Feel persistently tired or drowsy throughout the day
It Takes...
01UNDERSTANDING NARCOLEPSY
Understanding narcolepsy
When the brain can’t regulate sleep-wake cycles normally, staying awake can become a constant, exhausting challenge.1,2 For many living with narcolepsy, simply getting a clear explanation is the first step towards feeling understood.2
This page is designed to help provide clarity. Here, we break down what narcolepsy actually is (and what it isn’t), highlight the key symptoms, and explain the differences between narcolepsy type 1 and type 2.
What is narcolepsy?
Narcolepsy is a chronic neurological sleep disorder that affects how the brain controls sleep and wakefulness.2 People with narcolepsy may feel overwhelmingly sleepy during the day and experience sleep-related symptoms that can occur at unexpected times.1
Because symptoms don’t always look the same and often develop gradually, narcolepsy is frequently misunderstood or missed, sometimes for years.3,4 It can affect people of any age and may begin in childhood, adolescence, or early adulthood.4
Who it affects and why
Studies suggest that narcolepsy affects approximately 20 to 50 out of every 100,000 people.5–8 Most people first notice symptoms during their teenage years, though symptoms can emerge at any point in life.6
It’s thought that narcolepsy develops through a combination of genetic and environmental factors. Some people carry genes that may increase their risk, but having these genes doesn’t mean they will necessarily develop narcolepsy. Research suggests that infections or other environmental triggers may sometimes prompt the immune system to mistakenly damage the brain cells that produce orexin, a chemical that helps regulate wakefulness.5,6
When orexin levels are reduced, symptoms of narcolepsy can develop.6
There are 5 major symptoms of narcolepsy; you don’t have to have them all to have narcolepsy1
Excessive daytime sleepiness (EDS) is the hallmark symptom of narcolepsy. It involves an ongoing, overwhelming need to sleep during the day, even after what feels like enough sleep at night.9,10
People with EDS may:9,10
Struggle to stay alert during quiet or routine activities
Experience “sleep attacks,” where sleep comes on suddenly
Feel briefly refreshed after naps, with sleepiness returning soon after
Other major symptoms of narcolepsy are:
Sudden muscle weakness triggered by emotions
People often describe cataplexy as a sudden loss of strength in their muscles when they experience strong emotions like laughter, surprise, or anger. This can range from mild effects (like a drooping eyelid or slack jaw) to more severe episodes where the person may collapse but remain fully conscious.
There are 2 types of narcolepsy – narcolepsy type 1 (NT1) and narcolepsy type 2 (NT2)
Narcolepsy type 1 is caused by a loss of brain cells that produce orexin, a chemical that helps keep us awake and controls rapid-eye movement (REM) sleep.1 REM sleep is a stage of sleep involving vivid dreams and increased brain activity, and it is important for emotional regulation, memory processing and learning12–14
When orexin levels are low, the brain struggles to regulate sleep and wakefulness normally.15
A key feature of NT1 is cataplexy, a sudden loss of muscle strength that is usually triggered by strong emotions such as laughter, surprise, or excitement. Cataplexy can look very different from person to person, ranging from brief weakness in the face or knees to a full collapse.2,11
Common features of NT1:1,15
- Ongoing excessive daytime sleepiness
- REM sleep-related symptoms, including:
- Cataplexy: Sudden muscle weakness or loss of control triggered by strong emotions (like laughter or surprise)
- Vivid hallucinations: Intense, lifelike experiences when falling asleep or waking up
- Sleep paralysis: A temporary inability to move or speak during sleep-wake transitions
- Low levels of orexin (often confirmed with specialist testing)
Personal perspectives
Everyone's experience is different. Some people spend years trying to make sense of persistent daytime sleepiness or unexplained symptoms before getting an accurate diagnosis. Explore real stories from people living with narcolepsy and learn about their individual journeys to diagnosis.
These stories reflect personal experiences and are not a substitute for medical advice. If you have concerns about your symptoms, consult with a healthcare professional.
The information provided is not intended as professional and/or medical advice. Please consult a healthcare professional for further advice.
Justice's story
Justice shares how it takes careful planning and knowing her body's schedule to be a high-functioning collegiate athlete with narcolepsy type 1. By being open and inviting people in who understand that her condition is a part of who she is, she's able to combat the stigma of living with this disease.
