Learn more about this sleep disorder that causes periods of involuntary sleep, sleep paralysis and early rapid eye movement (REM) sleep.
Narcolepsy is a sleep disorder that makes people very drowsy during the day. People with narcolepsy find it hard to stay awake for long periods of time. They fall asleep suddenly. This can cause serious problems in their daily routine.
Sometimes narcolepsy also causes a sudden loss of muscle tone, known as cataplexy (KAT-uh-plek-see). This can be triggered by strong emotion, especially laughter. Narcolepsy is divided into two types. Most people with type 1 narcolepsy have cataplexy. Most people who don't have cataplexy have type 2 narcolepsy.
Narcolepsy is a life-long condition for which there's no cure. However, medicines and lifestyle changes can help manage the symptoms. Support from others — family, friends, employers and teachers — can help people cope with the disorder.
The symptoms of narcolepsy may get worse during the first few years of the disorder. Then they continue for life. They include:
Excessive daytime sleepiness. People with narcolepsy fall asleep without warning. It can happen anywhere and at any time. It may happen when you're bored or during a task. For example, you may be working or talking with friends and suddenly fall asleep. It can be especially dangerous if you fall asleep while driving. You might fall asleep for only a few minutes or up to a half-hour. After waking, you'll often feel refreshed but you'll get sleepy again.
You also may experience a decrease in how alert and focused you feel during the day. Daytime sleepiness often is the first symptom to appear. Feeling sleepy makes it hard to focus and function.
Some people with narcolepsy continue doing a task when they fall asleep briefly. For example, you may fall asleep while writing, typing or driving. You might continue to perform that task while asleep. When you awaken, you can't remember what you did, and you probably didn't do it well.
Sudden loss of muscle tone. This condition is called cataplexy. It can cause slurred speech or complete weakness of most muscles. Symptoms may last up to a few minutes.
Cataplexy can't be controlled. It's triggered by intense emotions. Often the emotions that cause cataplexy are positive. Laughter or excitement may cause the symptoms. But sometimes fear, surprise or anger can cause the loss of muscle tone. For example, when you laugh, your head may drop without your control. Or your knees may suddenly lose strength, causing you to fall.
Some people with narcolepsy experience only one or two episodes of cataplexy a year. Others have several episodes a day. Not everyone with narcolepsy has these symptoms.
Sleep paralysis. People with narcolepsy often experience sleep paralysis. During sleep paralysis, you can't move or speak while falling asleep or upon waking. It's usually brief — lasting a few seconds or minutes. But it can be scary. You may be aware of it happening and can recall it afterward.
Not everyone with sleep paralysis has narcolepsy.
People with narcolepsy may have other sleep disorders. They might have obstructive sleep apnea, in which breathing starts and stops during the night. Or they may act out their dreams, known as REM sleep behavior disorder. Or they may have trouble falling asleep or staying asleep, called insomnia.
See your health care provider if you experience excessive daytime sleepiness that affects your personal or professional life.
The exact cause of narcolepsy is unknown. People with type 1 narcolepsy have low levels of hypocretin (hi-poe-KREE-tin), also called orexin. Hypocretin is a chemical in the brain that helps control being awake and when you enter REM sleep.
Hypocretin levels are low in people who experience cataplexy. Exactly what causes the loss of hypocretin-producing cells in the brain isn't known. But experts suspect it's due to an autoimmune reaction. An autoimmune reaction is when the body's immune system destroys its own cells.
It's also likely that genetics plays a role in narcolepsy. But the risk of a parent passing this disorder to a child is very low — only about 1% to 2%.
Research also indicates that in some cases narcolepsy may be linked to exposure to the swine flu (H1N1 flu) virus. It also may be linked to a certain form of the H1N1 vaccine. The vaccine was administered in Europe.
The typical process of falling asleep begins with a phase called non-rapid eye movement (NREM) sleep. During this phase, brain waves slow. After an hour or so of NREM sleep, brain activity changes and REM sleep begins. Most dreaming occurs during REM sleep.
In narcolepsy, you may suddenly enter REM sleep without going through NREM sleep. This can happen both at night and during the day. Cataplexy, sleep paralysis and hallucinations are similar to changes that occur in REM sleep. But in narcolepsy they happen while you're awake or drowsy.
