“All About Narcolepsy”
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Narcolepsy is 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.
This is why someone who has narcolepsy, not managed by medications, may fall asleep while eating dinner or engaged in social activities - or at times when he or she wants to be awake.
Recent discoveries indicate that people with narcolepsy lack a chemical in the brain called hypocretin, which normally stimulates arousal and helps regulate sleep.
They also discovered that there is a reduction in the number of Hcrt cells or neurons that secrete hypocretin. This may be due to a degenerative process or an immune response. How this occurs is unknown.
About one in 2,000 people suffers from narcolepsy. It affects both men and women of any age, but its symptoms are usually noticed after puberty begins. For the majority of persons with narcolepsy, their first symptoms appear between the ages of 15 and 30.
Major symptoms
Excessive daytime sleepiness is usually the first symptom to appear, and often the most troubling. It is an overwhelming and recurring need to sleep at times when you want to be awake. In addition to sleepiness, key symptoms of narcolepsy can include regular episodes of:
cataplexy - a sudden loss of muscle control ranging from slight weakness (head droop, facial sagging, jaw drop, slurred speech, buckling of knees) to total collapse. It is commonly triggered by intense emotion (laughter, anger, surprise, fear) or strenuous athletic activity. Most persons with narcolepsy have some degree of cataplexy.
sleep paralysis - being unable to talk or move for a brief period when falling asleep or waking up. Many persons with narcolepsy suffer short-lasting partial or complete sleep paralysis.
hypnagogic hallucinations - vivid and often scary dreams and sounds reported when falling asleep. People without narcolepsy may experience hypnagogic hallucinations and sleep paralysis as well.
automatic behavior - familiar, routine or boring tasks performed without full awareness or later memory of them.
Diagnosing Narcolepsy
In addition to a medical history and physician examination, a diagnosis is made from polysomnogram tests in an overnight sleep laboratory to measure brain waves and body movements as well as nerve and muscle function.
A diagnosis also includes the results of the Multiple Sleep Latency Test (MSLT), which measures the time it takes to fall asleep and to go into deep sleep while taking several naps over a period of time.
Many physicians are not familiar with identifying the symptoms and diagnostic procedures specific to narcolepsy. Often, these symptoms are associated with other disorders.
Asking for a referral to a sleep specialist or sleep center will avoid the delay in both diagnosis and treatment so often experienced by those who suffer from this serious disorder.
Treatment options
The best treatment plan is the one that works for you. Treatment with medications is the first line of defense.
The goal in using medications should be to approach normal alertness while minimizing side effects and disruptions to daily activities.
Changes in behavior combined with drug treatment have helped most persons with narcolepsy improve their alertness and enjoy an active lifestyle.
Common medications and side effects
Doctors generally prescribe stimulants to improve alertness and antidepressants to control cataplexy, hypnagogic hallucinations and sleep paralysis.
Common stimulants include: dextroamphetamine sulfate (DexedrineTM), methylphenidate hydrochloride (RitalinTM), and pemoline (CylertTM). Methamphetamine hydrochloride (DesoxynTM) is prescribed less frequently for narcolepsy.
Some of the most common side effects of stimulants are headache, irritability, nervousness, insomnia, irregular heart beat, and mood changes.
A wake-promoting drug, modafinil (ProvigilTM) was approved by the U.S. Food and Drug Administration (FDA) in 1999 for use in treating the excessive daytime sleepiness associated with narcolepsy.
It does not act as a stimulant for other body systems and studies have shown that modafinil is effective in improving alertness with few side effects and low abuse potential.
Several classes of antidepressants are prescribed to treat cataplexy, hypnagogic hallucinations and sleep paralysis.
One class, multicyclics, includes imipramine (TofranilTM), desimpramine (NorpraminTM), clomipramine (AnafranilTM), and protriptyline (VivactilTM).
Another class are selective serotonin re-uptake inhibitors (SSRIs). These include fluoxetine (ProzacTM), paroxetine (PaxilTM), and sertraline (ZoloftTM).
Side effects vary from one class of antidepressants to another. Those most often reported are drowsiness, sexual dysfunction and lowered blood pressure. In a small percentage of patients, SSRIs cause overexcitement, anxiety, insomnia, nausea and reduced sexual drive.
Sodium oxybate (XyremTM) is the first and only FDA-approved medication for the treatment of cataplexy associated with narcolepsy. It produces consolidation of sleep and improvement of disturbed nighttime sleep characteristic of narcolepsy.
It is sedating and should only be used at night. Xyrem is a Schedule III controlled drug substance with abuse potential that is available by prescription.
Narcolepsy patients who have other health conditions (like high blood pressure, heart disease or diabetes) should ask their doctor or pharmacist how medications for those conditions may interact with those taken for narcolepsy. If you take over-the-counter cold and allergy medications, keep in mind that they may make you sleepy.
Narcolepsy is a rare condition that affects approximately 0.05% of the population, with symptoms peaking between the ages of 15 and 20.
Narcolepsy is marked by excessive daytime sleepiness which can be so severe that it interferes with functioning and sometimes results in unexpected “sleep attacks.”
People with narcolepsy often report the associated symptoms of sleep paralysis, hypnogogic hallucinations, cataplexy, and automatic behavior.
Sleep paralysis usually occurs when the sleeper is lying in bed prior to sleep onset or after awakening.
He or she is unable to move for a few seconds, minutes, or longer. Sometimes sleepers can move only their eyes. The episodes are generally harmless, although they can result in genuine distress for the sufferer.
Narcolepsy is 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.
This is why someone who has narcolepsy, not managed by medications, may fall asleep while eating dinner or engaged in social activities - or at times when he or she wants to be awake.
Recent discoveries indicate that people with narcolepsy lack a chemical in the brain called hypocretin, which normally stimulates arousal and helps regulate sleep.
They also discovered that there is a reduction in the number of Hcrt cells or neurons that secrete hypocretin. This may be due to a degenerative process or an immune response. How this occurs is unknown.
Hypnogogic hallucinations also generally occur when the sleeper is lying in bed prior to sleep onset or after awakening. The sufferer may experience auditory, visual, tactile, or olfactory (smell) hallucinations for brief periods.
People sometimes describe these as brief, dreamlike experiences. Although these experiences are not concerning to many, some people can have terrifying or disturbing hallucinations that cause them great distress.
Cataplexy is characterized by the sudden loss of muscle tone while awake. The sufferer may experience a mild, transient drop in muscle tone (e.g., a droopy arm or periods of clumsiness associated with dropping things), or may experience severe loss of muscle tone that literally results in falling to the floor, and speech can be affected during the attacks.
Cataplexy often is brought on by stress, fatigue, or the experience of intense emotion such as anger or laughter. Narcolepsy and cataplexy are so rare that healthcare providers often fail to accurately diagnose the problem.
Automatic behavior refers to actions for which the person has no memory. Sometimes the sufferer reports that she is acting in a “fog.” For example, one woman with narcolepsy entered her dining room to find a beautiful vase on her table.
She had no idea where it came from until she looked at her checkbook and realized that she had purchased it on a recent shopping trip. Both the vase and the shopping trip had been forgotten! Automatic behavior probably is due to severe sleepiness.
Narcolepsy often is diagnosed in a sleep laboratory facility. One diagnostic indicator of narcolepsy is the occurrence of rapid-eye-movement (REM) sleep on daytime nap testing.
Narcolepsy usually is treated with stimulant medication to address daytime sleepiness, and tricyclic or other medications to address sleep paralysis, hypnogogic hallucinations, and cataplexy. These medications include stimulants such as methylphenidate
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