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Facts and Statistics About Narcolepsy

Posted on December 27, 2021
Medically reviewed by
Allen J. Blaivas, D.O.
Article written by
Ryan Chiu, M.D.

Narcolepsy can be frightening and unpredictable, affecting something that most people take for granted — a normal sleep schedule. Daytime sleepiness and “sleep attacks” can affect your quality of life and your ability to do the same things that others enjoy.

In this article, you’ll find interesting and important facts about narcolepsy, its causes, how common it is, and how it is diagnosed and treated.

What Causes Narcolepsy?

  • Narcolepsy is tied to a part of your brain called the hypothalamus, which normally controls your appetite, sexual arousal, and your body’s natural, regular sleep-wake cycles.
  • Specifically, there are nerve cells (neurons) in the hypothalamus that transmit a molecule called hypocretin (orexin), keeping you awake. Narcolepsy affects these neurons.
  • This loss of hypocretin neurons is now thought to be due to your body’s immune system attacking those cells, causing an autoimmune disease.

Prevalence: How Common Is It?

  • Narcolepsy is a relatively rare sleep disorder (compared to more common conditions like insomnia or obstructive sleep apnea) — affecting about 1 in every 2,000 people in the general population.
  • There are two types of narcolepsy — type 1 and type 2 — depending on whether there is cataplexy. Cataplexy is the sudden loss of muscle tone or muscle weakness that can cause unexpected falls and collapses.
  • Narcolepsy type 1 (narcolepsy with cataplexy) is linked with low hypocretin levels. Narcolepsy type 2 does not involve cataplexy. Hypocretin levels may also be low in those with type 2 narcolepsy.
  • Misdiagnosis of narcolepsy is unfortunately very common, with some estimates saying that up to 60 percent of people may be misdiagnosed with another psychological or neurological disorder.
  • About half of actual instances of narcolepsy go undiagnosed.

Symptoms of Narcolepsy

  • Excessive daytime sleepiness is usually the first reported symptom of narcolepsy, followed by irresistible urges to sleep (“sleep attacks”).
  • When sleep attacks happen, the body may jump straight to rapid eye movement, or R.E.M. sleep (the period of sleep when we can experience vivid dreams).
  • Compared to people with other people with disorders that cause sleepiness, people with narcolepsy usually wake up from short naps fully awake, alert, and energized.
  • People with narcolepsy have the same total hours of sleep per day as other people but are still very sleepy.
  • Narcolepsy usually involves sleep paralysis — a condition where you’re unable to move your arms or legs after waking up, hypnagogic hallucinations (seeing/hearing things that aren’t there right before going to sleep), or hypnopompic hallucinations (right after getting up).
  • Vivid dreams are also often a symptom of narcolepsy.
  • Cataplexy episodes are usually triggered during stressful times or while feeling strong emotions. Not all people with narcolepsy have cataplexy.
  • People with narcolepsy have a tendency toward obesity or being overweight. Adults often gain 10 percent to 15 percent more weight than people without narcolepsy, with very sudden weight gain in the first few months after narcolepsy starts.

Diagnosis of Narcolepsy

  • Narcolepsy is usually diagnosed through a multiple sleep latency test (MSLT), which measures how long it takes for you to enter sleep during the day, after a full night of sleep.
  • In order to rule out other sleep disorders like sleep apnea, a sleep study (polysomnogram) might be performed — a machine will monitor your breathing while you sleep. This is usually done on the night before the MSLT.

Treatment Options

  • Non-drug-related strategies like having stricter sleep routines/schedules, avoiding coffee before normal bedtime, and scheduling “power naps” during the day can greatly help people with narcolepsy.
  • Many drugs that are normally used for depression called antidepressants can also be used as first-line treatments for narcolepsy, although a person living with narcolepsy might not be depressed. These medications may improve alertness and treat cataplexy.
  • Certain medications can help people with narcolepsy fall asleep more quickly during “normal sleep periods” (at night, for most people) — this commonly includes sodium oxybate.
  • Other drugs can also help keep you awake during the day. These drugs are generally known as stimulants and go by several names, including amphetamines, methylphenidate, and modafinil.

Talk to your doctor about your symptoms, current medical conditions, and any medications you are taking or have tried, as well as their side effects. Specialized health care providers practice in an area called sleep medicine that specifically deals with sleep disorders such as narcolepsy.

Talk With Others Who Understand

MyNarcolepsyTeam is the social network for people with narcolepsy. On MyNarcolepsyTeam, thousands of members come together to ask questions, give advice, and share their stories with others who understand life with narcolepsy.

Are you or a loved one living with narcolepsy? Have you found any information or treatments to be helpful? Share your experience in the comments below, or start a conversation by posting on MyNarcolepsyTeam.

All updates must be accompanied by text or a picture.
Allen J. Blaivas, D.O. is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Ryan Chiu, M.D. obtained his medical degree from the University of Illinois College of Medicine in 2021. Learn more about him here.

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