What Is Narcolepsy?
Narcolepsy (NAR-ko-lep-see) is a disorder that causes a person to have difficulty staying awake. In extre me cases, narcolepsy can cause a person to suddenly fall asleep during the day. These “sleep attacks” occur even after getting enough sleep at night. The unusual sleep pattern that people with narcolepsy have can affect school, work, and social life.

There are two main types of sleep:

1) Non-Rapid Eye Movement (NREM) sleep

2) Rapid Eye Movement (REM) sleep

• During REM sleep, your eyes move rapidly even though your eyelids stay shut. Dreaming mainly happens during REM sleep, when your body becomes limp and you are unable to move your muscles. This temporary inability to move prevents you from acting out any dreams that you may be having.
• Normally, when people fall asleep they first have NREM sleep, for the first 60-90 minutes. Then they go through a period of REM sleep.

People with narcolepsy have a different sleep pattern. They often fall into REM sleep before NREM sleep. In addition, the fine line between being asleep and being awake can be blurred. Narcoleptics often find that certain aspects of REM sleep can happen while they are awake or during transitions to sleep/wakefulness. This causes them to:

• Suddenly lose muscle tone and muscle control when awake (cataplexy); this can appear to be muscle weakness and sometimes can trigger the body to collapse
• Not be able to move or speak while waking up (sleep paralysis)
• Have vivid dreams while falling asleep or waking up (hallucinations)
  

What are the Effects of Narcolepsy?

People with narcolepsy often fall asleep without warning at inappropriate times. Sleep attacks don’t just happen during quiet times but, can occur during driving, eating, or other activities and can cause:

• Accidents and injuries
• Problems at work or at school
• Social problems
• Impaired memory, thinking, or ability to concentrate
• Depression

What is the Outlook?                                                                    

There is no cure yet for narcolepsy. This lifelong condition can be disabling if left untreated. Fortunately, medicines and lifestyle changes can improve the symptoms of narcolepsy so that it is easier to live with.

What Causes Narcolepsy?

While the cause of narcolepsy is not clearly known, recent research suggests that in many cases, there is a link between narcolepsy symptoms and a lack of the chemical in the brain called hypocretin. This chemical stimulates brain cells and helps promote wakefulness. It is not known why hypocretin is missing in people who have narcolepsy. One out of 10 people with narcolepsy and cataplexy has a close relative with the same symptoms. This suggests that some people may inherit the tendency to develop narcolepsy.

Who is at Risk for Narcolepsy?

Narcolepsy may affect 150,000 (1 in 2,000) people or more in the United States. Typically, it first occurs between the ages of 15 and 30 and affects both men and women. The symptoms can start suddenly or appear gradually. The condition is difficult to diagnose without medical tests.  Often people live with mild symptoms, such as daytime sleepiness and muscle weakness, for several years before narcolepsy is diagnosed. Narcolepsy can also develop later in life or in children, but it is rare before age 5.

Factors that may increase the risk of developing narcolepsy include having:

• A brother, sister, or parent with narcolepsy
• Certain thyroid disorders
• Diabetes
• A disease in which the body’s infection fighting system mistakenly attacks the body’s own organs and tissues (an autoimmune disorder)

What are the Signs and Symptoms of Narcolepsy ?

Excessive Daytime Sleepiness (EDS) 

The major symptom of narcolepsy is Excessive Daytime Sleepiness (EDS) with sleep attacks. All people with narcolepsy have EDS. This is usually the first symptom of the condition. They also may have sudden, irresistible urges to sleep during the day (sleep attacks). They usually fall asleep for just a few seconds or minutes. Rarely, they may fall asleep for as long as an hour or more.  

Muscle Weakness 

Attacks of muscle weakness and tone over parts or all of the body while awake (cataplexy) are sometimes the first symptom of narcolepsy that is noticed. Usually this symptom occurs weeks or months after people who have narcolepsy first start to experience excessive sleepiness during the day. Nearly 3 our of 4 (or 75%) of people with narcolepsy experience cataplexy.

