What Behavioral Strategies Help People Cope With Symptoms?
None of the currently available medications enables people with Narcolepsy to consistently maintain a fully normal state of alertness. Thus, drug therapy should be supplemented by various behavioral strategies according to the needs of the individual patient.
To gain greater control over their symptoms, many patients take short, regularly scheduled naps at times when they tend to feel sleepiest. Adults can often negotiate with employers to modify their work schedules so they can take naps when necessary and perform their most demanding tasks when they are most alert. The Americans with Disabilities Act requires employers to provide reasonable accommodations for all employees with disabilities. Children and adolescents with narcolepsy can be similarly accommodated through modifying class schedules and informing school personnel of special needs, including medication requirements during the school day.
Improving the quality of nighttime sleep can combat EDS and help relieve persistent feelings of Fatigue. Among the most important common-sense measures patients can take to enhance sleep quality are: (1) maintaining a regular sleep schedule; (2) avoiding alcohol and caffeine-containing beverages for several hours before bedtime; (3) avoiding smoking, especially at night; (4) maintaining a comfortable, adequately warmed bedroom environment; and (5) engaging in relaxing activities such as a warm bath before bedtime. Exercising for at least 20 minutes per day at least 4 or 5 hours before bedtime also improves sleep quality and can help people with narcolepsy avoid gaining excess weight.
Safety precautions, particularly when driving, are of paramount importance for all persons with narcolepsy. Although the disorder, in itself, is not fatal, EDS and cataplexy can lead to serious injury or death if left uncontrolled. Suddenly falling asleep or losing muscle control can transform actions that are ordinarily safe, such as walking down a long flight of stairs, into hazards. People with untreated narcoleptic symptoms are involved in automobile accidents roughly 10 times more frequently than the general population. However, accident rates are normal among patients who have received appropriate medication.
Finally, patient support groups frequently prove extremely beneficial because people with narcolepsy may become socially isolated due to embarrassment about their symptoms. Many patients also attempt to avoid experiencing strong emotions, since humor, excitement, and other intense feelings can trigger cataplectic attacks. Moreover, because of the widespread lack of public knowledge about the disorder, people with narcolepsy are too often unfairly judged to be lazy, unintelligent, undisciplined, or unmotivated. Such stigmatization often increases the tendency toward self-imposed isolation. The empathy and understanding that support groups offer people can be crucial to their overall sense of well-being and provide them with a network of social contacts who can offer practical help and emotional support.
