Narcolepsy FAQ’s
Information Provided Courtesy of Narcolepsy Network
- What is narcolepsy?
- What are the symptoms?
- Are there other symptoms?
- How are these symptoms related to narcolepsy?
- Is narcolepsy a psychological or mental disorder?
- Does narcolepsy affect learning?
- Is cataplexy dangerous?
- How is a diagnosis of narcolepsy determined?
- How is narcolepsy treated?
- What research is being conducted?
- What are the long-term problems of narcolepsy?
- What is Narcolepsy Network?
What is narcolepsy?
Narcolepsy is a neurological sleep disorder that can begin at any age and can continue throughout the patient’s life. The onset typically occurs during the teens or early twenties, but it can also appear later in life. Predisposition to it is partially hereditary. In the United States it is believed to affect approximately 1 in every 2000 people of both sexes and all races. Once fully established, narcolepsy is generally stable and can most often be effectively treated. People with narcolepsy can expect to live a normal life span.
What are the symptoms?
There are five primary symptoms:
- Excessive Daytime Sleepiness (EDS – often the primary symptom of narcolepsy), which includes daytime sleep attacks that may occur with or without warning and which may be uncontrollable; persistent drowsiness, which may continue for prolonged periods of time; and microsleeps, or fleeting moments of sleep, which may intrude into the waking state.
- Cataplexy (the second major symptom of narcolepsy), which is a sudden loss of voluntary muscle control, usually triggered by emotions such as laughter, surprise, fear, or anger. Cataplexy may occur more frequently during times of stress or fatigue. The cataplectic attack may involve only a slight feeling of weakness and limp muscles (i.e., sagging facial muscles, a nodding head, buckling knees, loss of arm strength, garbled speech), or it may result in immediate and total body collapse, during which the person may appear unconscious, but is actually awake and alert. These attacks may last from a few seconds up to several minutes. Cataplectic episodes are related to the loss of muscle tone usually associated with the normal dreaming stage of sleep called rapid eye movement (REM); as a protection against acting out one�s dreams, the muscles become immobile or paralyzed.
- Disrupted or fragmented nighttime sleep, which involves multiple periods of arousal.
- Hypnagogic hallucinations, which are vivid, realistic, and often frightening dreams.
- Sleep paralysis, which is a temporary inability to move. Both sleep paralysis and hypnagogic hallucinations can occur during the transition between sleep and wakefulness, while the brain is neither fully awake nor fully asleep.
Are there other symptoms?
The following secondary or auxiliary symptoms may appear:
- Automatic behavior, which is the performance of a routine task without conscious awareness of doing it and often without later memory of it.
- Side effects of medications or problems resulting from a continual effort to cope with the symptoms may produce additional problems. Feelings of intense fatigue and continual lack of energy are often reported, and depression is not uncommon. The ability to concentrate and memorize may be compromised. Vision and focusing problems, sleep eating, and eating binges may also occur. Alcohol may amplify or neutralize the effects of medications taken for the primary symptoms.
How are these symptoms all related to narcolepsy?
For the average person, a sleep period begins with about 90 minutes of non-REM sleep before the REM cycles begin. When a person with narcolepsy falls asleep, REM episodes often begin within 5 minutes. Since the brain may not be fully asleep when REM/dreaming begins, the dream may be experienced far more vividly and realistically. This is defined as a hallucination. After waking, REM periods, or fragments of REM, may occur inappropriately throughout the day. When automatic behavior occurs for a person with narcolepsy, sleep has partially overtaken the brain, but the body continues to perform familiar tasks.
Is narcolepsy a psychological or mental disorder?
Narcolepsy is a neurologically based sleep disorder involving the dissociation of sleep states. Psychological problems can result from the individual�s inability to cope with the symptoms and his/her family�s misunderstanding of the disorder. It is very difficult for a person with narcolepsy and those around him/her to understand that sleepiness and sleep attacks are uncontrollable. Failure to accept this fact may seriously impact self-esteem and/or personal relationships. Health care counseling for persons with narcolepsy and their families can help alleviate these secondary problems. Educating the public, especially school, health and human resource personnel, can help lessen or even prevent many of these problems.
Does narcolepsy affect learning?
Although narcolepsy does not affect intelligence, learning cannot help but be affected by the symptoms. Study, concentration, memory, and attention span may be periodically impaired by sleep. Children with narcolepsy should be identified at the earliest possible age to prevent a pattern of failure from developing, thus fostering low self-esteem. Adjustments in study habits may be continually necessary. This can best be accomplished with the cooperation of school personnel.
Is cataplexy dangerous?
Mild cataplexy, while perhaps embarrassing, is not dangerous. One can often find support for weakened head, neck, or arm muscles, so that others may not even be aware of the momentary loss of control. However, severe cataplexy, resulting in immediate and sudden body collapse, may cause injury. Companions should be told in advance what to expect and how to help. They should always check for the person�s safety and comfort, immediately relieving any unnatural bending of limbs or unusual body positions, assuring complete relaxation, and allowing the person with narcolepsy to recover naturally. Cataplexy for some can be so instantaneous that there is no time to prepare for safety and injury may occur. Obviously, potentially life threatening situations should be avoided unless cataplexy is fully controlled.
