Most people have heard of narcolepsy and associate it with the classic sign of sleep attacks, or falling asleep at random. However, this complex neurological condition can affect your health in many ways, and researchers still don’t fully understand the cause. However, with the right treatment, most people are able to manage their symptoms and live an almost normal life.
In this article, we’ll break down what narcolepsy is, how it affects the people who have it, and how it can be managed.
What Is Narcolepsy?
Narcolepsy is a chronic sleep disorder that affects brain function. People who suffer from this condition are unable to regulate their sleep-wake cycles. As a result, they may experience many sleep disturbances, some of which can be severe.
The most telltale sign of narcolepsy is excessive daytime sleepiness. This can cause people with narcolepsy to fall asleep suddenly and without warning, even if they are in the middle of an activity. Narcoleptics have fallen asleep in the middle of work, school, and even while driving. Because of this, the disorder can have significant effects on daily life and can make it very difficult to function normally.1
Causes of Narcolepsy
Researchers still don’t fully understand narcolepsy causes. The current theory is that the disorder is caused by several factors, which together may affect the brain’s ability to produce hypocretin. Hypocretin is a chemical that the body uses to regulate sleep — especially REM sleep — and wakefulness.2
However, this chemical alone doesn’t explain narcolepsy. People who have type 1 narcolepsy usually have lower-than-average levels of hypocretin. However, people with type 2 narcolepsy generally have normal levels of the brain chemical, meaning that hypocretin isn’t solely responsible for the disorder.
There are a few other factors that may increase your risk of developing narcolepsy.3 These include:
- Genetic factors— Narcolepsy is not usually a genetic problem; most cases have no family history of the disorder. People who have a family history of narcolepsy have a 1 to 2 percent chance of developing the disorder.
- Autoimmune disorders— Certain autoimmune disorders can affect the parts of the brain that produce hypocretin, leading to lower chemical production. When this happens, it is possible to develop narcolepsy even in adulthood, though this is less common. Autoimmune disorders have many causes and symptoms, but generally attack healthy cells in the body (such as brain cells).
- Flu virus — Researchers have found a connection between infection with the flu virus, as well as infections with bacteria like Streptococcus, and narcolepsy. There also may be a link between narcolepsy and a certain form of the H1N1 flu (swine flu) vaccine.
- Brain trauma— Narcolepsy is almost always diagnosed in childhood or adolescence. In certain rare cases, it can develop in later life due to brain trauma. If an injury affects the part of the brain that is responsible for regulating hypocretin levels, a person may develop hallmark signs of narcolepsy, such as excessive daytime sleepiness and sleep attacks.4
How Common Is Narcolepsy?
Narcolepsy is quite rare. About 1 in 2,000 people have been diagnosed with the disorder. However, there is some speculation that it might be slightly more common than we realize, since it can be misdiagnosed as other sleep disorders or even psychological problems.
Symptoms of Narcolepsy
One of the most common symptoms of narcolepsy is excessive daytime sleepiness. This affects everyone who has the disorder, even if their other symptoms vary.
Most people who have narcolepsy only experience the main symptom of excessive daytime sleepiness. Between 10 and 25 percent of people will have other symptoms.
Other common signs of narcolepsy may include:
- Cataplexy (abrupt loss of muscle tone, either in the face or the whole body)5
- Disordered REM sleep
- Sleep paralysis
- Automatic behaviors (continuing to perform the activity they were doing when they fell asleep, such as eating, walking, etc.)
- Hallucinations (usually just before falling asleep or right after waking up)
- Insomnia (inability to fall asleep or stay asleep) or broken sleep at night
- Sleep apnea (breathing stops and repeatedly restarts while sleeping)
- Restless legs syndrome (strong urge to move the legs along with unpleasant sensations like tingling or itching)6
Narcolepsy and Sleep Attacks
Sleep attacks are one of the telltale signs of narcolepsy. During sleep attacks, a person may fall asleep without intending to. This can happen even if they are in the middle of an activity. Strong emotions such as anger, excitement, and fear, or laughing excessively, can trigger sleep attacks.
When a person experiences a sleep attack, they may lose muscle control or develop rapid eye movement. During a sleep attack, narcoleptics often enter REM sleep very quickly. Most people need about 90 minutes to enter REM sleep, but during a sleep attack, this stage happens much faster (often within 15 minutes).7
That means that the person experiencing the attack isn’t just asleep — they are deeply asleep and most likely dreaming. These dreams may be intense and vivid. Some people have nightmares.
For this reason, it is not a good idea to try to wake a narcoleptic during a sleep attack. Because they are deep in REM sleep and may be dreaming, they sometimes are frightened or violent when woken.
Types of Narcolepsy
There are two types of narcolepsy, categorized as type 1 and type 2. Until recently, these were categorized as narcolepsy with cataplexy and narcolepsy without cataplexy.
Narcolepsy Type 1
Narcolepsy type 1, formerly narcolepsy with cataplexy, is the more common form of the disorder. An individual with type 1 usually has lower-than-average levels of hypocretin in their brain.8 They also may experience cataplexy, wherein they suddenly lose some or all of their muscle tone.
