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Mielle

668d

How long did it take you to be diagnosed with narcolepsy or idiopathic hypersomnia? For me it took years. I kept going in and telling them I was tired all the time. They would keep ordering blood tests for anemia which came back fine. This happened at least 3 times over a few years. I was falling asleep standing up which was especially dangerous since I worked in a kitchen at the time. I finally got the diagnosis last year. I don't know when the symptoms started but I have memories of having what seemed like sleep attacks even as an elementary schooler.

Top reply
    • Bakon

      384d

      I'm working on getting diagnosed right now. My insurance doesn't want to approve the sleep study

    • Bakon

      384d

      I'm working on getting diagnosed right now. My insurance doesn't want to approve the sleep study

    • Lucky1

      436d

      It took 6 years for me to be diagnosed (at age 19), as the doctors kept thinking I had epilepsy and did so countless blood tests for diabetes etc. At one point I waited 3 years on the list for paediatrics. When I finally got seen, I was 17 and they dismissed me, saying it was all due to hormones and anemia. So glad I persevered.

    • BreBee04

      646d

      I first had symptoms when I was about 7. No one took me seriously until I was 15 and I was not diagnosed until i was 17.

      • Libby123

        533d

        @BreBee04 same thing happened to me, i would tell my doctor my symptoms and my troubled mother would tell them i was making things up

    • strugglebus

      663d

      Hi! I have epilepsy, and they found the epilepsy first, for obvious reasons lol (diagnosed at 16). And when I was 18? in college I started falling asleep in college, which was weird for me because I have always love learning, literally school has always been my favorite thing I've never involuntarily fell asleep in class. And so my neurologist ordered a sleep study because I have a rare form of epilepsy, and that's how they found out I have narcolepsy. Same as you though, I definitely had it since elementary school. I was able to fall asleep all the time, whenever I wanted. I can go into REM within 5 minutes. And I continued doing that throughout middle and highschool after I was done with my work bc what else was I going to do, so. But you know, clearly I was just "lazy"

    • Kowmow

      666d

      Hey there! I started having symptoms when I was a teenager but didn’t think anything of it until my psychiatrist figured it out! I would tell him how tired I am, and about my sleep paralysis and nightmares. He realized what was going on when I told him I was hallucinating while waking up. I genuinely thought I was schizophrenic! I was finally diagnosed at 30 and it was so validating. I always felt horrible about missing appointments and events because of what I now know are sleep attacks… it feels good to know I’m not just lazy or unreliable.

      • Mielle

        663d

        @Kowmow wow, thanks for sharing! It really feels like it takes forever to get a diagnosis for this 😅 but I'm glad you eventually did!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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