What is Narcolepsy?
Narcolepsy can be defined as excessive drowsiness during the day with a tendency to sleep at inappropriate times. The sleep episodes of narcolepsy are sometimes brought on by highly stressful situations and are not completely relieved by any amount of sleep.
Although narcolepsy is a fairly uncommon condition, its impact on a person's life can be serious and -- if not recognized and appropriately managed -- disabling. Recent advances in medicine, technology and pharmacology (the study of the effects of drugs) are helping health care providers to recognize and treat this condition. A cure for narcolepsy has not yet been found, but most people with this disorder can lead nearly normal lives if the condition is properly treated.
What are the Symptoms of Narcolepsy?
The four most common symptoms of narcolepsy are excessive daytime sleepiness, cataplexy (sudden loss of strength in the muscles), sleep paralysis, and hypnagogic hallucinations (hallucinations that occur just before falling asleep, during naps and/or on waking up). In most cases, excessive daytime sleepiness is the most bothersome symptom. The symptoms of narcolepsy can appear all at once or can develop gradually over many years.
Excessive Daytime Sleepiness (EDS): EDS is usually the first symptom of narcolepsy. People with narcolepsy often report feeling easily tired and sleepy all the time. They tend to fall asleep not only in situations in which many people normally feel sleepy (after meals or during a dull lecture), but also when most people would remain awake (while watching a movie, writing a letter, or driving). People with narcolepsy may become drowsy or feel foggy at very unusual times or when drowsiness is dangerous.
Cataplexy: Attacks of cataplexy -- sudden, brief losses of muscle control -- are sometimes the first symptom of narcolepsy, but more often develop months or years after the onset of sleepiness. Cataplexy can be mild -- such as a brief feeling of weakness in the knees -- or it may cause a complete physical collapse, resulting in a fall. A person having such an attack is fully awake and knows what is happening. Cataplexy is usually triggered by strong emotion, such as laughter, anger or surprise. In some individuals, attacks can be caused by simply remembering or anticipating an emotional or anxiety-producing situation.
Sleep Paralysis: Sleep paralysis is a brief loss of muscle control that occurs when a person is falling asleep or waking up. The person may be somewhat aware of the surroundings, but is unable to move or speak. Sleep paralysis, unlike cataplexy. Usually disappears when the person is touched.
Hypnagogic Hallucinations: Hypnagogic hallucinations are vivid dreamlike experiences that occur when a person is drowsy. The hallucinations may involve disturbing images or sounds, such as strange animals or prowlers. These can be frightening because the person is partly awake but has control over the events. The dreams can also be upsetting if they are mistaken for the hallucinations or the delusions of mental illness.
Other Symptoms of Narcolepsy
Automatic Behaviors: Automatic behaviors are routine tasks performed by a person who is not consciously controlling the activity. Sometimes a person may actually fall asleep and continue an activity, but not remember it after waking up. Automatic behaviors cam be dangerous if a person is involved in a potentially hazardous activity, such as driving or cooking.
Disturbed Nighttime Sleep: This symptom often occurs in people with narcolepsy. A person who has trouble staying awake during the day may also have trouble staying asleep at night. The problem of daytime sleepiness is made worse by the many nighttime awakenings.
Other symptoms reported by people with narcolepsy include double vision, an inability to concentrate, and memory loss. Children with this disorder are often unable to keep up with their friends or schoolwork, and adults may be unable to fulfill normal obligations relating to work or family. Some people with narcolepsy also complain of headaches, dizziness snoring, sexual problems, and weight gain even though these symptoms are not caused by the disorder.
What Causes Narcolepsy?
Although the exact cause is not known, narcolepsy appears to be a disorder of the part of the central nervous system that controls sleep and wakefulness. Cataplexy and sleep paralysis are similar to the loss of muscle tone that accompanies normal dreaming in a stage of sleep called REM. In people with narcolepsy, however, these events (the lack of muscle tone and the dream experiences) occur at inappropriate times.
