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Any epileptics on Barbelith?

09:09 / 10.06.04

Hey all!

Am just wondering if there are any epileptics on Barbelith? I have had mild epilepsy for about 13 years, and today it acted up with a bout of aura sensations that freaked me out a little.

I'm a high school teacher, and it acted up when i was in class with a group of 13 year olds, so that felt a little weird.

It's made me want to discuss this with people who know what this condition feels like, and how i can harness the fear/grief (it sometimes makes me feel) into some more positive feelings .

I respect the convo's that go on here, and hope we can share our stories.

- Augury

Less searchable M0rd4nt

16:16 / 10.06.04

Yup, I'm epileptic... there used to be a thread around here somewhere which was me going through the aura stage in real-time. Got into Memepool and everything, man.

16:26 / 10.06.04

Your thread's still here, MC.

VonKobra,Scuttling&Slithering

16:52 / 10.06.04

Fucking wicked. It's really amazing reading that account

I have Myoclonic Epilepsy. I started having seizures at age 12. I get Grand Mal episodes, which is the classic full-blown spacemonkey seizure. My Aura is a little different from MC's, in that I almost never recognise it for what it is in time. Though I have avoided a coupla seizures by breathing slowly and concentrating etc, it's in no way reliable.

I'm on pretty heavy medication, I have to get off the Tegretol(a barbiturate) within the next few years or it'll do me Liver in apparently.

I usually get seizures early in the morning. Especially when I haven't had any sleep. And I'm pretty vulnerable when I'm hungover. So, as you can imagine, the Chef lifestyle doesn't mix too well with my disability. But, going on 8 yrs now, it's never affected my work. I get visual pulses and tiny absences before I go into a fit. I get Myoclonic Jerks, which are sudden spasms of my arms. Then I drop and black out. Apparently I scream out on the way to the floor. Then I turn blue. I've had stitches in my head from where I've smashed my eyebrow against a chairleg for a while. It's weird coming to in a pool of blood. After a seizure you don't even know your name for a while.

Less searchable M0rd4nt

19:39 / 10.06.04

I have to get off the Tegretol(a barbiturate) within the next few years or it'll do me Liver in apparently.

WTF? I'm on Tegretol! What do you mean, it fucks your liver? No-one ever said anything to me about liver fuckage! I thought that was just the mega-doses that fucked livers.

*panics*

21:59 / 10.06.04

[A Little Bit Offtopica]

Ohhhh. That thread again. I love that thread. That thread of Mordant's is one of the most amazing and moving things I have ever read on the internet, and it's also one of the first ones I came across when I discovered Barbelith.

Apart from the utter sense of fascination and involvement I got whilst reading it, it also made me go, "Whoa, this board is obviously full of wonderfully, madly wicked people who are happy to discuss what it feels like to have an epileptic fit whilst actually having one, and I want to be a part of it."

Sorry, just had a sudden urge to say that.

[End A Little Bit Offtopica]

06:08 / 11.06.04

Hi

thank you to everyone who is sharing their stories.

Yes, epilepsy is fascinating - and when I can step back from it - the aura state is kinda amazing.

For me, it means that i can't quite understand what people are saying to me - i may have an auditory hallucination. When i try to speak - my words won't come out properly.

I've also had grand mal seizures (the full on body quiv experience), which usually leave me feeling emotionally naked/wiped. Anyone else get this?

My epilepsy is usually under control with Tegretol, so when i do have a seizure - like the other day - it really freaks me out / depresses me.

i hope this discussion continues!

06:21 / 11.06.04

Mordant, I just read your account, very touching/unnerving. It encourages me to share a poem i wrote a while back abt epilepsy

AURA

I feel it coming.
I am frightened.
I feel it coming
to hold me in its grip

I try to think,
but my thoughts have been taken
I try to speak
but my voice is foreign

My world is shifting.
I am frightened.
I feel it coming
to hold me in its grip

There's nothing i can do.
So i wait for the dark

I wait for someone to ask if i'm ok

ta - Augury

10:08 / 11.06.04

That thread is really amazing.

Less searchable M0rd4nt

10:14 / 11.06.04

Thanks for showing us that poem, Augury.

Y'know, it's not the condition itself that bugs me. I feel I can deal with it quite well, partly because of being into the magicks (which gives me a useful toolkit for dealing with scary life events in general and the sezuires in particular). I've also got a very supportive partner, which makes a huge difference.

