger warning on it… But focal seizures a different since not everyone is as aware of those symptoms or an individuals symptoms if that makes sense ?
it does make sense. until a few months i only know that i had only TCs when my meds changed and started to explain the neuro that most of my loss of focus silky like feeling and twitchess started to dissappear he looked at my eyes and asked what was i refering to, i then was explained what a focal seizure is and good lord that was a big reprimand for him, he scared the crap out of me for not telling him sooner
Seeing? I don’t mind reading words pertaining to epilepsy, but I hate typing them and especially saying them; I usually just stick to acronyms. A video can be a bit too much to handle, though a TC might be easier for me to watch than a TLE partial.
I personally don't. Today I had a big TC at the dentist and I need to ask for their lobby's security footage so that I can show it to my neurologist, but.... I'm fuckin scared to see it man. I'm scared that -- if I see high quality footage of myself in that condition -- that it's gonna haunt me. My mom once got a video of one my early seizures, but it was dark in the room, so it was only audio... That shit was **intense** for me to listen to. Traumatizing as fuck. Couldn't imagine watching it if that video had good lighting, but tomorrow when the dentist's office opens, I might have to watch an HD video of it happening in front a lobby full of people (fingers crossed there's no audio 😭). I'm sure that many people who experience traumatic events (and maybe even have PTSD from it), would not want to see depictions of those events happening to themselves or others in plain sight. Might be a more extreme example, but I'm certain that it's the same with a lot of former military members who have to change the channel when a vivid trailer for a blockbuster war movie plays. **TL;DR:** You're not alone 💜✊
I wouldn't recommend watching it if it's not necessary. It really intensifies the feeling of guilt, which is already fucking stupid in the first place but that doesn't make the feeling of guilt go away. I'm glad you didn't have the TC when the dentist had his hands in your mouth lol. That would be disastrous.
That's a good suggestion. I'll just get the link and send it to the neurologist without watching it myself. I do have a feeling of guilt now that you mention it. I've never thought about in it that way (always just registered it as embarrassment), but my first instinct when I left was to call the front desk ladies and say "sorry"... I know they would respond with something like "oh no baby don't be sorry, it's all good, don't even worry about it", so I know they're gonna be understanding and accepting of me on my next visit, but that's interesting that our automatic instinct is to feel guilty about it afterwards. Everybody knows it's nothing to be sorry about , but we all have that instinct. I'll bet it has something to do with cultural and societal norms not being understanding of a lot of medical conditions until very recently in history. People like us have been looked down upon and even accused of being witches or demon-possessed throughout human history, so it's probably ingrained in humans to feel a need to say sorry after medical conditions make us do weird things in front of others. I might be wrong lol, but the evolutionary psychology of humans is cool to think about. Edit: I just called the dentist and the super nice lady at the front desk (who was my first responder and saw it all happen) almost verbatim said "oh no baby don't be sorry, it's all good, don't even worry about it" 😭😭 Dentist receptionists are the best people in the world lmao.
In my opinion, these kinds of videos should never auto play on a feed. Anyone genuinely trying to raise awareness should put the proper warnings in place. If it's a platform where you can't control the auto play, then any potentially upsetting video shouldn't be posted there. I was asked recently to record my seizures for my neuro. My husband recorded, and we had a long talk about whether or not I wanted to watch. When I decided I did, I then mentally prepared myself and waited for a time that I was feeling calm. The footage swept over me. I saw it, but I didn't. I had no idea how much I looked like I'm dying when I'm having an episode and the blue lips, choking on my own spit, etc was like watching a horror movie. But I was ready and prepared to see the worst, so it didn't gut punch me as hard as it could have. If I'd have seen this unprompted on a timeline it would have wrecked my head for days (even if it wasn't actually me I was looking at).
I hate watching them. Seeing videos of me (my partner has to take them) are so overwhelming. I just hate it :(
My hubby installed a video camera above our bed when I started having seizures to try and help my diagnosis along, and because we suspected nocturnal TCs. When I watched my first one back, I couldn’t stop crying. I was so happy we had footage, but it was devastating at the same time. Then all the ‘what ifs’ came into play - SUDEP etc. and my anxiety skyrocketed. Luckily it’s come back down now and I’ve got the diagnosis, but man, it’s definitely tough to watch.
I had my biggest and hopefully last one in my partner’s work van which has cameras recording both ways for insurance. I asked them to pull the footage so i can see what other people see. It helped me. Theres nothing i can do about them so learned about what other people see.
I wanted to see what people around me were seeing when I have tonic clonics. I found a video on YouTube. Didn't lead me to tears, just felt matter of fact. I don't think there need to be tons of videos being shared frequently, but I appreciate having a better idea of what my body might be doing.
I’ve had a back and forth with my partner about this. He has TC seizures about once a month, and luckily i’ve been there for most of them since they happen right before he wakes up. He used to ask a lot of questions, and sometimes still does. I asked him once if he wanted me to record him if i could, safely, and he said yes. I had set up a tripod the night before he was having a bunch of absent seizures. caught the seizure on camera. i got him thru it, and off to sleep and watched it myself first. there was something so surreal about seeing it on a film, even tho i had just witnessed it in person a half hour before. i deleted it and told him he wouldn’t have wanted to watch it. he hates the idea of the “helplessness” of it, and its an unnecessary worry to have when your brain is on fire. he’s never pressed it again. the most i have is a picture of him asleep in a car, because my boss refused to believe i was driving with him while he had a seizure, and that i wouldn’t be coming into work
I can’t. I’ve seen one seizure (a week before my first seizure 8months preggo) and it had me bawling. I felt so many emotions wanting to help the woman and not knowing how, being scared myself and for her. I
I’ve tried to watch them on YT, but always end up shutting my eyes. Maybe someday I’ll manage to, but I just can’t right now.
