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Narcolepsy: Frequently Asked Questions

What is narcolepsy?

Narcolepsy is a neurological disorder typically characterized by severe daytime sleepiness or by sleep attacks, events in which a person falls asleep uncontrollably and with little warning. It is caused by a dysfunction in the section of the brain which controls when a person enters a stage of sleep called Rapid Eye Movement (REM) sleep. It is controllable and is usually treated with medication. More information can be obtained from your physician or the American Sleep Disorders Association .
This is a sleep disorder of unknown origin. It is characterized by excessive daytime sleepiness, sleep attacks (uncontrollable need to sleep), sometimes sleep paralysis, hypnoingic hallucinations (dreamlike state when first falling asleep) and cataplexy (loss of muscle tone, often following emotional stimulus such as laughing, crying, etc.) This ...
Narcolepsy is one of the well known sleep disorders, even though it is not related with other sleep disorders, such as insomnia or the well known symptoms sleep apneas have. Narcolepsy is a physical condition that is characterized by episodes of inappropriate and often involuntary sleep in the form of short naps that can last from 30 seconds to approximately 30 minutes. These narcolepsy symptoms can occur any time during the day, even during routine activity at the office, in the car, etc.
Narcolepsy is a neurological disorder of sleep regulation that affects the control of the stages of sleep and wake, where REM sleep is not associated with the other stages of sleep or wake. Instead of the normal sleep cycle, where it takes 90-120 minutes for someone to go into REM sleep, REM sleep could come anytime, even during wake.
Narcolepsy is a neurological sleep disorder that can begin at any age and continues throughout life. It frequently becomes noticeable during the teens or early twenties, but it can also appear later in life. Predisposition to it seems to be hereditary. It is believed to affect approximately 1:1000 people of both sexes and all races. It is not degenerative; people with narcolepsy can expect to live a normal life span.

Narcolepsy?

A chronic (long-lasting) neurological (affecting the brain or nerves) disorder that involves your body's central nervous system. The central nervous system is the "highway" of nerves that carries messages from your brain to other parts of your body. For people with narcolepsy, the messages about when to sleep and when to be awake sometimes hit roadblocks or detours and arrive in the wrong place at the wrong time. ...

What is Narcolepsy Network?

We are a national non-profit corporation which was founded in 1986. Our members include individuals with narcolepsy, their families and friends, and professionals involved in the study and treatment of narcolepsy.

Does narcolepsy affect learning?

Although narcolepsy does not directly affect one’s intelligence, learning and education 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 avoid lowered self-esteem and a pattern of failure adjustments in learning habits may be continually necessary. This can be accomplished with the cooperation of school personnel.
Although narcolepsy does not directly affect one's intelligence, learning and education 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 avoid lowered self-esteem and a pattern of failure. Adjustments in learning habits may be continually necessary. This can only be accomplished with the cooperation of school personnel.
Narcolepsy, although do not affect your intelligence, learning and education directly but you are affected by the symptoms. Due to the sleep disruption, concentration, study, memory and attention are affected. If your child is having narcolepsy, it should be identified in early stages to avoid lowered self-esteem and failure patterns. Learning habits should be adjusted and it should be accompanied with the cooperation of school personnel.

What is the treatment for narcolepsy?

There is no cure for narcolepsy; however, the symptoms can be controlled with behavioral therapy and medications.

How is narcolepsy diagnosed?

Your doctor may want you to have an overnight sleep study done in a sleep lab, to see if there are other sleep disorders that need to be treated first. If there are none noted you may be required to stay for a Multiple Sleep Latency Test (MSLT), where you’ll be asked to try to take a nap, about every 2 hrs throughout the day, and try to stay awake between nap trials.
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. ...

Are narcolepsy medications addictive?

When taken correctly, in the prescribed dosage, narcoleptics do not become addicted to their medication.

Can Narcolepsy be cured?

No, not at this time, but with appropriate medication and correct eating habits, a person with narcolepsy can live a good life.

What is the cause of narcolepsy?

