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At What Age Were You Diagnosed With Narcolepsy?

  1. Well at 13 in my primary 7 in Africa Uganda. No one ever accepted it was a disease other than my mother and doctor. Everyone attributed me to being a sleepy head. I am now 41 yrs and still pipo believe am a sleepy head

    1. Hey Senives! I can relate completely to you! I'm Portuguese/Angolan but I was diagnosed while I was living in Angola. Even though I was slightly older when I was diagnosed (2😎 nobody ever really took it seriously. At my job people always laughed when I fell asleep. Africa unfortunately still has such a long way to go to become educated on these issues! 🙁

    2. thanx for the response. I now actually self medicate. It has supported me alot though now in my 40s I fear taking much meds due to possible side effects

  2. I was diagnosed with narcolepsy at the age of 10

    1. Wow that's quite young! How are old are you now if you don't mind sharing? Best wishes, Iris

  3. Diagnosed at 35 because my spouse thought I had Apnea. I thought tired was a way of life. In retrospect, falling asleep while standing in public is not a normal thing for a kid to do.. Nor the hallucinations when I was a child, but parents thought I was awake and just wouldn't move. Was told it was night terrors.

    1. I am 65 and diagnosed 9 months ago. that by itself is astonishing. but . based upon the data it was activated by extreme extensive stress (there is evidence it is a viral based disease- I didn't have Covid but....). No matter I have it. Working, making a life in a brand place it is not exactly how I imagined the last part of life would roll. Meds are wicked hard. Getting friends to understand this not i just an "i am tired" situation is challenging. In away doesn't all seem like a bad dream?

      1. I was diagnosed formally in mid thirties although I had by then been on Dextromine for ADD for years. I was diagnoised with Narcolepsy, severe restless leg syndrome, Klein Levin Syndrome, apnea, and more recently hypersomulence.
        I find making and keeping friends very difficult. Not only am I reliably unreliable, there are times I just can’t get up at all for days. I can be in the middle of an activity and suddenly lose the ability to continue, to think or explain.I have very little short term memory and there are times no matter what is happening I have to lay down. Anywhere will do bed sofa car floor it doesn’t matter.
        As I age this becomes worse and people don’t understand besides the average Joe will not the time to understand the ramifications of having a sleeping disorder. However there are beautiful things I can do see and feel the everage Joe will never experience. So me and dogs carry on alone in a world that basically only holds production, money, and power as valuable . Really kind of sad huh?

      2. I'm so sorry to hear this! Wow can't believe it has taken so long for you to get a diagnosis, that's terrible. It is unfortunately a struggle most of us deal with unfortunately - having to educate everyone on our condition whilst also defending our symptoms in a way. It can be exhausting. How are you coping since your diagnosis? Are you dealing well with your medication? Thanks so much for sharing with us! Best wishes, Iris (Team Member)


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