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.

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.

Last Updated: 11 Jul 2016

View Details
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

View Details
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

View Details

 

General Support Organizations

Not finding the support you need? Show General Support Organizations

 
 
Top

How do you compare to others with this condition?

Privately answer questions about your health. Let resources, you select, come to you.

Anonymously share and see how your answers compare with others with this condition while privately providing key pieces of information to medical researchers, disease advocacy groups, and others ONLY YOU select to help speed up cures and better alternatives.

 
 

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

View Details
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

View Details
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

View Details

 

General Support Organizations

Not finding the support you need? Show General Support Organizations

 
 
 
 
Top

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

Identification of a methylation profile for DNMT1-associated autosomal dominant cerebellar ataxia, deafness, and narcolepsy.
 

Author(s): Kristin D Kernohan, Laila Cigana Schenkel, Lijia Huang, Amanda Smith, Guillaume Pare, Peter Ainsworth, , Kym M Boycott, Jodi Warman-Chardon, Bekim Sadikovic

Journal:

 

DNA methylation is an essential epigenetic mark, controlled by DNA methyltransferase (DNMT) proteins, which regulates chromatin structure and gene expression throughout the genome. In this study, we describe a family with adult-onset autosomal dominant cerebellar ataxia with deafness ...

Last Updated: 7 Sep 2016

Go To URL
No Evidence for Disease History as a Risk Factor for Narcolepsy after A(H1N1)pdm09 Vaccination.
 

Author(s): Favelle Lamb, Alexander Ploner, Katharina Fink, Markus Maeurer, Peter Bergman, Fredrik Piehl, Daniel Weibel, Pär Sparén, Lisen Arnheim Dahlström

Journal:

 

To investigate disease history before A(H1N1)pdm09 vaccination as a risk factor for narcolepsy.

Last Updated: 28 Apr 2016

Go To URL
Circadian Rest-Activity Rhythm in Pediatric Type 1 Narcolepsy.
 

Author(s): Marco Filardi, Fabio Pizza, Oliviero Bruni, Vincenzo Natale, Giuseppe Plazzi

Journal:

 

Pediatric type 1 narcolepsy is often challenging to diagnose and remains largely undiagnosed. Excessive daytime sleepiness, disrupted nocturnal sleep, and a peculiar phenotype of cataplexy are the prominent features. The knowledge available about the regulation of circadian rhythms ...

Last Updated: 9 Jun 2016

Go To URL

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

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

Go To URL
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

Go To URL
Pandemrix™ and narcolepsy: A critical appraisal of the observational studies.
 

Author(s): Thomas Verstraeten, Catherine Cohet, Gaël Dos Santos, Germano Lc Ferreira, Kaatje Bollaerts, Vincent Bauchau, Vivek Shinde

Journal: Hum Vaccin Immunother. 2016 ;12(1):187-93.

 

A link between Pandemrix™ (AS03-adjuvanted H1N1 pandemic influenza vaccine, GSK Vaccines, Belgium) and narcolepsy was first suspected in 2010 in Sweden and Finland following a number of reports in children and adolescents. Initial scepticism about the reported association faded ...

Last Updated: 3 Feb 2016

Go To URL
 
 
Top

Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

 
 
Top

Clinical Trial Information This information is provided by ClinicalTrials.gov

Last Updated: 11 May 2016

Go to URL
Xyrem and Brain Dopamine in Narcolepsy
 

Status: Recruiting

Condition Summary: Narcolepsy With Cataplexy

 

Last Updated: 8 Jul 2016

Go to URL
Metabolism Characteristics in the Children With Narcolepsy
 

Status: Recruiting

Condition Summary: Narcolepsy

 

Last Updated: 14 Jun 2016

Go to URL