06.02.2014
Narcolepsy, a neurological disorder that causes overwhelming daytime drowsiness and sleep attacks, was first recognized as a clinical disorder in 1880.
While narcolepsy symptoms have probably been around since the beginning of time, the recorded history of the condition is believed to date as far back as the 17th century, with Oxford physician Thomas Willis. In the 1870s, two German doctors, Westphal and Fisher, first described the symptoms of what would soon after be named narcolepsy. His work firmly established the "narcoleptic tetrad" as the definitive diagnostic criteria for narcolepsy. A possible link between narcolepsy and Parkinson's disease - These two neurological disorders share some common traits that may shed light on both of them.
Potential risk for narcoleptics who smoke - Since narcoleptics fall asleep without notice, they have an increased risk of injury and death by burning. Changes in body temperature and their effect on narcoleptic sleepiness - Direct manipulation of skin temperature in narcoleptics can affect levels of vigilance and sleepiness. Whether narcolepsy is caused by environmental factors - If a person is genetically predisposed, narcolepsy may be caused by environmental exposures long before the disorder becomes apparent. Narcoleptics more likely to develop an eating disorder - Narcoleptics have been linked to symptoms of eating disorders. While narcolepsy has been recognized as a clinical condition since the 19th Century, there is still much to be learned about the condition and the associated symptoms.
Every day, at least once, but usually twice, my head gets heavy, as if a weight sits on my skull, and I know, right then, that sleep is coming. These sleep attacks are a fundamental part of my daily routine – as automatic and compulsive as eating food and drinking water. Yet one morning, after years of sleepiness, I awoke from a perfect night’s rest and began working at my bedroom desk. The sleepiness of narcolepsy, technically called “excessive daytime sleepiness,” means that, even with the best medication available – amphetamines and other wake-promoting drugs, my brain still demands to be shut down multiple times a day. It’s been said that an average person would have to stay awake for 48 to 72 hours straight before they would feel the same violent call to sleep I experience daily. Sleepiness is similar to hunger and thirst – all three are involuntary commands intended to provoke certain responses.
When I sense sleep lurking behind me, even in the far distance, I start preparing for its arrival.
There’s no exact science to my safety and survival, but I’ve grown accustomed to dancing in the daylight with sleep.
As a mother of a child who stuggles daily trying to dodge the overhanging shadow of sleep, i was overwhelmed by your descript. Being relatively new to the whole Narcolepsy world, a mere 18mths since diagnosis, and now battling anger, frustration, hallucinations, paralisis, night terrors, day dreaming on top of the ever returning sleepiness and the sudden cataplexy that seems to knock the life out of my sweet poor boy.
Of course, there is no one “right” way to handle narcolepsy, we are each on our own journeys!
Narcolepsy is a neurological disorder caused by the brain's inability to regulate sleep-wake cycles normally.
In order to understand the basics of narcolepsy, it is important to first review the features of "normal sleep." Sleep happens in cycles. Despite the perception that people with narcolepsy are perpetually sleepy, they do not typically sleep more than the average person. Narcolepsy affects both sexes equally and develops with age; symptoms usually first develop in adolescence or young adulthood and may remain unrecognized as they gradually develop. Narcolepsy patients typically endure many years of daytime sleepiness before seeking treatment because sleepiness is not indicative of disease to most people.
Researchers believe that narcolepsy may be caused by a deficiency in hypocretin production in the brain. Excessive daytime sleepiness - this is usually the first symptom to appear in people who have narcolepsy.


