What you might not know
Narcolepsy is a chronic, potentially disabling condition that is thought to occur when certain natural chemicals in the brain (called neurotransmitters) fail to properly maintain boundaries between sleep and wake. This can lead to excessive daytime sleepiness (EDS) and cataplexy (sudden weakening of muscles) during the day.
Excessive Daytime Sleepiness (EDS)Everyone with narcolepsy has EDS.
- The irresistible need to sleep during the day—every day
- Most likely to happen in situations that don’t require active participation, such as when you are watching TV or reading a book
- Can also occur when it is important to be alert, such as during conversations, eating, walking, or at work
People with narcolepsy may nap several times a day, but only feel refreshed for a short time.
CataplexyCataplexy is a common symptom of narcolepsy, and happens when your muscles suddenly become weak or go limp when you feel a strong emotion such as laughing, joking, or anger. Not everyone with narcolepsy has cataplexy.
- Attacks can be fairly mild—such as a sagging jaw, drooping eyelid or head drop, slurred speech, weakness in the arm or shoulder, or buckling knees.
- In severe cases, people can fall or sink to the ground, even though they are awake and aware of their surroundings.
- Cataplexy attacks usually last a few seconds to a few minutes.
The importance of diagnosis
Narcolepsy is not always easy to diagnose, and unfortunately, it can take a long time to reach that point. If you've been diagnosed with narcolepsy with EDS or both EDS and cataplexy, you may be concerned about what it will mean. But diagnosis is a good thing because now your healthcare provider can start treating your symptoms.
Challenges with EDS and/or cataplexy in narcolepsy
- Narcolepsy is underrecognized and underdiagnosed
- Can interfere with normal daily activities
MEASURING YOUR SLEEPINESS
ESS, the Epworth Sleepiness Scale, is a tool to determine how likely you are to fall asleep in everyday situations. The ESS helps measure the degree of daytime sleepiness that you experience. You can keep track of your daytime sleepiness while on treatment to measure your progress.
Complete this and share your results with your healthcare provider. Please select the answer that best applies for each situation:
- 0 = Would never doze
- 1 = Slight chance of dozing
- 2 = Moderate chance of dozing
- 3 = High chance of dozing
Sitting and reading
Sitting inactive in a public place, such as a theater or a meeting
As a passenger in a car for an hour without a break
Sitting and talking to someone
Sitting quietly after a lunch without alcohol
In a car, while stopped for a few minutes in traffic
Source: Johns MW. A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Sleep 1991;14(6):540-545. This copyrighted material is used with permission granted by the Associated Professional Sleep Societies, October 2012. Unauthorized copying, printing, or distribution of this material is strictly prohibited.
Share these important scores with your healthcare provider
Tests like the ESS (above) and the SNS (below) can help screen for excessive daytime sleepiness (EDS) and cataplexy in narcolepsy, but proper diagnosis requires a complete exam from a healthcare provider. To help him or her make an accurate diagnosis, be open and honest about all of your symptoms and be sure to share your ESS and SNS scores.
Use the Doctor Discussion Guide to help you have a more informed and effective conversation at your visit. It provides some important questions and considerations to discuss with your healthcare provider.
Exploring Your sYmptoms
The Swiss Narcolepsy Scale (SNS) helps determine if you may have narcolepsy with cataplexy.
Complete this and share your results with your healthcare provider. Please choose the best answers using the scales shown for each question.
How often are you unable to fall asleep?
How often do you feel bad or not well rested in the morning?
How often do you take a nap during the day?
How often have you experienced weak knees/buckling of the knees during emotions like laughing, happiness, or anger?
How often have you experienced sagging of the jaw during emotions like laughing, happiness, or anger?
This copyrighted material is reproduced with the permission of the authors. Unauthorized copy,
printing, or distribution is strictly prohibited.
- Bassetti CL. Spectrum of narcolepsy. In: Baumann CR, Bassetti CL, Scammell TE, eds. Narcolepsy: Pathophysiology, Diagnosis, and Treatment. New York, NY: Springer Science+Business Media; 2011:309-319.
- Sturzenegger C, Bassetti CL. The clinical spectrum of narcolepsy with cataplexy: a reappraisal. J Sleep Res. 2004;13(4):395-406.
Talk to your doctor about XYREM
The tests above can help screen for excessive daytime sleepiness (EDS) in narcolepsy and for narcolepsy with cataplexy, but proper diagnosis requires a complete exam from a healthcare provider. To help him or her make an accurate diagnosis, be open and honest about all of the symptoms you may be experiencing and be sure to share your scores from the tests above.
Use the Doctor Discussion Guide at your visit to help you and your doctor determine if XYREM is right for you. It provides some important questions and considerations to discuss with your healthcare provider.