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% of Narcoleptics are initially misdiagnosed and many go undiagnosed for more than ten years.
5. 75% 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.
In this day and age, there is no reason for people to go undiagnosed and untreated for this disorder. 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% of primary care providers said they felt comfortable diagnosing Narcolepsy. Obviously, this needs to improve if we are going to have a significant impact on this devastating disease.