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.