“Hmmm what to wear? It’s going to be a rocking hot party so I need to find my leathers.” I pondered and looked through my closet. “Ah this will do,” as I clicked on the icon I needed and the clothes appeared. I'm feelings bit sluggish today, things seem to be moving slow. I click the drop down then port to the party. Things are hopping' – the music is hot. I party for what seems like hours, when an alarm goes off. “Wha... Huh? What's goin on?” I look around trying to gather my bearings. Odd, only a few minutes ago I was dancing and partying now I’m sitting in my chair in my living room. Looks like I seizured once again. It was becoming a common occurrence lately.
Narcolepsy! I dreaded the first time I told someone I had it, I dread it still. You never know their reaction. It’s to me one of the more misunderstood an invisible disabilities a person can have. Narcolepsy is the second-leading cause of excessive daytime sleepiness (after obstructive sleep apnea). Persistent sleepiness and sleep attacks are the hallmarks of this condition. The sleepiness has been compared to the feeling of trying to stay awake after not sleeping for two or three days.
Narcolepsy [när′kəlep′sē]
Etymology: Gk, narke, stupor, lambanein, to seize
“A syndrome characterized by sudden sleep attacks, cataplexy, sleep paralysis, and visual or auditory hallucinations at the onset of sleep. The syndrome begins in adolescence or young adulthood and persists throughout life. Its cause is unknown, and it is not related to pathologic lesions in the brain. Persons with narcolepsy experience an uncontrollable desire to sleep, sometimes many times in one day. Episodes may last from a few minutes to several hours. Momentary loss of muscle tone occurs during waking hours (cataplexy) or while the person is asleep. Narcolepsy may be difficult to diagnose because all people with the disorder do not experience all four symptoms. An electroencephalogram or other brain studies may be used to distinguish narcolepsy from an intracranial mass or encephalitis. Amphetamines and other stimulant drugs are prescribed effectively to prevent the attacks. Also called sleep epilepsy.”
People with narcolepsy fall asleep suddenly—anywhere, at any time, maybe even in the middle of a conversation. These sleep attacks can last from a few seconds to more than an hour. Depending on where they occur, they may be mildly inconvenient or quite dangerous to the individual. Some people continue to function outwardly during the sleep episodes, such as talking or putting things away. But when they wake up, they have no memory of the event.
Narcolepsy is related to the deep, dreaming part of sleep known as rapid eye movement (REM) sleep. Normally when people fall asleep, they experience 90 minutes of non-REM sleep, which is then followed by REM sleep. People with narcolepsy, however, enter REM sleep immediately. In addition, REM sleep occurs inappropriately throughout the day.
I have found myself piecing things together after learning about my condition. I try to keep my sleep regulated as much as possible. I use a Cpap machine. When used regularly I find I’m not near as tired as I would be without. It doesn't prevent my seizures but helps reduce the times I have them.
In 1999 researchers identified the gene that causes narcolepsy. The gene allows cells in the hypothalamus (the part of the brain that regulates sleep behavior) to receive messages from other cells. When this gene is abnormal, cells cannot communicate properly, and abnormal sleeping patterns develop. The disorder sometimes runs in families, but most people with narcolepsy have no relatives with the disorder. Researchers believe that the inheritance of narcolepsy is similar to that of heart disease. In heart disease, several genes play a role in being susceptible to the disorder, but it usually does not develop without an environmental trigger of some sort.
While the symptoms of narcolepsy usually appear during the teens or 20s, the disease may not be diagnosed for many years. Most often, the first symptom is an overwhelming feeling of fatigue. After several months or years, cataplexy and other symptoms appear.
Cataplexy is the most dramatic symptom of narcolepsy. It affects 75% of people with the disorder. During attacks, the knees buckle and the neck muscles go slack. In extreme cases, the person may become paralyzed and fall to the floor. This loss of muscle tone is temporary, lasting from a few seconds to half an hour, but frightening. The attacks (of either narc or cata) can occur at any time but are often triggered by strong emotions, such as anger, joy, or surprise.
Sometimes just the flashing of lights or watching a video can trigger it also, unsure how or why that occurs. Other symptoms of narcolepsy include:
*sleep attacks: short, uncontrollable sleep episodes throughout the day
*sleep paralysis: a frightening inability to move shortly after awakening or dozing off
*auditory or visual hallucinations: intense, sometimes terrifying experiences at the beginning or end of a sleep period
*disturbed nighttime sleep: tossing and turning, nightmares, and frequent awakenings during the night
I used to have nightmares when I was younger, thought to have been triggered by an assault when I was nine years old. Could have played a part. Hard to determine for sure.
There is no cure for narcolepsy. It is not progressive, and it is not fatal, but it is chronic. The symptoms can be managed with medication or lifestyle adjustment. Amphetamine-like stimulant drugs are often prescribed to control drowsiness and sleep attacks. A drug called sodium oxybate (Xyrem) was tested for use in 2004 and was shown to reduce daytime sleepiness as well as cataplexy attacks when used along with stimulants. Patients who do not like taking high doses of stimulants may choose to take smaller doses and "manage" their lifestyles, such as by napping every few hours to relieve daytime sleepiness. Antidepressants are often effective in treating symptoms of abnormal REM sleep.
With the recent discovery of the gene that causes narcolepsy, researchers are hopeful that therapies can be designed to relieve the symptoms of the disorder.
Narcolepsy is not a degenerative disease, and patients do not develop other neurologic symptoms. However, narcolepsy can interfere with a person's ability to work, play, drive, and perform other daily activities. In severe cases, the disorder prevents people from living a normal life, leading to depression and a loss of independence.
I want to thank many of my friends in RLC and 3dsex, many of whom are responsible for me being able to hold my head up high and feel like a functioning person again.
by Dia