What is narcolepsy?
Narcolepsy is an autoimmune neurological sleep disorder affecting 1 in 2,000 people. Over 200,000 Americans and 3 million people worldwide have narcolepsy. Sadly, narcolepsy is severely under-recognized and misdiagnosed. It is not uncommon for 10 years to pass between initial onset and proper diagnosis. It most often presents itself in childhood, adolescence, or young adulthood, and lasts a lifetime. Narcolepsy’s effect on quality of life compares to Parkinson’s disease and epilepsy. There is currently no cure.
What are the symptoms?
The four major symptoms associated with narcolepsy are:
- Excessive daytime sleepiness (EDS) – episodes of overwhelming sleepiness experienced throughout the day, comparable to how one would feel after staying awake for 48-72 hours straight.
- Cataplexy – about 60% of people with narcolepsy also experience cataplexy, the sudden episode of muscle weakness triggered by strong emotion, resulting in the inability to move while awake. The weakness may be a buckling in the knees, the head dropping, or jaw slackening. Often, emotions such as humor, elation, surprise, or anger trigger the weakness. In severe cases, an individual might fall down and become completely paralyzed for a few seconds to several minutes. Reflexes are abolished during the attack. Considered the pathological equivalent of REM/dream sleep atonia unique to narcolepsy.
- Hypnagogic and hypnopompic hallucinations – auditory, visual or tactile hallucinations, while falling asleep or waking up. These vivid dream-like experiences can be very frightening, life-like and confused as reality.
- Sleep paralysis – the inability to move upon falling asleep or waking up. The paralysis may last a few seconds to a few minutes during which time one is unable to move. A frightening symptom considered to be an abnormal episode of REM/dream sleep atonia.
Other symptoms may include:
- Most people who have narcolepsy don’t sleep well at night. They may have trouble falling and staying asleep. Vivid, scary dreams may disturb sleep. Not sleeping well at night worsens daytime sleepiness.
- Automatic Behavior – when you’re not aware of your actions, so you don’t do them well. For example, if you’re writing before falling asleep, you may scribble rather than form words. Most people who have this symptom don’t remember what happened while it was going on.
- Children who have undiagnosed narcolepsy often have trouble studying, focusing, and remembering things. Also, they may seem hyperactive. Some children who have narcolepsy speed up their activities rather than slow them down.
Is it possible to have narcolepsy without having all of the symptoms?
Yes, not everyone with narcolepsy experiences all of the symptoms nor to the same degree.
Are there different kinds of narcolepsy?
Yes, there are two forms of narcolepsy, Narcolepsy with Cataplexy (N+C) and Narcolepsy without Cataplexy (N-C).
- In N+C, an autoimmune reaction destroys the brain’s 70,000 hypocretin-producing cells. Hypocretin neurotransmitters are essential to proper regulation of sleep and wakefulness.
- The cause(s) of N-C are not well understood.
Are people born with narcolepsy?
People are not born with narcolepsy. Generally, symptoms become apparent during childhood, adolescence or early adulthood. However, children as young as three years old have been diagnosed.
Who gets narcolepsy?
Narcolepsy affects both males and females equally and appears throughout the world.
How common is narcolepsy?
Narcolepsy affectd 1 in 2,000 people – over 200,000 Americans and 3 million people worldwide. In other parts of the world, such as Japan, narcolepsy appears as frequently as 1 in every 500.
Download Narcolepsy Fast Facts. (.pdf)