Narcolepsy 101

Sleep Disorders

What Is Narcolepsy?

Narcolepsy is a chronic sleep disorder with no known cause. The main characteristic of narcolepsy is excessive and overwhelming daytime sleepiness, even after adequate nighttime sleep. A person with narcolepsy is likely to become drowsy or to fall asleep, often at inappropriate times and places. Daytime sleep attacks may occur with or without warning and may be irresistible. These attacks can occur repeatedly in a single day. Drowsiness may persist for prolonged periods of time. In addition, nighttime sleep may be fragmented with frequent awakenings.

Three other classic symptoms of narcolepsy, which may not occur in all patients, are:

  • Cataplexy:

    sudden episodes of loss of muscle function, ranging from slight weakness (such as limpness at the neck or knees, sagging facial muscles, or inability to speak clearly) to complete body collapse. Attacks may be triggered by sudden emotional reactions such as laughter, anger, or fear and may last from a few seconds to several minutes. The person remains conscious throughout the episode.

  • Sleep paralysis:

    temporary inability to talk or move when falling asleep or waking up. It may last a few seconds to minutes.

  • Hypnagogic hallucinations:

    vivid, often frightening, dream-like experiences that occur while dozing or falling asleep.

Daytime sleepiness, sleep paralysis, and hypnagogic hallucinations can also occur in people who do not have narcolepsy.

In most cases, the first symptom of narcolepsy to appear is excessive and overwhelming daytime sleepiness. The other symptoms may begin alone or in combination months or years after the onset of the daytime sleep attacks. There are wide variations in the development, severity, and order of appearance of cataplexy, sleep paralysis, and hypnagogic hallucinations in individuals. Only about 20 to 25 percent of people with narcolepsy experience all four symptoms. The excessive daytime sleepiness generally persists throughout life, but sleep paralysis and hypnagogic hallucinations may not.

The symptoms of narcolepsy, especially the excessive daytime sleepiness and cataplexy, often become severe enough to cause serious disruptions in a person’s social, personal, and professional lives and

How Common Is Narcolepsy?

Although it is estimated that narcolepsy afflicts as many as 200,000 Americans, fewer than 50,000 are diagnosed. It is as widespread as Parkinson’s disease or multiple sclerosis and more prevalent than cystic fibrosis, but it is less well known. Narcolepsy is often mistaken for depression, epilepsy, or the side effects of medications.

Who Gets Narcolepsy?

Narcolepsy can occur in both men and women at any age, although its symptoms are usually first noticed in teenagers or young adults. There is strong evidence that narcolepsy may run in families; 8 to 12 percent of people with narcolepsy have a close relative with the disease.

What Happens In Narcolepsy?

Normally, when an individual is awake, brain waves show a regular rhythm. When a person first falls asleep, the brain waves become slower and less regular. This sleep state is called non-rapid eye movement (NREM) sleep. After about an hour and a half of NREM sleep, the brain waves begin to show a more active pattern again, even though the person is in deep sleep. This sleep state, called rapid eye movement (REM) sleep, is when dreaming occurs.

In narcolepsy, the order and length of NREM and REM sleep periods are disturbed, with REM sleep occurring at sleep onset instead of after a period of NREM sleep. Thus, narcolepsy is a disorder in which REM sleep appears at an abnormal time. Also, some of the aspects of REM sleep that normally occur only during sleep–lack of muscle tone, sleep paralysis, and vivid dreams–occur at other times in people with narcolepsy. For example, the lack of muscle tone can occur during wakefulness in a cataplexy episode. Sleep paralysis and vivid dreams can occur while falling asleep or waking up.

When Should You Suspect Narcolepsy?

You should be checked for narcolepsy if:

  • you often feel excessively and overwhelmingly sleepy during the day, even after having had a full night’s sleep;
  • you fall asleep when you do not intend to, such as while having dinner, talking, driving, or working;
  • you collapse suddenly or your neck muscles feel too weak to hold up your head when you laugh or become angry, surprised, or shocked;
  • you find yourself briefly unable to talk or move while falling asleep or waking up.

