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Navigating Narcolepsy



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What is Narcolepsy?

Narcolepsy is a rare neurological disorder that harms the brain’s ability to control being asleep and being awake. It’s most commonly defined by daytime drowsiness, as people with narcolepsy may fall asleep suddenly during the day. 


People with narcolepsy tend to fall asleep easily, deeply, and dream vividly. They may experience disturbed sleep during the night, extreme drowsiness when awake, hallucinations before falling asleep, loss of muscle control or sleep paralysis. 


Narcolepsy symptoms tend to manifest in adolescents, but go undiagnosed because they resemble many other disorders, such as emotional or psychiatric disorders. Although narcolepsy is a lifelong disorder that does not yet have a cure, symptoms are known to get better with age as well as with the help of treatment. 



A Narcolepsy Story

Narcolepsy might be a lifelong disorder, but that doesn’t mean it won’t get better. Simply getting a diagnosis and having a strong support system is enough to diminish narcolepsy to just another quirk, not something that needs to define you. 




Lifestyle Changes

In addition to medications, minor lifestyle changes can result in major improvements in your symptoms. 

Quantity sleep.

Frequent naps.

Unwind before bed.

Know your narcolepsy.



Loving Someone with Narcolepsy

Inform yourself.

Communication is key.

Be flexible.



Supporting You


Wake Up Narcolepsy is a nonprofit organization dedicated to improving the way narcolepsy is approached. They offer free, online support catered to bring together similar people with similar experiences. This includes support groups for comorbidities, parents and loved ones, pregnant women, LGBTQIA+, and support for college and careers. 


The Narcolepsy Network offers in-person support across the States, as well as an online weekly peer-led group. They also have a Facebook community for people to connect. 


Meetup is an online platform that contains online communities for everyone, including many groups for narcolepsy and cataplexy. 


For support in Canada: 


The Narcolepsy Network also provides a list of international organizations:


If you’re having difficulty finding support in your area, search “narcolepsy support groups near me” on Google.


The Search for a Cause

The cause of narcolepsy is suggested to be related to the levels of Hypocretin, a certain chemical found in the brain that regulates when a person is awake and when they are asleep. Though the levels of Hypocretin tend to be normal in people who have a certain type of narcolepsy without cataplexy (loss of muscle control sometimes triggered by extreme emotions), this chemical is still linked to narcolepsy in those who do have cataplexy. 


A related theorized factor for a cause of narcolepsy is autoimmune disorder. This could justify the loss of the cells in the brain that are supposed to produce Hypocretin in people who have narcolepsy with cataplexy. Family history and brain injury are other factors that may contribute in some way to the lack of Hypocretin. 


Recently scientists have made progress in the research for specific genes that impact the development of narcolepsy, specifically in relation to after they’ve contracted certain infections that cause the immune system to attack the body. 


Research is also being done to investigate certain compounds that would promote wakefulness for use in future treatments.



Helpful Resources


Organizations

Medical Information

People’s Stories

Other Resources


References


Canadian Sleep Society. (n.d.). Canadian Sleep Society - Société canadienne du sommeil. Retrieved October 14, 2024, from https://css-scs.ca/

Cleveland Clinic. (2022, December 26). Narcolepsy: What It Is, Causes, Symptoms & Treatment. Cleveland Clinic. Retrieved October 14, 2024, from https://my.clevelandclinic.org/health/diseases/12147-narcolepsy

Harvard Medical School. (2022, April 13). Daily Life | Sleep Medicine. Division of Sleep Medicine. Retrieved October 14, 2024, from https://sleep.hms.harvard.edu/education-training/public-education/sleep-and-health-education-program/sleep-health-education-5

Know Narcolepsy. (n.d.). Narcolepsy Blog: Know Our Stories. Know Narcolepsy. Retrieved October 14, 2024, from https://knownarcolepsy.com/narcolepsy-blogs

Know Narcolepsy (Director). (2018). People with Narcolepsy are Often Misunderstood – Emily’s Story [Film]. Youtube. https://www.youtube.com/watch?v=TUyVyOL8s7s&t=171s

Know Narcolepsy. (2024). In the Know: A Narcolepsy Mini-Podcast. Know Narcolepsy. Retrieved October 14, 2024, from https://knownarcolepsy.com/narcolepsy-mini-podcasts

