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Narcolepsy

Symptoms and Treatment of Narcolepsy

Narcolepsy Narcolepsy is a chronic neurological disorder affecting the part of the brain that regulates sleep. Those suffering from narcolepsy can experience excessive daytime sleepiness and sudden loss of muscle control, often triggered by strong emotions. As a result, a person may fall asleep while working, cooking, or even driving. Learn what you can do to reduce symptoms, improve alertness, and enjoy a full and active life.

Signs and symptoms of narcolepsy

Most sufferers experience their first symptoms of narcolepsy between the ages of 10 and 25. Symptoms can vary greatly from one person to another, but the main narcolepsy symptoms are excessive daytime sleepiness (with or without sudden sleep episodes) and abnormal REM sleep. Other symptoms of narcolepsy may be related to your abnormal REM sleep, including hallucinations, sleep paralysis, and cataplexy (sudden loss of muscle control).

Two of the most common narcolepsy symptoms—excessive daytime sleepiness and cataplexy—are often connected to your emotional state. You may tend to exhibit these symptoms when you experience intense emotions, such as laughter, sadness, surprise, or frustration.

Common narcolepsy symptoms include:

  • Cataplexy (loss of muscle control). Often, narcolepsy may cause you to have a sudden loss of muscle control while awake, usually triggered by strong emotions, such as laughing or crying.
  • Hallucinations. Some people with narcolepsy experience vivid, sometimes frightening, visual or auditory sensations while falling asleep or upon awakening.
  • Sleep paralysis. You may be unable to move or talk at the beginning or end of sleep.
  • Microsleep is a very brief sleep episode during which you continue to function (talk, put things away, etc.), and then awaken with no memory of the activities.
  • Nighttime wakefulness. If you suffer from narcolepsy, you may have periods of wakefulness at night with hot flashes, elevated heart rate, and sometimes intense alertness.
  • Rapid entry into REM sleep. Narcoleptics have unique sleep cycles where he or she may enter the REM or dream phase of sleep right after falling asleep, whereas most people take about 90 minutes to enter REM. Therefore, you’ll experience the characteristics of REM sleep (vivid dreams and muscle paralysis) at the beginning of sleep, even if that sleep is during the day.

The causes of narcolepsy

While researchers continue to seek out the root cause of narcolepsy, the general consensus is that your genetics, accompanied by an environmental trigger of some sort—a virus, for example—may affect your brain chemicals and cause narcolepsy.

Scientists have discovered that people with narcolepsy are lacking in hypocretin ( also called orexin ), a chemical in the brain that activates arousal and regulates sleep. Narcoleptics generally do not have as many Hcrt cells (neurons that secrete hypocretin), inhibiting his or her ability to fully control alertness, which accounts for his or her tendency to fall asleep. Scientists are working on developing treatments to supplement hypocretin levels to reduce narcolepsy symptoms.

Diagnosing narcolepsy

Narcolepsy can often be either mis- or undiagnosed. People with narcolepsy often wait to consult a doctor because the most common (and sometimes the only) symptom is excessive daytime sleepiness, a symptom that could be indicative of many conditions. Additionally, narcolepsy symptoms are often falsely attributed to other sleep disorders or medical conditions (such as depression or epilepsy).

As the only unique symptom of narcolepsy is cataplexy (sudden loss of muscle control), diagnosis
of the condition can take a long time—often more than one year, and sometimes as long as several decades. If you suspect you have narcolepsy, be sure to speak with your doctor about ALL of the symptoms you are experiencing.

Along with your list of symptoms, physicians and sleep specialists use the following methods to diagnose narcolepsy:

  • Nocturnal polysomnogram – This overnight test measures the electrical activity of your brain and heart, and the movement of your muscles and eyes.
  • Multiple sleep latency test (MSLT) – This test measures how long it takes for you to fall asleep during the day.
  • Spinal fluid analysis – The lack of hypocretin in the cerebrospinal fluid may be a marker for narcolepsy. Examining spinal fluid is a new diagnostic test for narcolepsy.