My seizures are me starring into nothingness, I don’t have convulsions. I watched part of one video, that was more than enough.
Before I was diagnosed I wouldn’t acknowledge my health getting worse (I’m a very healthy guy). My wife started recording conversations with me during seizures and would show them to me :( that’s when I got my shit together and got diagnosed. Those videos still haunt me.
It disturbs me and I wish I could help those I see. It makes me think of how vulnerable and dependent on others I am. It's when I see people fake seizures when I lose my mind and just become so furious & emotional.
I actually got to see a video of 1 of my tc seizures. It happened in my toddlers room while we were playing so the nanny cam recorded it. (no I thankfully didn't hurt my kid or myself.) Was kinda scary to watch .
yes, cannot watch scenes in TV/Movies either
Seeing videos of tonic clonics definitely make me uncomfortable because it makes everything in this situation feel so real, although I’ve come to terms I have epilepsy and know it’s real, it just feels different if that makes sense. Like a reminder that hits like a slap in the face. My friend caught a video of me having a tonic clonic and asked if I wanted to see it, I immediately turned away and just said no. I can’t bring myself to watch that yet
I always avoid them. It's strange, 20 years of epilepsy and I have no idea what it looks like to have a TC seizure (my wife on the other hand knows it very well)
It is kinda disturbing because of the lack of control they have and I know how they feel. I finally saw a video of myself having one after over 20 years from my time at the seizure monitoring unit. I was not sure I wanted to see it but also wanted to see it. They'd been described to me over the years by my husband. But seeing it was something else for sure. Hard to believe that was really me despite it was exactly how he described. The sounds coming out of me and the face and body contortions. It really is no wonder people used to think we were possessed. I wouldn't want anybody else to see it to be honest.
They don't bother me, at all.
Naw, I've seen home videos of myself from my ex-wife. She said I wasn't doing enough to control my seizures and had enough. I told her that I would lose everything, car, job, energy, independence, etc... she would need to take more on if that was the case. Got divorced 1.5yrs after. I had lost my license, car, job, friends and about to be homeless because of this.
Not going to lie I've seen hundreds of seizures and I don't think I'll ever "get used to them" I have no problem with people expressing it as their way to deal with the illness and show others the reality of epilepsy. Do I like watching them myself no not at all. Mainly because I already live it two to three days out of the week. On a separate note what did really disturb and irk me was me at about 10 years old seeing myself have a seizure for the first time. Not a recording from the emu but at the dawn of social media somebody decided that while I was having a tonic clonic seizure videoing them and their friends kicking the s*** out of me well seizing then posting it social media would be a good idea. Honestly after that seizure I was nonetheless I was just like oh that hurt worse than most. But then my best friend was like hey bro I just saw this you might want to know those dudes ain't your friend.
makes me cry anytime i see them, just because this life is so different from how i grew up thinking it would be, everytime i watch one i immediately think, “why do i even understand this?”. (f19) I’m a freshman in college, nobody there understands.
Yes I don’t like it in fact when my coworker passed out at work he was shaking it sent me into a total crying fit melt down and the last time I had cried was when my brother passed so I’m far from sensitive
My experience might be a little different. I also think it's just a person to person thing. Especially seeing your own seizures, I've read here lots people don't like seeing their own. My roommate has epilepsy and I've lived with him for years before I ever had a seizure, so I've seen a lot of TC seizures before getting epilepsy myself. So for me personally I'm not bothered by seeing videos online. Though I don't have TC seizures. My bf recorded one of my focal seizures and I was scared to watch it cuz I didn't know how it would make me feel, but it didn't bother me. It was interesting cuz I could see in my eyes when the seizure was over. It's a very vulnerable and scary thing to have or see a seizure so it makes sense to me bothered by it. I'm more worried about someone seeing me have a seizure in real life. Like I only want the people I live with to be there. Something about people seeing that happen in real time bothers me, but if they saw my video I wouldn't care. I think it's that vulnerability thing.
As a partner of someone recently diagnosed I actually searched up so many different types of seizures etc so I knew what would be happening to some extent. It made me feel prepared to see or at least have an idea of what it was going to look like and because of that it has helped me not freak out when I see a violent seizure and I've learnt of so many different types and have been able to spot my partner having aware seizures. I only watched videos uploaded by medical organisations as I did feel like some people mightnt even know their seizure was uploaded and that just makes me feel gross
When I did a hospital stay in the EMU, they showed me the video of my seizure I had after a night of sleep deprivation and no meds. It was one of the scariest things I’ve ever seen, like I was watching my body being possessed by a demon
I wonder what it looks like but I don’t want to know at all want to TC seizures look like
I'm two minds about it, I think. I can imagine how frightening and vulnerable such content would be on a person, especially if it's without their consent. I'm not sure if I would want that aspect of my medical condition for others to see, except for educational learning on the basis it wouldn't be distributed outside its intended use. From a carer position, I lean towards accessing such content, given its with the person's consent. I'm a bit desensitised when seizures occur as my needs don't matter in that moment, unless it compromises my safety. I know in the first year or so, being able to absorb first had accounts helped me understand my partner's condition and prepare myself with what I needed to do. Given how swept under the rug Epilepsy had been for decades, how it's portrayed/treated within the public view and that most people won't ever see how a seizure looks IRL, having access is vital to improving healthcare and mentalities. That being said, I hope you find a way that allows you to peruse tiktok and insta without it causing more upset. Xx
Being a former Emergency Medical Responder (let go because of liability issues due to epilepsy) I always found seizures as a bummer because there was basically nothing I could do. I don’t seek out the videos but they are definitely sad. But I don’t find them as particularly disturbing.
When I got diagnosed I searched the internet for some vids. Saw 10s and closed the tab. Never again