as small as a world and as large as alone

9:52pm December 30, 2013

feliscorvus:

youneedacat:

mandimoojooce:

felicityredbarrow:

sappire-charizard:

six6vi:

Just in case

I’m actually going to reblog a thing just because this is really important.

As someone who has epilepsy and used to have several grand mal seizures a day, I’d also like to add that “offer help” can range anywhere from keeping the person calm to explaining to them where they are and what they were doing to even just telling them they should sit and rest for a while longer (lack or coordination is common, and it can be hard to walk straight or see clearly).

It’s okay for them to take up to a half hour to fully regain their bearings and sort out what they were doing prior to the seizure. Just answer any questions calmly and be there for support.

If they come around and you start to panic or shake them or ask them what the heck is wrong with them they are going to freak out and panic too.

I cannot stress it enough that this is bad.

If someone has a seizure and they come out of it, please. please stay calm.
They are likely disoriented and confused, even if it’s only for a minute or two, and you don’t want them panicking on top of that because they can have another seizure as a result.

IMPORTANT

Read! This is so important.

Also, some seizures can be quite different than this.  (I know this post is for a specific type of seizure, but still.)

They can involve things like…

Staring for awhile and then coming out of it with or without confusion afterwards.

Seeming confused, disoriented, or even hallucinating.

Having one or both arms fling out to the sides unexpectedly.

Dropping to the floor, but not having convulsions, and then regaining consciousness.  (Especially likely to be a seizure if the drop to the floor is more like a marionette with the strings cut, than like fainting looks.  I’m told that when I had this kind of seizure, it looked like I was falling faster than gravity.  Some seizures look a lot like fainting, but the kind I’m describing doesn’t.  Because when you faint, you still retain muscle tone.  In an atonic seizure, you lose all muscle tone, so you just DROP and hit the floor super-hard.)

And complex-partial seizures involve really weird impairments of consciousness that can end with the same confusion as a tonic-clonic, but happen in a totally different way.  And the person can seem to be conscious but they won’t be responding in the usual ways, or they may be doing random actions like dialing the phone or boiling water, and in that case it’s just a good idea to follow the person around and make sure they don’t hurt themselves, and reassure them if they’re somewhat aware but hugely disoriented.  And make sure they don’t walk into traffic or off a cliff or something in the meantime.

And another huge thing that I don’t see on there:

Controlling OTHER PEOPLE’S reactions to the seizures.

I can’t stress how important that is. 

I remember this one person having a tonic-clonic seizure and I did everything I could do get everyone in the room to not panic, to not dial 911, to not even MENTION 911 to the person who’d been traumatized and almost killed (actually, I think technically died at one point) by 911 people, and could react catastrophically to some seizure meds they might give, and stuff.  And would freak out if they even heard the WORD 911 after a seizure.

And I got everyone to find her instructions and follow them and together we got a whole crowd under control.

And then ONE PERSON had to walk in right as she was waking up, and say “Should I call 911?”

(I think that was the same person who’d triggered the seizure in the first place, knowing full well what they were doing, but I’m not sure.)

That person had to walk up right close to her and ask loudly, “SHOULD WE CALL 911?”

Which resulted in a huge mess of fucked-upness afterwards that could’ve been prevented if she’d just… ugh.  But that’s a topic for another day.

(And by the way, doing all of that coordinating of people in real-time while having to type all the information into a communication device was a small miracle.  Basically IIRC I was the one who got everyone focused and then a small group of us got the huge group of people under control after that and explained what to do and what not to do.  But it was a fucked up mess.)

But if there’s a crowd gathering, you DO have to do that.  You have to run interference for the person.  The reason I knew to do that was I’m epileptic myself and I know how it feels to wake up (in my case from complex-partial or atonic seizures) with people doing strange things to you.  But that’s something that’s not covered in a lot of these things.  They cover all the things to do with the individual epileptic person but they don’t cover crowd control.  And crowd control is vitally important unless you want someone ELSE to do something horrible, and they will if not dealt with.

Wow. Re. the “sudden drop” thing…while I have never been diagnosed with a seizure disorder I have definitely had that sort of thing happen a few times (as well as some other possibly seizure-related phenomena, e.g., intense waves of deja-vu or intense, random memories of mundane objects from years and years ago.)

The dropping thing happened more when I was little, but has occurred on a couple occasions as an adult as well. Basically I will be standing/walking and then all of a sudden, boom, my legs just kind of give out. Like when you trip and fall, only there was nothing to trip or fall on. I don’t lose consciousness at all, and it definitely feels subjectively very different from fainting (which for me at least is preceded by feeling very ill and/or sweaty). Weirdness.

With me, it was like all muscles in my body collapsed instantly at which point I’d hit the ground harder than you’d think was humanly possible, end up horribly banged and bruised and scraped, etc.  I think I sometimes woke up just before impact, or just after impact.  But I know there was a sense of “blipping out” mentally.  It was like one second I was standing, the next I was either hitting the ground or already on the ground, and there was NOTHING in between, like consciousness did not exist at all in between the two things, like flipping a switch.  And the switch-flipping sensation is similar to other seizures I’ve had, but it’s much more vivid when you’re in one position and then you flip a switch and suddenly you’re in an entirely different position, with no sense at all of time passing in between.  I wish I could describe better what it feels like when that switch gets flipped, but for me it was a really distinctive cognitive sensation, not just the physical thing (because I did lose consciousness, but it was utterly different from fainting).

I remember at the worst point of all that, I was walking down a hall on the way out of an ER visit, and every time I stood up I blipped out and was on the floor again in horrible pain, and eventually I refused to walk.

Have you ever had the blipping sensation?  It’s like someone flips a lightswitch and time has passed but nothing else has changed, like one second you’re doing one thing one second you’re doing something entirely different (or other people are doing something entirely different, and things in your environment have noticeably changed), and there’s this sensation like a mental jerk in between.

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