Narcolepsy

Narcolepsy is a sleep disorder that can cause a person to feel an uncontrollable urge to sleep. A person with narcolepsy may fall asleep anywhere, often without warning. These sleep attacks are uncontrollable and usually last a few seconds to several minutes. A person with narcolepsy may also have frequent sleep disruptions, contributing to tiredness throughout the day.

Identified as a leading neurological cause of chronic sleepiness, narcolepsy affects around 1 in 2,000 people. Some experts believe that more people are affected because the condition often goes undiagnosed. Narcolepsy is a lifelong condition and, if left untreated, can significantly affect a person’s quality of life.

Learning about narcolepsy can help people understand this sleep disorder and better manage their symptoms with lifestyle changes, support, and medication.

Symptoms of Narcolepsy

Symptoms of narcolepsy can begin at any time in a person’s life but most often develop in a person’s teens or early adulthood. Everyone with narcolepsy experiences an irrepressible need to sleep. Up to 25% of people with narcolepsy experience other symptoms, including cataplexy, hallucinations, sleep paralysis, insomnia, and automatic behaviors.

Excessive Daytime Sleepiness

Excessive daytime sleepiness is the primary symptom of narcolepsy. People with narcolepsy often begin experiencing excessive tiredness in their 20s or 30s with symptoms often getting worse over time.

The timing and severity of excessive daytime sleepiness varies. Some people experience a mild drowsiness that comes and goes throughout the day, while others have sudden and uncontrollable sleep attacks in which they cannot resist the urge to sleep.

When they occur, sleep attacks can last from a few seconds to several hours. After waking, a person with narcolepsy may feel rested and refreshed for a short time.

Excessive daytime sleepiness most often occurs during monotonous tasks like reading or watching television but can also occur at potentially dangerous times like when driving a vehicle.

Cataplexy

Cataplexy is the experience of sudden muscle weakness that temporarily causes a person to be unable to move or control their muscles. Episodes of cataplexy can last from several seconds to a few minutes and are triggered by intense emotions like excitement, laughter, anger, or grief.

Around 60% of people diagnosed with narcolepsy will experience cataplexy, and episodes typically begin within three to five years after the onset of excessive daytime sleepiness. A person may only have a few episodes during their lifetime, or they may have several episodes every day.

Cataplexy typically begins in the face with drooping eyelids and an open or slack mouth. In more severe episodes, other areas of the body are involved, which can cause a person to collapse. While a person is briefly unable to move or speak during an episode of cataplexy, they remain fully conscious.

Although cataplexy can be a frightening symptom of narcolepsy, episodes resolve on their own and are not dangerous as long as the person is able to collapse in a safe place.

Hallucinations

About 30% of people with narcolepsy experience hallucinations as they are falling asleep or as they are waking up. Researchers believe that these hallucinations are a result of vivid dreams that occur abnormally during the time when a person transitions between wakefulness and sleep.

Hallucinations are normally vivid and frightening. Common hallucinations include seeing or hearing a person nearby, feeling pressure on the chest, or having an out-of-body experience. Hallucinations are usually visual but can also involve other senses.

Sleep Paralysis

Sleep paralysis is a temporary inability to move or speak that occurs when waking up or falling asleep. About 20% of all people experience at least one episode of sleep paralysis during their lives, and sleep paralysis occurs in an even higher percentage of people with narcolepsy.

Paralysis is usually brief, lasting just a few seconds or minutes. During this time, a person is fully aware of their surroundings and is able to hear but cannot open their eyes, speak, or move their limbs. Sleep paralysis can be especially frightening when it occurs at the same time as hallucinations.

Most people regain control of their body after a few minutes, and sleep paralysis can sometimes be resolved by the touch of another person. The loss of muscle control during sleep paralysis is similar to cataplexy, but these symptoms are distinguished by whether they occur when transitioning between sleep and wakefulness or when experiencing an intense emotion.

