Community Views: Earliest Symptoms of Narcolepsy
Often, narcolepsy and other sleep disorders are not diagnosed until you're in your 30s or even later. But, looking back, many community members realized that they had displayed signs of a sleep disorder even as far back as grade school.
To find out more about the earliest symptoms of narcolepsy that community members experienced, we reached out on the Narcolepsy.Sleep-Disorders.net Facebook page and asked: "What were your initial symptoms of narcolepsy?"
More than 100 people responded. Here is what they shared.
Needing to nap from an early age
Many community members shared that, from a young age, they needed to nap to get through the day. For some, this started as early as first grade when naps were no longer part of the daily schedule.
"I had to stay in from recess and nap when I was younger."
"I could not get through the day without a nap, even after we were not allowed to in school. I was also teased and ridiculed as a 9-year-old for needing a nap after school."
"I always wanted to nap. I was very upset that we were not allowed to nap in the first grade. I always dozed off during silent reading in school."
Not being able to stay awake
The biggest sign that many people mentioned was that they could not stay awake during the day – and that was not the exception. Rather, every day, it was all but impossible to stay awake whether at school, on the job, or while driving.
"I could not stay awake or remember anything day to day."
"I could not stay awake in high school, not even in my favorite classes."
"Falling asleep in class in high school. Teachers just accused me of staying up late or not getting enough sleep."
Falling asleep in class while appearing awake
It is common to experience an in-between state, something that is not quite asleep or awake. This is often referred to as "automatic behaviors." A handful of community members shared that they started noticing this behavior in college, when they were taking notes in class despite being not fully awake.
"I would doze off in class while still taking (not very legible) notes when I was in college."
"In college, I continued to take notes during class despite falling asleep. They became illegible, but to my professors and peers, I appeared awake as long as they did not look too closely. I actually would look up at the board and back down, too."
Having vivid dreams
A few community members shared that even at the age of 4, they realized that the dreams they experienced were far more vivid than those that others experienced. Moreover, because people with sleep disorders often experience a sleeplike state during the day, it is common to hallucinate during the day, which can be incredibly scary or disturbing.
"As a kid, I had weird dreams where I could see things when I was clearly awake."
"The vivid dreams for me. I thought everyone dreamt like that."
"In hindsight, it was the vivid dreams."
"The vivid dreams/nightmares."
"When I was 4, I realized all the hallucinations I experienced were not normal either."
Many community members also shared that they experienced cataplexy, which is sudden muscle weakness often triggered by emotions such as laughter. Curiously enough, those of you who mentioned dealing with cataplexy as children shared that the adults in your life assumed that it was epilepsy.
Cataplexy is a difficult symptom to experience. One benefit that was shared, though, is that it was such a departure from the typical that someone took them to see the doctor. In a few cases, this resulted in learning of the narcolepsy diagnosis.
"Cataplexy so severe we thought it was epilepsy."
"Cataplexy from laughing. My mom took me to the doctor for the cataplexy."
"They thought I had epilepsy at first because of the cataplexy."
We want to say thank you to everyone who shared their experiences for this article. We appreciate hearing such a variety of perspectives!
Where are you in your narcolepsy diagnosis journey?