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

  • Pandantic [they/them]OPEnglish
    11·
    2 months ago

    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).