Insomnia

Insomnia is a sleep disorder in which a person has difficulties falling asleep or staying asleep through the night. People with narcolepsy often find it easy to fall asleep but wake up several times during the night and have trouble going back to bed. According to one study, around 28% of people with narcolepsy experience insomnia.

Nighttime sleep may also be disrupted by other sleep disorders that are more common in people with narcolepsy, including sleep apnea, restless legs syndrome, and sleepwalking. Additionally, insomnia can be a side effect of several medications used to treat the symptoms of narcolepsy.

Automatic Behaviors

A person with narcolepsy may fall asleep while performing an activity and unconsciously continue that activity with no memory afterward. Automatic behaviors occur most often during routine tasks like driving, typing, or writing. These episodes are typically very brief, lasting only a few seconds or minutes at a time.

During an automatic behavior, a person’s handwriting may briefly become illegible, they may place an item in a strange location, or they may interrupt a conversation with an unrelated topic. Automatic behaviors can be dangerous when they occur while a person is driving or operating machinery.

Narcolepsy Symptoms in Children

Although narcolepsy is most often diagnosed in adults, around 30% of people begin experiencing symptoms before the age of 15. Experts believe that narcolepsy is often overlooked in children and adolescents because the symptoms differ from those seen in adults and may be misdiagnosed as another condition, like seizures, aggression, or attention deficit hyperactivity disorder (ADHD).

Excessive daytime sleepiness is the primary symptom of narcolepsy in children and often the first to occur. Children may feel excessively tired at school, while reading, or when riding in a car. Another sign of excessive daytime sleepiness is not growing out of taking regular naps by around five or six years old.

Other symptoms of narcolepsy in children include irritability, difficulty with concentration, or impaired memory. Children with narcolepsy are also more likely to begin puberty at an earlier age and experience rapid weight gain. They may have episodes that can include general weakness, tremors, or facial expressions like grimacing or sticking out their tongue.

Types of Narcolepsy

There are two types of narcolepsy: type 1 and type 2. While both types involve excessive daytime sleepiness, the types differ in their cause, symptoms, and how often they occur.

Type 1

Narcolepsy type 1 is caused by a loss of neurons in the brain that produce a hormone that makes people feel awake and regulates REM sleep. Cataplexy is the characteristic symptom of narcolepsy type 1, which was previously called “narcolepsy with cataplexy.” While not everyone with narcolepsy type 1 initially experiences cataplexy, many develop this symptom over time.

Narcolepsy type 1 is the more common of the two types of narcolepsy, affecting around 25 to 50 out of every 100,000 people.

Type 2

The cause of narcolepsy type 2 is unknown. People with this condition often have normal levels of the wakefulness-promoting hormone that is affected in people with narcolepsy type 1. People with narcolepsy type 2 also do not experience cataplexy. Excessive daytime sleepiness and other symptoms of narcolepsy may be present but are often less severe than in people with narcolepsy type 1. This type of narcolepsy is difficult to diagnose because symptoms are similar to other sleep disorders.

Narcolepsy type 2 is less common and is believed to affect around 20 to 34 out of every 100,000 people.

Narcolepsy Causes

Researchers are still learning about why some people develop narcolepsy, but many believe that it’s a combination of several factors.

In people with narcolepsy type 1, symptoms are caused by a loss of brain cells that produce hypocretins. Hypocretins have several roles in the body, including helping people stay awake and regulating REM sleep. Without enough hypocretins, people may begin to experience aspects of REM sleep while awake. A loss of the cells that produce hypocretins may be related to several factors.

