The Sleep Disorder That Often Goes Undiagnosed – Narcolepsy

Insomnia is fairly easily diagnosed – you just can’t get to sleep. But what happens when, no matter how much you seem to sleep at night, you still feel tired enough to fall asleep, often in inappropriate situations like sitting in a class at school, or riding the subway, or even while talking with friends?

Many who have complained of this condition to their doctors have been tested for hormonal or diet-related problems, but rarely for its cause – narcolepsy. It’s a complicated disorder, with many odd symptoms, such as the person feeling their knees buckling while in activity, or awakening from seemingly minor noises in the environment in a panic, feeling as terrified as if they had been attacked. Or, on either waking up or falling asleep, feeling as if they were paralyzed, and unable to move.

Although the final diagnosis for narcolepsy depends on the results of an in-clinic sleep study involving a test called polysomnogram, the need for such a test is fairly easily detected. Doctors can ask the patient to answer a series of questions and ask them whether they have experienced common symptoms of narcolepsy, and from these determine that a full sleep study may be needed. So why isn’t that happening?

Most cases of narcolepsy go undiagnosed and untreated

Dr. Maha Ahmad of the Sleep Disorders Institute in New York says that although narcolepsy affects an estimated one person in 2,000, the condition often goes undiagnosed – and thus untreated – for years, in many cases for a patient’s whole lifetime. He says that “it usually takes about 10 years from the start of the disorder” for it to be diagnosed. The disorder is also often mis-diagnosed as the result of laziness, depression, some kind of attention deficit disorder, or schizophrenia.

The symptoms of narcolepsy usually manifest themselves in adolescence or early adulthood, and often follow a viral infection or other environmental event that places strain on the immune system. Narcolepsy is an autoimmune disorder in which brain cells that produce a neurotransmitter called hypocretin are attacked and destroyed by a person’s own immune system.

The brain, deprived of hypocretin, can no longer properly regulate the body’s sleep cycles.

Doctors can detect narcolepsy in sleep studies by watching the patient’s REM, or random eye movements. Most people begin their night’s sleep with 80 to 100 minutes of deeper, more restful non-REM sleep, with REM activity starting much later, often towards morning. People with narcolepsy start REM activity within a few minutes of falling asleep. Thus they become deprived of the deeper levels of rest they would experience in non-REM sleep. During their involuntary naps or “mini-sleeps” during the day, their bodies trying to catch up on missed rest, they may even continue performing the activities they were doing before they fell asleep, and not be able to remember doing them. This isn’t as potentially useful ability as it might first appear; one narcolepsy patient said that she’d fall asleep while writing, and continue writing during her “mini-sleep,” but when she woke up and read it the writing would be gibberish.

Narcolepsy is incurable but treatable

Because the brain cells that once produced hypocretin have now been destroyed, and cannot be replaced, the disorder is not reversible or curable, and becomes a lifelong disorder. But it is treatable with medications and sleep behavior modifications that allow people with the disorder to minimize the symptoms and live a more normal life. Some of the medications improve sleep quality at night, while others help to keep patients awake during the day and reduce daytime symptoms. Patients with narcolepsy are also often urged to take one or more intentional 10- to 20-minute naps during the day.

Narcolepsy is treatable, but only if it is diagnosed. The problem, according to sleep experts, is that too few doctors seem to diagnose it. Hopefully – especially for narcolepsy sufferers – more will learn to recognize its signs in the future, and know when to refer their patients to a sleep clinic rather than a dietician or a psychologist.

1 Comment

  1. This article was informative about narcolepsy but I would have liked to have had more information or a link for available treatment options.

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Juliette Siegfried, MPH

Juliette Siegfried, MPH, has been involved in health communications since 1991. Shortly after obtaining her Master of Public Health degree, she began her career at the National Institutes of Health in Bethesda, Maryland. Juliette now lives in Europe, where she launched ServingMed(.)com, a small medical writing and editing business for health professionals all over the world.

Juliette's resume, facebook: juliette.siegfriedmph, linkedin: juliettes, (+31) 683 673 767

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