ten years later: my narcolepsy diagnosis

October 25, 2017

So one of the reasons I started this blog was to talk about narcolepsy. Because, man, FUCK narcolepsy.

I was diagnosed a little over a month ago, after nearly a decade of symptoms. The issues started while I was working my first Big Girl job, and thankfully it was a really low-stress place. So taking naps under the desk wasn’t an issue. It’s just my George Costanza impression, you guys! It didn’t really occur to me that I was otherwise a very healthy person. Rock climbing, p90x, paleo, you name it, I was about it.

It was after that first job, one that had me working in a crisis center–doing shift work on erratic schedules–that I became very aware of the sleepiness issues. Stress levels were through the roof and I basically had no life outside of work. No life, only sleep. After quitting that job outright (and oh, I have some interesting stories about the place), I spent close to a year un- or underemployed, and still stayed sleepy. I gained a LOT of weight in that one year (30-ish pounds) and so clearly it was due to obstructive sleep apnea. Arriving at that diagnosis, I was PUMPED and actually pretty compliant with using my CPAP machine. But still. So. Sleepy.

So that was in 2014. Fast forward to spring of 2017, and I’ve got a good job, and I’m doing a lot of cool stuff outside of work, and feeling fulfilled in general despite never feeling well-rested. Then after a series of close calls, I used up all of my good luck and got into a car accident (nobody hurt! everything was fine except my poor car!). Guess you could say that I got a real wake up call, huh?

So…back to the sleep doctor. This time I went to a neurologist specializing in sleep medicine, and after some scheduling mishaps, I did another series of sleep studies. My home study did confirm mild apnea, but hardly enough to correlate with my level of sleepiness. My polysomnogram and MSLT showed off some of the wacky stuff I do when I’m sleeping, including lots of leg movement and quick onset of REM sleep.

Funny thing is, if I had the awareness of narcolepsy that I do now (along with some improvements on being assertive), I would’ve advocated for more after that first study. For that 2014 test, I took an MSLT and had a sleep onset of less than 5 minutes on average. My REM onset was pretty much immediately after and happened for all four naps. So, yeah, it could be ruled out as super mega stupid tired, thus my doctor didn’t even consider narcolepsy (neither did I, which was surprising because I’ve “self-diagnosed” with a whole lot of other incredibly rare and improbable diseases). But had I known then what I know now…

Anyway, I guess that’s sort of the point of me telling the story. Listen to your body. Don’t worry about looking like a hypochondriac if you think your doctor is missing some piece of the puzzle. A good doctor will listen to your story to get the full picture, and you can work together to figure it out.

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