Fatigue and sleepiness are common, especially among people with mental health conditions. However, narcolepsy is more than just being tired. People with narcolepsy experience periods of an irrepressible need to sleep or lapsing into sleep (“sleep attacks”) multiple times within the same day.

Narcolepsy affects an estimated one in 2,000 adults. It typically begins in childhood, adolescence or young adulthood. Half of the people with narcolepsy never receive a diagnosis, and the diagnosis often happens many years after symptoms begin. It is under-recognized and underdiagnosed in part because the primary symptom of fatigue is common to many disorders.

Symptoms and Diagnosis

Sleepiness typically occurs every day, but must occur at least three times a week for at least three months for a diagnosis of narcolepsy. Symptoms of narcolepsy can include excessive daytime sleepiness, sleep attacks, sleep paralysis (brief inability to move or speak when falling asleep or waking up), and disrupted nighttime sleep.

Many, but not all, people with narcolepsy also experience episodes of cataplexy, a brief, sudden loss of muscle tone triggered by strong emotions. The episodes are more frequently triggered by positive emotions (most commonly laughter) than negative emotions (such as anger or frustration). These episodes typically last just seconds to two minutes. They can affect muscles in the neck, arms, legs or whole body, and can result in head bobbing, jaw dropping, or collapsing or falls. Individuals who experience cataplexy are awake and aware during it.

Diagnosing narcolepsy initially involves taking a medical and family history and completing a physical exam. Having a family history of narcolepsy can increase a person’s risk.

Type 1 narcolepsy: Narcolepsy type 1 involves a person experiencing episodes of cataplexy and having a deficiency in hypocretin, a neurotransmitter that helps regulate wakefulness and REM sleep. Levels of hypocretin can be tested in the cerebrospinal fluid via a spinal tap. In most individuals with type 1 narcolepsy, the first symptom is sleepiness or increased sleep need, followed by cataplexy.

Type 2 narcolepsy: People with narcolepsy Type 2 do not experience cataplexy. Narcolepsy type 2 is diagnosed based on a thorough review of clinical symptoms, an overnight sleep study (polysomnography), and a multiple sleep latency test to assess daytime sleepiness (measuring how quickly a person falls asleep and whether REM sleep appears during brief daytime naps).

Narcolepsy can range in severity from mild, requiring naps only once a day with little or no sleep disturbance, to severe, with near constant sleepiness and significantly disturbed nighttime sleep and cataplexy (when present) occurring multiple times a day. Up to 33% of people with narcolepsy also have sleep apnea.

 

Treatment and Coping

While there is no cure for narcolepsy, treatment and coping strategies can significantly reduce symptoms and improve quality of life. Treatment and coping can involve a range of medications, therapies, and behavioral and environmental changes. Several medications to help with symptoms of narcolepsy are available, and several more are in development. Medications can be used to help address cataplexy, improve nighttime sleep, or address daytime sleepiness and improve wakefulness.

Behavioral strategies can include following regular, structured sleep routines, making changes in diet, and taking scheduled short naps. Experts generally recommend a 15 to 30-minute nap. (Read more here: 5 Perspectives on Napping for Narcolepsy Patients | Sleep Review). Cognitive behavioral therapy can also be helpful in coping with emotional and practical challenges of narcolepsy.

Learn more

• Psychiatric News: Why Narcolepsy Is Often Missed—and How to Spot It
• NIH, National Institute of Neurological Disorders and Stroke, Narcolepsy: general overview
• Harvard Medical School: NARCOLEPSY | Sleep Medicine
• Sleep Review: 5 Perspectives on Napping for Narcolepsy Patients
• APA, more on Sleep Disorders