“When I start regaining muscle control, I start realizing how much control I had lost.”– Nicki
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 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 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:
- A tremor4
- A small muscle jerk or twitch of the face1,10
- Being clumsy/dropping things3,11
People With Narcolepsy May Struggle to Maintain Continuous Nocturnal Sleep1
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
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
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
- American Academy of Sleep Medicine. International Classification of Sleep Disorders. 3rd ed. Darien, IL: American Academy of Sleep Medicine; 2014.
- Thorpy MJ, Dauvilliers Y. Clinical and practical considerations in the pharmacologic management of narcolepsy. Sleep Med. 2015;16(1):9-18.
- 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.
- 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.
- 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.
- Overeem S, Reading P, Bassetti C. Narcolepsy. Sleep Med Clin. 2012;7:263-281.
- 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.
- Ahmed I, Thorpy M. Clinical features, diagnosis and treatment of narcolepsy. Clin Chest Med. 2010;31(2):371-381.
- Lee EK, Douglass AB. Baclofen for narcolepsy with cataplexy: two cases. Nat Sci Sleep. 2015;7:81-83.
- 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.
- Pelayo R, Lopes MC. Narcolepsy. In: Lee-Chiong, TL, ed. Sleep: a comprehensive textbook. John Wiley & Sons, Inc.; 2006: 145-149.
- Sturzenegger C, Bassetti CL. The clinical spectrum of narcolepsy with cataplexy: a reappraisal. J Sleep Res. 2004;13(4):395-406.
- 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.
- Roth T, Dauvilliers Y, Mignot E, et al. Disrupted nighttime sleep in narcolepsy. J Clin Sleep Med. 2013;9(9):955-965.
- 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.
- Scammell TE. Narcolepsy. N Engl J Med. 2015;373(27):2654-2662.
- 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.