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At What Age Were You Diagnosed With Narcolepsy?

  1. 40

    1. Hi . I see you are new here. Welcome to the community! Did your symptoms begin close to age 40 or do you think you had narcolepsy already for a long time? Was it difficult to get a diagnosis? Thinking of you and wishing you the best. - Lori (Team Member)

  2. I was diagnosed with narcolepsy at age 9, though my symptoms started around age 6, with severe cataplexy hitting at age 7. Any sudden emotion, like laughter or being startled, would cause my legs to buckle, and I’d fall down—it was terrible. I would fall asleep everywhere: in the car, classrooms, even while playing baseball and soccer. In the late '80s and early '90s, knowledge about sleep disorders was still developing. My case was rare because of my young age. I vividly remember all the doctor appointments and sleep studies, from the Multiple Sleep Latency Test at the hospital to at-home sleep studies for sleep apnea on top of narcolepsy.

    School was the worst, especially because of the early start times. I couldn’t function in the morning, so starting class at 8:15 in elementary school was like hell—I slept through every class until about 12:30. I was prescribed Cylert and then Ritalin, which was a roller coaster. By high school, I gave up, threw my pills away, and stopped trying. My parents, though loving, didn’t fully grasp the severity of narcolepsy. They understood what the doctors told them but didn’t seek further information or advocate for me, remaining in denial about the lifelong impact of the condition.

    1. What a difficult journey, . If you don't mind me asking, what path did you take after giving up on treatment? Were you able to graduate high school and, eventually, support yourself? Have you found any kind of effective treatment since? Gentle hugs. - Lori (Team Member)

  3. I was diagnosed with narcolepsy at 70 by VA doctors. I think I've had it since I was born, but I didn't get a diagnosis until I was young. The VA doctors confirmed what I suspected, and now I finally have the hope I need to deal with my condition.

    1. Hi . I see you are new to the community. Welcome! It must be a relief to finally know exactly what you are dealing with after all those years. Has treatment helped improve your quality of life? Warmly, Lori (Team Member)

  4. Behavioral elements of narcolepsy treatment involve lifestyle strategies that are meant to combat excessive daytime sleepiness, prevent accidental injuries, and fortify physical, mental, and emotional health. People with narcolepsy can adapt these non-medical treatment methods to fit their individual situation1. Here are some key behavioral approaches:

    Planned Naps: Scheduled napping can help people cope with daytime drowsiness. After a brief period of sleep, most people with narcolepsy wake up refreshed. Planned naps can heighten alertness at key parts of the day and prevent them from falling asleep involuntarily.
    Remember that while behavioral approaches are important, a combination of therapies (including medications) is often recommended for managing narcolepsy symptoms effectively1. If you have any specific concerns or need further information, consulting a doctor experienced in treating narcolepsy is essential.I

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