“When I start regaining muscle control, I start realizing how much control I had lost.”– Nicki

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There's More to Know About the Symptoms of Narcolepsy

Though not present in all people living with narcolepsy, symptoms like cataplexy, disrupted nighttime sleep, hypnagogic hallucinations, and sleep paralysis can also have a substantial impact on patients.1-4

Cataplexy Is Not Always Obvious1,4

Cataplexy is the pathognomonic symptom of narcolepsy, but it rarely presents in a clinical setting.1,3 The cataplexy phenotype can range from obvious complete collapse to less obvious manifestations and may occur multiple times per day to less than once per month.1,3,5

It is important to know how to evaluate for less obvious manifestations of cataplexy and to have your patients come to their appointment with a family member or close friend who may recognize symptoms.1,3,6

Obvious Cataplexy Character

Obvious Complete Cataplexy

A person’s knees may buckle or he or she may collapse to the ground and remain there for a brief period.1,3

Cataplexy more commonly occurs in the head and neck, manifesting as head drops.1,3 Facial hypotonia is a reliable marker of cataplexy, with abrupt interruption of the smile or facial expression, mouth opening, or sagging of the jaw or eye muscles.7

Less Obvious Cataplexy Character

Less Obvious Partial Cataplexy

More commonly, cataplexy is partial and can be difficult to recognize.4,8 People may not realize that they have cataplexy or recognize its impact. They often believe that these experiences are normal, or they may avoid situations that trigger attacks.4

Your patients may describe their cataplexy as:

  • Tingling9
  • A tremor4
  • A small muscle jerk or twitch of the face1,10
  • Being clumsy/dropping things3,11
Cataplexy can be triggered by a wide range of emotions or situations.1,10
  • Happiness12
  • Laughter/humor4
  • Anger4
  • Excitement13
  • Stress7 or anxiety12
  • Tension13
  • Anticipation4
  • Embarassment4,13
  • Telling or hearing a joke, making a witty remark1,4
  • Being tickled4
  • Being the center of attention4
  • Unexpectedly encountering a friend or acquaintance4
  • Being startled4
  • Remembering happy events or being emotionally moved13
  • Intimate moments
    • Romantic thought or moment13
    • Experiencing an orgasm4

People With Narcolepsy May Struggle to Maintain Continuous Nocturnal Sleep1

Disrupted Sleep

Disrupted Nighttime Sleep

Many people with narcolepsy have disrupted nighttime sleep, reporting frequent awakenings and poor-quality sleep at night.1,14 They may report the inability to sleep through the night as a significant lifestyle limitation and more of a problem than other symptoms.1,15

Dream-like Hallucinations May Occur at the Edges of Sleep1,16

Hypnagogic Hypnopompic Hallucinations female

Hypnopompic Hallucinations

About one-third of all people living with narcolepsy experience hypnagogic hallucinations—vivid dream-like experiences while falling asleep.1,6 When these occur while waking up, they are called hypnopompic hallucinations.1 People may see lifelike phenomena, which can be realistic and frightening, including dark shadows, threatening figures, animals, or people.6,8,17

The Paralysis of REM Sleep May Occur at Sleep-Wake Transitions1,16

Sleep Paralysis

Sleep Paralysis

Up to 46% of people living with narcolepsy experience sleep paralysis—the temporary inability to move or speak during sleep-wake transitions.1,8,17 Sleep paralysis usually occurs at the point of waking but may occur at sleep onset.6 During these episodes, people may feel like they are being suffocated or weighed down,6,17 and they may become frightened or have anxiety associated with fear that they are dying.11,17

Sleep paralysis and hypnagogic hallucinations can occur together and are the result of REM sleep elements intruding into wakefulness.6,16