Epworth Sleepiness Scale to test for narcolepsy

The Epworth Sleepiness Scale measures daytime sleepiness. Use the following scale to choose the most appropriate number for each situation:

0 = would never doze or sleep
1 = slight chance of dozing or sleeping
2 = moderate chance of dozing or sleeping
3 = high chance of dozing or sleeping

Situation

Chance of Dozing or Sleeping

Sitting and reading

---

Watching TV

---

Sitting inactive in a public place

---

Being a passenger in a motor vehicle for an hour or more

---

Lying down in the afternoon

---

Sitting and talking to someone

---

Sitting quietly after lunch (no alcohol)

---

Stopped for a few minutes in traffic
while driving

---

Total score (add the scores up)

---

A total score of 10 or more is considered sleepy. A score of 18 or more is very sleepy.

Source: University of Maryland Medical Center

The effects of narcolepsy

Narcolepsy can have repercussions on almost every aspect of your life, including:

Effects of Narcolepsy

Physical well-being and safety

Many ordinary daily activities, such as driving, working, cooking, or walking, can become very dangerous if you fall asleep or lose muscle control unexpectedly.

Mental health

Narcolepsy can disrupt your life to the extent that it may lead to depression and anxiety.

Social and professional relationships

Unfortunately, sudden sleep episodes are often found humorous to those not familiar with narcolepsy. Some people may assume that you are lazy, rude, or even faking the sudden sleep episodes.

Intimate relationships

Your personal relationships, especially spousal relationships, can often suffer as a result of narcolepsy. Extreme sleepiness may also cause low sex drive and impotence.

Memory and attention

Narcolepsy may cause you to have problems remembering things and concentrating, creating more disruption to your daily activities.

Narcolepsy treatment

Although no cure yet exists for narcolepsy, a combination of treatments can help control your narcolepsy symptoms and enable you to enjoy many normal activities. The treatment that works best for you will vary according to your specific narcolepsy symptoms, but will likely include a combination of counseling, medication, and lifestyle changes.

Narcolepsy treatment: counseling and support groups

It’s very common for those with narcolepsy to suffer from depression. Many symptoms of narcolepsy—particularly sleep attacks and cataplexy—can cause great embarrassment and wreak havoc on your ability to live a normal life. These episodes can be frightening, and you may become depressed because of the sudden lack of control. Fear of falling asleep or of sudden collapse forces some people to become reclusive and withdrawn. Reaching out to a psychologist, counselor, or narcolepsy support group can help you cope with the effects of the disorder.

Reaching out may seem overwhelming at first, but being with others who face the same problems can help reduce your sense of isolation and remove any stigma you may feel. It can also be inspiring to share experiences and learn how others have coped with his or her symptoms of narcolepsy. For help finding a therapist or narcolepsy support group, see Resources and References section below.

Lifestyle changes to ease the symptoms of narcolepsy

Making healthy lifestyle changes can help you manage narcolepsy symptoms, in conjunction with counseling and support, and any recommendations from your doctor. Daytime habits—such as exercise, diet, and how you manage stress—play a large role in helping you maintain a healthy sleep-wake cycle. It’s important to follow a regular sleep schedule, a relaxing bedtime routine, and take practical steps to counter the effects of narcolepsy during the day.

Combining the various self-help treatments can help to not only improve your daytime alertness but also help reduce the symptoms of narcolepsy.

Self-Help for Narcolepsy

Schedule your sleep periods

Take a few brief, scheduled naps during the daytime (10-15 minutes each). Try to get a good night’s sleep during the same hours each night. Planned naps can prevent unplanned lapses into sleep.

Avoid caffeine, alcohol, and nicotine

These substances interfere with sleep when you need it.

Avoid over-the-counter drugs that cause drowsiness

Some allergy and cold medications can cause drowsiness, so should be avoided.

Involve your employers, coworkers, and friends

Alert others so that they can help when needed.

Carry a tape recorder

Record important conversations and meetings, in case you fall asleep.

Break up larger tasks into small pieces

Focus on one small thing at a time.

Exercise on a regular basis

Exercise can make you feel more awake during the day and stimulate sleep at night. For example, take several short walks during the day.

Avoid activities that would be dangerous if you had a sudden sleep attack

If possible, don’t drive, climb ladders, or use dangerous machinery. Taking a nap before driving may help you to manage any possible sleepiness.

Wear a medical alert bracelet or necklace

A bracelet or necklace will alert others if you suddenly fall asleep or become unable to move or speak.

Eat a healthy diet

Aim for a diet rich in whole grains, vegetables, fruits, low fat dairy, and lean sources of protein. Eat light or vegetarian meals during the day and avoid heavy meals before important activities.

