About Narcolepsy

What is Narcolepsy?

Narcolepsy is a life-long, neurological sleep disorder characterized by the brain’s inability to regulate sleep-wake cycles.

Typical onset of narcolepsy occurs between the ages of ten and twenty; but can also occur in young children. It affects 1 in every 2,000 individuals who have a genetic pre-disposition that is then activated by an environmental trigger. In individuals with narcolepsy, aspects of rapid eye movement (REM) sleep intrude on wakefulness, while wakefulness intrudes on their sleep. Individuals with narcolepsy may quickly enter into REM sleep without first experiencing non-rapid eye movement (NREM) sleep, both at night and during the day. Some of the characteristics of narcolepsy — such as cataplexy, sleep paralysis and hallucinations — are similar to changes that occur in REM sleep, but instead, they occur during wakefulness or drowsiness. There are two main types of narcolepsy: narcolepsy with cataplexy (Type 1) and narcolepsy without cataplexy (Type 2). Symptoms vary from individual to individual, with some cases being more severe than others.

Symptoms

Symptoms of narcolepsy can include excessive daytime sleepiness (EDS), sleep disruption, cataplexy, sleep paralysis and hypnagogic/hypnopompic hallucinations.

Excessive Daytime Sleepiness (EDS)

The inability to stay awake and alert during the day. Even with sleep, an individual with narcolepsy can feel as though he or she has been awake for 72 hours straight. Sometimes, individuals with narcolepsy can have instances of automatic behavior, in which they continue an activity with little conscious awareness of the activity occurring. EDS is one of the first symptoms to develop in individuals with narcolepsy.

Sleep Disruption

The breaking up of sleep by frequent awakenings, also known as fragmented sleep. Individuals with narcolepsy often transition quickly to REM sleep but then wake often, causing many more transitions from deep sleep into light sleep or wake.

Cataplexy

A sudden and uncontrollable, brief loss of muscle tone caused by experiencing strong or intense emotions. Cataplexy only occurs in Type 1 narcolepsy. Cataplexy can vary from partial cataplexy, which may involve the slurring of speech to full cataplexy where an individual may experience weakness of the face, limbs, and trunk, which causes them to slump to the ground, awake but unable to talk or move.

Sleep Paralysis

A brief inability to move or speak while falling asleep or upon waking up. This is most likely, caused by an intrusion into wakefulness of the normal paralysis that occurs during REM sleep.

Hallucinations

Individuals with narcolepsy may experience vivid dream-like experiences while falling asleep or upon waking up. Hallucinations when falling asleep are known as hypnagogic; when waking up, hypnopompic. These hallucinations can be experienced as multisensory and can feel extremely real. People with narcolepsy often transition directly from wake into REM sleep, which may underlie this experience.

Impact

The symptoms of narcolepsy may impact many areas of a patients’ life. Due to narcolepsy being poorly understood and largely invisible, many people experience feelings of isolation, loss of self-confidence, depression and anxiety.

Memory loss, poor concentration and automatic behaviors can lead to psycho-social impairments and affect relationships, academic performance, professional success and leisure activities. Driving may be particularly challenging for patients who experience severe excessive daytime sleepiness. Additionally, the diagnosis of narcolepsy may affect education and career choice, as not all activities and routines fit into the type of schedule an individual with narcolepsy may require.

Children and adolescents with narcolepsy may struggle with emotional regulation and display aggressive behaviors that lead to social exclusion and feelings of self-loathing and shame. Additionally, relationships within the family unit may be strained, as the child with narcolepsy requires additional assistance with everyday tasks and nighttime supervision. Parents often find themselves requiring additional support with siblings and respite care.

Schooling is particularly challenging for children with narcolepsy (CWN). Research shows that EDS is associated with poorer academic functioning, school failure, school absenteeism, tardiness, conduct problems and increased risk-taking behavior and impulsivity. CWN often require school accommodations to be successful.

Please see our Narcolepsy and the K-12 Education System Brochure under the Resource Section and join our Online Support Groups.

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