Mild attacks of muscle weakness can cause:

• Head nodding
• Drooping eyelids
• Difficulty speaking
• Difficulty moving arms or hands or a weakened grip
• Buckling of the knees
• Severe attacks of narcolepsy may cause complete paralysis and falls.  Attacks often last less than 2 minutes, and they may only last a few seconds. During both mild and severe attacks, the person stays fully conscious. The sudden attacks of muscle weakness in narcolepsy can happen at any time.

These attacks are often triggered by strong emotions, including, but not limited to:

• Laughter
• Anger
• Fear
• Excitement

Sleep Paralysis

People with narcolepsy may suddenly not be able to move or speak while waking up. They are fully conscious during these periods of sleep paralysis. The paralysis usually lasts just a few seconds or minutes, but it can be quite scary. Sleep paralysis is similar to the paralysis that happens in rapid eye movement (REM) sleep. Not all people with narcolepsy have sleep paralysis.

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Hallucinations                                                          

Some people with narcolepsy have vivid dreams while they are falling asleep, waking up, or dozing. These hallucinations differ from normal dreams because they seem very real and include sights, sounds, smells, tastes, and touch. People with narcolepsy may say these hallucinations are scary like a nightmare. The hallucinations can occur with sleep paralysis.

Difficulty Staying Asleep

Some people with narcolepsy have difficulty staying asleep through the night. These frequent awakenings may start years after experiencing the first symptoms of narcolepsy.

Automatic Behavior

Another symptom of narcolepsy is to carry out certain actions without awareness. This is called automatic behavior. For example, if people with this symptom are writing, they may scribble rather than form words. People usually do not remember such automatic behavior.

How is Narcolepsy Diagnosed?

Doctors will base a diagnosis of narcolepsy on the patient’s symptoms, family history of narcolepsy, physical exam, and test results. Specific sleep tests may require the patient to visit a sleep disorders center for an overnight evaluation.

Do I Need a Sleep Specialist?

If your doctor suspects you have narcolepsy, he or she will likely suggest you see a Sleep Specialist who may recommend special sleep tests. Sleep tests should be done at a Sleep Disorders Center. For some sleep tests, you may need to sleep overnight at the center. Other sleep tests can be done during the day. The Sleep Specialist will confirm a diagnosis of narcolepsy, diagnose another sleep disorder, or rule out a specific sleep disorder as the cause of your symptoms, based on:

• Your symptoms
• Your sleep habits as recorded in a sleep diary
• The results of your sleep tests

What are the Sleep Tests Like?

The three tests most often used to diagnose narcolepsy are Polysomnogram (PSG), Multiple Sleep Latency Test (MSLT), and Hypocretin test.

Polysomnogram (PSG)

For this study, you sleep overnight at a sleep center. While you are sleeping, the staff at the center uses various devices to measure your brain activity, breathing, and movements. The signs of narcolepsy this test can reveal include:

• Falling asleep quickly
• Entering rapid eye movement (REM) sleep soon after falling asleep
• Waking up often during the night
• Multiple Sleep Latency Test (MSLT)

Multiple Sleep Latency Test (MSLT )

This test is usually done during the day after an overnight PSG. Also called a nap study, the MSLT measures how easy it is for you to fall asleep during the day.  You are asked to take short naps about every 2 hours. The test records eye movements, muscle tone, and brain activity with small devices attached to the head. The signs of narcolepsy this test can reveal are quickly falling asleep during the day (after a full night’s sleep) and entering REM sleep soon after falling asleep.

Hypocretin Test                                                                           

This test measures the levels of hypocretin in the fluid that bathes your spinal cord. Low levels of hypocretin make it likely that you have narcolepsy. Currently, this study is used primarily in research settings.

How is Narcolepsy Treated?

There is no cure for narcolepsy, but many of the symptoms of this disorder can be relieved with medicines and lifestyle changes. Treatment for narcolepsy is based on the type and severity of symptoms. Some medicines help relieve daytime sleepiness, while other medicines may help prevent the sudden loss of muscle tone (cataplexy) or vivid dreams while falling asleep or waking up (hallucinations) that some people with narcolepsy have. Not all medicines work for everyone. It may take weeks to months for your doctor to find the best treatment for you.

