I have been narcoleptic since high school. I was only diagnosed with it 8 years ago (I am ~40), so I actually lived with it for around ~15 years undiagnosed. In that time, I graduated high school, college, and went into a career.

So, with the preliminaries out of the way, and in a effort to contribute to the AMA comm:

AMA

  • @[email protected]English
    3•1 day ago

    What finally pushed you to get it addressed?

    Narcoleptic here as well. I’ve recently started considering it an unhealthy coping mechanism for boredom. I’ve never fallen asleep while doing something truly stimulating. Boring to me tv show or movie while comfy, sleep at 10pm, TV show that has me gripped, binge until 2am. I have a memory from my teens of watching a good movie in the theaters, no issue, but a friend dragged me to see it a second time and I passed out. I finally realized I had an issue because I was falling asleep while driving my daily commute, the same boring stretch of road. I finally did something about it when I fell asleep with my future wife in the car, in the afternoon after a full night’s sleep, very nearly getting us into an accident on that same stretch of road.

    It was crazy to see the EEG showing me hitting REM with 15 minutes. Sometimes I feel like I’m conscious and experience REM.

    Modafinil is a wonder drug. I feel like it does absolutely nothing to me other than fixing undesirable sleep.

    Apparently autism and sleep disorders are comorbidities. I didn’t realize I was autistic until 10 years after my narcolepsy diagnosis. More to do with the field not considering low support needs autistic people as worthy of the distinction. Not saying that’s you, just saying the questionnaires only take a few minutes, and the world makes way more sense to me post realization.

    • Pandantic [they/them]OPEnglish
      2•1 day ago

      I’ve never fallen asleep while doing something truly stimulating. Boring to me tv show or movie while comfy, sleep at 10pm, TV show that has me gripped, binge until 2am. I have a memory from my teens of watching a good movie in the theaters, no issue, but a friend dragged me to see it a second time and I passed out.

      Absolutely, me too. If my brain is stimulated, then I’m at no risk (unless other factors are against me).

      It was crazy to see the EEG showing me hitting REM with 15 minutes. Sometimes I feel like I’m conscious and experience REM.

      Mine was more like 2 minutes. My doctor once called me “extremely narcoleptic”.

      Thanks for chiming in and sharing your experience! I used to have a really great narcolepsy community over on R*ddit, and that is one of the few things I miss about that place.