Relax and manage emotions

Narcolepsy symptoms can be triggered by intense emotions, so you may benefit from practicing relaxation techniques, such as breathing exercises, yoga, or massage.

Medications for the treatment of narcolepsy

Medication can be helpful in treating the major symptoms of narcolepsy: sleepiness and cataplexy. Commonly prescribed drugs for narcolepsy are stimulants, antidepressants, and sodium oxybate. All medications have side effects so be sure to check with your doctor first. Even if your narcolepsy symptoms require the use of prescription medication, experts recommend combining a drug regimen with lifestyle changes and counseling or therapy.

Common medications used to treat narcolepsy symptoms include:

  • Stimulants. Stimulants are the mainstay of drug treatment for narcolepsy. These include modafinil (Provigil), a stimulant used during the day to promote wakefulness and alertness. Side effects of modafinil may include headache, nausea, dry mouth, and diarrhea. Psychiatric side effects, such as anxiety, mania, hallucinations, and suicidal thinking have also been reported, so the drug should be avoided if you have a history of depression, mania, or psychosis.
  • Sodium oxybate (Xyrem). This strong drug may be prescribed if you have severe cataplexy. Sodium oxybate is also known as GHB, or the "date rape drug," but is considered safe for treating narcolepsy when used responsibly to promote sound sleep, diminish daytime sleepiness, and reduce incidences of cataplexy. However, the side effects can be serious and may include nausea, bed-wetting, and worsening of sleepwalking. Too high a dose can even lead to difficulty breathing, coma, and death.
  • Antidepressants. Selective serotonin reuptake inhibitors (SSRIs) used to treat depression may also be used to help suppress REM sleep, and alleviate symptoms of cataplexy, hallucinations, and sleep paralysis. These include fluoxetine (Prozac), sertraline (Zoloft), and newer antidepressants such as venlafaxine (Effexor). While the most common side effects of antidepressants include decreased sexual desire, digestive problems, restlessness, headache, and insomnia, there can also be dangerous side effects.

Antidepressant drug risk factors

Antidepressants can produce unpleasant or dangerous side effects, including an increased risk of suicide. The risk factors are higher for:

  • People with bipolar disorder: Antidepressants can trigger mania or cause rapid cycling between depression and mania. (Note that many people with bipolar disorder are undiagnosed).
  • People over 65. SSRI medications may increase the risk for falls, fractures, and bone loss in older adults.
  • Pregnant women. The use of SSRIs late in pregnancy may lead to short-term withdrawal symptoms in newborns after delivery. Typical symptoms include tremors, restlessness, mild respiratory problems, and a weak cry.
  • Teens, adolescents, and young adults. The U.S. Food and Drug Administration require that all depression medications include a warning label about the increased risk of suicide in children and young adults.

More help for narcolepsy

Resources and references

Narcolepsy symptoms and causes

What Is Narcolepsy? – Comprehensive information on narcolepsy symptoms, causes, diagnosis, treatment, and research. (University of Maryland Medical Center)

Stanford Center for Narcolepsy – Information on the diagnosis and treatment of narcolepsy. Covers Epidemiology; Socio-Economic Impact; Symptoms and Diagnosis. (Stanford School of Medicine)

Narcolepsy Association UK (UKAN) – An easy-to-understand site for information and support for narcolepsy sufferers. (Narcolepsy.org.uk)

Epworth Sleepiness Scale – Used by physicians and sleep specialists to determine the level of daytime sleepiness. (University of Maryland Medical Center)

Support for narcolepsy

What Can I Do? – A listing of support groups and contact people throughout the world who can help you with your narcolepsy. (NarcolepsyNetwork.org)

International Organizations – List of organizations around the globe that provide information and support to people with narcolepsy. (Narcolepsy Network)

Finding help and treatment for narcolepsy

Find a therapist – International directory of therapists schooled in cognitive and behavioral techniques including those familiar with treating sleep disorders such as narcolepsy. (Association for Behavioral and Cognitive Therapies)

Medications for the treatment of narcolepsy

Medications – A list of medications most commonly used in the treatment of narcolepsy. (Stanford School of Medicine)

Authors: Lawrence Robinson, and Jeanne Segal, Ph.D. Last updated: December 2014.