What is Narcolepsy?

I am not an expert on narcolepsy, however, I have suffered from the condition since high school. The only symptom of narcolepsy I don’t suffer from is cataplexy.  Since being diagnosed in October of 2015, I have done a tremendous amount of research on it. I’ll start with some information from WebMD that does a good job of explaining most of the symptoms of narcolepsy. 

“Narcolepsy is a neurological disorder that affects the control of sleep and wakefulness.  People with narcolepsy experience excessive daytime sleepiness and intermittent, uncontrollable episodes of falling asleep during the daytime.  These sudden sleep attacks may occur during any type of activity at any time of the day.

In a typical sleep cycle, we initially enter the early stages of sleep followed by deeper sleep stages and ultimately (after about 90 minutes) rapid eye movement (R.E.M.) sleep.  For people suffering from narcolepsy, R.E.M. Sleep occurs almost immediately in the sleep cycle, as well as periodically during the waking hours.  It is in R.E.M. Sleep that we can experience dreams and muscle paralysis which explains some of the symptoms of narcolepsy.

Narcolepsy usually begins between the ages of 15 and 25, but it can become apparent at any age.  In many cases, narcolepsy is undiagnosed and, therefore, untreated.

What Causes Narcolepsy?

The cause of narcolepsy is not known; however, scientists have made progress toward identifying genes strongly associated with the disorder.  These genes control the production of chemicals in the brain that may signal sleep and awake cycles.  Some experts think narcolepsy may be due to a deficiency in the production of a chemical called hypocretin by the brain.  In addition, researchers have discovered abnormalities in various parts of the brain involved in regulating REM sleep.  These abnormalities apparently contribute to symptom development.  According to experts, it is likely narcolepsy involves multiple factors that interact to cause neurological dysfunction and R.E.M. Sleep disturbances.

*Excessive daytime sleepiness (EDS): In general, EDS interferes with normal activities on a daily basis, whether or not a person with narcolepsy has sufficient sleep at night.  People with EDS report mental cloudiness, a lack of energy and concentration, memory lapses, a depressed mood, and /or extreme exhaustion.

*Cataplexy: This symptom consists of a sudden loss of muscle tone that leads to feelings of weakness and a loss of voluntary muscle control.  It can cause symptoms ranging from slurred speech to total body collapse, depending on the muscles involved, and is often triggered by intense emotions such as surprise, laughter, or anger.

*Hallucinations: Usually, these delusional experiences are vivid and frequently frightening.  The content is primarily visual but any of the other senses can be involved.  These are called hypnagogic hallucinations when accompanying sleep onset and hypnopompic hallucinations when they occur during awakening.

*Sleep paralysis: This symptom involves the temporary inability to move or speak while falling asleep or waking up.  These episodes are generally brief, lasting a few seconds to several minutes.  After episodes end, people rapidly recover their full capacity to move and speak. http://www.webmd.com/sleep-disorders/guide/narcolepsy#1

Immediately after my diagnosis I dove in and wanted to get as much information as I could in an attempt to improve my quality of life. I told my neurologist that I was going to be a part of a clinical drug trial at Swedish Hospital in Seattle, where they are studying narcolepsy.  He said, “Why?” I said, “What do you mean why? You’re the one who told me about it.” Then he tells me, “We don’t know...We really don’t know anything about it.  Why would you want to do that to your brain?”

Wow...My Neurologist is also a Psychiatrist.  To me, that put him in the category of rocket scientist.  To have him say that to me put it all in perspective. I’m on my own...correction, I’m in this with my wonderful wife Tammy. Fortunately for me, Tammy is the smartest person I know.  She is a Doctor of Nursing Practice, DNP. She jokes that all that means is that she has a lot of school debt. It actually means a great deal more.  Tammy was the catalyst in me seeking an answer for my condition. Tammy is what I call a noticer. She notices everything. It wasn’t far into our courtship before Tammy said, “Ummm...honey, that isn’t normal.” I said, “It isn’t?” She said, “NO! People don’t fall asleep in their dinner plate.” The fact is, she had seen a lot more than that.  Tammy was the first person I was able to be really honest with about my condition. In doing so, It forced me to be honest with myself.

There is so much I want say about what life has been like as a narcoleptic. There are so many I want to help. Currently I am in the development stage of a book to tell my story of coping with narcolepsy.  I have had an extraordinary life, surrounded by amazing people. My story begs to be told…

Trina