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

The relationship between orexin levels and blood pressure changes in patients with narcolepsy.
 

Author(s): Mariusz Sieminski, Kamil Chwojnicki, Tomi Sarkanen, Markku Partinen

Journal:

 

Narcolepsy type 1 (NT1) is caused by a deficiency or absence of the neurotransmitter orexin. NT1 is also associated with a reduced nocturnal "dipping" of blood pressure (BP). The study objective was to analyze whether nocturnal BP values differed in patients depleted of orexin, versus ...

Last Updated: 12 Oct 2017

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The development of a health-related quality-of-life instrument for young people with narcolepsy: NARQoL-21.
 

Author(s): John E Chaplin, Attila Szakács, Tove Hallböök, Niklas Darin

Journal:

 

Narcolepsy is a lifelong sleep disorder with a prevalence of between 0.03% and 0.06% and onset at around puberty. It is associated with psychiatric comorbidities and cognitive difficulties. No valid and reliable condition-specific health-related quality-of-life (HrQoL) instrument ...

Last Updated: 5 Jul 2017

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Is there a relationship between narcolepsy, multiple sclerosis and HLA-DQB1*06:02?
 

Author(s): Paulo José Lorenzoni, Lineu Cesar Werneck, Ana Christina de Souza Crippa, Alessandra Zanatta, Cláudia S Kamoi Kay, Carlos Eduardo S Silvado, Rosana Herminia Scola

Journal: Arq Neuropsiquiatr. 2017 Jun;75(6):345-348.

 

We studied multiple sclerosis (MS) patients with the HLA-DQB1*06:02 allele and compared them with MS patients who did not carry the HLA-DQB1*06:02 allele. We analyzed clinical and neurophysiological criteria for narcolepsy in six MS patients with HLA-DQB1*06:02, compared with 12 MS ...

Last Updated: 28 Jun 2017

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

Environmental factors in the etiology of type 1 diabetes, celiac disease, and narcolepsy.
 

Author(s): Åke Lernmark

Journal: Pediatr Diabetes. 2016 07;17 Suppl 22():65-72.

 

The etiology of human leukocyte antigen (HLA)-associated organ-specific autoimmune diseases is incomplete. In type 1 diabetes and celiac disease, the strongest associations are with the HLA-DR3-DQ2 and DR4-DQ8 haplotypes, whereas the DQB1*06:02 allele has a strong negative association. ...

Last Updated: 14 Jul 2016

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The Safety of Adjuvanted Vaccines Revisited: Vaccine-Induced Narcolepsy.
 

Author(s): S Sohail Ahmed, Emanuele Montomoli, Franco Laghi Pasini, Lawrence Steinman

Journal: Isr. Med. Assoc. J.. ;18(3-4):216-20.

 

Despite the very high benefit-to-risk ratio of vaccines, the fear of negative side effects has discouraged many people from getting vaccinated, resulting in the reemergence of previously controlled diseases such as measles, pertussis and diphtheria. This fear has been amplified more ...

Last Updated: 27 May 2016

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Clinical applications of sodium oxybate (GHB): from narcolepsy to alcohol withdrawal syndrome.
 

Author(s): F P Busardò, C Kyriakou, S Napoletano, E Marinelli, S Zaami

Journal: Eur Rev Med Pharmacol Sci. 2015 Dec;19(23):4654-63.

 

Gamma-hydroxybutyrate (GHB) is a short chain fatty acid endogenously produced within the central nervous system (CNS) and acts as a precursor and metabolite of the inhibitory neurotransmitter γ-aminobutyric acid (GABA). Although, it is an illegal recreational drug of abuse, its sodium ...

Last Updated: 24 Dec 2015

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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: 1 Sep 2017

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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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