Narcolepsy

Common Name(s)

Narcolepsy

Narcolepsy is a long-term (chronic) sleep disorder that usually begins showing symptoms in individuals between the ages of 10-25 years old. People with narcolepsy experience sudden, uncontrollable periods of sleepiness that can strike at any time.

Symptoms of narcolepsy include excessive daytime sleepiness (EDS) and cataplexy, which is a sudden loss of muscle tone leading to an overwhelming feeling of weakness and loss of voluntary muscle control. Other possible symptoms may include sleep paralysis, which is the inability to move or speak while falling asleep or waking; hallucinations, which may occur when a person is falling asleep, waking or during sleep; and general disrupted nighttime sleep patterns. People with narcolepsy may have trouble staying asleep and may report sleep talking, vivid dreaming, or periodic leg movements. Affected individuals are also more likely to become obese, although lifestyle changes can help in the prevention of excessive weight gain.

Narcolepsy is commonly caused by an abnormally low level of a type of neurotransmitter, called hypocretin. Neurotransmitters are chemicals that brain cells produce to communicate with each other and to regulate other processes in the body. Hypocretin is responsible for helping the body to stay awake. Most cases of narcolepsy are “sporadic,” meaning there is not a family history of the disorder. However, about 10 percent of people with narcolepsy have a close relative who is also affected, meaning there may be a genetic cause that is not yet understood.

A doctor can diagnose the condition by using sleep studies and a medical history. Additionally, there are tests to detect low levels of hypocretin. There is currently no cure for narcolepsy, but there are medications available to help manage the condition. Ask your doctor or specialist about the most current treatment options available. Support groups are a good resource for information and support.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Narcolepsy" for support, advocacy or research.

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Ben's Friends

Our mission is to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.

Last Updated: 11 Jul 2016

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Narcolepsy Network, Inc.

Narcolepsy Network, Inc.'s mission is to: educate the public about narcolepsy and other related sleep disorders, support individuals with narcolepsy, their families and friends, promote the efficient diagnosis of narcolepsy, and encourage and promote research for narcolepsy.

Last Updated: 26 Mar 2013

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Wake Up Narcolepsy, Inc.

Wake Up Narcolepsy is a 501(c)(3) not-for-profit organization dedicated to supporting narcolepsy awareness and research to find a cure. WUN carries out its mission by: Providing funding to accelerate a cure for narcolepsy; increasing awareness of narcolepsy; decreasing time-lapse from symptom onset to proper diagnosis; and providing supportive resources for people with narcolepsy and their families.

Last Updated: 29 Apr 2014

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General Support Organizations

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How do you compare to others with this condition?

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Narcolepsy" for support, advocacy or research.

Logo
Ben's Friends

Our mission is to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.

http://www.bensfriends.org

Last Updated: 11 Jul 2016

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Narcolepsy Network, Inc.

Narcolepsy Network, Inc.'s mission is to: educate the public about narcolepsy and other related sleep disorders, support individuals with narcolepsy, their families and friends, promote the efficient diagnosis of narcolepsy, and encourage and promote research for narcolepsy.

http://www.narcolepsynetwork.org

Last Updated: 26 Mar 2013

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Wake Up Narcolepsy, Inc.

Wake Up Narcolepsy is a 501(c)(3) not-for-profit organization dedicated to supporting narcolepsy awareness and research to find a cure. WUN carries out its mission by: Providing funding to accelerate a cure for narcolepsy; increasing awareness of narcolepsy; decreasing time-lapse from symptom onset to proper diagnosis; and providing supportive resources for people with narcolepsy and their families.

http://www.wakeupnarcolepsy.org/

Last Updated: 29 Apr 2014

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Narcolepsy" returned 404 free, full-text research articles on human participants. First 3 results:

Case report: narcolepsy type 1 in an adolescent with HIV infection-coincidence or potential trigger?
 

Author(s): Karin Sofia Scherrer, Christa Relly, Annette Hackenberg, Christoph Berger, Paolo Paioni

Journal: Medicine (Baltimore). 2018 Jul;97(30):e11490.

