Thursday, March 29, 2012

Sleep Study Diagnonsis

After months of doctor appointments, test taking, whining, logging my sleep history, more testing, a lot more whining, etc, I finally have a diagnosis for my crazy exhaustion.

I have narcolepsy. 

No, really. I have it. Not the fall down in the middle of a sentence and start snoring (a la the Narcoleptic Argentinian in Moulin Rouge or that chick in Deuce Bigalow) or the type where I have to wear a helmet because I may hurt myself, it just means that my body doesn't make enough hypocretins (orexins).

Hypocretins (orexins): These neurotransmitters are involved in the regulation of the sleep/wake cycle as well as other bodily functions (e.g., blood pressure and metabolism). Further research has shown that the majority of hypocretin-producing cells, located in the hypothalamus, have been destroyed in the brains of those who develop narcolepsy with cataplexy. Scientists have confirmed that narcolepsy with cataplexy is caused by this loss of hypocretins. The cause(s) of narcolepsy without cataplexy are unknown. Further research is needed to determine why hypocretin cells are destroyed and to identify the exact trigger(s) of both forms of narcolepsy. (found via

I don't have cataplexy, which is the sudden loss of muscle control and happens in more extreme cases, but everything else fits. I also have Circadian Rhythm Disorder, which just means that my body wants to fall asleep later at night and not wake up until later in the morning. ( that's why being a bartender was good for me) My doctor decided my brain is on California time while my body is in Oklahoma. Nope, I'm not an insomniac. I just live in the wrong state. :)

Looking at my sleep test was strange. When I thought it took me a long time to fall asleep, it really only took a minute or two (and one time only 26 seconds!) and I was surprised to see that I slept during all 5 naps. I also experienced REM sleep 3 out of the 5 naps, which is really what solidifies the diagnosis. Most people without a sleep disorder would not hit REM sleep within the 20 minutes I was allowed to nap. I showed very little time in NREM (non-REM) sleep, which was an Ah Ha! moment for me. I often have nights where I feel like I don't get any sleep because I'm constantly dreaming. Makes sense!

So we just take some hypocretin replacement pills, right? Wrong. They haven't figured out how to effectively do that, yet. Instead I'm taking medication to help "wake up" the rest of my body and hopefully make life easier. So far, I just feel kind of out of it, but that should subside in a few days. I just want to have one day where I feel what other people's "normal" feels like, and not my "normal", which includes headaches, an absolute need to sleep, and grumpiness associated with it all.

So if you see me nodding off or yawning during an important meeting or when you're trying to tell me something I absolutely need to know, please don't think I'm being rude. My brain just hates me and has killed off my lovely hypocretins.

Fingers crossed that the meds help and that I can get some kind of relief soon.


Laura said...

Oh my goodness! I hope the mess work and that you're able to get to normal soon!

Laura said...

Agg. Meds, that is. Dumb old autocorrect.

Also, your description reminds me of a friend from high school who fell asleep any time she got horizontal, no matter where, when, or what else was going on. I wonder...

gorillabuns said...

interesting. did you find you can fall asleep while dreaming or fall asleep within 30 seconds of laying down?

The Kellys said...

During one of my naps I fell asleep in 26 seconds. I thought it took forever but I was passed out!

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