There are only a few known risk factors for narcolepsy, including:
Your health care provider may suspect narcolepsy based on your symptoms of excessive daytime sleepiness and sudden loss of muscle tone, known as cataplexy. Your provider will likely refer you to a sleep specialist. Formal diagnosis requires staying overnight at a sleep center for an in-depth sleep analysis.
A sleep specialist will likely diagnose narcolepsy and determine how severe it is based on:
Your sleep records. You may be asked to write down your sleep pattern for a week or two. This allows your provider to compare how your sleep pattern may relate to how alert you feel.
Your health care provider also may ask you to wear an actigraph. This device is worn like a watch. It measures periods of activity and rest. It provides an indirect measure of how and when you sleep.
These tests also can help rule out other possible causes of your symptoms. Excessive daytime sleepiness could also be caused by sleep deprivation, the use of sedating medicines and sleep apnea.
There is no cure for narcolepsy, but medicines and lifestyle changes can help you manage the symptoms.
Medicines for narcolepsy include:
Stimulants. Drugs that stimulate the central nervous system are the primary treatment to help people with narcolepsy stay awake during the day. Your health care provider may recommend modafinil (Provigil) or armodafinil (Nuvigil). These medicines aren't as habit-forming as older stimulants. They also don't produce the highs and lows associated with older stimulants. Side effects are uncommon but may include headache, nausea or anxiety.
Solriamfetol (Sunosi) and pitolisant (Wakix) are newer stimulants used for narcolepsy. Pitolisant also may be helpful for cataplexy.
Some people need treatment with methylphenidate (Ritalin, Concerta, others) or amphetamines (Adderall XR 10, Dexedrine, others). These medicines are effective but can be habit-forming. They may cause side effects such as nervousness and a fast heartbeat.
Serotonin and norepinephrine reuptake inhibitors (SNRIs) or selective serotonin reuptake inhibitors (SSRIs). These medicines suppress REM sleep. Health care providers prescribe these medicines to help ease the symptoms of cataplexy, hallucinations and sleep paralysis.
They include venlafaxine (Effexor XR), fluoxetine (Prozac) and sertraline (Zoloft). Side effects can include weight gain, insomnia and digestive problems.
Sodium oxybate (Xyrem) and oxybate salts (Xywav). These medicines work well at relieving cataplexy. They help improve nighttime sleep, which is often poor in narcolepsy. They also may help control daytime sleepiness. It's taken in two doses, one at bedtime and one up to four hours later.
Xywav is a newer formulation with less sodium.
These medicines can have side effects, such as nausea, bed-wetting and sleepwalking. Taking them together with other sleeping tablets, narcotic pain relievers or alcohol can lead to trouble breathing, coma and death.
If you take medicines for other health problems, ask your health care provider how they may interact with narcolepsy medicines.
Certain medicines that you can buy without a prescription can cause drowsiness. They include allergy and cold medicines. If you have narcolepsy, your doctor may recommend that you don't take these medicines.
Researchers are studying other potential treatments for narcolepsy. Medicines being studied include those that target the hypocretin chemical system. Researchers also are studying immunotherapy. Further research is needed before these medicines become available.
Lifestyle changes are important in managing the symptoms of narcolepsy. You may benefit if you:
Dealing with narcolepsy can be a challenge. Consider these tips:
Talk about it. Tell your employer or teachers about your condition. Then work with them to find ways to adjust to your needs. This may include taking naps during the day. Or you might break up repetitive tasks. You might record meetings or classes to refer to later. You also might find it helps to stand during meetings or lectures, and to take brisk walks during the day.
The Americans with Disabilities Act prohibits discrimination against workers with narcolepsy. Employers are required to provide reasonable accommodation to qualified employees.
Support groups and counseling can help you and your loved ones cope with narcolepsy. Ask your health care provider to help you locate a group or qualified counselor in your area.
You're likely to start by seeing your primary care provider. But if narcolepsy is suspected, you may be referred to a sleep specialist.
Here's some information to help you prepare for your appointment.
Preparing a list of questions for your provider will help you make the most of your time together. List your questions from most important to least important. For narcolepsy, some basic questions to ask your doctor include:
Don't hesitate to ask other questions anytime during your appointment.
Your doctor is likely to ask you a number of questions, including: