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Understanding the Misunderstood
Imagine this. You have arrived home from another ordinary day of classes at college. You sit down on the sofa, were you always do, and turn on the television. After relaxing there for about a half an hour, you start doing homework from your classes. At about 6pm you set your homework aside and get up and go into the kitchen to fix something quick and easy for dinner. Dinner is nothing special, just a typical prepackaged meal you purchased at the supermarket. You go back, after dinner, doing your homework, finishing in time to watch an episode of a television show you watch every week.
Your show has ended and it is time to call it a day. You proceed to prepare to go to bed by checking to see if all of the doors are locked and then turning the television and lights off. You climb into bed. A minute or two after lying down and finding that right spot, you hear the front door open and then close. Hearing footsteps moving across the living room floor, fear sets in. The footsteps round the corner and there, in the doorway of your bedroom, you see a dark figure shadowed by the nightlight in the hallway. That quick, the figure disappears into the darkness, with the footsteps fading down the hall toward your daughter's bedroom. Suddenly, fearing the worst, you get up out of bed, go to the closet and get your gun, all the while thinking there is someone in your house that don't belong there. Slowly you leave your bedroom and head down the hallway very quietly. When you get to your daughter's bedroom, there's nobody there. You then realize it was all a hallucination. Welcome to my world.
Misunderstood by family, friend, coworkers, other students, and even teachers, people afflicted with narcolepsy are thought to be lazy, uninterested, and/or on drugs. Even by doctors, the condition can be misdiagnosed as long as fifteen years before being properly diagnosed. In his book A Women's Guide to Sleep Disorders, Meir H. Kryger writes, “People with narcolepsy are often treated for some other condition, often depression, which they may not have.”
Narcolepsy for decades was thought to be a neurological disorder. The cause of this disorder was thought to be a chemical abnormality in the brain of the people with Narcolepsy. Meir H. Kryger writes, “Science made a huge leap forward about five years ago when a new chemical culprit was discovered, one that might play a major role in narcolepsy. This chemical is known by two names, orexin and hypocretin. Different research groups discovered the chemical at about the same time and each gave it a different name. Research suggests that patients with narcolepsy do not produce sufficient quantities of this chemical or receptors in the nervous system may have ceased to respond to it adequately.”
As of May of this year, 2009, in an article written by Tina Hesman Saey “Narcolepsy Linked to Immune System” Published in Science News reports that Emmanuel Mignot, a sleep researcher and Howard Hughes Medical Institute investigator at Stanford University, “Has found genetic markers connected to narcolepsy which map out to a gene were microbe killers are created when immature immune T cells are turned into them.”
People with narcolepsy, as Tina Hesman Saey writes, “Have been found to have a certain immune gene called HLA-DQB1*0602 linked to a class of genes which are named HLA, for Human Leukocyte Antigens, that makes key immune proteins. The function of these proteins is to introduce small amounts of invading microbes to the T cells. This process allows the T cells to identify, and then search out and kill harmful foreign cells. With this information narcolepsy is now linked with autoimmune disease. Autoimmune disease is when the T cells go haywire and attack healthy cells in the body by mistake.”
Saey goes on to say, “Given the association between narcolepsy and the HLA gene, the lethality of T cells intrigued scientists studying the sleep disorder. Neurons that make a wake-promoting protein called hypocretin die in people who have narcolepsy. Death of the cells means that people can't make enough hypocretin to stay awake, and they experience sudden bouts of sleep during the day and disrupted sleep at night. About one in every 2,000 people in the United States has narcolepsy with cataplexy, a sudden loss of muscle tone that can cause people to collapse.”
People afflicted with narcolepsy are affected in many different ways. The four distinct symptoms that people have with narcolepsy are;
Sudden episodes of sleepiness during the daytime, this symptom, being the one common link to all narcoleptics, causes unexpected bouts of extreme sleepiness and even actually falling asleep during inappropriate times; for instance, during class or while driving.
Symptom two being sleep paralysis affects a narcoleptic when he or she first wakes up. This paralysis may last a few moments to several minutes. This paralysis affects all of the muscles in the entire body except for the ones needed for keeping you alive.
Cataplexy is the sudden loss of muscle tone or even paralysis. This symptom happens while you are awake. Cataplexy is brought on by a sudden change in emotion such as being surprised by someone, anger, or laughter. The paralysis can be limpness at your knees or neck, lack of control of your facial muscles or even the ability to speak.
The rarest symptom, the one I had you imagine at the beginning of this paper, is hypnagogic hallucinations, (vivid dreams). In a normal sleep people don't start dreaming until they are fully asleep and reach the REM, rapid eye movement, stage. Narcoleptics don't go through the normal stages of sleep. Instead of having a period of about ninety minutes at the beginning of sleep called NREM, non rapid eye movement, and then going into the REM stage, people with narcolepsy have these reversed.
Diagnosis of narcolepsy is done either one of two different methods. A polysomnogram is a procedure preformed on a patient while they are sleeping. It records the brain waves being produced and nerve and muscle actions. The other is the “multiple sleep latency test.” This test involves the patient being asked to try to sleep every two hours during the normal time you would be awake. They check to see how long it takes you to fall asleep and how deep asleep you reach.
Currently narcolepsy has only one for of treatment. With the use of medications, the daytime sleepiness is somewhat, but not completely, controlled. Modafinil, prescribed by most doctors, is the drug of preference. It has the least amount of side effects and does a good job promoting wakefulness during the time frame you are awake, either night or day.
Older drugs used like Methylphenidate (Ritalin), Pemoline, and even amphetamines have been gradually pushed aside due to detrimental side effect these drugs have on your body.
Nancy Sizemore, Director of Disability Services at Wilkes Community College for the last thirteen years, said, “I have had only Known of four students over the years that had narcolepsy. The most important thing that people affected by narcolepsy is to not try to hide their problem. This will only lead to a larger problem with the teachers and other staff members. By getting documentation and informing them of your illness, so that procedures to help you in the class room can be implemented.”
I am your friend, classmate, coworker, or even the one sitting across the aisle and few pews up in your congregation. Like many others with narcolepsy, I have been poked fun at and even been the center of practical jokes. Many of us with narcolepsy have become a custom to this because we know that it is just a case of not understanding or knowing that we have an illness that is causing the sleepy episodes. There are many narcoleptics that are afraid of the ridicule and have become a recluse. With more being written and broadcast, through televised media, about narcolepsy, maybe people may become more understanding about what we go through on a daily basis. With the advancements in science and technology, though there isn't a cure yet, the diagnosis and treatment of many thousands of people afflicted with narcolepsy has helped them be more productive and comfortable in life.