Diagnosis is relatively easy when all the symptoms of narcolepsy are present. But if the sleep attacks are isolated and cataplexy is mild or absent, diagnosis is more difficult. Two tests that are commonly used in diagnosing narcolepsy are the polysomnogram and the multiple sleep latency test. These tests are usually performed by a sleep specialist. The polysomnogram involves continuous recording of sleep brain waves and a number of nerve and muscle functions during nighttime sleep. When tested, people with narcolepsy fall asleep rapidly, enter REM sleep early, and may awaken often during the night. The polysomnogram also helps to detect other possible sleep disorders that could cause daytime sleepiness. For the multiple sleep latency test, a person is given a chance to sleep every 2 hours during normal wake times. Observations are made of the time taken to reach various stages of sleep. This test measures the degree of daytime sleepiness and also detects how soon REM sleep begins. Again, people with narcolepsy fall asleep rapidly and enter REM sleep early.

How Is Narcolepsy Treated?

Although there is no cure for narcolepsy, treatment options are available to help reduce the various symptoms. Treatment is individualized depending on the severity of the symptoms, and it may take weeks or months for an optimal regimen to be worked out. Complete control of sleepiness and cataplexy is rarely possible. Treatment is primarily by medications, but lifestyle changes are also important. The main treatment of excessive daytime sleepiness in narcolepsy is with a group of drugs called central nervous system stimulants. For cataplexy and other REM-sleep symptoms, antidepressant medications and other drugs that suppress REM sleep are prescribed. Caffeine and over-the-counter drugs have not been shown to be effective and are not recommended.

In addition to drug therapy, an important part of treatment is scheduling short naps (10 to 15 minutes) two to three times per day to help control excessive daytime sleepiness and help the person stay as alert as possible. Daytime naps are not a replacement for nighttime sleep.

Ongoing communication among the physician, the person with narcolepsy, and family members about the response to treatment is necessary to achieve and maintain the best control.

What Is Being Done To Better Understand Narcolepsy?

Studies supported by the National Institutes of Health (NIH) are trying to increase understanding of what causes narcolepsy and improve physicians’ ability to detect and treat the disease. Scientists are studying narcolepsy patients and families, looking for clues to the causes, course, and effective treatment of this sleep disorder. Recent discovery of families of dogs that are naturally afflicted with narcolepsy has been of great help in these studies. Some of the specific questions being addressed in NIH-supported studies are the nature of genetic and environmental factors that might combine to cause narcolepsy and the immunological, biochemical, physiological, and neuromuscular disturbances associated with narcolepsy. Scientists are also working to better understand sleep mechanisms and the physical and psychological effects of sleep deprivation and to develop better ways of measuring sleepiness and cataplexy.

How Can Individuals And Their Families And Friends Cope With Narcolepsy?

Learning as much about narcolepsy as possible and finding a support system can help patients and families deal with the practical and emotional effects of the disease, possible occupational limitations, and situations that might cause injury. A variety of educational and other materials are available from sleep medicine or narcolepsy organizations. Support groups exist to help persons with narcolepsy and their families.

Individuals with narcolepsy, their families, friends, and potential employers should know that:

  • Narcolepsy is a life-long condition that requires continuous medication.
  • Although there is not a cure for narcolepsy at present, several medications can help reduce its symptoms.
  • People with narcolepsy can lead productive lives if they are provided with proper medical care.
  • If possible, individuals with narcolepsy should avoid jobs that require driving long distances or handling hazardous equipment or that require alertness for lengthy periods.
  • Parents, teachers, spouses, and employers should be aware of the symptoms of narcolepsy. This will help them avoid the mistake of confusing the person’s behavior with laziness, hostility, rejection, or lack of interest and motivation. It will also help them provide essential support and cooperation.
  • Employers can promote better working opportunities for individuals with narcolepsy by permitting special work schedules and nap breaks.
  • National Center On Sleep Disorders Research (NCSDR)

The preceding material was prepared by the National Center on Sleep Disorders Research (NCSDR), part of the National Heart, Lung, and Blood Institute of the National Institutes of Health. It appears here courtesy of the NCSDR. This article was originally published in 1996, and does not reflect developments in the treatment of narcolepsy since 1996. It is intended as an introduction and overview for those interested in learning about narcolepsy.

The NCSDR, located within the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH), supports research, scientist training, dissemination of the health information, and other activities on sleep disorders and related concerns. The NCSDR also coordinates sleep research activities with other Federal agencies and with public and nonprofit organizations.