Recent studies have shown that narcolepsy with cataplexy is usually caused (>90%) by the lack of two related brain chemicals called " hypocretin-1 " and " hypocretin-2 " The cause of narcolepsy without cataplexy is still under investigation.

How is HLA involved in narcolepsy?

No one knows for sure. A large number of other diseases (>80) like Multiple sclerosis or Juvenile Onset (type I) Insulin Dependent Diabetes Mellitus are also associated with specific HLA subtypes. Most of these diseases are autoimmune disorders .

How is narcolepsy treated?

Treatment of narcolepsy is primarily dependent on the severity of the individual symptoms. For example, patients who have severely fragmented sleep and awaken exhausted will often require medications to assist in a good night's sleep. Excessive Daytime Sleepiness is often treated with stimulant medications which, unfortunately, may further worsen nocturnal sleep. Cataplexy is treated with tri-cyclic antidepressants. Other "therapies" are listed below:
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. ...

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. ...

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 are the long-term problems of narcolepsy?

The consequences of narcolepsy may be many and far reaching. Sleep attacks and cataplexy in public are embarrassing and can cause serious social and economic difficulties. Cataplexy may interfere with physical activities, and efforts to avoid emotions may lead to social withdrawal. Inability to work and/or drive may result in loss of independence, financial difficulties and a multitude of other problems. In these situations, a person can easily lose touch with others and become depressed.
The consequences of narcolepsy may be many and far-reaching. Sleep attacks and cataplexy in public are embarrassing and can cause serious social and economic difficulties. Cataplexy may interfere with physical activities, and cause efforts to avoid emotions, which may lead to social withdrawal. Inability to work and/or drive may result in loss of independence, financial difficulties and a multitude of other problems. In these situations, a person can easily lose touch with others and become depressed. ...

How are these symptoms all related to narcolepsy?

Narcolepsy is related to REM (rapid eye movement) sleep, the dreaming portion of sleep. As a protection against acting out dreams, the muscles become immobile or “paralyzed”. For the normal person, a sleep period first progresses for about 90 minutes of non-REM sleep and then REM sleep begins. But for a person with narcolepsy, sleep begins almost immediately with REM sleep. ...
Narcolepsy is related to REM (rapid eye movement) sleep, the dreaming portion of sleep. As a protection against acting out dreams, the muscles become immobile or "paralyzed. " For the normal person, a sleep period first progresses for about 90 minutes of non-REM sleep and then REM sleep begins. But for a person with narcolepsy, sleep begins almost immediately with REM sleep. ...

How is a diagnosis of narcolepsy determined?

Excessive daytime sleepiness (EDS) is often the first symptom to appear, and for some, the ONLY symptom of narcolepsy. However, it is also a symptom of various other medical conditions. Cataplexy, on the other hand, is almost unique to narcolepsy. The combination of EDS and cataplexy allow clinical diagnosis of narcolepsy, but the presence of cataplexy is not required for a diagnosis of narcolepsy. In most cases, laboratory tests are still needed to confirm diagnosis and determine a treatment plan. ...
Excessive daytime sleepiness (EDS) is often the first symptom to appear; and, for some, the only symptom of narcolepsy. However, it is also a symptom of various other medical conditions. Cataplexy, on the other hand, is almost unique to narcolepsy. The combination of EDS and cataplexy allow clinical diagnosis of narcolepsy. However, laboratory tests are still needed both to confirm diagnosis and plan treatment. ...

Is narcolepsy a psychological or mental disorder?

No. Narcolepsy is a neurological disorder with an unknown physical cause. Nevertheless, psychological problems can develop from misunderstanding of and difficulty in coping with the symptoms. A very difficult fact for one with narcolepsy and those around him or her to understand is that sleepiness and sleep attacks are uncontrollable. Failure to accept this may seriously influence self-esteem or personal relationships. ...

What medications are used to treat narcolepsy?

Please contact the NODSS Nurse-Counsellor for more information (see ' contacts ' page).
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