  • Heredity: Nearly 10% of people with narcolepsy type 1 have a close relative with narcolepsy, and people with this condition usually have certain genes in common. However, researchers do not believe that this condition is purely genetic. Genetics appear to put a person at risk of narcolepsy, while other factors may trigger the disease.
  • Autoimmune disorders: Many researchers believe that narcolepsy is an autoimmune disorder. Autoimmune disorders occur when the immune system attacks otherwise healthy cells in the body. Although it’s not clear what causes a person’s immune system to attack cells that produce hypocretins, there are likely both genetic and environmental influences.
  • Brain injury: In rare cases, narcolepsy is caused by an injury, tumor, stroke, or other disease that affects the parts of the brain that regulate REM sleep.

Researchers do not know what causes narcolepsy type 2. Potential causes include a less severe loss of hypocretins or other factors that interfere with the body’s ability to regulate sleep and wakefulness.

Diagnosing Narcolepsy

To diagnose narcolepsy, doctors begin by collecting information about a person’s medical history and conducting a physical exam. A medical history looks for symptoms like cataplexy, hallucinations, or sleep paralysis. Physical and neurological exams are used to rule out other causes of a person’s symptoms. People may be asked to start a sleep journal, which tracks a person’s sleep schedule and symptoms over one or two weeks.

If narcolepsy is suspected based on these initial tests, a doctor will recommend a sleep study. A sleep study is conducted in a specialized sleep clinic and can make sure a person doesn’t have another sleep disorder that explains their symptoms. There are a couple tests that may be conducted during a sleep study.

  • Polysomnography: This painless test uses electrodes and other sensors to collect information about activity in the body while a person is sleeping. The data collected can show how quickly a person enters REM sleep and whether they have signs of other sleep disorders.
  • Multiple sleep latency test: A multiple sleep latency test is conducted over the course of a day, usually starting on the morning following polysomnography. Sensors are applied and the person is given instructions on how to take five 15-minute naps every two hours. Information about how quickly a person falls asleep and enters REM sleep can distinguish narcolepsy from other causes of excessive daytime sleepiness.

Doctors may also measure the level of hypocretins in the body. To measure hypocretins, doctors perform a lumbar puncture to collect a sample of fluid from around the spine. Low levels of hypocretins are found in most patients with narcolepsy type 1.

It is common for people with symptoms of narcolepsy to go undiagnosed for 10 to 15 years. Symptoms develop gradually over several years and people may be misdiagnosed with other health conditions that cause daytime sleepiness like depression and other sleep disorders. Diagnosing narcolepsy in children can be especially challenging because younger people often have different symptoms than adults.

Treatment for Narcolepsy

Treatment for narcolepsy focuses on managing symptoms that impact a person’s daily life and may significantly affect their work, school, and relationships. Though there is no cure for narcolepsy, a combination of lifestyle changes and medications can reduce the frequency and severity of symptoms for most people.

Napping and Sleep Hygiene

Daytime naps are one of the most important lifestyle changes a person can make to manage the symptoms of narcolepsy. Though some people only feel better after a long nap, many people with narcolepsy benefit from a couple of 20-minute naps during the day. Accomodations at work or school may be helpful to make it easier to take an afternoon nap, which can increase alertness for several hours afterwards.

Sleep hygiene involves creating healthy habits that promote quality sleep. Taking steps to improve sleep hygiene can help people with narcolepsy enhance nighttime sleep and feel less tired during the day.

  • Stick to a sleep schedule: People sleep better when they go to sleep and wake up at the same time every day, including on weekends and vacations.
  • Find a relaxing routine: Many people with narcolepsy find it helpful to establish a daily routine to wind down before bed. Helpful activities before bed include taking a warm bath or reading a book.
  • Get regular exercise: Exercising for 20 minutes or more each day offers a variety of benefits for people with narcolepsy, from helping maintain a healthy weight to improving sleep quality.
  • Avoid heavy meals and substances: People with narcolepsy should stay away from large meals for a few hours before getting into bed. It can also help to be careful with alcohol, caffeine, and tobacco because all three can interfere with sleep.

Accident Prevention and Safe Driving

People with untreated narcolepsy are at an increased risk of car accidents. Because drowsiness can occur at any time, it is important to take precautions when driving or operating machinery. Most people being treated for narcolepsy can safely drive as long as they take appropriate safety measures.

