Growth and Development Conditions and Diagnoses

Narcolepsy

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Narcolepsy is a serious sleep disorder that can be very disabling. Individuals with narcolepsy experience constant sleepiness and an ongoing struggle to stay awake. The sleepiness in narcolepsy is so significant that people with the disorder often fall asleep in inappropriate places. The state of sleepiness in narcolepsy often does not improve with increased sleep. If this disorder is not appropriately diagnosed and treated it can be very devastating to the individual's quality of life.

Narcolepsy is not a common disorder. Approximately 1 in 2000 people has the condition. It also goes undiagnosed in many individuals. It is estimated that as many as 200,000 Americans have narcolepsy but that fewer than 50,000 cases have been diagnosed. There is equal predominance in males and females. Onset typically occurs after puberty, with most individuals reporting symptoms between the ages of 15 and 30 years of age. Narcolepsy is rarely diagnosed during childhood (4% of all cases diagnosed before age 15).

Cause of Narcolepsy

Currently an exact cause of the disorder and a cure have not yet been found. However, there is much ongoing research to help better understand the causes of narcolepsy. New approaches to assessment and treatment are improving our understanding of this sleep disorder. Narcolepsy appears to be related to a disruption in the area of the brain that controls sleep / wakefulness.

People with narcolepsy demonstrate behaviors commonly associated with dreaming (e.g., loss of muscle control) while awake. Sometimes narcolepsy may run in families.

Signs of Narcolepsy

Symptoms that are common among individuals with narcolepsy include:

Excessive daytime sleepiness
Sleep paralysis (i.e., brief loss of muscle control when falling asleep or waking up)
Cataplexy (i.e., sudden loss of strength in muscles typically triggered by an emotional event [laughing / crying / fear])
Hypnagogic hallucinations (i.e., hallucinations that typically occur just prior to sleep onset, while napping, or just prior to falling asleep; these experiences may be frightening or upsetting)
Disrupted sleep at night (e.g., difficulty sleeping through the night)
Automatic behaviors (i.e., simple routine tasks that are performed without awareness)

What to do if you are experiencing signs of narcolepsy

If you are experiencing symptoms of narcolepsy that are having a negative impact on your day to day functioning, it is important that you be formally evaluated by a sleep specialist. A comprehensive evaluation should include a thorough physical examination to rule out any medical illness that may be causing the sleep disruption.

Additionally, a sleep specialist will typically conduct a formal overnight sleep study which includes two tests:

Polysomnography (PSG)
Multiple sleep latency test (MSLT)

PSG requires you to sleep overnight in a sleep laboratory while your sleep is monitored. This test allows the sleep specialist to determine if there are any other sleep disorders that may be contributing to your sleep difficulties.

MSLT is a nap study the day following PSG to determine your level of sleepiness and sleep patterns during a series of scheduled naps. The results of the PSG and MSLT are used to diagnose narcolepsy.

Treatments

There is ongoing research examining new and improved treatments for narcolepsy. While we do not currently have a cure for the disorder, there are treatments that can help manage the symptoms and improve the quality of life for people experiencing narcolepsy. Typical treatment involves a multi-component approach that includes:

Medication (to be prescribed by a sleep specialist; there are medications to help control sleepiness, cataplexy, sleep disturbance and hallucinations)
Behavioral modification:

Regular sleep / wake schedule
Safety precautions around activities that could result in injury if you fell asleep (e.g., driving)
Short naps to improve alertness may help
Consistent use of prescribed medications

Environmental management:

Provide information to family, friends, co-workers, employers and other individuals with whom you have frequent contact regarding the nature of the disorder and how it may impact your functioning
Plan and prepare for future impact of the condition on family and work
Seek out community supports; there may be narcolepsy support groups that can provide helpful reassurance from others with a similar experience