I have officially been diagnosed with narcolepsy along with cataplexy. You're probably asking yourself "What is that?", but not worry, I will explain it to you. So here are 10 things you need to know about narcolepsy.
1. Narcolepsy is a chronic neurological 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 a wake-promoting neurotransmitter hypocretin. It can be described as, the part of my brain that is used to regulate my sleep and wake times does not function properly. So it confuses sleeping and waking time and intermixes them.
2. They don't know what triggers it. However genetic, autoimmune, and infectious causes have been suggested. 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 15 to 25 years of age. Still, it can be present as early as 5 years old or as late as 40. I started having symptoms around age 13.
4. 60% of Narcoleptic's are initially misdiagnosed and many go undiagnosed for more than 10 years. It has been a long seven years for me of being confused of why I was always so sleepy.
5. 75% of people with Narcolepsy have cataplexy.
- Cataplexy is an episodic condition featuring loss of muscle function, ranging from slight weakness such as limpness at the neck or knees, sagging facial muscles, weakness at the knees (often referred to as "knee buckling"), or inability to speak clearly, to a complete body collapse. Episodes may be triggered by sudden emotional reactions such as laughter,anger, surprise, or fear, and may last from a few seconds to several minutes. The person remains conscious throughout the episode. In some cases, cataplexy may resemble epileptic seizures. Usually speech is slurred and vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. Cataplexy also has a severe emotional impact on narcoleptics, as it can cause extreme anxiety, fear, and avoidance of people or situations that might elicit an attack.
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 temporarily paralysis known as sleep paralysis. I thank God that I do not experience this part of narcolepsy.
7. One third of Narcoleptic's have associated anxiety and depression.
8. Most Narcoleptic have disturbed sleep because of frequent shifts from sleep to awakenings throughout the night.
9. Narcolepsy can be easily diagnosed using a test called MSLT (Multiple Sleep Latency Test), which is the test that I took to discover my results.
10. Narcolepsy is treatable, but the treatment does not remove the problem. Medication will just help me to function better.
I will most likely still take a daily nap (hopefully just one). The doctor has put me on a medication called Nuvigil that will help with my sleepiness. I am testing out the dosage these first two weeks. At the end of the first two weeks, we will add either an antidepressant called Effexer or Xyrem in addition to the Nuvigil to help me with my cataplexy.