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Know Narcolepsy® Community Guidelines

Welcome to Know Narcolepsy®, a community for people impacted by narcolepsy, looking to find support, education, real-life stories and tips for living with narcolepsy. Each person living with narcolepsy has his or her own story, and every story is different. We hope by visiting Know Narcolepsy, you find important information and resources to help you understand symptoms and their impact, communicate with healthcare professionals, and better manage day to day life with narcolepsy.

The Know Narcolepsy page is intended for U.S. audiences ages 18 and over. While we hope to foster dialogue and a sense of community, please do not interpret any conversations that take place here as medical advice. For medical advice, please talk to your healthcare professional, who is the best source of information about your health.

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We are happy that you came to check us out and hope you enjoy connecting with, and learning from, the narcolepsy community. We encourage thoughtful participation, genuine questions, and informed sharing by means of respectful and appropriate posts and comments. While you are here visiting, we ask you to please read through our community guidelines and reminders below, and respectfully follow them while you are visiting the page. Any posts that fall outside of these guidelines will be removed. Thank you in advance for reading and abiding by our guidelines.


  1. If your comment or inquiry is related to a medical emergency, please dial 9-1-1 immediately to receive proper assistance.
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Performance of routine tasks without awareness.

Sudden and brief loss of muscle tone, often triggered by strong emotions or certain situations. Narcolepsy with cataplexy is known as narcolepsy type 1.

Complete collapse to the ground; nearly all skeletal muscles are involved.

Only certain muscle groups are involved.

Biological clock mechanism that regulates the 24-hour cycle in the physiological processes of living beings. It is controlled in part by the SCN in the hypothalamus and is affected by the daily light-dark cycle.

Frequent awakenings and inappropriate transitions between states of sleep and wakefulness during nighttime sleep.

The inability to stay awake and alert during the day.

A neurotransmitter in the brain that supports wakefulness.

Vivid, realistic, and sometimes frightening dream-like events that occur when falling asleep.

Also known as orexin. A neuropeptide that supports wakefulness and helps suppress non-REM sleep and REM sleep.

Primary brain region for regulating the timing of sleep-wake states.

Unintentionally falling asleep due to excessive daytime sleepiness. Also known as “sleep attacks.”

Brief, unintentional lapses into sleep or loss of awareness.

A validated objective measure of the tendency to fall asleep in quiet situations.

People living with narcolepsy type 1 have low levels of hypocretin.

Narcolepsy without cataplexy; the cause of narcolepsy type 2 is unknown.

A state of sleep characterized by slower-frequency, more synchronized neuronal activity and decreased muscle tone. Deep stages help to restore the body.

A multiparameter test that monitors physiologic signals during sleep; used as a diagnostic tool in sleep medicine.

A state of sleep characterized by fast-frequency, desynchronized activity on EEG, vivid dreams, and loss of muscle tone. Normally occurs 60-90 minutes after sleep onset. Also known as “paradoxical sleep.”

Brief loss of control of voluntary muscles with retained awareness at sleep-wake transitions.

An abnormal sleep phenomenon characterized by REM sleep occurrence within 15 minutes of sleep onset; may occur during nighttime sleep or daytime napping.

A group of neurons located in the hypothalamus that are essential for promoting non-REM sleep. These neurons project to all wake-promoting regions to inhibit wakefulness and promote non-REM sleep during the night.