have any of you who have seizures seen someone else, in real life, have a TC seizure?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

petero

New
Messages
1,722
Reaction score
0
Points
0
I've seen videos online, but never in real life.
I wonder what it would be like.
 
someone has watched me have a seizure

alright, so here's where it gets weird... you have a seizure. I look over and there are three police cars with lights going everywhere. You wind up drooling on your self. As it sounds like you're having difficulty breathing or something, I roll you onto your side. At some point, you start moving by yourself and go into a hunch over, but upright...



I started asking you who I was and where you were... you didn't look like you understood where you were or why I was asking. Eventually you started talking to me, but not in sentences but more like in single word answers. At some point, you took your shoes off. I had some napkins from the folks at Dave's so you could clean up and kept trying to hand them to you so you could clean up or dry off anything that needed it. I guess you thought you were in your room or something because you undid your belt buckle and it seemed like you were about to take off your pants... my brain went into damage control mode and I distracted you and got you back to where your stuff was. Eventually, you started to get a clue and got your shoes on and stuff together and we started walking down the street... Amanda called me back as we were walking down the street towards the fountain on the dave's side. She told me sometimes it takes a little while... You seemed about 90% there when we were almost to chick-fil-a, and I'd say about 100% by the time we got to j clyde.
 
>> I guess you thought you were in your room or something because you undid your belt buckle and it seemed like you were about to take off your pants... <<

lol
this reminds me of something I can recall about that sort of thing - getting very stubborn to do some sort of action (usually it's falling back asleep that the paramedics don't like) - and the action is like, the most important thing in the world at that moment - a very childlike stubbornness I can recall about my experiences postictal - I think I've had similar automatism type of motions too - most recent seizure I recall something about needing to shuffle through my bag to get something or other - maybe it was a cigarette
 
I've seen one of my clients who has complex partials have a seizure before and plenty of absences but never a tonic clonic, just hours afterwards.
 
I don't remember the events now, but as a child I witnessed my brother having generalized/ tonic clonic seizures.
I also have a video given to me from my hospital stay for intracranial monitoring. It is bizarre to see myself having full seizures. I don't think I would ever want to see the seizures when I am not fully aware of my actions but am walking around zombie like.
 
I've never seen or met someone with epilepsy in real life (not knowingly)...aside from myself...which doesn't really count.
 
you have to hang out in a e.r. on the right night,
hung out with 7-8 other people in triage with epilepsy one night, we traded stories and ordered a pizza,

they were kinda afraid because they thought if one of us had a seizure, the rest of us would from stress, but they also were not feeding us back there.

I have met a surprising number of people to in my daily life who have had seizures, but I dont think with full blown severe epilepsy.
 
Last edited:
I think it would have freaked me out! I've never seen anyone have one, but now that I've been diagnosed myself and know what to do and look for, I'd like to think I'd keep my cool.

I hope that's not offensive to anybody. Just being honest. I was never exposed to it growing up, and we all know it's not discussed with the kids in school.
 
I think i get what you mean cathyann. I have to leave the room or change the channel if there is someone on tv having a seizure. It makes me feel a little sick in my stomach purely because i imagine "Is that what i look like?" However, i work in a job where a good number of our clients have epilepsy and when they have a seizure i can deal with it, make sure they're ok, safe and looked after. When you're there and it happens it's easy to deal with.

And then i run outside for a smoke to calm down. I hope i haven't offended anyone either.
 
I've had epilepsy all my life (just over 41 yrs) and seen quite a few people have seizures.
 
I don't remember the events now, but as a child I witnessed my brother having generalized/ tonic clonic seizures.
I also have a video given to me from my hospital stay for intracranial monitoring. It is bizarre to see myself having full seizures. I don't think I would ever want to see the seizures when I am not fully aware of my actions but am walking around zombie like.

I have a feeling there are videos of myself like this I'm not sure I'd want to see either, when I was in the ER.
But the stories I've heard about it don't add up to what I recall, which has given me a bad taste in my mouth about the entire thing, that hasn't gone away. I try to just let it go but it has been impossible so far. Like a nightmarish version of what I imagine the movie "The Hangover" to be like (I've never seen it).
 
I have seen my Son have T/C. 1st very frightening, one then learns when to comfort or pick up the 'red' phone...It’s the alone ones that are a big worry. With new health and safety laws, public awareness on how to manage/help in case of seizure is growing slowly, but not fast enough.
 
I have seen two,both in the same year,with me been seventeen years and never seen one.

The first one was a tonic,all his mates were screaming an shouting down their phones at the ambulance services.I got him comfortable put my jacket under his head then explained to one of his friends he would be disorintated and need to be taken home as he came out of his seizure quite quick.