How is a diagnosis of narcolepsy determined?
Excessive daytime sleepiness (EDS) is often the first symptom to appear and, for some, the primary symptom of narcolepsy. However, EDS is also a symptom of various other medical conditions. Cataplexy, on the other hand, is unique to narcolepsy. The combination of EDS and cataplexy allow for a clinical diagnosis of narcolepsy. Even when cataplexy is present, laboratory tests may still be needed to confirm diagnosis and determine a treatment plan. The usual diagnostic procedure includes an overnight polysomnogram (PSG or sleep study) to rule out other causes of EDS and to determine the presence of unusual REM patterns. This is followed by the Multiple Sleep Latency Test (MSLT), or daytime nap test, which measures rapidity of sleep onset and how quickly REM sleep follows. The MSLT is the most widely accepted diagnostic test for narcolepsy. In addition, a genetic blood test has been developed which measures certain antigens often found in people who have a predisposition to narcolepsy. Positive results suggest a predisposition, but do not prove the presence of narcolepsy. This test is sometimes used when the diagnosis is in question. A new test is currently in use at a limited number of research facilities, which measures the level of hypocretin in cerebrospinal fluid (CSF). The absence of detectable hypocretins can confirm the presence of narcolepsy with cataplexy, but normal levels of hypocretin cannot rule out the disorder.
How is narcolepsy treated?
The goal of treatment is to decrease EDS and reduce occurrences of cataplexy using minimal medication. EDS and cataplexy must be treated separately. Traditionally, central nervous system stimulants (e.g., Ritalin and Dexedrine) have been used for EDS. In 1999, Provigil (modafinil) was the first stimulant-like drug approved for treatment of EDS associated with narcolepsy. Nuvigil (a longer-acting formulation of modafinil known as armodafinil) has just been approved by the FDA. It is currently in clinical trials. Tricyclic antidepressants (e.g., Vivactil and Tofranil) and selective serotonin reuptake inhibitors (SSRIs) have traditionally been used for treatment of cataplexy and other REM symptoms. Most recently, the antidepressants Effexor (an SSNRI) and Strattera (an SNRI) are showing excellent results in alleviating cataplexy and reducing other REM symptoms. In 2002, a new drug Xyrem (sodium oxybate) was approved for the safe and effective treatment of cataplexy. In 2005, Xyrem was also approved to treat EDS associated with narcolepsy. Xyrem is the only medication that treats all major symptoms of narcolepsy. In addition to drug therapy, 2 or 3 short naps during the day may help control sleepiness and maintain alertness. Diet control, such as avoidance of sugar and refined carbohydrates, and regular exercise may also help. Continuing doctor-patient communication is essential. Equally important is educating family, friends, teachers, and co-workers about narcolepsy. Joining a support group is recommended.
What research is being conducted?
Sleep scientists, at present, are focusing on genetics, neurotransmitters, and the autoimmune system. Researchers also believe that other factors, such as viral and bacterial agents, abrupt changes in wake-sleep cycles, illnesses, accidents, stressors, and even hormonal changes, may act as triggers, which determine whether or not someone with a genetic predisposition to narcolepsy will eventually develop the disorder.
What are the long-term problems of narcolepsy?
The consequences of narcolepsy may be many and far-reaching. Cataplexy may interfere with physical activities and efforts to avoid emotions may lead to social withdrawal. Sleep attacks and cataplexy in public are embarrassing and can cause serious social difficulties. Inability to work and/or drive may result in loss of independence, financial difficulties, and various other problems. In these situations, a person can easily lose touch with others and become depressed.
What is Narcolepsy Network?
We are a national non-profit corporation, founded in 1986. Our members include individuals with narcolepsy, their families and friends, and professionals involved in the study and treatment of narcolepsy. Our goals are to:
- Serve as a resource center
- Assist support groups
- Educate the public
- Facilitate early diagnosis
- Protect the rights of those with narcolepsy
- Encourage ongoing scientific research
The Narcolepsy Network engages in the following:
- Offering support and encouragement to narcolepsy support groups around the country. We will help to form and sustain support groups through advice, materials, and networking opportunities with other successful groups and individual leaders.
- Providing a website-based communications link through which people with narcolepsy can ask questions and seek guidance, while helping individuals both to discover if they have narcolepsy and to manage their symptoms.
- Publishing a members’ only quarterly newsletter and educational material about narcolepsy and coexisting sleep disorders. These publications, available from Narcolepsy Network, Inc., cover subjects from explaining narcolepsy to children to issues like work and school accommodations and driving with narcolepsy.
- Sponsoring an annual conference that brings together people with Narcolepsy for peer support and presentations from leading narcolepsy experts on the newest advances in the recognition, diagnosis, and treatment of narcolepsy. The Network welcomes people with narcolepsy, family, friends, and other caregivers to the conferences. Each year, the conference is held in a different part of the country to allow participants from all parts of the U.S. to attend.