Hypnogogic hallucinations - during transition from wakefulness to sleep, the patient has bizarre, often frightening dream-like experiences that incorporate his or her real environment. Narcolepsy is a medical disorder that impacts 1 in approximately 2,000 people in the United States and many people are unaware of the condition and go undiagnosed. Narcolepsy is diagnosed through a sleep study, a set of medical tests including an overnight Polysomnogram (PSG) and a Multiple Sleep Latency Test (MSLT). The Epworth Sleepiness Scale is a simple test that allows a person experiencing EDS to evaluate the severity of her or his condition. Sleep is an important health issue; without proper sleep, the human body cannot function well. Doctors discovered the fundamentals of the condition over a period of many years, and scientists are still learning new information about narcolepsy to this day.
While he did not use the word "narcolepsy," he wrote about patients experiencing "a sleepy disposition who suddenly fall fast asleep." Interestingly, Willis also suggested caffeine as a treatment for narcolepsy, and stimulants have played a big part in the therapy of narcolepsy throughout history.
Westphal was the first to clinically describe narcolepsy as a physical disorder, which often manifests along with cataplexy, a fixation of the eyes and episodes of sudden loss of muscle tone while a person is awake. To get the French name narcolepsie, he combined two Greek words: narke, meaning numbness, and lepsis, meaning attack.
He also connected the symptoms of excessive daytime sleepiness, cataplexy, and sleep paralysis as relating to one specific disorder. William Gowers sought in his book, The Border-Land of Epilepsy, to differentiate narcolepsy as a unique disorder.
William Dement established the first sleep disorders clinic in San Francisco, following an overwhelming local response to his recruitment efforts for a narcolepsy study. For many years, I believed I was better than sleep; I thought I could brush it off with a coffee or a red bull. Quite the opposite – it’s a welcome calming, a joyful sign of dreams to come, a precious passing, a floating away from life’s stresses, a first taste of the ultimate release- the sweet peace- of sleep. Finally, sitting upright in my chair, two feet from my pillow-top queen-size mattress, I drifted off to sleep. Sleepiness is a sign of other things; an indicator for another, more real, underlying medical or psychological problem.
People who don’t have narcolepsy constantly “know how I feel” and I nod my head in agreement, like a plastic bobble-head doll.
I can never thoroughly explain narcolepsy, but you’ve provided me the necessary words. Division I rowing is SO intense, I can’t imagine having undiagnosed narcolepsy in that scenario. I’m so sorry to hear that your child was recently diagnosed with narcolepsy 18 months ago. I am so sorry to hear that you have had narcolepsy for about 5 years, along with sleep apnea.
When we fall asleep, we initially enter a light stage of sleep and then progress into increasingly deeper stages. The instance of a familial connection with narcolepsy is quite small but a combination of genetic and environmental factors may be at the root of this sleep disorder. Yet the devastating potential of this disorder is reflected in studies showing that narcoleptic patients are more accident-prone and have difficulty with interpersonal relationships.
Unless they're being treated for the disorder, the need to sleep can be overwhelming for narcolepsy patients: someone who has narcolepsy is prone to falling asleep while engaged in conversation, driving, eating dinner, or at other inappropriate times.
Sleep paralysis may last for a few seconds to several minutes and may accompany hypnagogic hallucinations. Even when clear-cut cataplexy is present a sleep study is necessary to rule out sleep apnea and other possible sleep disorders contributing to EDS.
Answers are rated on a reliable scale called the Epworth Sleepiness Scale, the same assessment tool used by sleep experts worldwide.


It is intended as a tool to help you identify your own level of daytime sleepiness, which can be a symptom of a sleep disorder or other medical problem. Good sleep helps ward off illnesses, helps maintain healthy skin, bones, and muscles and helps to balance hormones and other important brain and body chemicals.
The disorder is aptly named as suffers experience "sleep attacks" following intense emotional experiences, such as laughing and screaming. Using the term "narcolepsy" to mean all disorders that caused daytime sleepiness means that his definition included illnesses, such as lethargic encephalitis, that were not actually sleep disorders. He insisted that it was separate from other conditions that could cause excessive daytime sleepiness. In 1973, he first observed narcolepsy in dogs and established a research colony of animals with canine narcolepsy.
The medical community still doesn't know exactly what causes narcolepsy to develop, and researchers are hard at work trying to solve the mystery. One time in college, while studying late at night in the library, my sleepiness felt unusually powerful, but then came the flood of legitimate excuses. The slight suggestion of sleep turns into a hellish siren – incessant screeching demanding that I shut up, lie down, and drift off to dreamland.
I have spent so much time searching for the words to explain it to people, and writing often – thanks for offering up such an honest and expressive account of what narcolepsy really feels like.
The disease is also often associated with sudden sleep attacks, insomnia, dream-like hallucinations, and a condition called sleep paralysis. While the cause of narcolepsy is not completely understood, current research points to a combination of genetic and environmental factors that influence the immune system. While new discoveries are being made about narcolepsy and other sleep disorders, life with narcolepsy remains challenging for many people with the condition. And if I still don’t sleep, the back of my eyes begin to burn and I start losing contact with myself – where I am and what I’m doing.
No one knows exactly why these cells disappear; it’s possibly an autoimmune reaction – mixed up signals, mistaken attacks on myself. Although narcolepsy doesn’t go away, each day gets a little easier and more manageable to me. I know first-hand the challenges from battling the same symptoms, but I truly cannot imagine dealing with the challenges of narcolepsy at such a young age. You’ve been through a lot of adversity and now you get to grow a greater support system and find strategies that work well for you with narcolepsy. After about 90 minutes, we enter the first stage of REM sleep, which is the dreaming portion of sleep, and throughout the night we alternate between stages of REM and non-REM sleep. Narcolepsy Network hopes that the information, resources, and support provided here on our site and elsewhere through conferences and events will provide people with narcolepsy both hope and a voice. This breakthrough quickly led to the isolation of a potential genetic cause for narcolepsy, an avenue of research that scientists are still exploring. Eventually, this leads to sleep – not because I’ve reached a safe and appropriate resting spot, but because I had no choice. I let sleep take me as soon as possible now, it washes over me for fifteen minutes to an hour and then it lets go. For people with narcolepsy, sleep begins almost immediately with REM sleep and fragments of REM occur involuntarily throughout the waking hours. As quickly as it came, sleep disappears and I return to myself, rising to stand on my own two feet again.
When you consider that during REM sleep our muscles are paralyzed and dreaming occurs, it is not surprising that narcolepsy is associated with paralysis, hallucinations, and other dream-like and dramatically debilitating symptoms.



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