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At What Age Were You Diagnosed With Narcolepsy?

  1. 35

    1. Hi I am new to the forum and I am very excited to be here. As the day goes by I will tell you some about my experiences too. It just might come in more than one post because I am also taking care of my elderly mother. If you have any questions for me, please ask and I will be happy to answer them. Oh yeah and thanks for sharing if I forget to say that later. 😁

      1. Hi , welcome! We look forward to hearing about your experiences when you're ready to share. Let us know if you have any questions for us! Best, Allison (Team Member)

    2. 16, had struggled since 12.

      1. I ended up in hospital for a week in 10th grade because I was so stressed. Looked up my symptoms, got the courage to ask my GP for a referral, got an appointment a few months later and turns out I do have narcolepsy.
        I'm type 2 with nearly no other symptoms. Apart from eds, I only have automatic behaviours when I'm woken up. I don't get sleep attacks very often and if I do, I can identify them very early (20+ min before).

        In hindsight, coming home, eating, sleeping doesn't sound like normal energy levels. But I was only told that I was being lazy and convinced myself I wasn't a morning person and that being around people all day drained my energy this much.

        Ty for asking and reading 😀

      2. Heya! Your diagnosis discovery sounds like mine! I also went on the internet and found narcolepsy and then told my doctor!

        I do have narcolepsy type 1 but I can definitely relate to your experience with being told that you were lazy etc...I think a lot of us get that unfair reputation a lot...sometimes even after we're diagnosed too unfortunately. 🙁

        Thanks soo much for sharing!! Hope things are better now!

        Take care, Iris x

    3. It started six or more years ago. Got diagnosed this year, I'm 36. Was way tired though my whole life though.

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