Narcolepsy

Signs and symptoms of narcolepsy

The main narcolepsy symptoms are excessive daytime sleepiness (with or without sudden sleep episodes) and abnormal REM sleep, Several unusual symptoms of narcolepsy are related to abnormal REM sleep, including hallucinations, sleep paralysis and cataplexy (loss of muscle control). Cataplexy (sudden loss of muscle control) is the sole unique symptom of narcolepsy.

Each person with narcolepsy may experience very different symptoms and sometimes the only symptom they can report on is extreme daytime tiredness, which may make it hard to diagnose narcolepsy.
Other narcolepsy symptoms include:

• Cataplexy (loss of muscle control): People with narcolepsy often have a sudden loss of muscle control while awake, usually triggered by strong emotions, such as laughing.
• Hallucinations: Some people with narcolepsy experience vivid, sometimes frightening, visual or auditory sensations while falling asleep or upon awakening.
• Sleep paralysis: Sleep paralysis is the inability to move or talk at the beginning or end of sleep.
• Microsleep: Microsleeps are very brief sleep episodes during which people with narcolepsy continue to function (talk, put things away, etc.), and then awaken with no memory of the activities.
• Nighttime wakefulness: People with narcolepsy 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. They enter the REM, or dream, phase of sleep right after falling asleep, whereas most people take about 90 minutes to enter the REM phase. Someone with narcolepsy will 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

Researchers continue to seek out the root cause of narcolepsy. The general consensus is that genetics, accompanied by an environmental trigger of some sort—a virus, for example— may affect 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 the Hcrt cells (neurons that secrete hypocretin), inhibiting their ability to fully control their alertness and tendencies to fall asleep. Scientists are working on developing treatments to supplement hypocretin levels and reduce narcolepsy symptoms.

Heredity appears to be a factor in narcolepsy, but environmental triggers also play a strong role. Research is also investigating these triggers.

Diagnosing narcolepsy

Narcolepsy is often misdiagnosed or undiagnosed. People with narcolepsy often wait to to consult a doctor because the most common (and sometimes the only) symptom is excessive daytime sleepiness, a symptom which 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). Cataplexy (sudden loss of muscle control) is the sole unique symptom of narcolepsy.

Diagnosis of narcolepsy can take a very long time, sometimes more than one year, or even up to several decades. If you suspect you have narcolepsy, be sure to speak with your doctor about all symptoms you are experiencing.

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

• Epworth Sleepiness Scale – A general sleep questionnaire.
• 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.

The effects of narcolepsy

Narcolepsy can have serious repercussions on many aspects of life. The following are just a few of the effects narcolepsy can have on your life.

Effects of Narcolepsy
Physical well-being and safety	Many activities, including driving, working, cooking, or walking, can be very dangerous if you fall asleep or lose muscle control unexpectedly.
Mental health	Narcolepsy disrupts all aspects of life and can lead to depression and anxiety.
Social and professional relationships	Unfortunately, sudden sleep episodes are often found humorous to those not familiar with narcolepsy. People may assume that the individual with narcolepsy is lazy, rude or faking the sudden sleep episodes.
Intimate relationships	Personal relationships, especially spousal relationships, often suffer. Extreme sleepiness may also cause low sex drive and impotence.
Memory and attention	People with narcolepsy may have problems remembering things and concentrating.

Treating narcolepsy

Although no cure yet exists for narcolepsy, a combination of treatments can control narcolepsy symptoms. The recommended treatment for narcolepsy includes a combination of counseling, medication, and behavioral changes.

Treating narcolepsy with counseling and support groups

The symptoms of narcolepsy—particularly sleep attacks and cataplexy—can wreak havoc on your ability to live a normal life. The 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. Depression in people with narcolepsy is understandably very common. Reaching out to a psychologist, counselor, or support group can help you to cope with the effects of the disorder.

Medications for narcolepsy

Medication is very helpful for treating the symptoms of narcolepsy. Commonly prescribed drugs for narcolepsy are stimulants, antidepressants and sodium oxybate.  All medications have side effects so talk with your doctor

Behavioral changes that help the effects of narcolepsy

Behavioral changes are usually recommended along with medications to help a person to manage narcolepsy symptoms. Combining the various treatments can improve alertness and help you control the effects of a narcoleptic episode.

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.
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.

Related Links

Related links for narcolepsy

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)

Support for narcolepsy

Narcolepsy Internet's Jumpstation – An annotated list of research, news, and abstracts. (Narcolepsy.org)

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

Finding help and treatment for narcolepsy

Locate a Sleep Center... – Find a sleep center by zip code or by state. (SleepCenters.org, American Academy of Sleep Medicine)

Tina de Benedictis, Ph.D, Heather Larson, Gina Kemp, M.A., and Suzanne Barston contributed to this article. Last modified: October 08.