Understanding (My) Epilepsy

[brightlotusmoon]

Since the death of John Travolta's son Jett, I've gotten a few emails and messages wondering if I was all right, if the idea of dying from a seizure scares me, if it upsets me. I also just learned that a girl whom many of my friends knew died recently -- she had a seizure in her sleep, fell from her bed, and broke her neck. Friends were apparently

Comments

[sigma7]

You know, I think I know people who've died from every other cause except seizure-related injuries. And hedgehog attacks, now that I think of it; most of the hedgehogs I've come across just tend to throttle around and nibble at shoelaces.

Am glad you're doing okay -- coffee does a great deal toward restoring my sense (illusion?) of humanity, too. Solace in the short-term, peace in the long-term -- that's about all we can hope for, isn't it?

[brightlotusmoon]

Hedgehogs...

I... wow. Heh.

Hedgehogs.

But hedgehogs are so cute!

Hehehehe. Hedgehog attacks.

I need a macro now.

Yeah, coffee was awesome this morning. I had two cups, then I had two cups of blended green and red tea. Then I swallowed a bacopa capsule and cracked my neck gently. It worked pretty well.

Solace in the short-term, peace in the long-term... that's like a mantra. I'd like to use that for my mantra.

[wolfden]

There's a "when hedgehogs attack" website but no good macro there.

[brightlotusmoon]

Really??

[wolfden]

It's very sad that your friends' friend died. I am sorry for their loss.

I am saddened by Jett Travolta's death as well. Though I have to wonder, if they had been treating his epilepsy if he would have died? I can't imagine that as a parent. But I suppose I lack their belief system also.

I recently reconnected with a high school friend whose (young) daughter has severe epilepsy. She's been diagnosed with Lennox-Gastaut Syndrome. I didn't know anything about it before but I am learning (and interested in learning more).

I worry about my friends. Just extra about the ones that have potentially dangerous illnesses.

[brightlotusmoon]

They were treating the seizures, yes, but they had to wean him off the medications because the medications stopped working so well. It wasn't due to their Scientology, which a lot of people have been suspecting. I think he had a seizure disorder, but not necessarily epilepsy. It's been shown that epilepsy drugs can lose their effectiveness after a while with severe seizures, which is what happened with Jett.
Lennox-Gaustaut Syndrome seems like hell.

[wolfden]

Ah. I thought they weren't treating him but it makes more sense that the drugs stopped working.

Yeh. I agree that Lennox-Gaustaut seems like hell. I can't imagine watching anyone go through that.

[brightlotusmoon]

Yeah, it's been a common misconception that because they're Scientologists, they refused the seizure drugs, but it's not true.
I think it's mostly drugs like Prozac that Scientology looks down on -- drugs for depression. Something like that. I'll have to research it. (I don't have a knee-jerk reaction to Scientology's views, I just think they're absurdly weird. Weirder than the views some of those little evangelical Christian sects, and that's saying a lot. Heh.)

[ronin_lethe]

let's be fair.
L was epileptic--and a MASSIVE drug addict. i hadn't seen her sober in years.

worst, she felt she has the right to judge others for the same crime.

of course i am not HAPPY she's dead. i am not a monster.

i feel for all who loved her.
but let'ds just be....honest.

[brightlotusmoon]

Huh. Interesting.
I didn't know anything about her, so this is all anyone's told me, you see.
Adam said, "D's friend L died of a seizure. Nobody wanted to tell you because they didn't want to upset or distress you because you're also epileptic."
And I said, "Um, okay? That's really sad but I have no idea what you're talking about. Who's L and what do I have to do with her aside from having epilepsy?"

I have no idea who she was. Who was she? (You can email me if it's too private)

[snowcoma]

My mother's had some near misses, but thankfully the worst that's happened has been that her seizures have caused more damage to her massively arthritic spine. Her back bows when she has grand mals, and she's not meant to bend that way.

Also, I just made a post on what to do if someone around you is having a seizure. Let me know if there's anything I should add: http://snowcoma.livejournal.com/199986.html

[walksbeauty]

Kind of off subject, but I remember thinking if I had a seizure disorder, I'd have one of the dogs who are trained to give you a signal before a seizure comes. These trained dogs can sense it and make sure you're sitting or laying down before it comes.. isn't that cool?

I was really really sad about Jett Travolta. What a sad tragedy.. I was hoping it wasn't Scientology "no-drugs" related.

Coffee is a Godsend for migraine... I 'save' it for that... Glad you feel better today!

[brightlotusmoon]

I'd like one of those dogs, myself. :)