Didn’t realize these things aren’t normal
TL;DR: undergoing workup for N1, next step is sleep specialist in August. HST was negative; hoping the wait for PSG+MSLT isn’t too long. Seeking support and validation, I guess? Knowing it’s not just me with these symptoms (EDS, muscle weakness triggered by laughter, sudden onset of sleepiness or sleep etc), and that they ARE of medical concern??
More venting:
It’s such a mind fuck to be realizing these symptoms were never normal!! I thought everyone gets suddenly sleepy (“tired”) a lot and I was just crap at functioning!! (Because all college students, grad students, and adults are “tired all the time” right?) Thought it was just a quirk to need naps a lot, to lose grip strength during pillow fights, to go floppy/jelly-legged with lots of laughter. Sure, I was scared shitless when I suddenly fell asleep at the wheel on a bright sunny early afternoon—not once, but twice!—but just suppressed it and have avoided driving >15min since. Didn’t think to dive into that (?!?!Why ????)
Re-reading my PCP’s notes from our visit is helping me not gaslight myself—he wrote “hypersomnia” in his assessment, and stated my constellation of symptoms “raises suspicion for narcoleptic etiology”. I think my mind is just reeling and I’m anxious for answers, I guess.
To end on some funny anecdotes:
When I updated my sister on the suspicion for N1, explained cataplexy, and referenced how I tend to go floppy/knees buckle/semi-collapse when I laugh really hard—she said “I always thought that was just a stylistic choice! like how some people slap their knees!” 😂 (To be fair, I am the most loud and theatrical of our siblings.) Also, attaching a copy of this superlative I was awarded in Stats class in high school— that “S is for Siesta and not Statistics.” (I actually liked stats, was NOT boredom naps). Feels like the theme of my life.