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About Narcolepsy

Narcolepsy is a medical disorder that impacts 1 in approximately 2,000 people in the United States and many people are unaware of the condition and go undiagnosed. The disease is a sleep disorder, involving irregular patterns in Rapid Eye Movement (REM) sleep and significant disruptions of the normal sleep/wake cycle. While the cause of narcolepsy is not completely understood, current research points to a combination of genetic and environmental factors that influence the immune system.

Infographic courtesy of Julie Flygare www.julieflygare.com

Infographic courtesy of Julie Flygare
www.julieflygare.com

Symptoms

  • Excessive Daytime Sleepiness (EDS), an overwhelming sense of tiredness and fatigue throughout the day
  • Poor quality of sleep because the sleep wake patterns are disrupted
  • Micro-naps (falling asleep for a few seconds) and sleep attacks (an overwhelming urge to sleep)
  • Abnormal REM sleep, detectable only by sleep lab tests
  • REM intrusion into daytime wakefulness
  • Cataplexy, events during which a person has no reflex or voluntary muscle control. For example knees buckle and even give way when experiencing a strong emotion – laughter, joy, surprise, anger – or head drops or jaw goes slack from the same kind of stimuli
  • Hypnogogic hallucinations, events of vivid audio and visual events that a person with narcolepsy experiences while falling asleep, or while awakening
  • Sleep paralysis, a limpness in the body associated with REM sleep resulting in temporary paralysis when the individual is falling asleep, or awakening

Narcolepsy is diagnosed through a sleep study, a set of medical tests including an overnight Polysomnogram (PSG) and a Multiple Sleep Latency Test (MSLT). Even when clear-cut cataplexy is present a sleep study is necessary to rule out sleep apnea and other possible sleep disorders contributing to EDS.

Narcolepsy often takes years to recognize in patients. Many medical conditions result in fatigue, thus physicians might not consider narcolepsy. While new discoveries are being made about narcolepsy and other sleep disorders, life with narcolepsy remains challenging for many people with the condition. Narcolepsy Network hopes that the information, resources, and support provided here on our site and elsewhere through conferences and events will provide people with narcolepsy both hope and a voice.

Epworth Sleepiness Scale

The Epworth Sleepiness Scale is a simple test that allows a person experiencing EDS to evaluate the severity of her or his condition. Answers are rated on a reliable scale called the Epworth Sleepiness Scale, the same assessment tool used by sleep experts worldwide. This test was developed by Dr. Murray Johns at Epworth Hospital in Melbourne, Australia in 1991.

Each item describes a routine daytime situation. Use the scale to rate the likelihood that you would doze off or fall asleep (in contrast to just feeling tired) during that activity. If you haven’t done some of these things recently, consider how you think they would affect you.

This scale should not be used to make your own diagnosis. It is intended as a tool to help you identify your own level of daytime sleepiness, which can be a symptom of a sleep disorder or other medical problem.

Sleep is an important health issue; without proper sleep, the human body cannot function well. Good sleep helps ward off illnesses, helps maintain healthy skin, bones, and muscles and helps to balance hormones and other important brain and body chemicals.

A score of 10 or higher indicates a possible sleep disorder. Take the completed form to your doctor.

Download Form: Epworth Sleepiness Scale Form

For more information about sleep and sleep disorders:

Patient Resources:

National Sleep Foundation
1522 K Street, NW, Suite 500
Washington, DC 20005
www.sleepfoundation.org
(202) 347-3471

American Sleep Apnea Association
6856 Eastern Avenue NW, Suite 203
Washington, DC 20012
www.sleepapnea.org
(202) 293-3650

Narcolepsy Network, Inc.
129 Waterwheel Lane
North Kingstown, RI 02852
www.narcolepsynetwork.org
(401) 667-2523

Willis-Ekbom Disease Foundation
1530 Greenview Dr. SW, Suite 210
Rochester, MN 55902
www.rls.org
(507) 287-6465

Talk About Sleep, Inc.
www.talkaboutsleep.com

Physician Resources:

American Academy of Sleep Medicine
One Westbrook Corporate Center, Suite 920
Westchester, IL 60154
www.aasmnet.org
(708) 492-0930

American Board of Sleep Medicine
One Westbrook Corporate Center, Suite 920
Westchester, IL 60154
www.absm.org
(708) 492-1290

© 2014