Medicines to relieve Daytime Sleepiness

Doctors may prescribe stimulants to increase daytime alertness in narcolepsy patients, including:

• Modafinil
• Methylphenidate
• Amphetamines
• Medicines to relieve other symptoms

The only currently used FDA-approved treatment for cataplexy is gamma hydroxyl butyrate (or Xyrem). This medication is taken twice nightly and is carefully regulated. Several different antidepressant medicines have also been used to treat cataplexy, hallucinations, and sleep paralysis that affects some people with narcolepsy. These medicines affect the chemicals in the brain that seem to play a role in narcolepsy. People with cataplexy need to check with their doctor to find which treatment will work best for them.

Lifestyle Changes

If you have narcolepsy, it is important to combine any drug treatments with lifestyle changes that help lessen symptoms. By taking regular naps during the day when you are feeling the sleepiest, you may need less medicine to treat daytime sleepiness. You should also try to go to sleep and wake up at the same time each day, and give yourself at least 8 hours to sleep each night.

To make it easier to fall asleep at night, you can:

• Do something relaxing before bedtime, such as taking a warm bath
• Keep your bedroom or sleep area quiet, comfortable, and free of light and distractions, such as a TV or computer
• Exercise regularly, but not within 3 hours of bedtime
• A few hours before bedtime, you should also try to avoid substances that can make it hard to fall or stay asleep

These substances include:

• Caffeine (in coffee, chocolate, and certain soft drinks and teas)
• Tobacco
• Alcohol
• Living With Narcolepsy

Narcolepsy is a lifelong condition. Although there is no cure for this condition, symptoms often improve with ongoing treatment. Most people with narcolepsy can live near-normal lives. The condition can be dangerous if sleep attacks or sudden loss of muscle tone occur while driving or using machinery. Even when these episodes occur at other times, they can cause injury or impair performance in school and on the job .

To help avoid harm, try to:

• Avoid being alone when you are likely to have a sleep attack
• Take a nap before those times during the day when an attack is likely
• Safeguard your home and workspace
• Seek help from family, friends, coworkers, and your doctor
• Take your narcolepsy medicine as recommended

Take special care when driving to help prevent crashes:

• Take medicines as prescribed
• Ask your doctor if you can drive safely
• Plan to drive when you are least likely to have a sleep attack or other narcoleptic symptoms that could be dangerous
• Take naps before driving
• Stop regularly during a long drive and exercise during the stops
• Consider driving with family, friends, or coworkers or getting rides from them

People with narcolepsy can work in almost all types of jobs.  It may be best if you have a flexible work schedule so you can take naps when needed. It also helps to have a job where you interact with your coworkers. Try to avoid jobs that require you to drive or have long commutes to work. Furthermore, night shift workers should be avoided by narcoleptics.

The Americans with Disabilities Act (ADA) protects the employment rights of people who have disabilities, including narcolepsy. The ADA requires employers to reasonably accommodate the needs of their workers with disabilities.

For workers with narcolepsy, these accommodations may include:

• Allowing short naps during the workday
• Adjusting work schedules around sleepy periods
• Alterations to the workspace or job duties

Workers must tell their employer that they have narcolepsy to get these accommodations.

The Family and Medical Leave Act also covers employers with more than 50 workers. This law allows pre-approved leave without pay to care for yourself or a family member with narcolepsy. The Social Security Disability Insurance or Supplemental Security Income programs may also help you if you cannot work due to your narcolepsy.

Where Can I Find Emotional Support ?

Sudden sleep attacks or loss of muscle tone can be embarrassing. This can make you avoid getting together with friends, schoolmates, or fellow workers, and it can cause low self-esteem. People with narcolepsy may also feel they have no control over their behavior and may become depressed.

To get emotional support for narcolepsy, you can:

• Work with your doctor to better manage your symptoms and emotional problems if you have any
• Change your lifestyle to minimize symptoms
• Learn about narcolepsy, and tell your family and friends about the condition
• Seek professional counseling for you and your family
• Get involved with patient support groups such as the Narcolepsy Network

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