EDS patient in box image

Manifestations of EDS are not always obvious2,4,5

  • Inability to stay awake and alert2
  • Lapses in vigilance or concentration2,5
  • Patients may describe “tiredness” or “fatigue”5
  • Irrepressible need for sleep2
  • Unintended lapses into drowsiness or sleep2

Since all people with narcolepsy have chronic daily EDS, it is important to be aware of the different manifestations2,5

Cataplexy patient in box image

Cataplexy occurs in up to two-thirds of people with narcolepsy but may be difficult to recognize2,6,7

Cataplexy commonly affects facial muscles, with abrupt interruption of smile or facial expression8

  • Drooping of the eyelids (ptosis)
  • Facial hypotonia
  • Mouth opening
  • Tongue protrusions
  • Positive motor phenomena (facial jerks, grimaces)

Patients may knowingly or unknowingly avoid situations that could trigger symptoms3,9,10

In a national survey of 200 people living with narcolepsy9,*:

Out of 200 people living with narcolepsy 88% indicated their symptoms were not under control

Indicated that their symptoms were not completely or mostly under control

Out of 200 people living with narcolepsy 86% indicated that they made changes to their lives due to narcolepsy

Indicated that they made changes to their lives in some way because of their narcolepsy

Ask your patients with narcolepsy if they still...

Fight to stay awake and alert throughout the day2

Feel a constant need to sleep that they just can’t shake2

Feel likely to doze off in everyday situations like when they are at work, or riding in a car2,11

Wake up feeling refreshed, but it doesn’t last2

Experience periods of muscle weakness in their face or neck2

Avoid emotions or certain situations because of their cataplexy3,9,10

Assessing Ongoing Symptoms Guide

Use these specific questions to ask your patients with narcolepsy to help uncover excessive daytime sleepiness and cataplexy.

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Assessing Ongoing Symptoms Guide

*Data from a 3-part survey of 1654 US adults including those with narcolepsy (n=200), the general public (n=1203), and physicians (n=251) currently in clinical practice who have treated patients with narcolepsy in the last 2 years. Surveys of people with narcolepsy and the general public were conducted online in March and April 2018, and physicians were surveyed in August 2018. Versta Research conducted the survey on behalf of Harmony Biosciences.9 The Narcolepsy Network collaborated on the patient survey. Eighty-four percent (n=169) of respondents with narcolepsy were taking medications for their narcolepsy. For these responses, patients were asked their perspectives on all their narcolepsy symptoms (not specific to EDS or cataplexy) as well as the disorder in general.9