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Narcolepsy 101: What It Is and What You Can Do

May 07, 2020

Narcolepsy is a rare but serious sleep disorder with often-alarming symptoms: excessive sleepiness, sleep “attacks” (falling asleep without warning), hallucinations, paralysis, and cataplexy (an episode in which a strong emotion, such as fear, causes muscle weakness or paralysis). Different types of narcolepsy can be difficult to diagnose because their symptoms tend to begin gradually and grow in severity over time; it is frequently confused with depression or other sleep conditions.

Narcolepsy affects about 1 in 2,000 people—though many are not diagnosed—and is a lifelong disease with no known cure that must be managed with medicine and lifestyle changes. The first symptoms generally are noticed between the ages of 10 and 30, but they can begin at any time.

Causes of Narcolepsy

Narcolepsy causes relate to a lack of a brain neurotransmitter called hypocretin, which regulates the sleep-wake cycle, as well as blood pressure and metabolism. When the body does not produce enough hypocretin, it no longer maintains the normal boundaries between sleep and wakefulness. Scientists aren’t sure exactly what causes this to happen, but research points to a combination of genetic and lifestyle factors.

In the late 1990s, scientists identified a gene associated with narcolepsy. However, about a quarter of the U.S. population carries this genetic marker, and the vast majority do not suffer from narcolepsy. Researchers are studying the role of various environmental factors, including certain viruses, in triggering the onset of the disease, and autoimmune response is known to play a role.

Types of Narcolepsy

There are two types of narcolepsy that can be broadly categorized:

  • Type 1 includes all five of the major symptoms: excessive sleepiness, sleep attacks, hallucinations, paralysis, and cataplexy. People with narcolepsy (Type 1) have low levels of hypocretin in the brain.
  • Type 2 features all the same symptoms except for cataplexy. People with narcolepsy (Type 2) tend to have less severe symptoms and normal levels of hypocretin.

This sleep disorder can be characterized as either mild or severe, with severe symptoms having a more drastic impact on a person’s life, causing problems such as vivid hallucinations while awake or falling asleep in the middle of a conversation.

Treatment for Narcolepsy

There is currently no cure for the destruction of the brain cells that produce hypocretin. However, many people can manage quite well with narcolepsy treatments, which include a combination of medication, lifestyle changes, and complementary therapies.

  • Medication: The first narcolepsy treatment patients can try is medication. Stimulants that promote wakefulness can be used to control excessive daytime sleepiness and you and your doctor may find that a combination of these medicines is most effective. Antidepressants that suppress REM sleep can control hallucinations, cataplexy, and sleep paralysis.
  • Lifestyle changes: If medication isn’t the narcolepsy treatment you and your doctor think is best, lifestyle changes can also be helpful. Practicing good sleep hygiene is one of the most important lifestyle modifications to help with narcolepsy. People with narcolepsy should limit stimulating foods, caffeine, sugar, alcohol, and tobacco several hours before bed. Seeking out natural sunlight during the day, and avoiding it closer to bedtime, helps to strengthen the circadian rhythm. And joining a support group, which can be found on Facebook or through an organization such as the Narcolepsy Network, can be a valuable way of learning and sharing advice and coping mechanisms.
  • Complementary therapies: Many people with narcolepsy find that nontraditional approaches, such as herbal remedies, massage, acupressure, and meditation have a positive effect on their symptoms. Ensure that your doctor knows about any alternative therapies you are undergoing to avoid dangerous drug interactions.

Do I Have Narcolepsy?

Ask yourself these questions:

  • Do I feel an overpowering need to sleep during the daytime?
  • Do I have strange, vivid dreams or realistic hallucinations on waking or when falling asleep?
  • Have I ever had a sudden weakness or surprising relaxation,such as my mouth or eyes drooping, especially in concurrence with a strong emotion?
  • Have I ever been incapable of moving as I was falling asleep or waking up?

Narcolepsy is poorly understood and may affect many areas of a patient’s life. When not well-managed, it can cause a sudden loss of control that can be extremely dangerous if you are, for instance, driving. If you believe you have symptoms of narcolepsy, it’s important to see a physician or a sleep specialist to undergo narcolepsy tests and get a diagnosis. There are several diagnostic tests now available, which can make this a much less frustrating experience than in years past.

About 95 percent of people with narcolepsy find beneficial narcolepsy treatments, which help them enjoy an improved lifestyle. So if you have any of the symptoms, see your doctor right away. You can learn more about the causes of narcolepsy, as well as its symptoms and treatments here.

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