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I’m a Narcoleptic, AMA 🥳

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

26 comments
  • What lead you to seek diagnosis?

    Are you taking corrective meds?

    How does or did it impact your everyday life?

    • What lead you to seek diagnosis?

      [I hope I don’t get too much hate for this, but I understand if it comes]

      I had about a 40 minute commute on the highway, and I had an accident. No one else was involved, which was pure luck (people have often said I have a guardian angel watching over me about these things). But my car was 100% totaled and I was just fine (maybe a little sore) and I was fucking scared. When I was explaining it to my SO, I mentioned maybe it was narcolepsy (due to a video I saw that I wish I could find), and so we got an appointment with a sleep doctor.

      Are you taking corrective meds?

      Two kinds, an amphetamine for day time and a very strong sedative for nighttime.

      How does or did it impact your everyday life?

      The short answer, without getting into any stories:

      • It was a struggle through high school and college (causing me to stay in college 11 years).
      • I was spoken to by more than 3 supervisors (of my career job) about sleeping on the job.
      • I should not have been driving for that long, but I was dropped from my insurance and got many tickets, paid lots of money, and never actually hurt (anyone except maybe a bunny, unconfirmed).
      • I basically didn’t have a life after work. It was straight to sleep, either in the car or as soon as I got in the door.
      • Above meant I was fat because when you have no energy, you eat fast food or easy to cook and you don’t have the energy to work out.
      • It also meant I was pretty messy because cleaning also took energy.

      So, much of life was a struggle. And I don’t have it as bad as some others (especially my cataplexy, which is a weakness in the knees and arms that comes with my type of narcolepsy).

  • 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.

    • 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.

  • Is sleep hygiene important in your life? For example, you watch youtube videos close to bedtime?

    • It probably is, and fixing my poor sleep hygiene would get me better sleep, but I am sleeping enough and medicated enough to get by. However, as it becomes winter where I am, I have to be more careful. I definitely have to get 8+ hours in bed, though.

26 comments