Condition Center: Narcolepsy

Photo Illustration by Ava Cruz
Photo Illustration by Ava Cruz

This informational guide, part of POPSUGAR's Condition Center, lays out the realities of this health concern: what it is, what it can look like, and strategies that medical experts say are proven to help. You should always consult your doctor regarding matters pertaining to your health and before starting any course of medical treatment.

Narcolepsy is sometimes treated like a punchline in media, but it's a serious disorder that can significantly impact a person's quality of life. "Narcolepsy is a chronic neurological sleep condition that's characterized by drowsiness throughout the day and sudden attacks of sleep," says Janice Johnston, MD, chief medical officer and cofounder of Redirect Health. "The condition affects the brain's ability to have control over one's sleep-wake cycle." More on the condition, its causes, and how it can be managed is below.

Understanding Narcolepsy

Narcolepsy is a rare condition, Dr. Johnston says, with Cleveland Clinic estimating that only one in every 2,000 Americans has the condition. But it's often misdiagnosed and incorrectly attributed to other conditions like depression, insomnia, and obstructive sleep apnea, according to Narcolepsy Link.

Narcolepsy is characterized by "excessive daytime sleepiness and general extreme fatigue," Dr. Johnston says. "Telltale signs of narcolepsy are cataplexy, which is the sudden loss of muscle tone when someone is awake, as well as excessive sleepiness, hallucinations, sleep paralysis, and insomnia." People with this condition may experience uncontrollable sleep "attacks" during the day, during which the person falls asleep regardless of the time of day or activity. Oftentimes, people use the acronym CHESS to refer to these common symptoms: cataplexy, hallucinations, excessive daytime sleepiness, sleep paralysis, and sleep disruption. These symptoms can greatly affect daily life, as a person may not be able to safely drive, work, or perform basic tasks.

There are two types of narcolepsy, according to the National Institute of Neurological Disorders and Stroke (NINDS). Type 1 narcolepsy is marked by low levels of hypocretin (a brain hormone that regulates the sleep-wake cycle and REM sleep), cataplexy, and excessive daytime sleepiness. Meanwhile, type 2 narcolepsy is diagnosed when an individual has excessive daytime sleepiness without cataplexy and has normal levels of hypocretin, Dr. Johnston says. Additionally, another condition known as secondary narcolepsy can manifest after a brain injury and cause the classic symptoms of narcolepsy, as well as neurological problems and excessive nighttime sleeping.

Causes and Risk Factors of Narcolepsy

Experts believe several factors may be responsible for narcolepsy. Most people who struggle from narcolepsy with cataplexy (or type 1 narcolepsy) will experience low levels of hypocretin, which results in a loss of sleep-wake control, according to NINDS. The exact cause of narcolepsy without cataplexy, or type 2 narcolepsy, is less understood, but experts think it's due to a less severe loss of neurons that use hypocretin or a problem with how hypocretin travels in your brain, per Cleveland Clinic.

Other suspected causes of narcolepsy range from genetic factors to autoimmune disorders, per Cleveland Clinic.

  • Autoimmune disorders: These types of conditions can impact and affect the brain cells that produce hypocretin, NINDS reports.
  • Family history: There are some cases where narcolepsy has been passed on through generations — but this is very rare, according to NINDS.
  • Environmental toxins: Research shows that exposure to some environmental toxins can destroy hypocretin-producing cells and low levels of hypocretin are associated with narcolepsy. Pesticides, heavy metal, and secondhand smoke are all listed as potential environmental toxins that can contribute to narcolepsy, per Cleveland Clinic.
  • Infections: Research has shown the connection between narcolepsy and infections like streptococcal infection and H1N1 influenza, which has to do with the impact an autoimmune attack can have on hypocretin neurons, according to Harvard Medical School's division of sleep medicine.
  • Brain injury or tumors: In the case of secondary narcolepsy, symptoms result from traumatic injury or tumors to parts of the brain that regulate wakefulness and REM sleep, NINDS reports. But this is rare.

Most Effective Narcolepsy Treatments

Quality, restorative sleep is not a luxury. It's incredibly important for your overall health and mental well-being. The CDC notes that not getting enough sleep "is linked with many chronic diseases and conditions — such as type 2 diabetes, heart disease, and depression."

"It can be easy to dismiss sleep problems as normal, but it is important to seek help when difficulty sleeping arises," Dr. Johnston says. "If you have trouble getting quality sleep or feel tired when you are getting enough sleep, then it is important to contact your [healthcare] provider and share your concerns."

According to Dr. Johnston, narcolepsy is diagnosed through a combination of clinical examination, detailed medical history, a physical exam, and specialized tests, including a polysomnogram (sleep study) or multiple sleep latency test (MSLT).

Once you've been diagnosed, treatments focus on managing symptoms and improving quality of life. You may be prescribed a medication, which may include stimulants or antidepressants. Modafinil, which promotes wakefulness during the day, is a common treatment method, Dr. Johnston says.

In addition, behavioral changes can help people with this condition. "Lifestyle changes can help to provide a structured schedule for individuals with narcolepsy," Dr. Johnston says. "Suggestions might include taking short naps throughout the day, avoiding caffeine at night, and avoiding excessive alcohol consumption and tobacco use."