Picture this: You’re sitting on your couch reading this article. Suddenly, you’re asleep. It’s not that you were just really bored by that intro, but it could be narcolepsy. Narcolepsy is a rare neurological disability that affects the brain’s ability to control the sleep-wake cycle. It’s chronic and has no cure. “Narcoleptics have a propensity for falling asleep without warning,” says Harley Greenberg, MD, medical director of Northwell Health Sleep Disorders Center. There are two main types: narcolepsy Type 1 with cataplexy, which is sudden muscle weakness; narcolepsy Type 2 does not include cataplexy.

How Common Is Narcolepsy?

About 1 in 200,000-300,000 people suffer from narcolepsy, but only about 25 percent have been diagnosed and are being treated. Males and females are affected equally. Narcolepsy can occur at any age, but in many cases, symptoms appear between the ages of 7 to 25. About 10 percent of cases occur in children younger than 10. Since people with narcolepsy are often misdiagnosed with other conditions, such as psychiatric disorders or emotional problems, it can take years for someone to get the proper diagnosis.  At the same time, mental health disabilities can occur as co-morbidities of narcolepsy.

What Does Narcolepsy Feel Like?

  • People with narcolepsy experience excessive daytime sleepiness (EDS), which can occur at intervals over a single day. Some people with narcolepsy will experience other symptoms as well.
  • Muscle weakness and loss of control (called cataplexy) that ranges from 1 to 10 seconds is not uncommon. It can occur rarely or several times a day and people remain conscious when it happens.
  • You may have sleep paralysis, which is a temporary inability to move or speak. It’s similar to cataplexy, but sleep paralysis occurs at the edges of sleep, either when falling asleep or waking up. It lasts just seconds and does not seem to cause long-term dysfunction.
  • Hallucinations, usually involving vivid and frightening images, may occur while falling asleep or waking up.
  • Some also have insomnia or fragmented sleep due to a dysfunctional sleep-wake cycle.

How Is Narcolepsy Diagnosed?

A detailed medical history and a clinical exam are necessary for a diagnosis, and a sleep journal kept by the patient to describe experiences over a period of time is often recommended. Two specialized tests are performed in a clinical setting: A sleep study, or polysomnogram, which records brain waves, heart rate and breathing, among other things, and a multiple sleep latency test (MSLT), which measures how long it takes you to fall asleep and enter the REM stage.

What Causes Narcolepsy?

The cause of narcolepsy is still a mystery, but it’s believed that low levels of the chemical hypocretin, a hormone that promotes wakefulness and is produced in the region of the brain known as the hypothalamus, may lead to narcolepsy with cataplexy. Part of a narcolepsy diagnosis may include measuring the level of hypocretin in the fluid that surrounds the brain and spinal cord, accomplished by withdrawing cerebrospinal fluid via spinal tap. Narcoleptics who do not have cataplexy (that is, those with narcolepsy Type 2) appear to have normal levels of hypocretin. But the cause of narcolepsy Type 2 is still under investigation.

According to Dr. Greenberg, “Genetic factors as well as some environmental factors, and possibly certain infectious processes, can result in an auto-immune disorder. Narcolepsy is probably an anti-immune disorder.” Rarely does a brain injury or tumor result in narcolepsy.

Can Narcolepsy Be Treated?

While there is no cure for narcolepsy now, an assortment of medications can help treat it, including Modafinil, a central nervous stimulant thought to be less addictive than older stimulants; amphetamine-like stimulants; and, for narcoleptics with cataplexy, anti-depressants such as SSRIs (selective serotonin reuptake inhibitors) and tricyclics. In addition, a strong sedative called sodium oxybate has been used with individuals with narcolepsy, though it is tightly controlled. In addition, lifestyle changes such taking short naps, keeping a regular sleep schedule, and getting daily exercise have been known to help, as has cognitive behavioral therapy. Says Dr. Greenberg, “Therapy can help you regain functionality.”

Are Other Conditions Linked To Narcolepsy?

In short, yes. It’s possible that the brain chemistry involved in narcolepsy affects the mental health of those who suffer with it. But there is no shortage of reasons for mental health issues otherwise. Part of the huge impact of narcolepsy is on quality of life. “Patients are typically stricken by narcolepsy in the prime of their lives,” says Dr. Greenberg. As a result, “you can develop depression as a secondary illness,” he says. “When it’s misdiagnosed, it can then take sometimes five to 10 years between symptoms and diagnosis,” a lag time that can exacerbate distress. In addition to mental health issues associated with social stigma like depression, there is an intimate relationship between narcolepsy and other psychiatric disorders, including anxiety, eating disorders, ADHD and schizophrenia.

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Last Updated: Apr 13, 2020