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Russell Rosenberg, Ph.D

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Narcolepsy Remains Misunderstood and Underdiagnosed

Posted: 07/19/2012 12:46 pm

Josh, a 16-year-old male, is sent to detention because he is falling asleep in class. He is referred to the school counselor because of his poor academic performance and he is placed in a class for the learning disabled. Concerned, Josh's parents take him to their family physician who suggests that depression may be the issue, and he is prescribed an antidepressant. What the school, physician, and Josh's parents do not realize is that his symptoms are due to narcolepsy.

The American Sleep Association notes: "It is thought that as many as 125,000 to 200,000 Americans have narcolepsy, although fewer than 50,000 have been properly diagnosed." Imagine the impact uncontrollable sleep attacks would have on your life. Most of us take our ability to stay awake in school, at work, and while driving for granted. The relationship between sleep quantity, quality, and the ability to stay awake and alert is apparent in everyone except for those that suffer from narcolepsy. A restful eight hours of sleep does not mean the narcoleptic will get through the day feeling alert and refreshed. The disease can profoundly affect health and quality of life.

The causes of narcolepsy are largely unknown, but it appears to be a disorder that involves the brain's inability to produce a neuropeptide called orexin, which excites areas of the brain that keep us awake.

Symptoms of narcolepsy may include:

  • An irresistible urge to sleep. The primary characteristic of narcolepsy is an overwhelming need to sleep during the day or "sleep attacks." People with narcolepsy often fall asleep at inopportune times like while talking on the phone, at school or work, while driving, or even during sex.
  • Poor nighttime sleep. Narcoleptics often have poor-quality nighttime sleep.
  • Sleep paralysis. Narcolepsy patients may experience the inability to move or talk for a short period as they transition in or out of sleep.
  • Hypnogogic and hypnopompic hallucinations. As narcoleptics transition into or out of sleep, they may see, feel, or hear something that is not really there. Dream-like activity may break through into wakefulness, causing dreams to seem frighteningly real.
  • Cataplexy. Cataplexy is a brief loss of muscle tone or control in response to a strong emotion such as severe stress, anger, or excitement. Cataplexy affects around 70 percent of narcoleptics.

Narcolepsy usually begins in the teens or early 20s, and all of the symptoms do not emerge simultaneously. AWAKEN, an online survey conducted by Harris Interactive and sponsored by Jazz Pharmaceuticals, surveyed 1,000 adults from the general public, 300 primary care physicians, and 100 sleep specialists. The results found that symptoms associated with narcolepsy are not clearly recognized or understood, which may contribute to under or misdiagnosis of the disorder. Only 70 percent of the general public has heard of narcolepsy, which was the lowest percentage among diseases including diabetes, sleep apnea, multiple sclerosis, Parkinson's disease, restless legs, and cystic fibrosis.

Tragically, the survey found that physician comfort in diagnosing narcolepsy is low. Even sleep specialists do not fully recognize the symptoms of narcolepsy, with only one-fifth identifying all symptoms of the disease. Additionally, 22 percent of sleep specialists reported they are "not very or not at all comfortable" diagnosing narcolepsy. The survey results reinforce the need for continuing narcolepsy education for physicians and resources to help bridge knowledge gaps and enhance patient care.

According to a 2010 article in the Journal of Clinical Psychiatry by Charles K. Dunham M.D., failure rates for properly diagnosing narcolepsy are extremely high among a variety of physicians. Dunham found that neurologists misdiagnose narcoleptics 45 percent of the time, general practitioners 78.1 percent, and pediatricians almost 100 percent. Common misdiagnoses included neurotic disorders, depression, personality disorders, and adjustment reactions.

Pediatric narcolepsy can be the hardest to diagnose, as children with narcolepsy often perform poorly in school and are mislabeled as lazy, oppositional, or depressed. Early identification is critical, but unfortunately the time from disease onset and diagnosis can be years. Parents, teachers, and even physicians remain uninformed about this lifelong disease.

When narcolepsy is properly diagnosed, treatment is tailored to suit the individual needs and symptoms of the patient. There is no cure for narcolepsy, but treatment options include:

  • Lifestyle changes. Lifestyle adjustments can be made to lessen the severity of a few of the symptoms of narcolepsy. Patients are asked to engage in good sleep hygiene practices and avoid stress or anger, which can trigger cataplexy.
  • Scheduling short naps. Short naps of 10-15 minutes are usually refreshing and may help reduce the pressure to sleep.
  • Stimulants. The main treatment for the excessive sleepiness associated with narcolepsy is stimulants. The medications promote wakefulness and alertness during the day.
  • Sodium oxybate. For patients with sleepiness and/or cataplexy, sodium oxybate is a treatment option. The drug is taken before sleep and again in the middle of the night.
  • Antidepressants. Some selected antidepressants may be used to help suppress REM sleep to alleviate symptoms of cataplexy, sleep paralysis, and sleep-wake transition hallucinations.

It is not normal to constantly feel sleepy or have involuntary sleep attacks after a good night's rest. While some physicians have difficulty diagnosing narcolepsy, there are many specialists and sleep centers around the country that are capable of providing proper testing and treatment. For more information on narcolepsy, visit the National Sleep Foundation at www.sleepfoundation.org.

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