Narcolepsy Frequently Asked Questions

What is narcolepsy?

Narcolepsy is a chronic, potentially disabling neurologic disorder in which the brain is unable to regulate sleep-wake cycles normally.1-3 It is characterized by4:

  • Day: Manifestations of sleep intrude into the waking state, resulting in:
    • Excessive daytime sleepiness
    • Manifestations of REM sleep present abnormally in the waking state: cataplexy
    • Manifestations of REM sleep present abnormally in the transitions between wake and sleep: sleep paralysis and hypnagogic hallucinations
  • Night: Wakefulness can intrude into the sleep state, resulting in4,5:
    • Sleep disruption – frequent awakenings and poor sleep quality
What are the symptoms of narcolepsy?

Knowing and understanding the symptoms of narcolepsy is key. An easy way to learn the 5 major symptoms of narcolepsy is to remember the word C.H.E.S.S.6

  • Cataplexy is a sudden, generally brief (<2 min) loss of muscle tone, with retained consciousness, triggered by strong emotions.1,7
  • Hypnagogic hallucinations are vivid dream-like experiences that occur at wake-sleep transitions.1,6,7
  • Excessive daytime sleepiness is the inability to stay awake and alert during the day, resulting in periods of irrepressible need for sleep or unintended lapses into drowsiness or sleep.1
  • Sleep paralysis is the disturbing temporary inability to move voluntary muscles or speak at sleep-wake transitions.1,6-8
  • Sleep disruption is the interruption of sleep by frequent awakenings.1,7

Not all patients have all 5 narcolepsy symptoms, but every patient with narcolepsy has excessive daytime sleepiness.1,4 To learn more details about each of these symptoms, visit the Narcolepsy Link website at www.NarcolepsyLink.com.

What are the initial presenting symptoms of narcolepsy?

The initial presenting symptom of narcolepsy is typically some manifestation of excessive daytime sleepiness, such as tiredness, fatigue, difficulty concentrating, poor memory, irritability, and mood changes.1,4,9 Some patients may present with sleep disruption, including frequent awakenings and poor sleep quality.1,5,7,10

How long does it usually take for individuals to receive a diagnosis of narcolepsy?

The onset of symptoms typically occurs before the age of 25 but may occur later.1,7,11,12 An accurate diagnosis of narcolepsy can take some time. Several studies, including one in the United Kingdom and one in the United States, have reported that at times it can take more than 10 years from the onset of symptoms to receive an accurate diagnosis.13-17 Patients may see an average of 6 doctors before they receive a narcolepsy diagnosis,18 and it is estimated that 50% or more of individuals with narcolepsy remain undiagnosed.7

Why can it take so long for the right diagnosis?

Many medical and psychiatric disorders are associated with some of the same symptoms as narcolepsy.1,7 Symptoms can be difficult to notice and may vary from person to person.1,19,20 A narcolepsy diagnosis should be established by a sleep specialist with nocturnal polysomnography (PSG) followed by a multiple sleep latency test (MSLT).1

How is narcolepsy diagnosed?

A full clinical interview assessing the presence of narcolepsy symptoms is essential.1,9,19,21 Excessive daytime sleepiness is an essential symptom and cataplexy is the most specific symptom of narcolepsy.1,22 It is unlikely that cataplexy will be evoked in a healthcare professional's office; therefore, diagnosis often depends on a detailed patient history.19 In attempting to make the diagnosis, clinicians should rule out other causes, particularly for excessive daytime sleepiness, and consider potential comorbid conditions.8 Finally, sleep laboratory testing with standardized PSG and MSLT should be performed to establish a narcolepsy diagnosis.1

Narcolepsy Link®

What is Narcolepsy Link?

Narcolepsy Link is an education and resource program designed to connect sleep specialists, referring healthcare professionals, and patients to help increase awareness, recognition, screening, and diagnosis of narcolepsy.

How can Narcolepsy Link accomplish this mission?

Narcolepsy Link provides an array of programs, education materials, and resources to help facilitate early recognition of narcolepsy. Narcolepsy Link hopes to improve outcomes for people with narcolepsy by:

  • Educating healthcare professionals and patients about the signs and symptoms of narcolepsy
  • Encouraging patients to seek help
  • Improving communication between healthcare professionals and patients
Who is on the Narcolepsy Link Steering Committee?

Members of the Narcolepsy Link Steering Committee include experts in sleep and narcolepsy from varying areas of clinical practice, including sleep medicine, neurology, psychiatry, and family medicine. For more information about the Steering Committee, visit the Narcolepsy Link website at www.NarcolepsyLink.com.

Where does Narcolepsy Link get its funding?

Narcolepsy Link is sponsored by Jazz Pharmaceuticals.

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