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Comments (13)

  1. My name is Nicole. I am 35 years old. In 2014 i started having seizure like fallouts ,two months later i found out i was pregnant. Of course my emotions ran high,scared about the risks my child might go through,or worried that if i passed out that my baby would be ok. Lots of thoughts went through my head ,so i held off on the testings and was on non stop watch,family friends loved ones .two years ago i gave birth to my healthy lil girl.the last three years it has been horrible. My children seeing me pass out ,all the falls ,them hsving to catch me or grab my baby because i was just joking about something. Its hard to see them so scared and sad. Daily i have fall outs and some i can fight others i have no controll.Tests after tests several types of doctors and everything kept coming back inconclusive. My neurologist thought i had but there was no proof.So i started loosing hope to finding out what was wrong till another doctor read my file and asked my mother and me questions, then scheduled blood work. I have Narcolepsy with sever Catoplexy.
    I thought knowing what was wrong would make me feel better but it put me into depression. This means no cure ,no working,no driving and pretty much a babysitter to watch my every move. Life is hard Sometimes i dont know what to do,sometimes i just dont want to be around anyone . If any one out there can give me some advise please feel free to.

  2. How do you find out if you have narcolepcy if you have experienced all the symptoms but your neurologist just tells you you don’t have it without asking what your other symptoms are besides know you have EDS. Also can people with ADD/ADHD experience narcolepcy symptoms?

  3. I found out I had narcolepsy /cataplexy when I as 12,Its beena very long road ,when they made biphetamine 20 I could do anything a normal person could do but then they quit making them,and I had to switch to desoxyn ,which doesnt work as good .does anyone know of any medication that is near biphetamine 20?

  4. I have narcolepsy, it’s hard to deal with I fall asleep so much and I’m only 16 years old I was sleep walking to the store one day on the sidewalk couldn’t control myself I have loss muscles attcak almost everyday,, one day I feel asleep on the field at football practice,, and one day I was zombiesh walking to practice my coaches ran to me and stuff it’s hard I had all Is in middle school all 4 years just straight F’s it’s hard I wish there was some type of medicine that could put a end to all of this

  5. Hi guys I am very new to this I’ve only been on xyrem for a couple of weeks I am very sick in the mornings throwing up and sometimes crampy I wanted to know if this is normal and if it goes away I don’t want to give up on this medicine because I am actually sleeping but I am getting so sick that I have missed two days in a row of work. I also am hungry after my first dose and sometimes have a snack is this something that can cause me to be sick in the mornings

  6. I started taking Xyrem in 2005, in 2013 I had a medicated induced psychosis leaving evidence of lesions on the brain that were later found after I fell and hit the back of my head causing seizures. In 2013 in spent the next 3 years trying to get my mental health back. I still have all the paperwork. I have practically restarted my education and suffered from severe bipolar issue that are now resolved but that is only the tip of the ice burg. I know there is a litigation against them starting in 2017. I even have the documents,bottles, and hospitalization information. The doctor stated I would have died within the next 2 to 3 weeks if I had not started hullicinating. Like many others in 2005 I paid 900 for two bottles, 1 year it was over 2000 for 2, by 2013 it was 9000.

  7. do they think people that are in a coma might be dead. Remedies evertime you try to wake its seems like they are trying to say that’s its illegal to wake. Am I simple or smart. do we get moved when we sleep?

  8. Could you help me out of narcolepsy? Am I simple or sleepy tired not awake. smart but narcoleptic. moved when i asleep. a eeg. what is the process in waking someone. remedies, medication? changing sleeping cycles. itching. sometimes to much sleep. I am afraid of narcolepsy.

  9. I never get the right kind of sleep they also interrupt. Tachycardia fears. If I drink 100 cups of coffee and they notice a difference. what if they scare you and you think you are about to get in trouble. Please help

  10. Just looking for a support group. Been alone with severe narcolepsy sleep apnea both kinds plus cataplexy and more. Been on so many different clinical trials of drugs nothing has helped much except adderall which I still feel so sleepy but can function some. Always bruises upon from unplanned naps. Just wishing to have communication with another with similar problem been an extremely long 21 year ride since diagnosed

  11. My name is Vanessa. I’m 32 y.o. and a single parent of 4 that has been diagnosed about 3 1/2 years ago, but have suffered from this condition since around the age of 13 or younger. It has always caused such difficulty for me with being on time for work and school my whole life. Missing important meetings/ appointments/ picking up my children. Smh I have recently become severely depressed after learning that if my new med adjustments do not work the doctor will have my license taken away. Its really sad when yoi just want to be normal. I am the sole provider and have no support. I recently lost my last living relative outside of my children. I hate the thought of not being able to keep a roof over our heads and relying on someone telling me that I cant do anything about it. Its like i am living in a locked cage with no key in site. I have been on all of the medications, changed shifts, changed jobs, taking naps which i feel worse after. Im begging for some prayers and suggestions please

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