This is the third and final installment of my little story of restlessness and middle of the night crazies. If you've happened upon this post, you can read about my discovery and diagnosis of Narcolepsy from "Bugs Everywhere" and "Lab Rat". It's important to note that all of this is old news for me and nothing I'm coping with is too serious. What is odd to me is that my biggest problem these days is the nighttime issues much more so than the daytime symptoms. So what is Narcolepsy?
Narcolepsy is a sleep disorder of neurological origin. It's most publicized and reported symptom is something called excessive daytime sleepiness (EDS), which is what it sounds like. Basically, you suffer from daytime sleep attacks and persistent drowsiness. Microsleeps intrude on normal awake states during the day. microsleeps are fleeting moments of sleep during an awake state. It's a common problem among non Narcoleptics that get much too little sleep as well. It's different from being tired in that prolonged periods of immobility render a Narcoleptic unable to stay awake often times. Personally, I've had serious problems in classrooms, at work and in my car. No matter how hard I try, I'm sucked into little mini-naps and there is very little I can do about it. I can feel it coming on as well. It feels like being tired but for me it is a warm sensation followed by a bit of a dizzy feeling. Everyone at some point has fallen asleep at inappropriate times and it's pretty much like that. The EDS aspect if Narcolepsy is something I've battled with but never attributed it to the disease, at least until I was diagnosed. I've been notorious for falling asleep in meetings at work. I've also made it a habit to pull over and take power naps while driving long distances.
Some Narcoleptics suffer from Cataplexy, which is a sudden form a paralysis brought on by an emotion of some sort. This is what many people think of when they think of Narcolepsy, which is correct, but not common among all Narcoleptics, including myself. It's the idea that someone is walking along or doing something and then suddenly collapses into an apparent sleep state. It's particularly dangerous because of the obvious risks while driving.
The most interesting and prevalent symptom for me is another symptom known as hypnagogic hallucinations which are vivid, realistic and frightening dreams experienced in an awake state. Other direct symptoms include frequent disrupted sleep where you just wake up often for no particular reason and automatic behavior. Automatic behavior is the performance of a routine task, without conscious awareness of doing it, and often without later memory of it.
For a good description of what Narcolepsy is, I'll quote a description from the Narcolepsy Network:
Narcolepsy is related to REM (rapid eye movement) sleep, the dreaming portion of sleep. As a protection against acting out dreams, the muscles become immobile or "paralyzed”. For the normal person, a sleep period first progresses for about 90 minutes of non-REM sleep and then REM sleep begins. But for a person with Narcolepsy, sleep begins almost immediately with REM sleep. Since the brain may not be totally asleep when dreaming begins, the dream is sometimes experienced far more vividly and is thought of as a hallucination. After waking, REM periods, or fragments of REM, occur inappropriately throughout the day. This explains excessive daytime sleepiness. Cataplexy is related to the muscle "paralysis" of REM. When automatic behavior occurs, sleep has partially overtaken the brain, but the body continues to perform familiar tasks.
Narcolepsy is a neurological disorder caused from the absence of a neurotransmitter, normally present in the hypothalamus region of the brain, which produces the hypocretin peptide essential to the human sleep-wake cycle. Psychological problems can develop from coping with the symptoms or from being unaware of the cause. I've talked to my managers at work about the issue so that they would understand why I'm struggling so much at times. My doctor even wrote me a prescription for an afternoon nap to alleviate the EDS. I've been tempted to tack it to the outside of my cubical and crawl under my desk to take a nap but of course I haven't. Wouldn't that be great though?
Predisposition to Narcolepsy is believed to be hereditary. Researchers also believe that certain triggers may determine whether someone predisposed to Narcolepsy will develop the disorder. Potential triggers include: Viral and bacterial agents, abrupt changes in wake-sleep cycles, illness, accidents, stress, drug usage and even hormonal changes. Also, a genetic blood test has been developed which measures certain antigens often found in people who have a predisposition to Narcolepsy.
In 1999, Provigil (modafinil) was approved as the first non-amphetamine wake-promoting drug for EDS, which is what was prescribed for me. I've tried it and it does definitely help but I'm pretty opposed to a drug/pill regimen if I can help it. My doctor strongly advised that I try to allow plenty of time for sleep and, in short, live as clean a lifestyle as possible. He said that anything that would make me feel batter would offset the EDS. He was right. About that time in my life I began going to bed earlier and taking better care of myself (thanks in large part to my wife; thanks!). The EDS problem still exists for me but it is much better, only resurfacing lately because of our little baby Jackson wanting some attention throughout the middle of the night. the hypnagogic hallucinations have been bad lately, again because of my poor sleep. Poor sleep causes more issues with it and it causes poor sleep; a bit of a vicious cycle.
All in all the problem is not too bad FOR ME to deal with. The issues I have at night are a hardship but there are worse problems. Many suffer much worse symptoms so I'm in no way downplaying the disease. I just thought I would share my experience. For most, Narcolepsy kicks in the late teens and early twenties. Then it sort plateaus and you live with it. It will not get worse for me nor will it shorten my life span so I cannot complain too much really. Thanks for reading and sleep well!