At What Age Were You Diagnosed With Narcolepsy?

A timely narcolepsy diagnosis can make a huge difference in the lives of people living with this chronic sleep condition. But diagnosing narcolepsy can be challenging, especially in children who may not be able to articulate their symptoms. What’s more, narcolepsy symptoms can often mimic other health disorders, which can lead to a misdiagnosis.¹

The Narcolepsy.Sleep-Disorders.net team community recently answered the question, “At what age were you diagnosed with narcolepsy?” Community members shared insights into their diagnosis.

Diagnosed as children or teenagers

Narcolepsy in children is rare, but it can still happen. Many community members who were diagnosed as children explain that their symptoms were often mistaken for another health condition. And in some cases, people’s symptoms were brushed off as them “being lazy” or “not a morning person.” Here are their experiences:¹

“I was 5 years old. It started with my kindergarten teacher noticing that I was falling asleep a lot, and it was hard to wake up after nap time. I’d also have a hard time doing math, as it would make me extremely exhausted. They actually thought I had muscular dystrophy because of my cataplexy. I am now 26.”

“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.”

“I was diagnosed with narcolepsy at the age of 10.”

“16, had struggled since 12. I was 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. I ended up in the 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. It turns out I do have narcolepsy.”

“17 – the same year I had to take my A level exams. I used to be an A+ student and found school relatively easy, but now I feel so far behind my peers. I'm struggling a lot to revise and complete my exams in time, even with rest breaks.”

“At 9 years old, I had a CT scan, EEG, and blood test, but they found nothing wrong. They at least ruled out epilepsy. When I was a teen I complained about falling asleep during the day. The answer was, 'It's normal for teens to be tired.’ A year later I was sent to a neurologist. He asked for all the sleep tests, and they confirmed that I had narcolepsy. I was 17 years old.”

Diagnosed as adults

A common theme among community members was getting a narcolepsy diagnosis after many years of struggling with frustrating symptoms.

“I was 22 but had symptoms since I was 2.”

“22 – the summer between my junior and senior year of college.”

“Diagnosed at 35 because my spouse thought I had sleep 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.”

“Got diagnosed this year, I'm 36. Was way tired though my whole life though.”

“I was nearly 50 years old when I finally got a doctor to listen to me and started ordering tests.”

“I was diagnosed in 2017. I am currently 56 years old. I had a few sleep studies done in my 30s and 40s and had been diagnosed with various maladies to explain away my frequent falls and was diagnosed with excessive daytime sleepiness and circadian rhythm disorder, but nothing else. I had MRIs and CTs to rule out brain tumors, MS, and many other serious diseases. They always came up negative until FINALLY a sleep study and NAP study read by a sleep specialist who was willing to dig deep, diagnosed me with narcolepsy type 1. I had experienced symptoms since my late teens but never put the symptoms together.”

“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 when I was young. The VA doctors confirmed what I suspected, and now I finally have the hope I need to deal with my condition.”

Thank you

We appreciate everyone who shared their diagnosis story and what age they were diagnosed with narcolepsy. Learning from one another helps everyone feel seen and supported. Please continue to share your narcolepsy diagnosis stories with us. They truly matter!