At What Age Were You Diagnosed With Narcolepsy?

Diagnosed in 2000.age 44. First symptoms 1973,age 17. I am 68, now. And trying to understand why they request an updated sleep study, when I have been blessed to find medicine that worked for me.

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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.

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.