In this day and age, there is no reason for people to go undiagnosed and
untreated for narcolepsy. We need to increase not only the public's,
but also the medical profession's awareness of this disorder. Sadly, in a
recent survey called the AWAKEN Survey dealing with physician knowledge
and diagnosis of narcolepsy, only 9 percent of primary care providers
said they felt comfortable diagnosing it. Obviously, this needs to
improve if we are going to have a significant impact on this devastating
disease.
Here's what you need to know:
1. Narcolepsy is a
chronic neurologic disorder resulting in severe sleepiness in about 1
of every 2,000 Americans. It is second only to sleep apnea as a cause of
daytime sleepiness. It is due to the loss of cells in the hypothalamus
that produce the wake-promoting neurotransmitter hypocretin (orexin).
2.
We do not know what triggers it. However, genetic, autoimmune, and
infectious causes have been suggested. We do know that destruction of
nerve cells that produce the neurotransmitter hypocretin is the root
cause in the majority.
3. The peak age of onset is from 15 to 25 years of age. Still, it can present as early as 5 years old or as late as 40.
4. 60 percent of narcoleptics are initially misdiagnosed and many go undiagnosed for more than ten years.
5.
75 percent of people with narcolepsy have cataplexy -- defined as a
sudden and transient loss of muscle tone, usually in response to
emotions such as laughter, anger, or surprise. This symptom usually, but
not always, develops after excessive sleepiness has begun.
6.
One third of people with narcolepsy experience vivid dream-like
hallucinations called hypnogogic hallucinations when they are falling
asleep or while awakening. This is frequently accompanied by temporary
paralysis known as sleep paralysis.
7. One third of narcoleptics have associated anxiety and depression.
8. Most narcoleptics have disturbed sleep because of frequent shifts from sleep to awakenings throughout the night.
9.
Narcolepsy can easily be diagnosed using a test called an MSLT
(Multiple Sleep Latency Test), available in most sleep centers. The key
is evaluation by someone who recognizes the symptoms and makes the
appropriate referral.
10. Narcolepsy is treatable. There are several excellent therapies available with more on the way.
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