ivorygates: (Default)
[personal profile] ivorygates posting in [community profile] insomnia
Okay I've been up for about two days now this should get to be fun...

I have insomnia. I have CHRONIC insomnia. If love laughs at locksmiths, insomnia snickers at pharmacists. Sleeping pills don't put me to sleep. Everything there is to try? I've tried it. I even flipped my schedule around so I was sleeping days and up nights. That works a little better than sleeping nights, but then every once in a while I hit a patch like this, and there's no point in trying to sleep until I fall over a few days later.

Which brings me to: oh thank god for Dreamwidth. Because it's people and conversation and a nice cup of tea at 4:15 am or 3:15 pm when I am NOT SLEEEEEEPING. And it's nice to not be utterly alone, or feel utterly alone, in the middle of your night, wherever it is.

Date: 2010-05-03 05:24 pm (UTC)
hatman: HatMan, my alter ego and face on the 'net (Default)
From: [personal profile] hatman
Absolutely. Mine has gotten so bad that I'm basically on a free running (AKA "non-24 hour") schedule, among other fun. Couldn't have managed if not for the 'net. Name a time zone, and odds are I know at least one person who lives there.

Date: 2010-05-03 07:44 pm (UTC)
hatman: HatMan, my alter ego and face on the 'net (Default)
From: [personal profile] hatman
Free run is what happens when you no longer respond to light cues. If you're blind, or live in a place with no windows, or just have an oddly screwed-up brain. You end up on basically a 25 hour schedule.

Unfortunately, Ambien doesn't work for me. And I'm hypersensitive to stimulants like Provigil. Any dose high enough to have an effect (i.e. 1/4 of normal adult minimum) just makes me jittery and woozy.

So I just live on a 25 hour day (on average), sleep 9 or 10 hours a night, use a really high CPAP pressure, and then make my bleary way through my waking period. Which makes me pretty much entirely unemployable.

But man... 90 minutes up, 120 down? That's impressive. Must be all kinds of fun.

Glad you found a way to make things work.

And yeah, I've definitely had good times on IRC. Should maybe look into it again. Just need to find a place/channel/server where I fit in...

Date: 2010-05-03 09:59 pm (UTC)
hatman: HatMan, my alter ego and face on the 'net (Default)
From: [personal profile] hatman
I tend to have quirky drug reactions, too. I believe much of that is also tied to the fibro. And yeah, as a fellow fibro sufferer, I know all about that screwing things up. Only thing that's helped so far is Lyrica, which lets me sleep somewhat more deeply. Ambien... knocked me unconscious for 4 hours. And then I'd wake up. And then have to get back to sleep. And then need a full night's rest.

I have spent some time in the DW public channel, though it's been ages since I've tried. It was fun for a while. Just not sure I really fit in. Maybe I should give it another try, tho.

If you're having issues with mIRC, maybe try a different program? It takes some getting used to (since it acts more like IM than IRC), but Trillian does have a functional IRC interface.

Date: 2010-05-06 12:58 am (UTC)
hatman: HatMan, my alter ego and face on the 'net (Default)
From: [personal profile] hatman
lol! Yeah, not alone in that. I hadn't considered how unusual it is. Just glad I never* did that scary blackout thing. The sleep-driving sounds terrifying.

Sorry to hear about the Lyrica. It's the only thing that's helped me at all. Gabapentin... I forget which one that was. I've been on too many to sort them out.

Flexeril doesn't sound familiar, tho. Hmm. A muscle relaxer? Wouldn't think that would help fibro, which seems to be more about nerves. Interesting.

Re: Trillian - Took me a sec to shift mental gears. At first, I thought we were still talking about sleep remedies. Wear yourself out with IM? ... Oh, you mean it takes your comp down!

That does sound odd, tho. I've never had issues with it. Then again, I've got XP Pro on both comps. Still, there have been some new Trillian releases. When's the last time you tried? Or, maybe, if it's just a jinx or whatever, it's better left alone. Still, there are other IRC options if mIRC fails.

*Er... AFAIK, come to think of it.

Date: 2010-05-06 04:19 pm (UTC)
hatman: HatMan, my alter ego and face on the 'net (Default)
From: [personal profile] hatman
Ambien: That... would freak me the hell out.

Lyrica: That sounds more familiar. But, actually, it turns out that Lyrica is doing a lot more for me than I'd thought. I missed taking my bedtime dose for two days, and could barely stand. Even sitting sent shooting pains through my hips.

May have to look into Flexiril, tho. Don't think I've been on anything like that.

But what's this about myelin sheaths? I thought fibro was all about hypersensitivity. And myelinated nerves are better at passing signals.

Intermezzo: Try some sherbet.

Trillian: That's... weird. But yes, I hope Win7 will have mIRC on you.

Date: 2010-05-06 05:37 pm (UTC)
hatman: HatMan, my alter ego and face on the 'net (Default)
From: [personal profile] hatman
Thanks for the flexiril info. I'd heard of the comm, but, much as I've had fun with more meds than I can remember, it didn't really seem like something for me.

The fibro info does sound mostly familiar. Not sure about the autoimmune status. They thought it was. Then they proved it wasn't. Then they thought it was again. Seems like it should be, since everything else I have is. I dunno.

(You did leave out the bit where 90% of the patients are female. I'm just one of the lucky few who got it as a teenaged male.)

And the brain fog. Yes. That's what finally got me. The pain, I could live with. Made up for the broken body by focusing on making the best of my mind. And now I can't even do that.

Way I heard it, hypersensitivity means too much signal to process. It just overloads the system. So you don't sleep as well (can't stay in restorative sleep and wake up too much between cycles), which just makes things worse. Still confused about where the myelin comes into it, but it is starting to ring some bells.

(Also, the part that was emphasized to me is that it's a "syndrome" rather than a disease - which means it's a complex of symptoms that appear to varying degrees in a number of patients without known cause.)

Wondering if it's worth posting some of this stuff to [community profile] fibro... but the comm has been pretty much dead.

Date: 2010-05-06 10:08 pm (UTC)
hatman: HatMan, my alter ego and face on the 'net (Default)
From: [personal profile] hatman
More of a curiosity than anything, really. There's an exception to every rule, after all... and it would appear to be me. (But no: thankfully, I don't get migraines.)

They have learned a lot about fibro in the last fifteen years or so. But yeah, beyond frustrating that they haven't found a cause... or a viable treatment. But at least Fibro Fog finally tells me why my brain exploded. After nearly a decade, it's a relief to at least have that much of an answer.

Lupus? I've been tested for that, too. It's never lupus. ;)

Date: 2010-05-03 06:42 pm (UTC)
zenlizard: One lizard to another:  "Please to be shutting up now!" (Default)
From: [personal profile] zenlizard
Hm....my insomnia is fortunately, intermittant. And highly variable when it's operative. Makes things difficult to prepare for.

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