July 16, 2021
Narcolepsy is a relatively rare and fairly mysterious neurological disorder that causes quick and unexplainable bouts of drowsiness and sleep. A condition that affects both genders and all age groups, between 135,000 to 200,000 individuals in the United States are thought to suffer from narcolepsy.
Untreated narcolepsy can impact nearly every aspect of an individual’s life: academic, work, social, psychological, and even cognitively. Unfortunately, it’s not uncommon for narcolepsy to be misdiagnosed as a psychiatric disorder, resulting in a sufferer receiving inadequate and misplaced care. This can lead to serious declines in a person’s mental and physical health, as they may feel ostracised from social life due to their disorder and not being properly supported or treated.
Raising awareness of narcolepsy will help combat the number of misdiagnoses that take place and will enhance our understanding of the disorder.
What is Narcolepsy?
Narcolepsy impacts the brain’s ability to control a person’s sleep-wake cycle, causing a person with narcolepsy to enter into the REM (rapid eye movement) stage of sleep much quicker (within 15 minutes) than what is considered normal (60-90 minutes).
This results in the main symptom of narcolepsy: EDS (excessive daytime sleepiness). No matter how much sleep a person with narcolepsy receives, they will be persistently sleepy throughout the day. Many describe this overwhelming feeling of sleepiness as a “sleep attack,” as it comes on quickly.
Another main, and unique, symptom of narcolepsy is cataplexy, or the sudden loss of muscle tone (contraction of the muscles and their resistance to passive states) while a person is awake. Cataplexy is triggered by certain behaviors, such as laughter, fear, anger, stress, or excitement. When this happens, a person can experience a range of cataplexy severity, with mild cataplexy causing the eyelids to droop and severe cataplexy causing a person to completely collapse. While fully conscious, they are unable to move, speak, or keep their eyes open. This sudden loss of muscle tone is similar to what naturally happens during REM sleep.
While scary for both the narcoleptic and the people around them, cataplexy is not dangerous unless a person is, for example, driving. Cataplexy episodes last only a few minutes and the person will fully recover once coming out of the episode’s state. Generally, cataplexy is a symptom that comes after EDS—and not all narcoleptics experience cataplexy the same. Some only have a few episodes in their lifetime, while others can have multiple attacks in one day.
Other symptoms of narcolepsy include …
- Automatic behaviors: when a person with narcolepsy falls asleep during an activity yet continues the activity without consciously being aware of what they’re doing. These incidents are brief and last no longer than a few seconds, but can be very confusing and have resulted in car accidents. Particularly intriguing is that when people wake back up, they feel suddenly refreshed and awake.
- Sleep paralysis aka the temporary inability to move or speak while falling asleep or waking up. Like with cataplexy, the individual experiencing sleep paralysis is fully conscious but is unable to move. Sleep paralysis is also not damaging to a person’s overall functioning.
- Hallucinations when a person is falling asleep or waking up.
- Poor sleep quality
- Restless leg movements
The Two Types
There are two types of narcolepsy: NT1 (narcolepsy type 1) and NT2 (narcolepsy type 2).
NT1 is associated with cataplexy. Even if cataplexy isn’t present at diagnosis, individuals who suffer from NT1 are at an increased risk of experiencing cataplexy. Why? Because they have low levels of a particular chemical called hypocretin-1, a chemical that helps regulate wakefulness. It’s been found that people with NT1 have a loss of 90% or more of the normal number of hypocretin-making neurons.
Unlike those with NT1, individuals with NT2 don’t suffer from low levels of hypocretin-1, so they are at a lower risk of experiencing cataplexy. If they do begin to experience it later in life, their diagnosis can be reclassified as NT1.
NT1 is two to three times more common than NT2, although some theorize that NT2 is a precursor to NT1. It’s also important to note that while research is still being done to determine what causes narcolepsy, NT2 has been connected to head trauma and diseases that affect the brain.
At this time, there is no cure for narcolepsy. Instead, a doctor will be focused on managing the condition and its symptoms to ensure safety, the ability to function in day-to-day life, and will be working to enhance the overall quality of one’s life. While those with NT2 generally only need to participate in disorder monitoring and behavioral changes, NT1 can involve treatment with medication.
A few immediate changes can be made to one’s day-to-day, including …
- Taking short, scheduled naps
- Avoid caffeine or alcohol before bed
- Avoid smoking, especially at night
- Exercise daily
If you believe that you may be suffering from narcolepsy, we can help. Dr. Dibra here at Sleep Dallas is a board-certified sleep medicine specialist who specializes in treating and managing sleep disorders—including narcolepsy. Schedule your consultation today.