 Updated June 2004 What is narcolepsy?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.
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. Top of page Major symptomsExcessive 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:
Top of page Diagnosing NarcolepsyIn 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. Top of page Treatment optionsThe 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. Top of page Common medications and side effectsDoctors 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.
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.
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. Top of page Sleep hygiene and naps
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. Top of page Living with narcolepsyThe symptoms of narcolepsy can often be effectively managed so that you do not miss the normal activities of life. NSF experts recommend the following: 
Top of page Learning with narcolepsyBecause 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. All schools that receive federal funds must, by law, offer the same basic programs and services to all students. Young people with narcolepsy can enjoy the same advantages as their peers while receiving any needed special assistance. The Individuals with Disabilities Education Act (IDEA) directs schools to plan for "disabled" students' success in school. It requires public schools to focus on improving rates of secondary school graduation, college attendance and job placement of students with special needs. Parents can help by bringing their child's needs to the attention of school personnel (teachers, principal, school nurse or guid-ance counselor) as needed. The special education services available to children with narcolepsy differ from state to state and, in many cases, from school to school. Many of the same academic challenges that gradeschoolers face apply to students at the high school and college level. At these levels, however, peer pressure and questions about the future multiply. To manage narcolepsy and school better:
Top of page Working with narcolepsyPersons with narcolepsy can find career success and job satisfaction. Treated persons with narcolepsy can work in almost all areas of employment from unskilled to professional. Look for jobs that will allow you to manage your symptoms. For many, a job requiring regular driving and/or long commutes is troublesome. Also, look for jobs that keep you active and busy, let you interact with others, keep you on the move, and allow a flexible schedule. Thanks to federal laws including the Americans with Disabilities Act (ADA), your employer must make reasonable accommodations for you at work so you can adequately do your job - modifying your schedule, changing your work location or job duties and providing permission for short naps, for example. And while it is not necessary to inform your employer of your narcolepsy, you must do so before your symptoms begin to interfere with your duties or if you take prescriptive medications on a job with required drug testing. (An uninformed employer cannot be said to discriminate.) The ADA applies to all aspects of employment, including hiring, promotion, leave, termination, and compensation. If you work for a company employing more than 50 people, the Family and Medical Leave Act may allow you up to 12 weeks away from work without pay to care for your own health condition or that of an immediate family member. If you are unable to work at all, you (and sometimes children under age 18) may qualify for Social Security Disability Insurance or Supplemental Security Income. The former is based on age, number of years worked, and salary during those years. The later is for those without sufficient prior earnings. Your doctor, lawyer, and/or company personnel administrator can help you determine which laws, if any, apply to your situation, as well as when and how to file claims. Top of page Narcolepsy and drivingYou 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. If your state restricts driving by people with narcolepsy, proving that you can remain alert may help you get (or keep) your driver's license. This may require a letter from your doctor, whom you should keep informed about your ability to drive safely. All drivers should be concerned about sleepiness behind the wheel and plan ahead for proper breaks as follows:
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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.
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.
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.
Doctors generally agree that drug treatment is only one element of narcolepsy symptom management. Changes in behavior to encourage good nighttime sleep are important too. Try to:
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. The school nurse or health center should know about narcolepsy symptoms and medications as well. Many schools have strict guidelines for where a student may keep his or her medications (in the school nurse's office rather than in a student locker or backpack) and when he or she may take them (only under supervision).
Narcolepsy symptoms can also result in a change or loss of employment, physical restrictions and social withdrawal. Loss of self-esteem, learning difficulties and depression can result.
