Understanding NarcolepsY & Its SYmptoms
Gain a greater understanding of narcolepsy and how to recognize 2 of its key symptoms—excessive daytime sleepiness (EDS) and cataplexy.
What you might not know
Narcolepsy is a lifelong, potentially disabling condition that affects about 1 in 2000 people in the US. It’s considered both a sleep disorder and a neurologic (related to the brain or nervous system) condition. While more than 50% of people with narcolepsy say their symptoms started before 18 years old, it can take more than a decade to get a diagnosis. Narcolepsy can also often be misdiagnosed as other conditions, and patients with a pediatric onset of symptoms may have increased odds of a delayed diagnosis.
The main symptom of narcolepsy is excessive daytime sleepiness (EDS). About 70% of people with narcolepsy also have cataplexy (sudden weakening of muscles in association with emotions) during the day.
Excessive Daytime Sleepiness (EDS)
- The uncontrollable need to sleep during the day
- Sleep episodes can come on randomly and at unusual or unexpected times
- 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 take several naps a day and wake up feeling refreshed. However, this feeling may last only a short time.
- 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.
- In children, cataplexy may be most noticeable as unusual movements in the face, such as eyelids drooping, eyes closing, grimacing, mouth movements, or tongue sticking out.
- 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 cataplexy and/or EDS in narcolepsy
- Narcolepsy is underrecognized and underdiagnosed
- Can interfere with normal daily activities