A person’s doctor can help them decide whether driving is safe and identify the right precautions.

  • Limiting distance: While short drives around town may be safe for many people with narcolepsy, longer highway drives or those with traffic may be less safe. A doctor can help determine how long a person can safely drive before needing to pull over for a nap.
  • Timing drives: People with narcolepsy may find it helpful to limit driving to times when they feel most alert, like during the daytime, after napping, or once a medication has taken effect.
  • Taking turns: For longer trips, it may be helpful to share driving responsibilities with another person. Taking turns allows people with narcolepsy to drive only when they feel alert.

Medications

While some people can manage mild symptoms of narcolepsy with lifestyle changes alone, many benefit from using medications. The goal of using medications to treat narcolepsy is to lessen daytime sleepiness, improve alertness, and reduce the frequency of cataplexy.

Several types of medicines, including certain stimulants and antidepressants, may be prescribed. Doctors select medications based on a person’s symptoms, age, and any coexisting health issues. Finding the right medication also depends on finding a balance between a medication’s benefits and its side effects.

Living With Narcolepsy

Living with narcolepsy can be challenging because of the condition’s effects on a person’s daily life. While medications and lifestyle changes can help most people manage their symptoms, many people still experience some amount of daytime sleepiness.

Support groups can help people living with symptoms of narcolepsy. Groups help by building community, offering social support, and helping people exchange ideas about strategies to manage daily symptoms. It may also be helpful for people with narcolepsy to become familiar with the Americans with Disabilities Act, which requires employers to provide accommodations for people with disabilities like narcolepsy.

People with narcolepsy are at an increased risk of developing mental health issues like anxiety and depression. Reasons for this increased risk include challenges with daily life, feelings of isolation, and embarrassment about symptoms. People experiencing hopelessness, despair, or distress should speak with a health professional, counselor, or contact the Suicide Prevention Lifeline.

When to See a Doctor

Anyone struggling with staying awake during the day should talk with their doctor. Excessive daytime sleepiness can have many possible causes, and a doctor can evaluate a person’s symptoms, recommend testing, and prescribe a sleep study if necessary.

People who have already been diagnosed with narcolepsy should continue to speak with their doctor about managing their symptoms. Patients should also alert their doctor if they have symptoms that are new, worsening, or not getting better with treatment. Each person with narcolepsy is different, and it can take time to find the right combination of medication and lifestyle changes.

Narcolepsy Resources

  • Narcolepsy Network: Working to educate and inform people through their website, the Narcolepsy Network provides educational materials and newsletters about narcolepsy.
  • Wake Up Narcolepsy: Wake Up Narcolepsy is a non-profit organization dedicated to driving narcolepsy awareness, education, and research toward improved treatments and a cure.
  • Rare Connect – Narcolepsy : An online platform where patients, families, and organizations can develop communities and have conversations across continents and languages about narcolepsy and other uncommon medical conditions.
  • The NICER Foundation: The primary mission of The NICER Foundation is to assist people with narcolepsy who are experiencing a financial crisis by offering cash grants from their emergency relief fund.
  • Job Accommodation Network Sleep Disorder: The Job Accommodation Network helps people with health conditions, including sleep disorders like narcolepsy, learn about legal protections that may apply to their situation.

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Michael Breus, Ph.D - The Sleep Doctor is a Diplomate of the American Board of Sleep Medicine and a Fellow of The American Academy of Sleep Medicine and one of only 168 psychologists to pass the Sleep Medical Specialty Board without going to medical school. Dr. Breus is a sought after lecturer and his knowledge is shared daily in major national media worldwide including Today, Dr. Oz, Oprah, and for fourteen years as the sleep expert on WebMD. Dr. Breus is the bestselling author of The Power of When, The Sleep Doctor’s Diet Plan and Good Night!