Narcolepsy Narcolepsy

Narcolepsy

Narcolepsy is a disorder in which the normal boundary between being awake and being asleep is blurred, causing excessive sleepiness during the day. According to the National Institute of Neurological Disorders and Stroke, about 175,000 to 200,000 people — men and women are equally affected — in the United States suffer from this disorder. This number may be low, because the condition often goes undiagnosed.

Diagnosis is critical, because without the recognition of the condition, many of the symptoms have an effect on how you are treated by your family, at your workplace and within society in general.

Symptoms

Symptoms often appear in childhood and young adulthood, but the disorder can occur at any time.

Symptoms include:

  • Excessive sleepiness, which results in unplanned napping during the day
  • Sleep paralysis, where you are unable to move or speak when in the state of awakening or falling asleep
  • Hallucinations when not quite awake
  • Cataplexy, or the partial or total loss of muscle control caused by extreme emotion; laughter is the most common trigger. Not everyone who has narcolepsy experiences all of these symptoms; the most common symptom is the overwhelming need to sleep during the day. Many of the symptoms relate to the confusion of the sleep and awake states and where the rapid eye movement (REM) stage of sleep appears.

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Causes

The root cause of narcolepsy when cataplexy is present is the loss of a chemical in the brain called hypocretin. Hypocretin’s role is to act as an alerting system in the brain, and it works to help regulate sleep and wake cycles. There is an autoimmune disorder component: this chemical is located in cells in the hypothalamus, and in people with narcolepsy, it is thought that the body is attacking itself, and those cells are damaged or destroyed.

Other factors can be family history, as some people with narcolepsy have clusters of relatives who also have the condition; many people with it, though, do not.

Current research has determined that there is a genetic factor that is most likely triggered by an environmental factor.

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Living Better

One of the best ways to live better with narcolepsy is to make sure that the important people in your life know about your condition and have the same facts that you do. This is critical in both the home and work environments, because the way you function throughout the day is not necessarily going to be similar to the way the rest of your family does or your coworkers do.

If your child has been diagnosed with narcolepsy, talk to his or her teachers and school nurse about what it means. As with many conditions, knowledge is a tool and a great reliever of stress and anxiety. Support groups, counseling, and educational networks can be of great help.

Sleep hygiene, important for the general public, is also of great importance to you if you have narcolepsy. Find tips for better sleep here. Sticking to a strict sleep schedule; taking preemptive naps; avoiding heavy meals in the middle of the day; and exercising should all be part of your routine.

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Exams and Tests

At St. Luke’s, your health care provider will perform a physical exam and take a family history. You’ll talk about your symptoms and decide what the best plan of action might be. You may be asked to keep a sleep diary, and your physician may determine that a sleep study would provide the best information and give you a starting point on which to base the correct treatment.

For diagnosis of narcolepsy, there are two sleep tests that are generally administered:

  • A polysmonogram (PSG) measures nighttime sleep; it records brain and muscle activity, breathing pattern, and eye movement.
  • A multiple sleep latency test  (MSLT) measures daytime sleepiness; the test is administered a few times during the day, with planned naps around periods of wakefulness.

In both tests, attention is paid to when the REM stage of sleep begins. In those with narcolepsy, it often starts very quickly, without the precursor stage found in those with normal sleep patterns.

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Treatment

A combination of medicine and lifestyle treatments can make life with narcolepsy smoother.

Medication

Medicines that act on the central nervous system are generally turned to first; these work to improve alertness and reduce sleepiness and include midafinil and armodafinil, both thought to affect dopamine production. Certain amphetamines have a similar affect, and can be given in both short-acting and long-acting forms.

Sodium oxybate can improve the quality of sleep at night, and also works to control cataplexy. Antidepressants, because they suppress REM sleep, may also be used to control cataplexy.

Lifestyle Changes

Scheduling naps, maintaining strict going-to-bed and waking times, and getting daily aerobic exercise can help you sleep better at night, which can prevent daytime sleepiness. Not smoking, and avoiding caffeine and alcohol at night is also important.

If you have narcolepsy, you also have to take proper safety precautions. If you have to take a long drive, make sure you have scheduled breaks for a nap and that your medicine schedule allows for it so that you don’t fall asleep at the wheel. If you experience cataplexy, make sure that those around you are aware of what happens, and keep your environment safe for a sudden fall.

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