At various times throughout the day, people with narcolepsy experience fleeting urges to sleep. If the urge becomes overwhelming, individuals will fall asleep for periods lasting from a few seconds to several minutes. Interestingly, Narcolepsy is not definitively diagnosed in most patients until 10 to 15 years after the first symptoms appear.
What is Narcolepsy?
Narcolepsy is a chronic (long-lasting) neurological (affecting the brain or nerves) disorder that involves your body's central nervous system. 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.
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 people 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 people 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. Most people 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 gathering your medical history and a physical exam, the team at North Dakota Center for Sleep can diagnosis Narcolepsy from a polysomnogram test. This test in completed in our overnight sleep laboratory. It measures brain waves and body movements as well as nerve and muscle function.
Since many general physicians are not familiar with diagnosing narcolepsy, seeing a sleep specialist early will expedite the process of getting treatment.
Treatment Options
Medications are the first line of defense in treating narcolepsy. 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 people with narcolepsy improve their alertness and enjoy an active lifestyle.
Sleep Hygiene and Naps
In addition to drug therapy, changes in behavior will help manage narcolepsy:
- Avoid caffeine, nicotine and alcohol in the late afternoon or evening
- Exercise regularly, but at least three hours before bedtime
- Use your bed only for relaxing activities
- Establish and follow a regular bedtime and wake-up routine
- Get eight hours of sleep nightly
Some sleep specialists recommend several short daily naps along with drug treatment to help control excessive sleepiness and sleep attacks. Others report that a single, long afternoon nap works well to improve a patient's alertness. If naps help you, set aside at least 20-40 minutes for sleep. Be sure you have time to wake up fully.
Living with Narcolepsy
Narcolepsy cannot be cured but it can be managed. Some techniques include:
- Discuss with your doctor changes in your symptoms and possible side effects of medications
- Develop your own ways to cope with symptoms and cataplexy triggers
- Schedule regular nap times
- Join a well-informed support group where you can share experiences and coping strategies
- Seek out counseling, alone or with your family—someone familiar with disabilities, can be helpful when you need to discuss personal, family and employment matters
Sharing Information about Narcolepsy
Since narcolepsy is often misunderstood,you should be prepared to educate others. As you become more knowledgeable about narcolepsy, consider sharing this information by conducting training sessions with police, hospital workers and others in your community.