“The exhaustion is just indescribable.”– Scott
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What Is Excessive Daytime Sleepiness in Narcolepsy?
All people living with narcolepsy have excessive daytime sleepiness (EDS).
People living with narcolepsy feel a constant and often uncontrollable desire to sleep throughout the day, resulting in a constant and uncontrollable need for sleep or unintentionally falling asleep.
Though excessive daytime sleepiness is experienced by people of all ages living with narcolepsy, it may look different for children than it does for adolescents and adults. Children living with narcolepsy may take long naps (up to 2 or 3 hours) that don't make them feel refreshed, while adolescents may take less frequent and shorter naps, similar to adults. Children may also respond to their feeling of sleepiness with hyperactivity, irritability, or impulsiveness.
Excessive daytime sleepiness is more than just falling asleep.
What Does Excessive Daytime Sleepiness With Narcolepsy Feel Like?
Emily, Scott, Sharon, & Sean
Four Personal Stories: Four people living with narcolepsy share their experience of what excessive daytime sleepiness feels like for them.
Recognizing Narcolepsy and Excessive Daytime Sleepiness
Matt
In college, Matt recognized that he was always the first one to leave the party, but he didn’t know it was because of excessive daytime sleepiness associated with narcolepsy.
Everyone else would be going out... I would be in bed by 10 o'clock... I just assumed it was me.
Matt, living with narcolepsy
What Does Excessive Daytime Sleepiness With Narcolepsy Feel Like?
Recognizing Narcolepsy and Excessive Daytime Sleepiness
What Does Excessive Daytime Sleepiness With Narcolepsy Feel Like?
Emily, Scott, Sharon, & Sean
Living with narcolepsyFour Personal Stories: Four people living with narcolepsy share their experience of what excessive daytime sleepiness feels like for them.
Recognizing Narcolepsy and Excessive Daytime Sleepiness
Matt
Living with narcolepsyIn college, Matt recognized that he was always the first one to leave the party, but he didn’t know it was because of excessive daytime sleepiness associated with narcolepsy.
Everyone else would be going out... I would be in bed by 10 o'clock... I just assumed it was me.
Matt, living with narcolepsy
How much is narcolepsy interfering with your daily activities or enjoyment of life?
Take this assessment a few times each year before visiting with your healthcare provider. Print or email your results and share them with your healthcare team to help you have informed discussions about your treatment plan.
Your
Narcolepsy Symptoms
Vivid dream-like experiences that occur while falling asleep or while waking up.
Occurs at night and includes dreams; muscles are not active to prevent people from acting out dreams.
People with narcolepsy type 1 can be diagnosed by their cataplexy or low levels of orexin (also known as hypocretin).
The cause of narcolepsy type 2 is unknown.
Restorative sleep state with decreased muscle tone.
Daytime and evening habits to improve sleep.
Brief total loss of voluntary muscle control when falling asleep or while waking up.
Also known as hypocretin, orexin is a naturally occurring chemical in the brain that helps maintain wakefulness and prevent non-REM sleep and REM sleep from occurring at the wrong time.
Unintentionally falling asleep due to excessive daytime sleepiness; “sleep attacks.”
The inability to stay awake and alert during the day; a constant need for sleep or unintentionally falling asleep.
A naturally occurring chemical in the brain that helps maintain wakefulness.
Vivid dream-like experiences that occur while falling asleep or while waking up.
Frequent shifts between different states of sleep and wakefulness at night.
Difficulty focusing or concentrating.
Brief loss of muscle tone with retained awareness, often triggered by strong emotions.
Performance of routine tasks without awareness or memory.