Laguaite, M. (2021, July 8). Narcolepsy and Relationships: What You Need to Know. WebMD. Retrieved October 14, 2024, from https://www.webmd.com/sleep-disorders/features/relationships-narcolepsy

Lee, K. (2023, November 18). How Doctors Help People With Narcolepsy Treat and Manage Their Symptoms. Everyday Health. Retrieved October 13, 2024, from https://www.everydayhealth.com/narcolepsy/how-doctors-help-people-with-narcolepsy-treat-manage-their-symptoms

Mayo Clinic. (2023, January 14). Narcolepsy - Symptoms and causes. Mayo Clinic. Retrieved October 14, 2024, from https://www.mayoclinic.org/diseases-conditions/narcolepsy/symptoms-causes/syc-20375497

Meetup. (n.d.). Largest Narcolepsy & Cataplexy groups. Meetup. Retrieved October 14, 2024, from https://www.meetup.com/topics/narcolepsy/

More Than Tired. (2017). Printable PDF Epworth Sleepiness Scale for Adults. More Than Tired. Retrieved October 14, 2024, from https://www.morethantired.com/pdf/epworth-sleepiness-scale-ess.pdf

Narcolepsy Network. (n.d.). International Organizations - Narcolepsy Network Narcolepsy Network. Narcolepsy Network. Retrieved October 14, 2024, from https://narcolepsynetwork.org/resources/international-organizations/

Narcolepsy Network. (n.d.). Share Your Story - Narcolepsy Network Narcolepsy Network. Narcolepsy Network. Retrieved October 14, 2024, from https://narcolepsynetwork.org/about-narcolepsy/patient-stories/

Narcolepsy Network. (n.d.). Support Groups - Narcolepsy Network Narcolepsy Network. Narcolepsy Network. Retrieved October 14, 2024, from https://narcolepsynetwork.org/resources/support-groups/

Narcolepsy UK. (n.d.). Supporting a person with narcolepsy. Narcolepsy UK. Retrieved October 14, 2024, from https://www.narcolepsy.org.uk/supporting-a-person-with-narcolepsy/

National Health Service. (2022, December 30). Narcolepsy - Treatment. NHS. Retrieved October 14, 2024, from https://www.nhs.uk/conditions/narcolepsy/treatment/

National Institute of Neurological Disorders and Stroke. (2024, July 19). Narcolepsy | National Institute of Neurological Disorders and Stroke. National Institute of Neurological Disorders and Stroke. Retrieved October 14, 2024, from https://www.ninds.nih.gov/health-information/disorders/narcolepsy

Nazario, B., Heil, M., & Wiginton, K. (2020, August 5). Narcolepsy: Living With Someone Who Has It. WebMD. Retrieved October 14, 2024, from https://www.webmd.com/sleep-disorders/features/narcolepsy-living-with-someone

Sleep Foundation. (2024, May 2). Narcolepsy: Causes, Symptoms, & Treatments. Sleep Foundation. Retrieved October 14, 2024, from https://www.sleepfoundation.org/narcolepsy

Sleep On It. (n.d.). Patient Support Group - SLEEP ON IT! - Public Health Campaign on Sleep. Sleep On It Canada. Retrieved October 14, 2024, from https://sleeponitcanada.ca/events-and-patient-support-groups/patient-support-group/

Society for Women's Health Research. (2022, October 31). Narcolepsy Toolkit: A Woman’s Empowerment Guide. Society for Women's Health Research. Retrieved October 14, 2024, from https://swhr.org/resources/narcolepsy-toolkit-a-womans-empowerment-guide/

Wake Up Narcolepsy. (n.d.). Community. Wake Up Narcolepsy. Retrieved October 14, 2024, from https://www.wakeupnarcolepsy.org/community/

Wake Up Narcolepsy. (n.d.). Narcolepsy 360 Podcast. Wake Up Narcolepsy. Retrieved October 14, 2024, from https://www.wakeupnarcolepsy.org/podcast/

Wake Up Narcolepsy. (n.d.). Narcolepsy Nightcaps Podcast. Wake Up Narcolepsy. Retrieved October 14, 2024, from https://www.wakeupnarcolepsy.org/narcolepsy-nightcaps/


 
 
 

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