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Narcolepsy Fast Facts

This page provides a quick overview of narcolepsy.  For more detailed information, please explore the rest of our website.
Printable version:  Narcolepsy Fast Facts

Narcolepsy affects an estimated 1 in every 2,000 people in the United States.  That’s hundreds of thousands of Americans, and approximately 3 million worldwide.

It is estimated that only 25% of people in the U.S. who have narcolepsy have been diagnosed and are receiving treatment.

Symptoms of narcolepsy include excessive daytime sleepiness, sleep attacks, cataplexy, sleep paralysis, hallucinations, and disrupted nighttime sleep.

Cataplexy is an episode in which strong emotion causes a person to suffer some degree of sudden physical collapse though remaining conscious.  Cataplexy may be as extreme as a full body collapse, or less severe such as a slack jaw.  Not everyone who has narcolepsy experiences cataplexy.

Cataplexy is unique to narcolepsy. No other disease has cataplexy as a symptom.

Symptoms typically begin to occur between the ages of 10 and 30, although narcolepsy can occur at any age.

Narcolepsy can be difficult to diagnose because some of its symptoms, such as chronic fatigue, are common to many conditions. The average time between the onset of symptoms and diagnosis is seven years.

Narcolepsy is diagnosed through a sleep study, a set of medical tests requiring an overnight stay in a sleep lab.

Misdiagnosis is common. In a recent study, 60% of patients were initially misdiagnosed. The most common misdiagnosis was depression (almost one third of the patients), followed by insomnia and obstructive sleep apnea. (Patients’ Journeys to a Narcolepsy Diagnosis; Lawrence P Carter, PhD, Christine Acebo, PhD, AnnY Kim, MA)

Scientists have confirmed that narcolepsy is caused by the loss of brain neurotransmitters called hypocretin (also known as orexin). These neurotransmitters are involved in the regulation of the sleep/wake cycle as well as other bodily functions such as blood pressure and metabolism.

Research is underway to determine what causes the loss of hypocretin (orexin). In 2013, two separate studies linked increases in another neurotransmitter, histamine, to the loss of hypocretin (orexin).

Researchers have identified a gene that is linked to narcolepsy. About one quarter of the general population in the U.S. carries the genetic marker for narcolepsy, but only one person out of about 500 of these people will develop narcolepsy.

Environmental factors may also play a role in the development of narcolepsy.

Medications and lifestyle adjustments can improve the lives of those affected by narcolepsy.