I wrote this important thread, please read if you can and boost for visibility. 
Here's how to react if someone is having a generalized tonic-clonic seizure in front of you!
Different situations are taken into account to give as much info as possible.
If the person isn't alone and you're told the person is known for having seizures and you don't have anything to do except wait, don't do anything.
Personally, I'm stressed when someone stays because I hear noises even if I can't understand or identify the sounds, but it depends on everyone.
Don't panic and don't let people come close.
If the person is alone and doesn't have a medical safety helmet, your priority should always be to protect the head first.
Put a pillow or clothes under their head without holding it. If you don't have anything, put your hand on the ground to limit the damages. Once again, don't hold any part of the body!
Check if nothing's making the person suffocate and secure the space around them.
Look at their wrists asap to see if they have a bracelet. If they're epileptic, there's a chance they have one with instructions to follow and a number to call.
Really important element: look at what time it is precisely as fast as you can after protecting the head if it's been needed.
If nothing's indicated and the seizure lasts more than 5 minutes or if the person is hurt, call the ER immediately.
The recovery position is often the first thing people think about, but way often it's better not to do it. Here's why.
In my case, moving me on the side compresses my rib cage, preventing me from breathing and making the seizure last longer.
Don't forget that a chronically ill person often has underlying conditions.
Avoid stimulus as much as possible, as it's triggering seizures to lots of person and could make it last longer or begin a second seizure.
You have to know that many people don't faint during a seizure. So a simple gesture could been seen as an aggression attempt. Don't do any useless move.
If you see a store sign or something close with really bright colors or flashing lights, find a position so that your body can hide it and the person doesn't see it anymore.
It can eventually help prevent another seizure or make this one shorter. It's the most effective thing to do in this case.
It's easy to do, but most people don't think about it, so please keep this in mind!
A person having a seizure CAN'T swallow their tongue.
Lots of people believe this, yet it's not true and really dangerous.
You should NEVER put your fingers or anything else in their mouth!
Stay with them until the end of the seizure, without any other contact.
I know it's different for everyone, but in my case I just want to say that hearing stuff like "breathe, it's gonne be ok" is more stressful than anything. It doesn't help, I can't control.
Of course other people can find it reassuring, it really depends!
Anyway, if someone you know is dealing with seizures, ask them what's appropriate to do in case one happens while you're around.
It's always better to know in advance, if that's possible!
Then, when the seizure is done, don't try to make them get up asap.
That could lead to a new seizure, so be careful. They need time.
You can ask if they need anything, you just have to follow and respect what they say.
After a seizure, I stay down for a while, then my fiancee helps me sit a bit longer and then she helps me get up. Don't do it in a hurry.
If they're confused, help them get their landmarks back slowly.
If you see them falling again after standing up, try to accompany the fall to make it softer. Avoid any unnecessary or gripping move.
The priority always remains the head safety.
If the person is unconscious after the seizure, check their pulse and breathing.
If everything's ok, wait for a bit. If they don't wake up within ten minutes, call the ER if nothing else is indicated.
Important thing to know: after a seizure, many folks just fall asleep. A seizure is really exhausting.
If someone is having a seizure on the road, try calling out passerby to block the area where the person is until they're able to move by themselves.
Moving a person during a seizure is extremely dangerous and raises the risk of hurting them.
Don't do it unless it's vital (around a fire for example)
If you have to do it, you must be very cautious and move without any rough movement.
In general, you most likely won't need to call the ER. If the person is known for being epileptic / having some different kind of seizure and nothing unusual happened during this one, it's not necessary.
However, if it's their first seizure, it would be safer to see a doctor soon to check it up and make sure it's not a symptom of something else.
It's very important to know what to do during a seizure, because it can happen anytime, anywhere and to anyone.
Witnessing a generalized tonic-clonic eizure for the first time can be impressive.
That makes me think of one nurse at the sleep clinic.
She came into my room and put the lights on, which triggered 3 seizures. She's been crying a lot, holding my hand, telling me she didn't know what to do
and how sorry she was.
I understand that.
If I use this example, it's just to mention that at least since you read this thread, you won't make this kind of mistake.
So I'm mentioning it again: no physical contact and no stimulus in general during a seizure, don't hold any part of the body.
It wasn't her fault and I know she did her best, just saying in case she finds this thread!
To end this thread, I'm addressing those last post to my epileptic siblings, and other people having seizures.
In case you don't know about it, medical safety helmets exist and can be a relief. That's my case since I've started wearing mine a few weeks ago.
Lots of them exist, I'll write a thread about this specifically when I'll have the spoons. I bet you'll be surprised!
The only thing I can suggest otherwise is to get a bracelet with instructions and the phone number of the person you want people to call in case you're having a seizure.
Thanks for reading me, I hope it's been helpful!
Is this advice relevant for other types of seizures also?
Thank you.
@Testoceratops Thankyou for the tips! I have a couple questions though.
You say that securing the head is important and that many will have a bracelet with who to reach out to and such. But you also say no contact because that can worsen it. How do you chech the bracelet and secure the head without any physical contact? Or is it okay as long as it's for those two specific purposes?
I understand that blocking out stimuli with your body is good, however, say this is someone I don't know and it happens on the street or smth. Can it be frightening for you if I get close to you to block some of the movement of people in the background? Is that a good tradeoff? Should I state my intent, something like "I'm sitting close to block out stimuli until you've recovered"? This ofc assumes that you are able to block out stimuli by sitting close.
