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Narcolepsy

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When Sleep Takes over Your Day

Narcolepsy is a chronic neurological disorder that affects the brain’s ability to regulate the sleep-wake cycle. People with narcolepsy experience excessive daytime sleepiness and may fall asleep suddenly at inappropriate times—often without warning. It can be debilitating, misunderstood, and frequently misdiagnosed, especially in communities with limited access to specialists. Narcolepsy doesn’t just cause sleepiness—it impacts mental health, work, school, and social relationships, making it a serious public health concern and an issue of sleep health equity.

What is Narcolepsy?

Narcolepsy is a lifelong disorder of the central nervous system marked by disrupted sleep-wake regulation. It’s not just “being tired”—it’s an involuntary and uncontrollable drive to sleep during the day.

 

There are two types of narcolepsy:

  • Type 1 (Narcolepsy with Cataplexy):

    • Includes sudden loss of muscle tone (cataplexy) triggered by strong emotions such as laughter or surprise. Often linked to low levels of hypocretin, a brain chemical that regulates wakefulness

  • Type 2 (Narcolepsy without Cataplexy):

    • Features similar daytime sleepiness but without cataplexy. Hypocretin levels are typically normal

Key Symptoms

  • Excessive Daytime Sleepiness (EDS):

    • An overwhelming need to sleep during the day, even after a full night’s rest. People may fall asleep at work, school, or while eating or talking

  • Cataplexy:

    • Sudden muscle weakness triggered by emotion, often affecting the face, jaw, arms, or legs. The person remains fully conscious

  • Sleep Paralysis:

    • Temporary inability to move or speak while falling asleep or waking up, often accompanied by a sense of fear

  • Hypnagogic Hallucinations:

    • Vivid, dream-like experiences that occur when falling asleep or waking up, sometimes frightening.

  • Disrupted Nighttime Sleep:

    • Ironically, people with narcolepsy often struggle with fragmented sleep, frequent awakenings, and poor sleep quality

Causes

Narcolepsy is believed to be caused by a loss of hypocretin-producing neurons in the brain, likely due to an autoimmune response. Other contributing factors include:

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  • Genetic predisposition (HLA-DQB1*06:02 gene)

  • Infections (e.g., strep throat, H1N1 flu)

  • Head trauma or brain injury (rare)

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Equity Considerations

​Narcolepsy often goes undiagnosed in people of color, women, and those without consistent healthcare. In a system where fatigue is often normalized—or misunderstood—people living with narcolepsy may be dismissed, overlooked, or even punished in work and school settings. Promoting equity means increasing awareness, improving access to sleep specialists, and dismantling stigma so that no one suffers in silence.

Treatment

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Barriers to Treatment

  • Misdiagnosis as depression, ADHD, or lack of motivation

  • Stigma and cultural misunderstanding about fatigue and napping

  • Limited access to specialists and sleep testing in marginalized communities

  • Delayed diagnosis—many patients wait 5 to 15 years for an accurate diagnosis

  • Medication cost and insurance hurdles

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Medications

  • Stimulants (e.g., modafinil, armodafinil): Improve alertness during the day

  • Sodium oxybate (Xyrem): Improves nighttime sleep and reduces cataplexy and daytime sleepiness

  • Antidepressants (SSRIs or SNRIs): Help reduce cataplexy, sleep paralysis, and hallucinations

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Lifestyle Strategies

  • Scheduled daytime naps (10–20 minutes)

  • Maintaining a consistent sleep schedule

  • Avoiding caffeine or alcohol before bed

  • Regular light exercise

  • Support groups and mental health care

Sources

1. National Institute of Neurological Disorders and Stroke (NINDS). (2023). Narcolepsy Fact Sheet. https://www.ninds.nih.gov/health-information/disorders/narcolepsy 2. American Academy of Sleep Medicine (AASM). (2021). Clinical Practice Guidelines for the Treatment of Central Disorders of Hypersomnolence. https://aasm.org/clinical-resources/practice-standards/narcolepsy/ 3. Thorpy, M. J., & Krieger, A. C. (2014). “Delays in the diagnosis of narcolepsy.” Journal of Clinical Sleep Medicine, 10(9), 1011–1014. https://doi.org/10.5664/jcsm.4020 4. Scammell, T. E. (2015). “Narcolepsy.” The New England Journal of Medicine, 373, 2654–2662. https://doi.org/10.1056/NEJMra1500587 5. Mignot, E. J. M. (2012). “A practical guide to the therapy of narcolepsy and hypersomnia syndromes.” Neurotherapeutics, 9(4), 739–752. https://doi.org/10.1007/s13311-012-0143-z 6. Black, J., & Houghton, W. C. (2006). “Central hypersomnolence disorders.” Sleep Medicine Clinics, 1(2), 333–356. https://doi.org/10.1016/j.jsmc.2006.04.005 7. Kamerow, D. (2013). “Narcolepsy: Underdiagnosed and undertreated.” BMJ, 346, f2030. https://doi.org/10.1136/bmj.f2030 8. BaHammam, A. S., et al. (2020). “Diagnostic and therapeutic challenges in narcolepsy: A focus on disparities in care.” Nature and Science of Sleep, 12, 255–264. https://doi.org/10.2147/NSS.S199451 9. Epworth Sleepiness Scale. (1991). Developed by Dr. Murray Johns, available via Epworth Foundation. https://epworthsleepinessscale.com/about-the-ess/ 10. U.S. Food and Drug Administration (FDA). (2023). Approved Treatments for Narcolepsy. https://www.fda.gov/drugs/information-drugs/narcolepsy

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