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 message about when to sleep and when to be awake sometimes hit road blocks or detours and arrive in the wrong place at the wrong time. This is why someone who has narcolepsy not managed by medication may fall asleep while eating dinner or driving a car – or at times when he or she wants to be awake.
Narcolepsy is a genetic disorder, meaning it runs in families. However, what causes narcolepsy is not yet known. 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. Often 10 – 15 years pass between the onset of symptoms and diagnosis.
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 to total collapse. It is commonly triggered by intense emotion (laughter, anger) 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 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 behaviour – familiar, routine or boring tasks performed without full awareness or later memory of them.
In addition to a medical history and physician examination, a diagnosis is made from 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.
The best treatment plan is the one that works for you. Treatment with medications is the first line of defense. Changes in behaviour combined with drug treatment have helped most persons with narcolepsy improve their alertness and enjoy an active lifestyle.
Doctor generally prescribe stimulants to improve alertness and antidepressants to control cataplexy, hypnagogic hallucinations and sleep paralysis. Some of the most common side effects of stimulants are headache, irritability, nervousness, insomina, irregular heart beat and mood changes.
A new wake-promoting drug, modafinil, has been approved for use in treating the excessive daytime sleepiness associated with narcolepsy. 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.
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.
Sleep hygiene and naps
Doctors generally agree that drug treatment is only one element of narcolepsy management. Changes in behaviour to encourage good nighttime sleep are important too. Try to
- Avoid caffeine, nictoine and alcohol in the later afternoon or evening,
- Exercise regularly, but at least three hours before bedtime.
- Not use your bed for any waking or unrelaxing activities,
- Establish a routine time for going to bed and getting and follow it regularly, and more importantly, enough sleep at night.
Some sleep specialists recommend several short daily naps along with drug treatment to help control excessive sleepiness and sleep attacks. This is specifically for patients with narcolepsy and contradictory to what is generally advised to other patients. If naps help you, set aside at least 20 – 40 minutes for sleep. Be sure you have time to wake up fully. Remember no studies have shown that daytime naps and good nighttime sleep are as effective as stimulants or other wake-promoting drugs for people with narcolepsy.
Living with narcolepsy
The symptoms of narcolepsy can often be effectively managed so that you do not miss the normal activities of life.
- Discuss any changes in your symptoms and possible side effects of medications with your doctor.
- Develop your own ways to cope with symptoms and cataplexy triggers.
- Schedule regular nap times.
- Seek out counselling, alone or with your family (A mental health professional may prove very helpful if your symptoms or emotions are overwhelming).
Learning with narcolepsy
Because symptoms of narcolepsy may appear as early as age ten, some persons with narcolepsy must learn early on how to deal with the disorder while in school. With a good treatment plan and support from family, friends, and teachers, persons with narcolepsy can do well in school. Educating teachers and classmates can help. Parents can help by bringing their child’s needs to the attention of school personnel (teachers, principal, or guidance counselor) as needed.
Working with narcolepsy
Persons with narcolepsy can find career success and job satisfaction. Persons treated for narcolepsy have successfully worked as doctors, lawyers, researchers and in other professional opportunities. Look for jobs that keep you active and busy, let you interact with others, keep you on the move, and allow a flexible schedule.
Narcolepsy and driving
You may need to drive to school or work, or as part of your job. The good news is that diagnosed and medically treated persons with narcolepsy appear no more at risk for crashes than the general public. However, like all drivers, narcoleptics should also be concerned about sleepiness behind the wheel.
- Do not drive or operate dangerous equipment if you are sleepy.
- Take a nap before driving, if possible.
- If you need a nap while on the road, find a safe place to pull over.
- Schedule trips to occur soon after you have taken your stimulant or wake promoting medication.
- Stimulating food and drink (chocolate, coffee, cola) may provide a short-term boost in alertness.
Narcolepsy and personal life
The symptoms of (and some of the drugs taken for) narcolepsy may affect your sex life or decision about having children. Sexual problems, such as low sex drive and impotency, may result from severe sleepiness, depression, medications or cataplectic attacks. These problems, especially any resulting from a new medication or changed dosage, should be discussed with your doctor.
A woman with narcolepsy who is pregnant (or is thinking about becoming pregnant) should speak to her doctor about the possible effects of her medication on the fetus. The emotional, physical and psychological demands of having a child should also be considered. Keep in mind that many women with narcolepsy do have healthy children and manage parenting successfully.