My name is Justice. I have narcolepsy type 1. I definitely grew up as an athletic family, but I started noticing at specific times in the day I would pass out like a light bulb and definitely because I was a high-functioning human, a high achiever, excelled athletically.
—JUSTICE, living with NT1
IT TAKES nap gaps and relentless scheduling to show up at work WHEN LIVING WITH MY NARCOLEPSY TYPE 1
Everyone's experience is different. The impact and symptoms of narcolepsy described in these stories are based on individual patient experiences and may not be applicable to all patients with narcolepsy. Individual experiences may vary.
Explore real stories from people living with narcolepsy and the paths they took to diagnosis. Informed consent was obtained from patients before filming and for sharing this video on this platform.
NT1, narcolepsy type 1; NT2, narcolepsy type 2; REM, rapid eye movement.
REFERENCES
- Morse AM, Kim SY, Harris S, et al. Narcolepsy: Beyond the Classic Pentad. CNS Drugs. 2025;39(Suppl 1):9–22.
- Hlodak J, Geckova AM, Veselska ZD, et al. 'It's hard to feel this way every single day': patients' perspectives on the emotional burden of narcolepsy. Front Psychol. 2025;16:1611500.
- Shen Z, Shuai Y, Mou S, et al. Cases of narcolepsy misdiagnosed as other psychiatric disorders. Front Psychiatry. 2022;13:942839.
- Frauscher B, Ehrmann L, Mitterling T, et al. Delayed Diagnosis, Range of Severity, and Multiple Sleep Comorbidities: A Clinical and Polysomnographic Analysis of 100 Patients of the Innsbruck Narcolepsy Cohort. J Clin Sleep Med. 2013;9(8):805–812.
- Longstreth WT Jr, Koepsell TD, Ton TG, et al. The epidemiology of narcolepsy. Sleep. 2007;30(1):13–26.
- Bassetti CLA, Adamantidis A, Burdakov D, et al. Narcolepsy — clinical spectrum, aetiopathophysiology, diagnosis and treatment. Nat Rev Neurol. 2019;15:519–539.
- Silber MH, Krahn LE, Olson EJ, et al. The epidemiology of narcolepsy in Olmsted County, Minnesota: a population-based study. Sleep. 2002;25(2):197–202.
- Hublin C, Kaprio J, Partinen M, et al. The prevalence of narcolepsy: an epidemiological study of the Finnish Twin Cohort. Ann Neurol. 1994;35(6):709–716.
- Zeman A, Britton T, Douglas N, et al. Narcolepsy and excessive daytime sleepiness. BMJ. 2004;329:724–728.
- Chavda V, Chaurasia B, Umana GE, et al. Narcolepsy-A Neuropathological Obscure Sleep Disorder: A Narrative Review of Current Literature. Brain Sci. 2022;12(11):1473.
- American Academy of Sleep Medicine. International classification of sleep disorders, revised: Diagnostic and coding manual. Chicago: American Academy of Sleep Medicine. 2001; ISBN:0-9657220-1–5.
- Barateau L, Lopez R, Chenini S, et al. Linking clinical complaints and objective measures of disrupted nighttime sleep in narcolepsy type 1. Sleep. 2022;45(6):zsac054.
- Scarpelli S, Bartolacci C, D'Atri A, et al. The functional role of dreaming in emotional processes. Front Psychol. 2019;10:459.
- Mishra A and Colgin LL. The high energy cost of theta–gamma activity during REM sleep. Trends Neurosci. 2019;42(4):239–241.
- Inutsuka A and Yamanaka A. The physiological role of orexin/hypocretin neurons in the regulation of sleep/wakefulness and neuroendocrine functions. Front Endocrinol. 2013;4:18.
- Biscarini F, Barateau L, Pizza F, et al. Present and future of central disorders of hypersomnolence. J Sleep Res. 2025;34:e70118.
- Cavalli RG, Tamagni AEM, van der Meer J, et al. Narcolepsy type 2 is an unstable diagnosis and idiopathic hypersomnia has the potential for remission-long-term and cross-sectional observations from the Bern Sleep-Wake Registry. Sleep. 2026;49(3):zsaf242.
C-ANPROM/INT/NON/0290, September 2026