 

Despite the acknowledged importance of environmental risk factors in the etiology of narcolepsy, there is little research on this topic. HIV as a trigger for narcolepsy has not been systematically investigated.

Last Updated: 31 Dec 1969

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Prostaglandin D2 Receptor DP1 Antibodies Predict Vaccine-induced and Spontaneous Narcolepsy Type 1: Large-scale Study of Antibody Profiling.
 

Author(s): Helle Sadam, Arno Pihlak, Anri Kivil, Susan Pihelgas, Mariliis Jaago, Priit Adler, Jaak Vilo, Olli Vapalahti, Toomas Neuman, Dan Lindholm, Markku Partinen, Antti Vaheri, Kaia Palm

Journal: EBioMedicine. 2018 Mar;29():47-59.

 

Neuropathological findings support an autoimmune etiology as an underlying factor for loss of orexin-producing neurons in spontaneous narcolepsy type 1 (narcolepsy with cataplexy; sNT1) as well as in Pandemrix influenza vaccine-induced narcolepsy type 1 (Pdmx-NT1). The precise molecular ...

Last Updated: 31 Dec 1969

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Effect of sodium oxybate, modafinil, and their combination on disrupted nighttime sleep in narcolepsy.
 

Author(s): Yves Dauvilliers, Thomas Roth, Diane Guinta, Sarah Alvarez-Horine, Efim Dynin, Jed Black

Journal: Sleep Med.. 2017 Dec;40():53-57.

 

To assess the effects of three narcolepsy treatment modalities on sleep stage shifts associated with disrupted nighttime sleep (DNS) using data from a clinical trial.

Last Updated: 31 Dec 1969

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Narcolepsy" returned 56 free, full-text review articles on human participants. First 3 results:

Rewiring brain circuits to block cataplexy in murine models of narcolepsy.
 

Author(s): Meng Liu, Carlos Blanco-Centurion, Priyattam J Shiromani

Journal: Curr. Opin. Neurobiol.. 2017 06;44():110-115.

 

Narcolepsy was first identified almost 130 years ago, but it was only 15 years ago that it was identified as a neurodegenerative disease linked to a loss of orexin neurons in the brain. It is unclear what causes the orexin neurons to die, but our strategy has been to place the gene ...

Last Updated: 31 Dec 1969

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Assessing sleepiness and cataplexy in children and adolescents with narcolepsy: a review of current patient-reported measures.
 

Author(s): Khadra Benmedjahed, Y Grace Wang, Jérémy Lambert, Christopher Evans, Steve Hwang, Jed Black, Murray W Johns

Journal: Sleep Med.. 2017 Apr;32():143-149.

 

The objective of this study was to review patient-reported outcome measures assessing excessive daytime sleepiness (EDS) or cataplexy in children or adolescents to determine their usefulness and limitations in pediatric narcolepsy assessment.

Last Updated: 31 Dec 1969

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Patient-Reported Measures of Narcolepsy: The Need for Better Assessment.
 

Author(s): Ulf Kallweit, Markus Schmidt, Claudio L Bassetti

Journal:

 

Narcolepsy, a chronic disorder of the central nervous system, is clinically characterized by a symptom pentad that includes excessive daytime sleepiness, cataplexy, sleep paralysis, hypnopompic/hypnagogic hallucinations, and disrupted nighttime sleep. Ideally, screening and diagnosis ...

Last Updated: 31 Dec 1969

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Clinical Trial Information This information is provided by ClinicalTrials.gov

A Study to Evaluate the Safety and Efficacy of TS-091 in Patients With Narcolepsy
 

Status: Recruiting

Condition Summary: Narcolepsy

 

Last Updated: 16 Feb 2018

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Last Updated: 11 May 2016

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Xyrem and Brain Dopamine in Narcolepsy
 

Status: Recruiting

Condition Summary: Narcolepsy With Cataplexy

 

Last Updated: 17 Nov 2017

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