It is important to increase not only the public’s awareness of narcolepsy, but also those in the medical profession. A recent survey called the AWAKEN Survey, which dealt with physician and diagnosis of narcolepsy, revealed that only 9% of primary care providers said they felt comfortable diagnosing it.
Here’s what you need to know:
1. Narcolepsy is a chronic neurologic disorder that causes severe sleepiness due to the loss of cells in the hypothalamus that produce the wake-promoting neurotransmitter hypocretin (orexin). It affects about 1 of every 2,000 Americans and is the second common cause of daytime sleepiness, with sleep apnea being in first place.
2. Researchers do not know what triggers narcolepsy, but genetic, autoimmune, and infectious causes have been suggested. However, they 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 old, but it can present as early as age 5 or as late as age 40.
4. 60% of narcoleptics are initially misdiagnosed and many go undiagnosed for more than 10 years.
5. 75% of people with narcolepsy also have cataplexy – defined as a sudden and transient loss of muscle tone, usually in response to emotions such as laughter, anger, or surprise. Usually, this symptom develops after excessive sleepiness has begun.
6. 1/3 of people with narcolepsy experience vivid dream-like hallucinations called hypnogogic hallucinations, when they are falling asleep or while awakening. Frequently is accompanied by temporary paralysis known as sleep paralysis.
7. 1/3 of narcoleptic 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 several excellent therapies available with more on the way