Connect with others who understand.

sign up log in
Resources
About MyNarcolepsyTeam
Powered By

5 Facts About Narcolepsy That Aren't Well Known

Posted on October 04, 2021
View reactions
Medically reviewed by
Allen J. Blaivas, D.O.
Article written by
Anika Brahmbhatt

If you or a loved one is living with narcolepsy, you’ve probably spent a lot of time researching the condition and trying to understand the most essential information about its causes, symptoms, and progression. But even the most detail-oriented researchers may not know every fact about narcolepsy, because the disease has so many variables from one person to the next.

By learning five lesser-known facts about narcolepsy, you can deepen your understanding of the condition. Ultimately, more knowledge can empower you to self-advocate as you travel along your narcolepsy journey.

Fact 1: Diagnosing Narcolepsy May Take Years

It can take several years for people with narcolepsy to get an accurate diagnosis because they are often first misdiagnosed with a different condition. According to the American Academy of Sleep Medicine, the average delay in getting diagnosed with narcolepsy is between 8 and 10 years.

People may instead be diagnosed with psychiatric conditions, such as depression, as well as conditions like obstructive sleep apnea or insomnia.

Fact 2: Hallucinations Can Indicate Narcolepsy

Some people think hallucinations are only related to psychological conditions, but in reality, certain kinds of hallucinations can actually be symptomatic of narcolepsy. Sleep paralysis that affects people with narcolepsy can come with extremely realistic and frightening hallucinations. Most hallucinations are visual, but other senses can also be involved.

Fact 3: Exercise May Ease Narcolepsy Symptoms

Several studies have explored the connection between physical activity and narcolepsy symptoms. Results suggest that exercise can reduce sleepiness and the number of cataplexy episodes (periods when muscle tone suddenly drops) that people with narcolepsy experience.

Regular exercise may be among the lifestyle changes that your health care team recommends as a way to reduce your narcolepsy symptoms. However, experts say that to contribute to positive sleep habits, you shouldn’t exercise too close to bedtime. Instead, ensure that you leave at least two hours between your physical activity and when you go to bed.

Learn more about healthy living with narcolepsy.

Fact 4: Traumatic Brain Injuries May Be Connected to Narcolepsy

In most cases, the cause of narcolepsy is not completely understood — however, there are instances where outside factors are involved. For instance, in some rare cases, a traumatic injury to the part of the brain that regulates sleep can result in the development of narcolepsy.

Narcolepsy is not the only sleep disorder that can result from a traumatic brain injury: Sleep apnea, periodic limb movement disorder, and parasomnias may also occur following injuries to the brain. In addition, brain injuries can lead to pain and mood issues, which may also impact sleep.

Fact 5: Narcolepsy Is Underdiagnosed in Children

Although a person can develop narcolepsy at any age, symptoms typically begin between the ages of 10 and 30. Diagnosis often happens around two key peak age periods: at 15 years and at 36 years.

The condition is believed to be underdiagnosed in children and adolescents, which researchers attribute to a lack of awareness among clinicians regarding the different ways the condition may present.

Talk With Others Who Understand

On MyNarcolepsyTeam, the social network for people with narcolepsy and their loved ones, more than 7,000 members come together to ask questions, give advice, and share their stories with others who understand life with narcolepsy.

Which narcolepsy facts do you find the most compelling? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Posted on October 04, 2021
View reactions
All updates must be accompanied by text or a picture.
Allen J. Blaivas, D.O. is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Anika Brahmbhatt is an undergraduate student at Boston University, where she is pursuing a dual degree in media science and psychology. Learn more about her here.

Related articles

Narcolepsy is a rare sleep disorder that can cause excessive daytime sleepiness, sudden loss of m...

Is Narcolepsy Linked to Vitamin Deficiency?

Narcolepsy is a rare sleep disorder that can cause excessive daytime sleepiness, sudden loss of m...
The Centers for Disease Control and Prevention (CDC) approved a second COVID-19 booster shot of t...

What People With Narcolepsy Should Know About Getting a Second COVID-19 Booster Shot

The Centers for Disease Control and Prevention (CDC) approved a second COVID-19 booster shot of t...
Narcolepsy can be frightening and unpredictable, affecting something that most people take for gr...

Facts and Statistics About Narcolepsy

Narcolepsy can be frightening and unpredictable, affecting something that most people take for gr...
Since the late 19th century, doctors have described a condition characterized by excessive daytim...

Etymology and History of Narcolepsy

Since the late 19th century, doctors have described a condition characterized by excessive daytim...
Narcolepsy is a neurological sleep disorder that affects approximately 1 in every 2,000 people. N...

Sleep Cycles and REM Sleep in Narcolepsy

Narcolepsy is a neurological sleep disorder that affects approximately 1 in every 2,000 people. N...
What Is Narcolepsy? Narcolepsy is a neurological sleep disorder. In people with narcolepsy, the ...

Narcolepsy — An Overview

What Is Narcolepsy? Narcolepsy is a neurological sleep disorder. In people with narcolepsy, the ...

Recent articles

Although narcolepsy and schizophrenia are two different kinds of conditions, they can look alike ...

Narcolepsy and Schizophrenia: What’s the Connection?

Although narcolepsy and schizophrenia are two different kinds of conditions, they can look alike ...
Do you often feel fatigued during the day, even after getting enough sleep? You may be wondering ...

Narcolepsy vs. Chronic Fatigue Syndrome: What’s the Difference?

Do you often feel fatigued during the day, even after getting enough sleep? You may be wondering ...
Apart from experiencing the major symptoms of narcolepsy — excessive daytime sleepiness, involunt...

Feelings of Detachment: Dissociative Symptoms in Narcolepsy

Apart from experiencing the major symptoms of narcolepsy — excessive daytime sleepiness, involunt...
Narcolepsy is rare, affecting fewer than 1 in every 100,000 children. Childhood narcolepsy is a l...

How To Identify and Manage Narcolepsy Symptoms in Children

Narcolepsy is rare, affecting fewer than 1 in every 100,000 children. Childhood narcolepsy is a l...
Narcolepsy affects about 1 in 2,000 people in the United States. The condition causes symptoms in...

Hypothyroidism and Narcolepsy: Is There a Connection?

Narcolepsy affects about 1 in 2,000 people in the United States. The condition causes symptoms in...
People with narcolepsy of any type experience eating disorders at a higher rate than the general ...

What You May Not Know About Eating Disorders and Narcolepsy

People with narcolepsy of any type experience eating disorders at a higher rate than the general ...
MyNarcolepsyTeam My narcolepsy Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close