Ebba was a young, healthy woman. But she would fall asleep-suddenly, without warning-during daylight hours. Is is narcolepsy (the sleeping illness)? As the years passed, her situation worsened; she would fall asleep several times a day. She began hearing voices and having terrifying hallucinations. She would collapse like a house of cards for no apparent reason. Or she would suddenly lose strength in her hands and drop her purse. Ebba began to wonder if she was mentally ill or under demon attack.
After 32 years Ebba's emotional distress resulted in her being hospitalized. Physicians thought she was schizophrenic and began treating her with antipsychotic drugs.She responded positively to the medication, but her doctors could still not pinpoint just what her illness was. And the medication left her tired and apathetic.
Thirteen years passed. One day her husband, Louis, happened to read a magazine article about two women who had the same symptoms as his wife. The name of the illness?
Narcolepsy.
The Nature of Narcolepsy
Narcolepsy is an illness that causes its victims to have a frequent attacks of sleepiness. Explains sleep researcher Wilse B. Webb: "People with narcolepsy will, while performing normal day-to-day activities, suddenly and involuntarily lapse into sleep lasting from a very few minutes to episodes of up to 15 minutes." The attacks can come virtually anytime-during a lecture, while carrying on conversation, or while driving an automobile. Other symptoms often include sudden muscle weakness, sleep paralysis, and frightening hallucinations.
Some estimate that the United States alone may be home to tens of thousands of narcoleptics. And while the disease itself is not life threatening, the danger of
accidental injury is quite serious.
For many years doctors brushed off narcolepsy as a purely psychological problem. Psychiatrists called it an escape mechanism, a form of hysteria, a withdrawal of ego. However, evidence began to accumulate that narcolepsy is physical in nature. It was learned, for example, that the illness seemed to run in families and that the malady afflicts even certain breeds of dogs. The American Journal of Psychiatry thus concludes: "At the present time narcolepsy is considered to be primarily an organic neurologic [brain] disorder rather than a psychogenic [originating in the mind] disorder."
Still, being branded as "lazy" or even "insane" any friends and family members may very well cause psychological damage. In one study of 24 sufferers of narcolepsy, fully two thirds had psychiatric problems, such as depression or alcoholism. The disease also dramatically disrupted their lives in other ways. Of the 24 men studied, 18 proved to be 'unemployable.'
What Causes Narcolepsy (The Causes Of The Symptoms)
If you have normal sleep pattern, within 60 to 90 minutes after you fall asleep, you will reach the dream stage called R.E.M (Rapid Eye Movement) sleep. Although you don't realize it, your muscles go perfectly limp during R.E.M sleep. This apparently serves to protect us from acting out our dreams.
Narcolepsy, however, disrupts the normal R.E.M pattern. A narcoleptic patient plunges into the dreamy R.E.M condition almost the instant he falls asleep. And during the day virtually without warning-he will get that urge to sleep again be shifted almost instantly into the R.E.M state. Some doctors would thus define narcolepsy as a "R.E.M dysfunction disorder."
Narcolepsy can also cause the normal states of the mind and the body to become out of phase. A patient may awaken from sleep with his body still in the R.E.M state and discover to his horror that he is unable to move a muscle! Or his body is thrust into R.E.M sleep while he is wide awake and going about his daily routine. For no apparent reason, his muscles suddenly grow weak or so limp (muscle paralysis called cataplexy) that he collapses into a heap. From about two thirds to three fourths of narcoleptic patients experience these frightening symptoms.
Almost any emotional stimulus-laughter, anger, fear-can trigger cataplexy. The book Sleep, by Gay Gaer Luce and Julius Segal, says; "They cannot laugh at a joke, spank their children in anger, mourn, or exhibit certain strong feelings without becoming literally weak with emotion and collapsing like jelly."
R.E.M sleep features may even intrude on a patient's waking thoughts and superimpose a vivid dream-or a terrifying nightmare-on reality. He may awaken in bed, his body paralyzed in the R.E.M state, and hear voices and see frightening things. Such waking dreams (called hypnagogic hallucinations) may also occur during the day, and about half of all narcoleptics experience them.
It is thus understandable that some narcoleptics tend to withdraw from others for fear of being stigmatized as "lazy", "mentally ill," or "possessed by demons."
How To Cope With Narcolepsy Illness
Far too often narcoleptics explain away their symptoms as fatigue or chronic tiredness and fail to seek medical help. Even when they do, narcolepsy is not always easily diagnosed, especially in its early stages. Says the American Family Physician: "Patients with narcolepsy experience symptoms for an average of 15 years before receiving a correct diagnosis."
Still, if you suffer from chronic daytime sleepiness, you are wise to consult a physician and not try to diagnose yourself. A thorough examination may identify a medical problem that needs attention.
What, though, if a doctor confirms your condition to be narcolepsy? While the disease is incurable, doctors claim that there are a number of medications that can help the sufferer to lead a reasonable normal life. Central-nervous-system stimulants are often prescribed to help a patient stay awake during the day. Antidepressants are used to control problems with cataplexy.
A number of new approaches are also being tried. Some researchers are also being tried. Some researchers claim that codeine, which makes most persons drowsy, has the opposite effect on narcoleptics. There is also optimism regarding research with a medication commonly called G.H.B (gammahydroxybutyrate) that may prove to be an effective tool in combating daytime drowsiness and auxillary symptoms. Of course, drug treatment may lead to addiction or drug tolerance, and there may be side effects. You are therefore wise to be cautious and well-informed when it comes to taking medication. A physician, however, can minimize such risks by carefully monitoring a patient's reaction to medication and making adjustments where necessary.
There are also practical steps that you can take. Accept the fact that you have a serious illness as well as the limitations it imposes. Driving, operating machinery,or even swimming may simply be too dangerous. You may also have to consider changing your employment or even retiring.
If your case is a relatively mild one, it may help if you take several naps during the day. These can minimize the possibility of your falling asleep at inconvenient
times. And if displaying strong emotions triggers a cataplexic collapse, you may have to learn to hold your feelings under tight rein. But, avoiding all emotional
displays requires extraordinary effort! You may have to remind yourself continually that life and health are at stake. Your loved ones can also be of great support if they have been helped to understand your condition and the limitations it may bring.
Ebba, mentioned at the outset of this article was finally properly diagnosed and placed on a medication that works for her. And although her illness caused her many years of suffering, she finds comfort in knowing that she was neither insane nor the victim of demonic attacks.
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