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Evaluating for Cataplexy in Narcolepsy

Hear how people may describe their cataplexy and gain insights to help enhance your clinical interview skills.

1 What CTP Can Feel Like

What Cataplexy Can Feel Like

Nicki

Nicki describes what triggers her cataplexy and what it feels like when she loses muscle control.

Cataplexy is not always obvious.1,2

Cataplexy can be difficult to recognize in clinical settings,1,3 and patients may not report cataplexy.4 Cataplexy may also appear years after the onset of excessive daytime sleepiness, so it is important to explore cataplexy with patients on more than one occasion.5,6 Including someone who knows the patient well can help during the clinical evaluation, as this person may have noticed less obvious signs of cataplexy.1,3

The severity of cataplexy is multifaceted and should not be based solely on the clinical features of cataplexy attacks themselves.2 It is also important to consider psychosocial consequences and limitations on daily life that may occur as a result of cataplexy.7

Listen carefully, and evaluate for:

  • Pattern of muscle weakness1,2,5,8-10
    • Do you ever experience any complete attacks of collapse?
    • Do your knees ever buckle or give out?
    • Do you experience any sagging or muscle weakness in your face or neck, like slurred speech, sagging of the jaw, or head dropping?
    • Do you feel like you are clumsy or drop things a lot?
    • Do you ever feel any odd muscle sensations, like tingling or twitching?
  • Emotional triggers1-3
    • Do you ever experience muscle weakness with certain emotions?
    • What types of emotions trigger your cataplexy? Happiness? Laughter/humor? Anger? Excitement? Stress or anxiety? Tension? Anticipation? Embarrassment?
  • Situational triggers1-3
    • Do you ever experience muscle weakness when you are in certain situations?
    • What types of situations trigger your cataplexy? Telling or hearing a joke? Making a witty remark? Being tickled? Being the center of attention? Unexpectedly encountering a friend or acquaintance? Being startled? Remembering happy or emotional events? Intimate moments? Romantic thoughts or moments? Experiencing an orgasm?
  • Impact of cataplexy2,11
    • Do you ever suppress your emotions or are withdrawn from family and friends?
    • Do you avoid situations that may trigger a cataplexy attack?

Sharon, living with narcolepsy

I just believed I was clumsy because I had bumps and bruises.

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Cataplexy may be hard to recognize.1,2

Cataplexy is the pathognomonic symptom of narcolepsy, but it rarely presents in a clinical setting.1,5 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.1,5,8

Cataplexy may manifest as an obvious complete collapse.1

A person’s knees may buckle or he or she may collapse to the ground and remain there for a brief period.1,5

More commonly, cataplexy is partial and less obvious.2,12

Cataplexy often occurs in the head and neck, manifesting as head drops.1,5 Facial hypotonia is a reliable marker of cataplexy, with abrupt interruption of the smile or facial expression, mouth opening, sagging of the jaw or eye muscles, being clumsy, or dropping things.5,9,13

Your patients may also describe their cataplexy as positive motor phenomena1, including:

  • Tingling14
  • A tremor2
  • A small muscle jerk or twitch of the face1,10

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.2

Cataplexy can be triggered by a wide range of emotions or situations.1,10

  • Happiness6
  • Laughter/humor2
  • Anger2
  • Excitement3
  • Stress2 or anxiety6
  • Tension3
  • Anticipation2
  • Embarassment2,3
Emotions
  • 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
Situations
  1. American Academy of Sleep Medicine. International Classification of Sleep Disorders. 3rd ed. Darien, IL: American Academy of Sleep Medicine; 2014.
  2. 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.
  3. 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.
  4. Overeem S, Reading P, Bassetti C. Narcolepsy. Sleep Med Clin. 2012;7:263-281.
  5. 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.
  6. Sturzenegger C, Bassetti CL. The clinical spectrum of narcolepsy with cataplexy: a reappraisal. J Sleep Res. 2004;13(4):395-406.
  7. 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.
  8. 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.
  9. Pelayo R, Lopes MC. Narcolepsy. In: Lee-Chiong, TL, ed. Sleep: A Comprehensive Handbook. Hoboken, NJ: John Wiley & Sons; 2006:145-149.
  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. Broughton R, Ghanem Q, Hishikawa Y, et al. Life effects of narcolepsy in 180 patients from North America, Asia and Europe compared to matched controls. Can J Neurol Sci. 1981;8(4):299-304.
  12. Ahmed I, Thorpy M. Clinical features, diagnosis and treatment of narcolepsy. Clin Chest Med. 2010;31(2):371-381.
  13. 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.
  14. Lee EK, Douglass AB. Baclofen for narcolepsy with cataplexy: two cases. Nat Sci Sleep. 2015;7:81-83.

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; nearly 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 sometimes frightening dream-like events that occur when falling asleep.

Also known as orexin. 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 living 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 fast-frequency, desynchronized activity on 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.

The VLPO as well as the median preoptic nucleus (MnPO) are located in the hypothalamus and contain essential neurons for promoting non-REM sleep. These neurons project to all wake-promoting regions to inhibit wakefulness and promote non-REM sleep during the night.8,11 Neurons in the extended VLPO mediate the promotion of REM sleep by inhibiting certain wake-promoting neurons that suppress REM sleep.8