Patients may have symptoms for a long time, and see many doctors, before they receive a diagnosis of narcolepsy.1-3

Narcolepsy is a chronic, life-disrupting neurologic (involving nerve cells and chemicals in the brain) disorder in which the brain is not able to regulate sleep-wake cycles normally.4 It is estimated that about 1 in 2000 people in the United States have narcolepsy.5

The symptoms of narcolepsy often start between the ages of 15 and 25.6 Yet, the right diagnosis can take more than 10 years.1,2 Patients may see an average of 6 doctors before they are told they have narcolepsy.3 Many disorders may have some of the same symptoms as narcolepsy.5,6 This may be why it is estimated that 50% or more patients with narcolepsy have not been diagnosed.5

Narcolepsy may cause problems at home, work, and school.7

The symptoms of narcolepsy may make it hard to do everyday tasks, and may impact patients at work and school.6,7 All people with narcolepsy have excessive daytime sleepiness, which means they are unable to stay awake and alert during the day, resulting in unintended lapses into drowsiness or sleep.6 In addition, people with narcolepsy often avoid doing things that might result in injury or embarrass them if they were to fall asleep or have sudden muscle weakness or loss of muscle control, called cataplexy.7 People with narcolepsy may also have sleep disruption. This means that they may have trouble sleeping through the night, with frequent awakenings.5,6 During the time they are falling asleep or waking up, people with narcolepsy may experience sleep paralysis, or the inability to move or speak.6 Vivid dream-like events or unpleasant hallucinations may also occur while falling asleep or waking up.6

Knowing and understanding the symptoms of narcolepsy is key. Just remember: C.H.E.S.S.8

Not all patients have all 5 of these symptoms.6

These symptoms can be hard to spot and may vary from person to person.6,9,10

An easy way to learn the 5 symptoms of narcolepsy is to remember the word C.H.E.S.S.8
Click on each symptom to learn more
:

C Cataplexy is a sudden, brief loss of muscle strength or control caused by strong emotions.5,6

Cataplexy is almost always a sign of narcolepsy.6 Cataplectic attacks may cause mild muscle weakness that can make the head drop, the face droop, the jaw weak, or the knees give way. These attacks can also affect the whole body and cause a person to fall down.5,6 But attacks that affect only a few muscle groups are more common.5 These attacks are triggered by sudden, strong emotions such as happiness, laughter, surprise, or anger.5,6

H Hypnagogic Hallucinations are vivid dream-like events that occur while falling asleep or waking up.5,6

Patients with narcolepsy may have hypnagogic hallucinations.6 These are often described as vivid dreams. Some of these dreams are pleasant, but usually they are scary, and patients may describe them as nightmares.5,6 Dreams and nightmares occur during sleep, but these hallucinations occur when people are falling asleep or waking up.6

E Excessive Daytime Sleepiness is the inability to stay awake and alert during the day, resulting in unintended lapses into drowsiness or sleep.6

Every person with narcolepsy suffers from excessive daytime sleepiness.6,11 However, people may not use these exact words to describe what they are feeling.10-12 Excessive daytime sleepiness is defined as the inability to stay awake and alert during the day, resulting in unintended lapses into drowsiness or sleep.6 People with this problem may say they are tired, fatigued, not able to concentrate, or easily upset. They may also be forgetful and have mood changes.10-12

S Sleep Paralysis is a brief inability to move or speak while falling asleep or waking up.6

People who have sleep paralysis are not able to move or speak for a short time when they are falling asleep or waking up. They may also feel like they can’t breathe. This can be frightening.6

S Sleep Disruption is when sleep is broken up by many awakenings.5,6

People with narcolepsy often fall asleep quickly, but many have disrupted sleep. This means that they wake up many times during the night. Because of this, they may not get the kind of sleep that they need.5,6 People with narcolepsy may report poor-quality sleep.13 Sleep disruption can make other symptoms of narcolepsy worse.6


Narcolepsy Link, connecting and educating healthcare professionals and patients to help improve awareness and recognition of narcolepsy

Patients

Link for Patients, Family Members, and Friends

Find tips and tools to better recognize symptoms of narcolepsy and to talk to your doctor. 

Link for Healthcare Professionals

Find resources to help patients recognize, document, and communicate their symptoms, to help you recognize narcolepsy symptoms and confirm the diagnosis.

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