So, er, forgive not hearing from me sooner... I don't know if Blake removed my server bank from the spam filter, or if I'm currently routed through another IP address with Verizon... But for some reason, I can post to LISNews (for now.)
And news. Real news. Actually, really good news.
I have been diagnosed. Officially. There is no "I guess we have to call it fibromyalgia even though it doesn't fit, really." There is no "You're depressed." There is no "You're crazy."
I have narcolepsy, with (albeit very subtle) cataplexy. The endometriosis accounted for about 99% of the pain I experienced in the hips and back. The rest I'm chalking up to old age and lack of sleep, because it doesn't get in the way of my doing things. Being dead awful tired, spacey as a crap, and intermittent weakness... Hooo yeah.
How do we know this now?
They started me on a drug whose name I won't mention, but you'll probably get on the Googleinator and be able to sort it out. It's the big gun cataplexy drug, that also improves quality of sleep (by, er, putting you in a comatose state), which does have at least some effect on daytime sleepiness. I am on a small dose, and still have to take focalin, and still need naps. But now, when I need a nap, I can actually make it to the bed, and not need to lay down right where I am.
The interesting thing was the cataplexy, though. I knew I got muscle weakness, didn't equate it with emotion. However, now I can laugh really hard without spending the next thirty seconds feeling like my head's going to roll off. It's not terribly noticeable (though has been on occasion).
Now for the confession: I have not taken the MSLT (the nap test), because, well... I can't. I take antidepressants... have for years. I don't mean five or ten years. I mean... years. I was a kid who was extremely depressed. The good news is, with the invention of Prozac, I got loads better, and it isn't a problem, hasn't been a problem, unless I miss a dose. Then I'm a sad librarian again. Needless to say, I haven't missed a dose in about fifteen years now, as it's quite clear the problem is chronic.
So antidepressants, among other things, are used in the treatment of cataplexy and delay REM onset. It would be necessary for me to spend five weeks without an antidepressant (or stimulant) in order to get a good reading on the MSLT. I'm not willing to do that. Neither are my doctors.
However, my history, as described, my symptoms, as observed and described, and the presence of cataplexy (which is tricky, because it is so slight, and probably has been affected by years of antidepressant use) is enough that both the sleep doctor and nurse practitioner at the sleep clinic are sure.
I almost asked the nurse practitioner to repeat it a few times, so that I could wrap my head fully around it.
"Honey, you have narcolepsy/cataplexy. There's no doubt in my mind. It's not the most clear cut case because of the antidepressants, but yes. That's what it is."
I am hopeful. I am hopeful that with this new med, the focalin, and a few naps at scheduled intervals, I can actually do the full 16 hours per month at the Hysterical Society. That would be nice.
Narcolepsy is a nasty thing. I never got my driver's license (always had problems falling asleep in cars). Now I probably couldn't if I wanted to... It's pretty debilitating, but I guess I'm lucky in that my cataplexy isn't the complete fall down and go boom type.
I am just thankful, that finally... I have an answer that fits... It explains why I act out dreams at night, why things mysteriously end up in the refrigerator that shouldn't be there (automatic behaviors are fun!), and mostly... why I just collapse in bed and sometimes can't tell if I've slept when I wake up.