caret icon Back to all discussions

At What Age Were You Diagnosed With Narcolepsy?

  1. 49

    1. Hi . Welcome to the community! Did you experience symptoms for a long time before your diagnosis or was your narcolesy triggered later in life. Do you feel it's well-managed now? Wishing you the best. - Lori (Team Member)

  2. At the old age of 42.
    But as a daydreamer in elementary school to an afternoon napper in jr high and high school (also with comordity nightmares with snakes from being chased by evil person with a snake)
    Went to shrink in my 20s from stuck in an enmeshed family and asked for Ritalin at 30.
    After 30 days on Ritalin was told by shrink that I felt more confident “prooved that I got high. I disagreed and went to a child psychiatrist who said I obviously had ADD w/o hyperactivity and distracted myself.

    1. Hi . It sounds like you've had a long journey. Still, I am glad you finally got a diagnosis. Are you on a good treatment plan now? Best wishes. - Lori (Team Member)

  3. I was diagnosed with narcolepsy at the age of 25. My whole life I have suffered with severe sleep attacks. I would fall asleep EVERYWHERE! In elementary school, I would collect dust from under my desk and put it in my eyes to stay up.

    1. You must have been so desperate. My heart goes out to the younger you. Were your teachers at least compassionate or supportive even if you didn't have a diagnosis? - Lori (Team Member)

  4. 35. Some symptoms starting age 4, such as dreaming while awake and being aware of things that happened while I appeared to be sound asleep. Symptoms were full-blown at age 15; my doctor said this may have been because that was when I began working full-time while going to school. Symptoms are exacerbated by stress and lack of a regular sleep schedule; I was working second shift and staying up several hours past my self-imposed bedtime of 9pm, getting only 6 hours of sleep a night when I need 9.

    I was diagnosed with an unspecified sleep disorder at age 20. My first overnight sleep study at age 34 was read by a pulmonologist who did not understand narcolepsy. My second sleep study was a 24-hour one with 5 scheduled naps. That one was ordered by a pulmonologist who specialized in sleep disorders; she diagnosed me based on how quickly I fall asleep after lying down, and the number of times I wake up during REM sleep.

    1. I have been, for 20 years now. But my doc just retired and it's difficult to find sleep specialists taking new patients.

    2. Starting over can be tough. I hope you find someone soon. - Lori (Team Member)

Please read our rules before posting.