The difficulty for me is other people's bullshit attitudes. Everyone thinks they're an expert on epilepsy, but the truth is that the average person knows nothing about the condition, uncritically swallowing every urban myth that comes along. I've been repeatedly turned down for jobs because "epileptics can't use VDUs"; on one occasion I was refused work because I am, apparently, a fire hazard. Because, according to the talking monkey from the personel department, "If there was a fire and you had a fit, someone might trip over you."

In fact, I find my condition less disabling and less quality-of-life-wrecking than the migrane headaches I suffered before my epilepsy went full-blown.

11:19 / 11.06.04

Actually, speaking of not being an expert: I’ve been meaning to ask, is there anything you should do if you’re at hand when someone’s having a seizure? Years ago my friend had a fit in front of me as we were walking through town, and I didn’t know what to do then except wait and fret, and shamefully I still don’t really know now. I mean, stop people from bumping their heads, well obviously; but ‘make sure airwaves are clear’? How does one do that, exactly?

Aheh. Of course, then, in a fraction of the time it took to write that question, I just googled and found this page. So, is this good information, pretty much? Any Barbelith epileptics, please give instructions on any other help they might want should I be in the vicinity, or how they’d like to be cared for. And what kind of chocolate bar they’d like to cheer them up afterwards. I’m crap at caring for people in any practical sense, but I’m very good at proffering chocolate bars like they’re the ultimate cure-all.

12:08 / 11.06.04

I had a mate in boarding school who was having an asthma attack, and another kid thought it was an epileptic fit, so he sticks his fingers down my mate's throat to stop him swallowing his tongue, which you can't do anyway, and as you can imagine, this DID NOT HELP. This kid was a chain smoker too, which must have made his fingers extra tasty. Anyway, now we're all old farts, my mate has just found out he's got, I think it was, temporal lobe epilepsy, after all, which apparently screws up your emotional responses rather that causing fits as such, which he says goes some way to explaining why his life has been so fucked. I envy him in a way, because he can take drugs to cure his headfuck, whereas I will probably always be a whiny little ball of hate. Ah well, hate gets me to the outer church on time...

VonKobra,Scuttling&Slithering

12:55 / 11.06.04

Er...

...can I have one of those Orange Mars Bars? Or possibly a Turkish Delight. Thank you.

Magick? It helps you with Epilepsy?

Spill.

16:25 / 11.06.04

Carbamazepine (Tegretol) is not a barbiturate. It can cause hepatotoxicity, but this is by no means inevitable. More here.

05:48 / 12.06.04

When I was in high school a guy in my earth science class had a seizure in the pool during his PE class. A couple of days later, at the end of our lunch period, the guy that has the seizure and I were standing outside the science room waiting for the teacher to open the door so I asked him what happened. He told me what he remembered from the incident in the pool (not much) and then described all the things that his body normally did during a seizure. Not two seconds after he finished telling me about the convulsions and everything and he falls on the floor, shaking. I thought he was joking or trying to show me or something. So I kicked him in the leg. "Alright man, come on, get up." I still feel bad about that. Luckly, the science teacher came to open the door at just about the same time and was able to call down to the office and get him some help.

VonKobra,Scuttling&Slithering

13:11 / 12.06.04

Thank you, Ganesh. Thank you very much.

My friend who was a manic depressive was on Tegretol, and told me a few porkies about it obviously. I'm quite disturbed by the fact I haven't had a fucking blood test in about 2 years though, and the Doctor has never said ANYTHING. The bone marrow stuff worries me. Also the fact that I'm an Alcoholic...mind you I should be more worried about the illicit drugs and how they combined with Carbamazepine really.

But the big one... it says that Tegretol is no good in treatment of Myoclonic Epilepsy. WHAT THE FUCK?

Have I been misdiagnosed?

I've been on Tegretol since I was 23. This is something of a HUGE oversight. I can't help being a little perturbed...

Less searchable M0rd4nt

18:48 / 12.06.04

I haven't had a blood test in yonks either, but it doesn't look like it's a huge deal really if you're only on the one pill. The bit of paper that comes in my packet of teg. mentions liver fuckage, but only in rare cases and at high dosages, as far as I can make out. Incidentally, I don't even have to see a doctor about my meds over here--I just show my local pharmacist a note from the nurse, and I can just buy the stuff over the counter, same as my BVentoleen In'alador. Rock.

Bedhead: That list sounds about right. I especially like the bit about "go over any missed events". In my case I'd add the caveat "and stay clear of her boots, mate, she kicks like a mule."