More on Narcolepsy

"Narcolepsy...A Funny Disorder That's No Laughing Matter."
Current mood: sleepy

It's one of the few books written about Narcolepsy, and it's by a woman who has N herself. Here are some excerpts from the book (it's very short but completely wonderful. By Margarette Utely)


"When I say narcolepsy is a funny disorder, I don't mean that it is humorous. I mean it is a strange, odd, weird disorder. But to deny that its symptoms can sometimes result in hysterically laughable situations is akin to an ostrich sticking its head in the sand to keep from being seen. Since that trick obviously does not work, people with narcolepsy usually try to find more subtle ways to avoid the public eye.

Excessive Daytime Sleepiness:
Lack of mental alertness, short attention span and poor concentration are characteristics of a sleepy mind. The mind longs to submit to sleep but begrudgingly labors to continue functioning. Efficiency, including accuracy and speed, is lost in the compromise. Learning and retention are affected. A person who continues to function in this condition is vulnerable to making mistakes and causing accidents. But poor performance has nothing to do with innate intellectual ability, personal responsibility, ambition, interest or motivation.
It has to do with narcolepsy.
Most people who suffer from excessive daytime sleepiness are probably riddled with guilt. They feel guilt from within and guilt from without. They feel guilty if they can't stay awake and often they are made to feel even more guilty when they nap.

Management of Symptoms :
Therapeutic Naps: Sleep specialists are now recommending that people with narcolepsy schedule naps just prior to their sleepy time(s) of day. Therapeutic napping should be as acceptable for narcoleptics as insulin is for diabetics.
Counseling: Narcolepsy is a physical, neurological disorder. It is not a mental illness. However, its symptoms sometimes produce psychological and emotional problems that require counseling. Psychosocial Support :Nothing has a more profound effect on a person with narcolepsy than the support provided by significant others such as family, close friends and co-workers. Whether this effect is positive or negative depends upon the understanding, acceptance and cooperation of these people.
Coping:
Narcolepsy is incurable. However, it is not hopeless. Drug treatment is helpful to a degree, but overall it can be rated as only moderately effective. Therefore, we narcoleptics must learn to live as best we can with this monster that threatens to gobble up our most productive waking hours. In large part, our success or failure depends on us. Coping skills for us equate to survival tactics under wartime conditions! Considering this fact, we must prepare ourselves with the best weapons at our disposal --- starting with knowledge.

Persons with narcolepsy often feel relentlessly sleepy, regardless of how much sleep they have had. Sleep may overwhelm them at inappropriate times, while they are in a conversation or driving, for example. "Whenever I get in the car as a passenger," Utley relates, "the first place I usually go is to sleep."
Persons with narcolepsy also experience bouts of sudden loss of muscle control, known as cataplexy. These usually strike during the expression of strong emotions, such as laughter, anger, or surprise. A joke might cause someone with narcolepsy to topple over. Her husband, Utley said, had to get used to "playing catcher.

Those with narcolepsy also may experience bizarre hallucinations in waking hours and a temporary muscle paralysis just as they are falling asleep or waking up. All of these symptoms represent the intrusion of the REM state of sleep into waking hours. Sleep specialists describe the problem as one of faulty control of sleep and wakefulness in which events normally restricted to sleep occur when the person is awake.

The disorder, she points out, can limit education, causing those with narcolepsy to miss important information and teachers to view them as lazy or stupid. Sleeping on the job is a sure path to failure. Trying to protect oneself from cataplexy by blocking emotions hampers personal relationships."

More stuff that's not from the book:

"Narcolepsy is a debilitating disorder that causes uncontrollable sleepiness and muscle weakness. The disorder can interfere with a person's ability to work. If you are a student, who suffers from Narcolepsy, you may experience lack of mental alertness and poor performance in school. This is the same with those who are working. Their personal interaction is affected by this condition. In cases where narcolepsy is left untreated, worse symptoms can be experienced and are characterized by microsleep and total paralysis. From a simple case of paralysis experienced only by a certain part of our body to the worst cases of untreated narcolepsy, a total muscular collapse and paralysis may be experienced depending on the patient."


AGH!!! I JUST FOUND THIS! NARCOLEPTIC FRIENDS- CHECK THIS OUT!!!!

The most recent news is extremely hopeful for Narcolepsy patients. Researchers under the leadership of a professor of molecular genetics, Dr. Masashi Yanagisawa at UT Southwestern Medical Center at Dallas, are now claiming to have discovered a new method of treatment for narcolepsy. Just like in movies where mice are used for experiments, the team used some genetically engineered mice with lacking nerve cells in the brain. These nerve cells are responsible for producing the brain chemical Orexin. The method involved introducing this brain chemical to the mice both genetically and by manual injection. It was concluded that without Orexin, the mice exhibited narcoleptic like symptoms including the overpowering sleepiness and cataplexy symptom. With injection of Orexin, the mice returned to full wakefulness. Researchers believe that a lack of the brain chemical Orexin may be the root cause of narcolepsy in humans as well. There is hope on the horizon! With further research it is widely anticipated that a more complete cure for this disorder will soon appear. However, more research and testing will still be necessary before Orexin can be made available to the public.

How they test for Narcolepsy:

Polysomnography shows one or more of the following:

* The onset of sleep is less than 10 minutes
* The onset of REM sleep is less than 20 minutes and
* A Multiple Sleep Latency Test (MSLT) that demonstrates an average sleep onset of less than 5 minutes
* HLA typing demonstrates DR2 positivity (Blood contains markers for narcolepsy)