Narcolepsy is a rare neurological disorder that affects a person’s ability to sleep normally. In 2023, World Narcolepsy Day will take place on September 22. It is the day of the year dedicated to raising global narcolepsy awareness.
Narcolepsy does not often show visible signs to other people, so raising awareness is an important way to support people living with the condition.
Estimates from the United Kingdom suggest that narcolepsy affects around one in 2,500 people.
Patient advocacy groups campaign for narcolepsy awareness around the world. These include nonprofit organizations such as Wake Up Narcolepsy in the United States and Narcolepsy UK.
This article explains the importance of narcolepsy awareness, including support groups. It also details the symptoms and treatment of narcolepsy, including living with and managing the condition.
Support groups can form an important part of the condition management and coping strategy for people living with narcolepsy.
The Narcolepsy Network connects people living with narcolepsy to peer-led narcolepsy support groups in each state of the U.S.
These groups give people a chance to talk about their experiences with other people who are going through the same thing. They can also learn more about their condition and enjoy being around people who also understand what it feels like to live with narcolepsy.
Narcolepsy support groups can also benefit family members and friends of people living with the condition.
Support groups include:
Narcolepsy is a condition that affects a person’s sleep, but it is actually a central nervous system disorder. This rare neurological condition stops the brain from regulating the body’s sleep-wake cycle properly. It often begins in the mid-teenage years.
A person with narcolepsy experiences disturbed sleep at night, excessive sleepiness during the day, and cataplexy. This is the term for sudden muscle weakness resulting from strong emotional responses such as laughter, anger, or surprise.
People without narcolepsy usually sleep in a regular pattern of rapid eye movement (REM) and non-REM stages. A full night’s sleep normally comprises 90-minute cycles made up of several minutes of REM with dreaming, followed by non-REM.
The first episode of REM does not usually occur for 90 minutes after sleep onset. A person can enter the REM stage very quickly, which can result in unusual dreams, including hallucinations (see below).
People with narcolepsy may have REM sleep immediately or within minutes of falling asleep and may have brief REM episodes during the night. People with the condition also tend to wake up a lot during the night. They often have disrupted sleep, and they may have difficulty falling asleep and maintaining sleep.
People with narcolepsy may experience intense and vivid dream imagery while falling asleep (hypnagogic hallucinations) and on waking up (hypnopompic hallucinations).
Excessive daytime sleepiness is the most common symptom of narcolepsy. The person may fall asleep at the wrong time and place. Brief naps can alleviate sleepiness for several hours.
Additionally, many people with narcolepsy also experience cataplexy, which means they temporarily lose muscle control, usually when experiencing strong emotions.
Sleep paralysis is a similar symptom. For a few seconds or minutes, a person experiencing sleep paralysis is unable to speak or move while falling asleep or waking.
Other possible symptoms include:
- memory problems
- doing things and not remembering afterward
Doctors have not yet found a cure for narcolepsy, but treatments can help with symptom management. However, some treatments may only work to a limited extent in some people.
Treatment options include stimulant medications such as:
- sodium oxybate
A person can take these to help them to stay awake during the day. However, one of the side effects can be difficulty sleeping at night.
Antidepressants may help with symptoms such as sudden loss of muscle control, hallucinations, and sleep paralysis. They work by altering levels of certain chemicals in the brain and limiting the amount of REM sleep.
However, antidepressants may also cause difficulty sleeping.
Researchers have not yet worked out the exact reasons why someone gets narcolepsy, but evidence suggests that a number of factors
- Autoimmunity: The loss of brain cells that produce hypocretin usually causes cataplexy, and this appears to connect to autoimmunity resulting from both genetic and environmental factors.
- Family history: 1 in 10 people who experience cataplexy as a symptom of narcolepsy has a close relative with similar symptoms.
- Brain injury: In rare cases, traumatic injury to, or tumors or diseases in, areas of the brain that regulate wakefulness and REM sleep can cause narcolepsy.
People with narcolepsy
A study from 2020 shows that having narcolepsy can impair a person’s driving ability. The researchers recommend that determining a person’s fitness to drive should involve an individual assessment that includes taking their coping strategies into account.
Narcolepsy can impact almost every aspect of a person’s daily life, including their:
- ability to drive
- emotional health
A person can take steps to manage their symptoms, helping them to lead as full a life as possible. For instance, they can set themselves up for good sleep by:
- going to bed and getting up at the same time every day, including on weekends
- making their bedroom dark, quiet, and comfortable to encourage sleep
- avoiding caffeine
- only using their bedroom for sleep and sex to help them associate the room with sleep
To control daytime sleepiness, they can:
- plan daily naps of 15–30 minutes between 2 p.m. and 4 p.m.
- eat at regular times and avoid large meals and alcohol, which can induce sleep
- avoid refined carbohydrates
- get fresh air, light exercise, and exposure to bright light
To control hallucinations and sleep paralysis, a person can try to limit stressful events.
Support from family, friends, or peer-support groups can also be important for maintaining good mental health when facing the challenges involved in living with narcolepsy.
Narcolepsy is a rare disorder of the central nervous system that can cause a range of symptoms, the most common of which relate to sleep. A person may experience disrupted nighttime sleep, excessive daytime sleepiness, cataplexy, sleep paralysis, hallucinations, and more.
Researchers do not know the exact causes, but the condition may link to autoimmunity, family history, or brain injury. Medications such as antidepressants and stimulants can provide some benefits, but they also come with side effects.
Strategies that promote good sleep habits are key to symptom management and supporting quality of life.
Patient advocacy and peer-support groups do an important job of raising awareness of a condition that may not always be noticeable to other people.