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.

Caring Voice Coalition,Inc,

Caring Voice Coalition empowers patients who live with a life threatening chronic disease through comprehensive outreach programs and services aimed at financial, emotional and educational support. With a steadfast dedication to the organization’s set of core values, our knowledgeable, caring staff maintains our solid reputation as a dependable, responsive organization with a unique, holistic approach to improving the lives of our patients.

Last Updated: 29 Apr 2014

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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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Advocacy and Support Organizations

 

Condition Specific Organizations

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

Caring Voice Coalition,Inc,

Caring Voice Coalition empowers patients who live with a life threatening chronic disease through comprehensive outreach programs and services aimed at financial, emotional and educational support. With a steadfast dedication to the organization’s set of core values, our knowledgeable, caring staff maintains our solid reputation as a dependable, responsive organization with a unique, holistic approach to improving the lives of our patients.

http://www.caringvoice.org

Last Updated: 29 Apr 2014

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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 260 free, full-text research articles on human participants. First 3 results:

HLA-DPB1 and HLA class I confer risk of and protection from narcolepsy.
 

Author(s): Hanna M Ollila, Jean-Marie Ravel, Fang Han, Juliette Faraco, Ling Lin, Xiuwen Zheng, Giuseppe Plazzi, Yves Dauvilliers, Fabio Pizza, Seung-Chul Hong, Poul Jennum, Stine Knudsen, Birgitte R Kornum, Xiao Song Dong, Han Yan, Heeseung Hong, Cristin Coquillard, Joshua Mahlios, Otto Jolanki, Mali Einen, Isabelle Arnulf, Sophie Lavault, Birgit Högl, Birgit Frauscher, Catherine Crowe, Markku Partinen, Yu Shu Huang, Patrice Bourgin, Outi Vaarala, Alex Désautels, Jacques Montplaisir, Steven J Mack, Michael Mindrinos, Marcelo Fernandez-Vina, Emmanuel Mignot

Journal: Am. J. Hum. Genet.. 2015 Jan;96(1):136-46.

 

Type 1 narcolepsy, a disorder caused by a lack of hypocretin (orexin), is so strongly associated with human leukocyte antigen (HLA) class II HLA-DQA1(∗)01:02-DQB1(∗)06:02 (DQ0602) that very few non-DQ0602 cases have been reported. A known triggering factor for narcolepsy is pandemic ...

Last Updated: 10 Jan 2015

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Narcolepsy--genes, infections and vaccines: the clues for a new autoimmune disease.
 

Author(s): Maria-Teresa Arango, Shaye Kivity, Joab Chapman, Yehuda Shoenfeld

Journal: Isr. Med. Assoc. J.. 2014 Oct;16(10):636-7.

 

Last Updated: 2 Dec 2014

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Levothyroxine improves subjective sleepiness in a euthyroid patient with narcolepsy without cataplexy.
 

Author(s): Danielle L Sobol, Andrew R Spector

Journal:

 

We discuss the use of levothyroxine for excessive daytime sleepiness (EDS) and prolonged nocturnal sleep time in a euthyroid patient with narcolepsy.

Last Updated: 21 Nov 2014

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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 35 free, full-text review articles on human participants. First 3 results:

History of narcolepsy at Stanford University.
 

Author(s): Emmanuel J M Mignot

Journal: Immunol. Res.. 2014 May;58(2-3):315-39.

 

Although narcolepsy was first described in the late nineteenth century in Germany and France, much of the research on this disorder has been conducted at Stanford University, starting with Drs. William C. Dement and Christian Guilleminault in the 1970s. The prevalence of narcolepsy ...

Last Updated: 21 May 2014

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Narcolepsy, 2009 A(H1N1) pandemic influenza, and pandemic influenza vaccinations: what is known and unknown about the neurological disorder, the role for autoimmunity, and vaccine adjuvants.
 

Author(s): S Sohail Ahmed, Peter H Schur, Noni E MacDonald, Lawrence Steinman

Journal: J. Autoimmun.. 2014 May;50():1-11.

 

The vaccine safety surveillance system effectively detected a very rare adverse event, narcolepsy, in subjects receiving AS03-adjuvanted A(H1N1) pandemic vaccine made using the European inactivation/purification protocol. The reports of increased cases of narcolepsy in non-vaccinated ...

Last Updated: 21 Apr 2014

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Usefulness of genetic characterization of narcolepsy and hypersomnia on phenotype definition: a study in Portuguese patients.
 

Author(s): António Martins-da-Silva, João Lopes, João Ramalheira, Cláudia Carvalho, Daniela Cunha, Paulo P Costa, M Berta Silva

Journal: Rev Neurol. 2014 Jan;58(2):49-54.

 

The determination of human leukocyte antigen (HLA) class II genotype is widely used to confirm the diagnosis of narcolepsy with or without cataplexy. The HLA genotyping is reliable, easy to perform and reassures the clinician. It is also less invasive than other methodologies and ...

Last Updated: 8 Jan 2014

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Last Updated: 15 Jun 2015

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A Study of Safety and Efficacy of BTD-001 in Treatment of Patients With Idiopathic Hypersomnia (IH) or Narcolepsy Type 2
 

Status: Not yet recruiting

Condition Summary: Idiopathic Hypersomnia; Narcolepsy Without Cataplexy

 

Last Updated: 29 Jul 2015

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