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]@midwest.socialOP
      link
      fedilink
      English
      arrow-up
      10
      ·
      1 month ago

      I would not have fallen asleep while running, I would not have been able to stand up straight while asleep, and I would not have been that awake when I did wake up.

      And, while where here, most media portrayals of narcolepsy are not accurate, but I am also not offended at my disorder being played as a joke. However, I’ve never actually watched the whole of Rat Race or Duce Biggalo or any other movies portraying narcoleptics so maybe that had something to do with it.

        • Pandantic [they/them]@midwest.socialOP
          link
          fedilink
          English
          arrow-up
          5
          ·
          1 month ago

          Yeah, for real. I don’t know if you read what I wrote in another response, but one of the factors that affect me having a sleep attack is the amount of stimulation, and that would be enough endorphins to keep me awake. Now, if I’m not medicated, the cataplexy (weakness in the limbs that comes with my form of N) might get me because of extreme emotions.

    • Pandantic [they/them]@midwest.socialOP
      link
      fedilink
      English
      arrow-up
      11
      ·
      1 month 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).

    • Pandantic [they/them]@midwest.socialOP
      link
      fedilink
      English
      arrow-up
      9
      ·
      1 month ago

      Being medicated has been enough to keep me functional. Except for when I’m stressed, didn’t get enough sleep (like coming home late from a recent trip and having to wake up for work in the morning), or when the conditions are just right, I am pretty much “sleep attack” free.

  • TootSweet@lemmy.world
    link
    fedilink
    English
    arrow-up
    5
    ·
    edit-2
    1 month ago

    When was the last time you drove a motor vehicle?

    I only really ask because I had an episode of syncope (which is the manly way to say I fainted) in 2020. When I finally got in to see a neurologist, he was very concerned that nobody else (my GP or cardiologist, for instance) had told me not to drive until either we had an explanation why the syncope and a reasonable expectation it wouldn’t happen again unexpectedly, or 6 months had passed without an episode.

    I’m only guessing that you don’t and/or can’t drive, but it would make sense.

    • Pandantic [they/them]@midwest.socialOP
      link
      fedilink
      English
      arrow-up
      7
      ·
      1 month ago

      I actually am at a level where, as long as I’m medicated, and I’ve gotten enough sleep, I’m fine to drive in most circumstances. I also know my triggers (what makes me feels sleepy), limits (how far can I go, etc), and tells (how I know the sleep attack is oncoming). I also have techniques for undoing my triggers (cold air, for example), and also ways to stimulate the part of my brain that controls that sleepy feeling.

      However, when I was diagnosed, my doctor did not tell me that and he well should have because I was not safe and it was a fucking wonder I didn’t kill myself or others. People said I had a guardian angel, but I think it was really just my conscious mind keeping me me from crashing in between struggling against the sleep demon.

      • TootSweet@lemmy.world
        link
        fedilink
        English
        arrow-up
        4
        ·
        1 month ago

        Good to hear you’re able to drive! Fortunately I didn’t have any syncope after that one time, but I do sometimes feel symptoms that might be syncope coming on. And if I get that while driving, I always pull over somewhere and do the machinations to fix it.

          • TootSweet@lemmy.world
            link
            fedilink
            English
            arrow-up
            4
            ·
            1 month ago

            “Dysautonomia.” Which my doctor hasn’t stuck his neck out so far as to say was from COVID, but it was. Heh.

            I was an “early adopter” of COVID, so there weren’t tests yet when I started having symptoms, so I guess take it with a grain of salt because I don’t have a positive test result. But all the weird symptoms I had match up with COVID – though to be fair it’s really wild the range of different things COVID can do to you – and there were visitors from the London office at my workplace just a few weeks before I had that syncope and subsequently got long-term sick. (I’m in the U.S.)

            • Pandantic [they/them]@midwest.socialOP
              link
              fedilink
              English
              arrow-up
              3
              ·
              1 month ago

              though to be fair it’s really wild the range of different things COVID can do to you

              My mom still has problems with brain fog and her sense of taste after having COVID.

              Dysautonomia

              Wow, that sounds like the disease you have when something’s wrong with your brain and they don’t know what.

    • Pandantic [they/them]@midwest.socialOP
      link
      fedilink
      English
      arrow-up
      8
      ·
      edit-2
      1 month ago

      What do they prescribe for this? Stimulants?

      Stimulants: amphetamines in the morning, and a strong sedative for night time. I am actually taking a lot less amphetamines since losing more weight and getting healthier. I recently started the sedative, which allows me to take even less by making me sleep longer. Narcoleptics go into REM too fast, which means their sleep cycle is over quick, and it goes quickly past the deep sleep stage, which is really beneficial to the body (and negative to get less of it like a narcoleptic does).

      Edit: sorry I missed your second question!

      Does something set you off? (e.g. getting excited)

      I’m nervous talking to people I’m not close with (co-workers), and it happened a couple of times when I was talking to them, and a couple times laughing, but that is just the cataplexy (weakness in the limbs).

      My sleep attacks aren’t triggered by emotions but amount of sleep, amount of stimulation, and environmental factors. These three are like a triangle chart and if any two of them are low (or too much in the case of environmental factors), or any one is extremely low without others compensating with high levels, that is what triggers me. And as I said in another comment, I can do things like manipulate my environment (colder temps, more stimulation) to compensate as well.

    • Drusas@fedia.io
      link
      fedilink
      arrow-up
      2
      ·
      1 month ago

      Not OP, but they prescribe stimulants to help you wake up and stay awake during the day and sleeping pills to help you sleep at night. Most people with narcolepsy also have some form of insomnia.

  • leverage@lemdro.id
    link
    fedilink
    English
    arrow-up
    3
    ·
    1 month 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]@midwest.socialOP
      link
      fedilink
      English
      arrow-up
      2
      ·
      edit-2
      1 month 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.

    • Pandantic [they/them]@midwest.socialOP
      link
      fedilink
      English
      arrow-up
      1
      ·
      10 days ago

      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.

  • Drusas@fedia.io
    link
    fedilink
    arrow-up
    2
    ·
    1 month ago

    Me too. Turns out it operates on a spectrum like so many other illnesses do.

    • Pandantic [they/them]@midwest.socialOP
      link
      fedilink
      English
      arrow-up
      2
      ·
      1 month ago

      Yes, and I’m not as narcoleptic as others I’ve heard because I can medicate and function. But I do have one of the smallest sleep latencies (how fast I enter REM sleep) of any narcoleptic I’ve encountered.