What is Narcolepsy? The Disorder, Symptoms and Current Treatments
If you have ever watched a movie in which a character is in the middle of doing something and suddenly drops off to sleep and into dreamland, you may have witnessed a good dramatization of narcolepsy.
People with the sleep disorder narcolepsy actually have a neurological disorder. It can cause sudden and uncontrollable sleep episodes lasting from seconds to minutes, and are often accompanied by symptoms of constant sleepiness, vivid hallucinations, loss of muscle control and temporary paralysis when falling asleep or waking up.
What Causes Narcolepsy?
While all of the causes are not known, narcolepsy is caused by the shortage of a neuropeptide called hypocretin. Hypocretin 1 & 2 are located in the hypothalamus of the brain and are believed to play a significant role in regulating the body’s circadian rhythms. The loss of this chemical results in the brain being unable to regulate the sleep cycle.
There are many famous people and movie characters with this disorder, one of whom was Harriet Tubman, the African-American abolitionist. It is believed her narcolepsy was caused by a severe brain injury, the result of a beating that left her with a permanent indentation on her forehead.
Familial genetics enhance the chances of getting this disorder by 20-40 times, but narcolepsy can also be triggered by immune-system dysfunction, brain trauma, extreme stress, infection and so on. One study suggests one can become narcoleptic if 70,000 (or more) brain cells with hypocretin die.
The National Institute of Neurological Disorders estimates that narcolepsy affects 1 in 3,000 Americans. Other research has the number at 1 in 2,000. Either way, it is not considered rare, and the effects of this disorder are not exaggerated. Narcoleptics will fall asleep suddenly and unexpectedly, creating dangerous situations if the individual is operating machinery, driving, or doing anything where situational awareness is important to safety.
During these sudden sleep bouts, narcoleptics may go on ‘automatic,’ completing tasks or starting new ones, all without recall upon waking. There is no information indicating it would be safe to drive, etc., while in this state, however.
Famous actress Natassja Kinski, who suffers from narcolepsy, takes her disorder seriously and won’t drive at night because of the danger. While narcoleptics should use caution when performing tasks that pose an obvious danger, everyday activities can pose a risk as well. Examples include:
-taking the escalator
-crossing a street in traffic
Everyday activities pose a real risk to undiagnosed/untreated narcolepsy, but medication reduces the dangers of accidents among narcoleptics.
How would you know if you were narcoleptic? If you hadn’t heard the term before and have a tendency to fall asleep without warning, you might have no idea what was going on with your body. It could be chalked up to overwork, too much stress or just not getting enough sleep. There are specific narcolepsy symptoms to watch out for, however.
Extreme daytime sleepiness is a symptom comedian and narcoleptic Jimmy Kimmel once described in an interview. As he said, “…it is as though only the inside of your brain is tired. You have almost no focus…all you can think about is not falling asleep.”
Aside from a persistent sleepy feeling, people experiencing EDS will have extreme trouble staying awake during ‘passive’ situations. These include sitting for lectures, waiting, etc.
Narcoleptics often experience some form of cataplexy. This is a neurological disorder in itself. A cataplexy attack affects muscle tone and may leave the individual without any voluntary muscle control. Less severe episodes can create mild loss of control, but during all episodes, the victim is conscious. Cataplexy attacks may occur at anytime, and because the victim remains conscious, should not be confused with seizures.
An interesting fact about cataplexy is that it may be triggered by strong emotions, including laughter. It is also interesting to note that the same neuron group that shuts down voluntary muscle activity during REM sleep is involved in cataplectic attacks.
An inability to move or speak while falling asleep or immediately after waking up. This is usually a temporary symptom, but a frightening one nonetheless. However, this is a normal occurrence during REM sleep, we are just not usually awake to experience it!
Research describes hallucinations as they relate to narcolepsy as “dreaming into the wakeful state.” The problem with this is it can be frightening. We are accustomed to experiencing vivid dreams during REM sleep cycles (‘the dream seemed so real!’) but not while we are falling asleep or waking up. Imagine your most vivid dreams coming to life, involving any or all your senses, and you have grasped the concept of narcolepsy hallucinations.
Disrupted Nighttime Sleep
Described as a symptom of narcolepsy, it usually involves chronic insomnia as a result of the previous two symptoms. People who suffer from this disorder often report waking from hyper-vivid dreams, paralysis or simply waking up at odd times for no reason.
Early treatment for narcolepsy is essential and lifelong. Genetic narcolepsy often surfaces in adolescence. As with any disorder resulting in chronic sleeplessness or consistent and irregular sleep patterns, narcolepsy affects all areas of a person’s life.
At present, patients are treated with a combination of drug therapy and behavioral strategies. Antidepressants and amphetamine stimulants are common treatments for dealing with frequent waking or preventing sudden sleep bouts, respectively.
Behavior modifications/strategies for narcoleptics are similar to those with sleep disorders. They include:
-Maintaining a sleep diary.
-Frequent, scheduled naps in concert with sleepiest episodes.
-Avoiding alcohol and caffeine for at least several hours before going to bed. No smoking.
-Developing a nighttime sleep schedule.
-Moderate exercise everyday.
-Making sure the sleeping environment is comfortable.
-Practicing relaxing, sedentary bedtime rituals.
There is no cure for narcolepsy at this time, but scientists have made progress in understanding the genetic factors involved in this neurological disorder. This research has lead to a link between HLA’s (human leukocyte antigens) and T-cells.
Scientists believe these elements interact to kill cells containing hypocretin, leading to the conclusion that narcolepsy is an autoimmune disorder. Eventually, scientists will be able to identify people prone to narcolepsy and prevent it from developing.
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