@reina You're welcome!
To answer your questions, you can secure the head without touching it. When there's a convulsion that makes the head go up, put the pillow or something at that precise moment. Or your hand put on the ground without holding or grabbing the head. Just let your hand down without moving it if there's no alternative.
For the bracelet, don't grab the arm but at least look
@reina to see if there's a bracelet. If it's unreachable, wait until the convulsions stop. You can try holding softly the bracelet to see if something is forbidden to do, but you can check the number after the seizure.
As for blocking other people in the area, it's a really good move. It's good to tell the person in case they can understand, make a short sentence and then do it
@reina So yeah announcing your intent is good, a few meters around the person seems good to me. People panicking are the ones that really shouldn't come closer, they're more likely to make the person panic or do something dangerous.
Thank you for caring, let me know if you have any other question. I'll happily answer!
@Testoceratops Ah, that makes a lot of sense! I haven't seen this happen before, so it didn't occur to me.
Thanks for sharing. I'll know be prepared in the event I should be there when smth like this is happening :)
@reina Awesome then! I'm glad to read that 😊
If you ever have any other question, I'll be there!
@Cyborgneticz Thank you! It's always good for me when an epileptic person agrees on this.
Same I can't breathe I'm always in apnea and can't swallow either. Thankfully nobody tried to make me drink, but I'm always with my fiancee on the phone when she can't come with me, so I put her on speaker if I start feeling weird or feel like I'm gonna fall. So she can tell people no nd come asap
@Testoceratops aah I have Lennox gastaut so no auras :(
It'd be nice, although now I have VNS so my seizures thankfully are way easier to manage
I'm glad you have that system with your fiancee! It's so essential to have people who can advocate because lord people don't know
@Cyborgneticz Thank you! I'm way reassured!
I'm glad to read that it's easier to manage now. Wish you could get what's needed for you!
@Testoceratops I bet!
I'm much better now. I used to have 15-30 absence seizures a day, 1 tonic clonic a week. Now with my implant I have maybe one or two absence seizures a year, one tonic clonic every few years. Headaches still around, but medical tech is truly remarkable. Went from not supposed to graduate highschool to getting a PhD!
@Cyborgneticz Awesome progress! I'm really happy for you!
I have a generalized tonic-clonic one almost every day or sometimes up to 4 in a single day, so that's exhausting.
Also I suffer from nocturnal epilepsy (it's localized, not generalized thankfully), approximately 3 to 4 seizures per night in general so I can't sleep correctly
@Testoceratops ty ty
Ugh Im sorry tonic clonics are so exhausting and painful. 3-4 a night sounds awful
I hadnt heard of nocturnal epilepsy before, it amazed me just how many variations of epilepsy there are
Brains are magical, in their own pain in the ass way
I hope you and your neurologist team find a treatment program that works for you 🤞
@Cyborgneticz Thanks a lot! I'm meeting an epileptologist on Tuesday, hopefully they'll be able to help! 🍀
Yeah nocturnal epilepsy doesn't seem to be really known, I'm gonna ask if anyone would be interested if I wrote a thread about it!
@Cyborgneticz I'm really sorry to read that you've been through this. Sending my support if you want some.
Can I send you a follow request or would that make you uncomfortable? Either way, I'll understand, so no worries or pressure!
@Testoceratops thx for that thread.
As a fmr. firefighter and someone who had withnessed and provided first aid in at least one case, it's reassuring to know that I did follow these things before I even knew them:
Just enshuring someone can't hurt their head and the space around them is pretty clear of obviously injuring stuff and just be next to them and calmly wait is the best strategy.
@Testoceratops I really think this should be taught as part of mandatory-made First Aid Courses as this is if not livesaving at least it's helping someone and reducing harm.
But yeah: Don't try to put things in peoples' mouths is important!
The one person I knew simply passed out and after a few minutes woke up, asked for what happened and a glass of water...
https://disabled.social/@Testoceratops/110697181898444676
I wrote this important thread, please read if you can and boost for visibility. :boost_ok: Here's how to react if someone is having a generalized tonic-clonic seizure in front of you! Different situations are taken into account to give as much info as possible.
@kkarhan I definitely agree with you about the First Aids Courses!
Thank you for taking the time to read this thread!
Usually, afterwards I immediately ask for a glass of water as well
@Testoceratops also like with any person passing out, letting them know by talking to them that one is taking care of them is vital.
It's something I larned as a firefighter: Just because a person seems unconcious or asleep doesn't mean they ain't aware of their surroundings and letting them know that someone is taking care and what they do is both calming everyone and also reducing stress.
@Testoceratops also I think it's important to listen to people on what they need.
Just like a friend once briefed me on what to do re: their diabetes and that in any case, one should always take a reading first with their portable blood sugar meter before doing anything since hypoglykemia and hyperglykemia have the exact same symptoms.
Content warning: How to react if someone is having a generalized tonic-clonic seizure in front of you, part 18 (last part)
@Testoceratops I also thank you for for providing everyone here with that info.
Because sadly that is not part of regular first aid courses, despite it being more common than dealing with cut-off limbs or fingers in terms of first aid and emergency calls.
Content warning: How to react if someone is having a generalized tonic-clonic seizure in front of you, part 18 (last part)
@Testoceratops I think it's vital to raise awareness.
Cuz small things like this can literally save lives.
Just like countless lives got saved due to CPR and other first aid being applied.
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