Narcolepsy is not caused by psychiatric or psychological problems. Narcolepsy sometimes runs in families, but many people with narcolepsy do not have relatives who are affected. Some researchers have suggested that certain genes, combined with other factors in a person's life, may cause the disorder.
How is Narcolepsy Diagnosed?
The first step in the diagnosis of this disorder should be an evaluation by a sleep specialist.
At a sleep disorders center, the specialist will thoroughly review the person's medical history and perform a complete physical examination. If the specialist suspects narcolepsy, the patient may be asked to undergo testing at the sleep center. Two tests, a polysomnograph and a multiple sleep latency test (MSLT), are commonly performed to confirm the diagnosis of narcolepsy and determine its severity.
During a polysomnograph, the patient is asked spend the night at the sleep center in a comfortable and private room. Small electrodes are attracted to the skin with a jellylike substance. The electrodes record brain waves, muscle activity, heart rate, and eye movements. The procedure is painless and the patient is asked to sleep as normally as possible. This test helps determine whether the patient has other disorders that may be contributing to the symptoms.
The MSLT is conducted the following day. With the electrodes still in place, the patient is asked to take four or five 20-minute naps at two-hour intervals. The MLST will monitor the patient's sleep patterns, since people with narcolepsy tend to have different sleep patterns than people without the disorder with narcolepsy, REM (dreaming) sleep often begins soon after the patient falls asleep. Consequently, these two tests - together with the patient's symptoms - help the sleep specialist determine whether the symptoms are caused by narcolepsy or by another disorder that shares some of its features.
How is Narcolepsy Treated?
Although narcolepsy cannot yet be cured, its symptoms can usually be controlled or improved so that sufferers experience symptoms less frequently and lead fairly normal lives. Because the array of symptoms is different in each person, the patient and sleep specialist must work together to plan a course of treatment. A treatment plan can have several important parts: medication, behavior treatment, and management of the patient's environment.
Medication: Over-the-counter medications containing caffeine usually do not work well in narcolepsy. However, prescription medications are available and can be effective in controlling excessive daytime sleepiness, cataplexy, hallucinations, and sleep disruptions. The patient and healthcare provider must work together to find the best balance between control of the symptoms and unwanted side affects of a drug.
Behavior Treatment: Treatment for narcolepsy often requires not only medication, but also adjustments in lifestyle. The following suggestions can bring substantial improvement for some narcoleptics.
• Follow a regular sleep/wake schedule. Go to bed and get up approximately the same time each day.
• Take short naps once of twice each day, as needed.
• Be cautious during activities that can be dangerous, such as driving or cooking, try to plan your schedule so that you will be alert at these times.
• Carefully follow the healthcare provider's instructions regarding medications. Immediately inform him or her of any changes or problems with medications.
Management of the Environment: Narcolepsy can be difficult to mange if the patient's family, acquaintances, and co-workers do not understand the disorder. Daytime sleepiness may be mistaken for laziness, depression, or lack of ability. The signs of cataplexy and dreaming during wakefulness may be mistakenly seen as a psychiatric problem.
People with narcolepsy, together with their doctors and counselors, can do the following: educate family members. A spouse or family members who have felt neglected of take advantage of can be reassured once they understand that the person's behavior is not willful or crazy. The support of family is an important step in learning to cope with this disorder.
Let friends know about the disorder. Making certain accommodations at work can help a narcolepsy sufferer continue to be productive employee.
Find a narcolepsy support group. Knowing that other individuals share this disorder can help.
If narcolepsy interferes with the ability to work, look into financial benefits that may be available.
If the person suffering from narcolepsy is a child, make sure his or her teachers know about the disorder. Small adjustments in the classroom can make a tremendous difference in terms of the child's self-esteem and ability to obtain a good education.
-- Dee S., Lafayette, L.A.
Courtesy of the American Academy of Sleep Medicine (http://www.aasmnet.org)