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  1. American Academy of Sleep Medicine. International Classification of Sleep Disorders. 3rd ed. Darien, IL: American Academy of Sleep Medicine; 2014.
  2. Thorpy MJ, Dauvilliers Y. Clinical and practical considerations in the pharmacologic management of narcolepsy. Sleep Med. 2015;16(1):9-18.
  3. Thorpy M, Morse AM. Reducing the clinical and socioeconomic burden of narcolepsy by earlier diagnosis and effective treatment. Sleep Med Clin. 2017;12(1):61-71.
  4. Overeem S. The clinical features of cataplexy. In: Baumann CR, Bassetti CL, Scammell TE, eds. Narcolepsy: Pathophysiology, Diagnosis, and Treatment. Springer-Verlag New York; 2011:283-290.
  5. Dauvilliers Y, Siegel JM, Lopez R, Torontali ZA, Peever JH. Cataplexy—clinical aspects, pathophysiology and management strategy. Nat Rev Neurol. 2014;10(7):386-395.
  6. Overeem S, Reading P, Bassetti C. Narcolepsy. Sleep Med Clin. 2012;7:263-281.
  7. Pizza F, Antelmi E, Vandi S, et al. The distinguishing motor features of cataplexy: a study from video-recorded attacks. Sleep. 2018;41(5). doi: 10.1093/sleep/zsy026.
  8. Ahmed I, Thorpy M. Clinical features, diagnosis and treatment of narcolepsy. Clin Chest Med. 2010;31(2):371-381.
  9. Lee EK, Douglass AB. Baclofen for narcolepsy with cataplexy: two cases. Nat Sci Sleep. 2015;7:81-83.
  10. Overeem S, van Nues S, van der Zande WL, Donjacour CE, van Mierlo P, Lammers GJ. The clinical features of cataplexy: a questionnaire study in narcolepsy patients with and without hypocretin-1 deficiency. Sleep Med. 2011;12(1):12-18.
  11. Pelayo R, Lopes MC. Narcolepsy. In: Lee-Chiong, TL, ed. Sleep: a comprehensive textbook. John Wiley & Sons, Inc.; 2006: 145-149.
  12. Sturzenegger C, Bassetti CL. The clinical spectrum of narcolepsy with cataplexy: a reappraisal. J Sleep Res. 2004;13(4):395-406.
  13. Anic-Labat S, Guilleminault C, Kraemer HC, Meehan J, Arrigoni J, Mignot E. Validation of a cataplexy questionnaire in 983 sleep-disorders patients. Sleep. 1999;22(1):77-87.
  14. Roth T, Dauvilliers Y, Mignot E, et al. Disrupted nighttime sleep in narcolepsy. J Clin Sleep Med. 2013;9(9):955-965.
  15. Maski K, Steinhart E, Williams D, et al. Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy. J Clin Sleep Med. 2017;13(3):419-425.
  16. Scammell TE. Narcolepsy. N Engl J Med. 2015;373(27):2654-2662.
  17. Dauvilliers Y, Lopez R. Parasomnias in narcolepsy with cataplexy. In: Baumann CR, Bassetti CL, Scammell TE, eds. Narcolepsy: Pathophysiology, Diagnosis, and Treatment. Springer-Verlag New York; 2011:291-299.

Performance of routine tasks without awareness.

Sudden and brief loss of muscle tone, often triggered by strong emotions or certain situations. Narcolepsy with cataplexy is known as narcolepsy type 1.

Complete collapse to the ground; all skeletal muscles are involved.

Only certain muscle groups are involved.

Biological clock mechanism that regulates the 24-hour cycle in the physiological processes of living beings. It is controlled in part by the SCN in the hypothalamus and is affected by the daily light-dark cycle.

Frequent awakenings and inappropriate transitions between states of sleep and wakefulness during nighttime sleep.

The inability to stay awake and alert during the day.

A neurotransmitter in the brain that supports wakefulness.

Vivid, realistic, and frightening dream-like events that occur when falling asleep.

A neuropeptide that supports wakefulness and helps suppress non-REM sleep and REM sleep.

Primary brain region for regulating the timing of sleep-wake states.

Unintentionally falling asleep due to excessive daytime sleepiness. Also known as “sleep attacks.”

Brief, unintentional lapses into sleep, or loss of awareness.

A validated objective measure of the tendency to fall asleep in quiet situations.

People with narcolepsy type 1 have low levels of hypocretin.

Narcolepsy without cataplexy; the cause of narcolepsy type 2 is unknown.

A state of sleep characterized by slower-frequency, more synchronized neuronal activity and decreased muscle tone. Deep stages help to restore the body.

A multiparameter test that monitors physiologic signals during sleep; used as a diagnostic tool in sleep medicine.

A state of sleep characterized by low-amplitude, fast-frequency EEG, vivid dreams, and loss of muscle tone. Normally occurs 60-90 minutes after sleep onset. Also known as “paradoxical sleep.”

Brief loss of control of voluntary muscles with retained awareness at sleep-wake transitions.

Sleep-onset REM period.