The second one was in my house,basicly did the same as above but phoned for an ambulance as it was her first seizure,also a tonic.

I can certainly now see why people freak out now that i have seen it from a diffirent perspective,heres to seen no more seizures its bad enough having epilepsy than seen the one you love,care for or the person on the street you dont know go through it.
 
Last edited:
I had a girlfriend who had epilepsy (over 15 years before I had my first seizure). She did not have TC seizures, but I guess they were drop seizures, with loss of consciousness. That is the closest I have ever been to seeing a seizure. I hope I never have to see a 'real life' seizure, but if I do, I hope I can help the person the best way possible. Maybe I can be there to catch someone the way people have been there to catch me.
 
I will answer this one for my daughter Kait as she is the one who has seizures not me. Yes she has. Her father has epilepsy and suffers from TC seizures. She has witnessed a few and so when she realized that SHE had what HE has she was mortified at first. Im sure she had flashbacks to the visual images that were imprinted in her brain of what it sounds like and looks like. In a way I think it has helped her realize why her friends and family are concerned for her and worry. The specialists can say all they want that it doesnt hurt and the person feels no pain during...but how do they really know? Im telling you, from somebody who has seen many TC seizures it sure as heck looks painful!!
 
I used to do volunteer work with our local Epilepsy Foundation and so on a few occasions, I have seen people have seizures, CP and TC. I also saw a young gentleman have a TC in a Barnes and Noble store a few years ago. I was outraged at how a few of the others in general reacted to him. One women said that he "must be on drugs, since he's having seizures." If people say those kinds of things, I don't want to know what has been said about me behind my back.

And kaitybugsmom, we may feel no pain during the seizure, but often times it hurts like hell afterwards. Sometimes, we hurt for days!
 
One women said that he "must be on drugs, since he's having seizures." If people say those kinds of things, I don't want to know what has been said about me behind my back.

And kaitybugsmom, we may feel no pain during the seizure, but often times it hurts like hell afterwards. Sometimes, we hurt for days!

Grrr...its upsets me when people just assume things about other people!

I cant even imagine the pain after. Kait said it was like somebody beat her then ran over her. I dont think there was an area on her body that wasnt sore. She said the most painful areas were her tongue (she took a chunk out of the side of it) and her calf muscles.
 
it was wierd everybody always told me how scared they get when they see me havin my t/c's well a few yra ago me and my sister and her 2 kids were going to a family event she had no history of them we were goin 80 on the highway and she just started seizin while drivin it kinda came secondary savin my niece and nephew from dyeing was top priority.went under a deisel got her foot off the pedal and luckily she only has lesoins on her brain didnt know about controlled it was a little trippy but i knew b/c it was a seizure she would be ok as long as i could get us out of da car.
 
Grrr...its upsets me when people just assume things about other people!

I cant even imagine the pain after. Kait said it was like somebody beat her then ran over her. I dont think there was an area on her body that wasnt sore. She said the most painful areas were her tongue (she took a chunk out of the side of it) and her calf muscles.


this might help you imagine an iota

sit in a chair, cross one leg over the other like this - http://images.suite101.com/612759_com_crossingle.jpg
and on the elevated leg, point your toes out by clenching your calf, not by bending your ankle, and then hold your leg like that for about 5 minutes while holding your breath for as long as possible - if after about 20 seconds you start to get a charlie horse, you're on the right path and keep up the good work :banana:
and then imagine that all over your body, groin, back, neck, arms, ...

or do this for about five minutes while 'clenching' your groin/rectum
http://randomabs.com/exercises/howto/images/elevated-crunch_end.jpg
or run a mile while bent over at your waist looking at the ground
lmao
or do any weightlifting maneuver on pause for about 5 minutes - but not symmetrical as they emphasize "keep your hips level, back straight, yadda"... because from what I understand, during a TC the muscle groups are all firing and clenching in opposition and contrasting motion wreaking havoc on the tendons and ligaments... what the "keep your hips level, back straight..." is trying to avoid

and now imagine waking up in that pain on a foreign planet in a roomful of strangers in your face barking unintelligible nonsense not having any clue as to where that pain came from

and that's just where the fun begins
the psychological issues I've been trying to comprehend and deal with are just too complicated to explain
but could in large part be a mental struggle for justification and reason as the rest of the world toddles along on its merry way totally unaware as I try to find the "culprit" to this whatever it is.
a bit like knowing 9-11 happened but living in a world totally unaware or blissfully ignorant
 
Last edited:
Back
Top Bottom