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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 providers, 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 provider, who is the best source of information about your health.

This page is hosted by Harmony Biosciences, LLC (“Harmony”) and posts are published and monitored by our community management team. We aim to respond to messages within 24 hours but appreciate your patience as some responses may take more time. To learn more about Harmony, please visit harmonybiosciences.com.

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.

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 strength or tone, often triggered by strong emotions. Narcolepsy with cataplexy is known as type 1 narcolepsy.

Complete collapse to the ground; 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 inappropriate transitions between states of sleep and wakefulness.

The inability to stay awake and alert during the day.

A neurotransmitter that supports wakefulness. The TMN is the only source of histamine in the brain.

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

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

A neuropeptide that supports wakefulness and helps control 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.

Brief, unintentional lapses into sleep or loss of awareness.

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

A state of sleep when muscle tone is decreased. Deep stages help to restore the body.

Overnight study used to diagnose sleep disorders by monitoring sleep stages and cycles to detect disruptions of a normal sleep pattern.

Normally occurs at night and includes vivid dreams. Also known as “paradoxical sleep.”

Daytime and evening habits and routines to help improve nighttime sleep.

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

Sleep-onset REM period.

People with type 1 narcolepsy have low levels of hypocretin.

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