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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 or memory.

Difficulty focusing or concentrating.

Brief loss of muscle tone with retained awareness, often triggered by strong emotions.

Frequent shifts between different states of sleep and wakefulness at night.

The inability to stay awake and alert during the day; a constant need for sleep or unintentionally falling asleep.

A chemical in the brain that helps maintain wakefulness.

Vivid dream-like experiences that occur while falling asleep.

Dream-like events that occur when falling asleep. Called hypnopompic hallucinations if they occur when waking up.

A chemical in the brain that helps maintain wakefulness and prevent non-REM sleep and REM sleep from occurring at the wrong time.

Unintentionally falling asleep due to excessive daytime sleepiness; “sleep attacks.”

Restorative sleep state with decreased muscle tone.

Occurs at night and includes dreams; muscles are not active to prevent people from acting out dreams.

Daytime and evening habits to improve sleep.

Brief total loss of voluntary muscle control when falling asleep or while waking up.

People with type 1 narcolepsy can be diagnosed by their cataplexy or low levels of hypocretin.

The cause of type 2 narcolepsy is unknown.