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FAQs

The following statements are for informational purposes only; should not be taken as medical diagnosis, treatment or advice; and are not a substitute for examination and care provided by licensed physicians.

Question: What is Narcolepsy?

Answer:  Narcolepsy is a neurological disorder that impacts 1 in approximately 2,000 people in the United States. Many people are unaware of the condition and go undiagnosed. The disease is a sleep disorder, involving irregular patterns in Rapid Eye Movement (REM) sleep and significant disruptions of the normal sleep/wake cycle. Narcolepsy can affect all areas of a person’s life including relationships with family and friends, education and employment, driving and public outings. While the cause of Narcolepsy is not completely understood, current research points to a combination of genetic and environmental factors that influence the immune system.

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Question: What causes Narcolepsy?

Answer:  Scientists have confirmed that Narcolepsy with cataplexy is caused by the loss of the two brain chemicals called hypocretins (orexins). These are neurotransmitters involved in the regulation of the sleep/wake cycle as well as other bodily functions (e.g., blood pressure and metabolism). The cause(s) of Narcolepsy without cataplexy are unknown. Further research is needed to determine why hypocretin cells are destroyed and to identify the exact trigger(s) of both forms of Narcolepsy.

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Question: Is Narcolepsy inherited?

Answer: There appears to be some genetic predisposition to developing Narcolepsy with cataplexy, the most common form. About one quarter of the general population in the U.S. carries the HLA-DQB1* o602 genetic marker but only one person out of about 500 of these people will develop this form of Narcolepsy.

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Question: Does Narcolepsy affect learning?

Answer: Although Narcolepsy does not affect intelligence, learning is sometimes affected by the symptoms. Study, concentration, memory, and attention span may be periodically impaired by sleep. Adjustments in study/work habits may be continually necessary. This can best be accomplished with the cooperation of school and employer personnel.

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Question: How common is Narcolepsy?

Answer: It is estimated that there are over 200,000 persons with Narcolepsy in the United States, but only about 25%, or 50,000 of them, have been diagnosed. On average it takes over seven years from onset of symptoms until a diagnosis is established.

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Question: Is Narcolepsy limited to certain groups of people?

Answer: Incidence of Narcolepsy can vary by ethnic group. The highest occurrence is found among the Japanese at one in about 600 and the lowest rate is among Israeli Jews at one in about 500,000.  Narcolepsy affects both men and women equally.

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Question: At what age do people get Narcolepsy?

Answer: Although any person can develop Narcolepsy at any age, the typical onset is in the second to third decade (between 10 – 30 years of age) of life.

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Question: Can Narcolepsy be cured?

Answer: Currently no cure for Narcolepsy exists, nor any way to replace the missing Hypocretin. Treatment of Narcolepsy aims to relieve the symptoms. The symptoms of Narcolepsy can vary greatly from one person to another, as can the treatments and their effectiveness.

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Question:What are the symptoms of Narcolepsy?

Answer:  Narcolepsy has five primary symptoms:

  • Excessive Daytime Sleepiness (EDS) – An overwhelming sense of tiredness and fatigue throughout the day
  • Cataplexy (C) – Events during which a person has no reflex or voluntary muscle control. For example knees buckle and even give way when experiencing a strong emotion – laughter, joy, surprise, anger or heads drop or jaws go slack from the same kind of stimuli
  • Sleep paralysis – A limpness in the body associated with REM sleep resulting in temporary paralysis when the individual is falling asleep, or awakening. Episodes can last from a brief moment to several minutes.
  • Hypnogogic hallucinations – Events of vivid audio and visual events that a person with narcolepsy experiences while falling asleep, or while awakening
  • Disrupted Nighttime Sleep (DNS) – The inability to maintain sleep for more than a few hours at a time.

Other symptoms reported by people with Narcolepsy can include:

  • Automatic Behavior (AB) – The performance of tasks that are often routine, dull or repetitive without conscious effort or memory.
  • Memory Lapses – Difficulty in remembering recent events, actions or words

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Question: Is cataplexy dangerous?

Answer: Mild cataplexy 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 then allowing him or her to recover naturally. Cataplexy for some can be instantaneous with no time to prepare for safety, and injury may occur. Potentially life-threatening situations should be avoided unless cataplexy is fully controlled.

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Question: Do I have Narcolepsy?

Answer:  Because of much misunderstanding and misinformation, many people think that any prolonged Excessive Daytime Sleepiness is Narcolepsy. This is not true. There are a large number of medical, behavioral, and Sleep Disorders that have sleepiness as a symptom. Narcolepsy is a complex medical diagnosis that can only be diagnosed by a physician.

To help you and your doctor determine if you have Narcolepsy or other Sleep Disorder, fill out the Epworth Sleepiness Scale form  and take it with you to your Primary Care Physician.

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Question: How is Narcolepsy diagnosed?

Answer: Narcolepsy is diagnosed through a sleep study, a set of medical tests including an overnight Polysomnogram (PSG) and a Multiple Sleep Latency Test (MSLT). Even when cataplexy is clearly present, a sleep study is necessary to rule out sleep apnea and other possible sleep disorders contributing to EDS.

Narcolepsy often takes years to recognize in patients. Many medical conditions result in fatigue, thus physicians might not consider Narcolepsy. While new discoveries are being made about Narcolepsy and other sleep disorders, life with Narcolepsy remains challenging for many people with the condition. Narcolepsy Network hopes that the information, resources, and support provided here on our site and elsewhere through conferences and events will provide people with Narcolepsy both hope and a voice.

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Question: How is Narcolepsy treated?

Answer: There are three approaches to treatment:

  • Modern medications
  • Lifestyle adjustments
  • Complimentary or alternative therapy

By combining these approaches and balancing between treatments for Sleepiness and REM Intrusion, optimal control of symptoms can be reached. It is best to be under the care of a physician who is specially trained, Certified in Sleep Medicine, Board Certified in Neurology and experienced in treating Narcolepsy. Check out the Treatment section for more information.

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Question: What is Narcolepsy Network?

Answer:  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.  Our primary focus is to:

  • Educate and inform individuals with Narcolepsy about this life-long neurological sleep disorder, available treatments and symptom management so they may be empowered to achieve the highest quality of life possible;
  • Provide emotional support and resources to patients, family members, and friends;
  • Encourage and assist in the formation of local support groups and other support systems;
  • Serve as a resource center for patients, medical and providers, educators, employers, and members of the public;
  • Advocate for the interests of all persons with Narcolepsy;
  • Promote early diagnosis, optimal treatment and scientific research;
  • Increase public awareness of Narcolepsy

Join Narcolepsy Network today and become involved in improving your own life and the quality of life of others like you. Our membership is open to all who share an interest in Narcolepsy and other sleep disorders.

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