Navigating Narcolepsy
- Jahnavi Sharma
- Oct 14, 2024
- 7 min read
Table of Contents
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.
Getting the right amount of sleep is essential. Narcolepsy already causes extreme drowsiness and problems with sleeping, so lacking sleep will not do any better for symptoms. Being as consistent as possible with your sleep schedule can help to not further the impact of symptoms.
Frequent naps.
Constant drowsiness is a major symptom of narcolepsy, but taking multiple short naps throughout the day if possible can prove to be very refreshing. It can boost energy, mood, and help maintain focus.
Unwind before bed.
It is important to limit any factors that can impact your quality of sleep at night. This means avoiding caffeine, alcohol, smoking, exercise, and heavy meals 4-5 hours before you go to bed. Improving the quality of your sleep can be as simple as taking a warm bath or reading a book before you go to sleep.
Know your narcolepsy.
Learn as much as you can about how narcolepsy affects you. What are the best ways for you to adapt and handle symptoms when they occur? This could be breaking up monotone tasks into smaller ones, keeping yourself busy by taking frequent walks, or standing for long periods of time.
References: National Institute of Neurological Disorders and Stroke, Mayo Clinic, National Health Service, Everyday Health, WebMD
Loving Someone with Narcolepsy
Inform yourself.
Taking it upon yourself to learn more about what someone is going through will not only help you understand how this may impact them, but is also a great way to show that you want to help and foster open communication.
Communication is key.
Once you’ve learned the basics of narcolepsy, you must recognize that it’s different for everyone. In order to truly help and understand your loved one, it’s important to tell them that you’re there for them. Narcolepsy being a rare disorder means that it’s often misunderstood. Being constantly misunderstood or labeled as lazy can be lonely. Let your person know that they can talk to you.
Be flexible.
Know that with narcolepsy, everyday brings something different. One day could be regular drowsiness, but the next might mean a complete lack of motivation. It is important that you acknowledge this and accommodate. Adapting to a flexible schedule can help relieve pressure from someone that is scared to make commitments because of narcolepsy.
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
Committed to raising awareness, educating the public, and promoting further research into narcolepsy since 1984, the Narcolepsy Network website has valuable information on everything from medical info to narcolepsy news.
Wake Up Narcolepsy is a nonprofit organization dedicated to funding research for a narcolepsy cure, speeding up the narcolepsy diagnosis process, providing support, and raising awareness.
The Canadian Sleep Society aims to improve sleep for all of those living with sleep-related conditions through advocacy for sleep medicine, raising awareness for sleep disorders, and promoting quality care.
People’s Stories
Blogs
A place where you can read about other people’s journeys with narcolepsy, and share your own!
Read stories written by people with narcolepsy about their daily lives, challenges, and advice.
Podcasts
In the Know: A Narcolepsy Mini-Podcast
A podcast where every episode features two people with narcolepsy talking about their everyday lives in a way that is relatable and helpful.
A podcast in the form of interviews that aims to shed light on the parts of narcolepsy that are less talked about.
Other Resources
A podcast that features people with narcolepsy reading soothing bedtime stories.
The Society for Women’s Health Research’s Narcolepsy Toolkit: A Woman’s Empowerment Guide
A comprehensive guide created to help women navigate their lives with narcolepsy.
A scale that helps quantify daytime drowsiness by assessing your responses to eight situations.
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/