Cataplexy may be partial (just affecting the facial muscles, especially the eyelids) or total. In total cataplexy, a person may collapse and be unable to move for a few seconds to a few minutes. While these attacks are temporary and non-life-threatening, they can be very alarming for both the person experiencing them and others around them.
During cataplexy attacks, the person often remains conscious but cannot move or control the affected parts of their body. In some people, they are the first sign of narcolepsy, even appearing before chronic fatigue. When this happens, narcolepsy may be misdiagnosed as a seizure disorder. Cataplexy attacks can resemble seizures in young children.
When cataplexy happens, it usually lasts between 30 seconds and 2 minutes. Some people might experience these attacks multiple times a day, while others may only have them sporadically — or even just a couple of times in their life.
People who have narcolepsy type 1 might also have symptoms such as:
- Hallucinations while falling asleep or waking up (may be visual, auditory, or something else)
- Insomnia or sleep disturbances
- Sleep paralysis9
Narcolepsy Type 2
Narcolepsy type 2 was formerly called narcolepsy without cataplexy. This is the less common form of the disorder. As the name implies, individuals who have type 2 do not experience cataplexy attacks, or temporary loss of muscle control. However, like all those who suffer from narcolepsy, they suffer from excessive daytime sleepiness and may struggle to stay awake during the day or fall asleep at night.
Type 2 also tends to be a milder form of the disorder and may not be as severe as type 1. Scientists are less clear on what causes this form of narcolepsy, as individuals with type 2 usually have normal levels of hypocretin in their brains.10
Other symptoms of narcolepsy type 2 may include:
- Insomnia and other sleep disturbances
- Sleep paralysis
- Hallucinations while falling asleep or waking up
Complications of Narcolepsy
Narcolepsy isn’t dangerous on its own, but it can cause dangerous situations. Falling asleep suddenly can cause people to injure themselves, especially if they are driving.
Many people who have narcolepsy find it difficult to hold down a job. Children with the disorder often struggle in school, especially since they may fall asleep in the middle of the school day and be unable to wake up. Being excessively fatigued can also make it difficult to focus on lessons, causing students to fall behind.
Severe sleep disorders can also lead to emotional and psychological problems. Feeling constantly fatigued and struggling to function normally can cause feelings of isolation and depression.
Narcolepsy symptoms in adults may include obstructive sleep apnea.11 This may go hand-in-hand with another complication, which is weight gain. Many adults with narcolepsy are overweight, though scientists aren’t quite sure why. One theory is that chronic sleep disorders can slow your metabolism, making weight loss more difficult. Obesity and sleep apnea can lead to heart problems over time.
How Narcolepsy Is Diagnosed
Getting a narcolepsy diagnosis can be a long and difficult process, sometimes even taking years. This is because many of the symptoms are similar to those associated with psychological disorders, sleep issues, or even seizure disorders.
Most people with narcolepsy are diagnosed between the ages of 7 and 25 years old, but signs of narcolepsy can develop at any age. The first symptoms usually include excessive daytime sleepiness and sleep issues such as insomnia and night terrors. Testing for narcolepsy usually begins by keeping a sleep journal and doing several sleep studies in an overnight facility, the most essential of which are:12
- A polysomnogram (PSG)is a test that measures your sleep regulation overnight. Electrodes are placed on your scalp to measure your brain waves, heart rate, and breathing. With this test, medical professionals can assess how quickly you fall asleep, how fast you enter REM sleep, and other behaviors throughout the night, such as sleep disruptions and sleep apnea.
- A multiple sleep latency test (MSLT)observes a person falling asleep four to five times in one day during a series of short naps. This helps assess how quickly they fall asleep.
Treatments for Narcolepsy
Narcolepsy is a lifelong condition, so there is no cure. However, there are both medications and therapies that may help reduce the symptoms of narcolepsy, helping the person to lead a more normal life.
There are many medications that help people with narcolepsy regulate their sleep/wake cycles. Some of these may also provide hypocretin supplementation. Finding the right medication management plan may involve some trial and error as you and your doctor learn which medications work best for you.
Some doctors also prescribe antidepressants, which can improve sleep windows.
Similarly, most narcoleptics also manage their symptoms with lifestyle changes.13 This may involve, among other things:
- A strict wake and sleep schedule
- A dedicated bedtime routine
- Recording triggers and avoiding them when possible
- Taking intentional naps when tired to avoid sleep attacks
- Diet changes and avoiding alcohol, nicotine, and caffeine
- Staying active
Clinical Trials for Narcolepsy Treatments
In addition to existing medications and therapies to treat narcolepsy, researchers continue to seek more information and better treatment options through clinical trials. A clinical trial or study is a carefully conducted research study into the effectiveness and safety of new and existing medical treatments. These studies take place in hospitals, doctor’s offices, universities, and community clinics around the country and are very closely monitored to prioritize patient safety.
Participation in a narcolepsy clinical study may mean finding a better treatment option than what is currently available. Additionally, joining a clinical trial is a great opportunity to be seen by some of the best doctors in their field at no cost to participants, as well as helping to advance medicine for all those who suffer from narcolepsy. TrialSearch can help match you with a trial near you.