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What
behavioural 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. 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 car 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.
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