The Important Questions About Narcolepsy
Narcolepsy is fairly easy to define, yet hard to understand. It usually manifests as sudden bouts of sleep that last circa several minutes, at any time throughout the waking hours and in spite of any circumstances. Interestingly enough, individuals that suffer from this neurological disorder typically spend an average amount of hours of sleeping per night, just as non-afflicted people do. Because of such a glaring manifestation, the medical community could easily define narcolepsy, but the jury is still out when it comes to the exact cause.
Thankfully, significant strides in research have been made over the last few decades, so we are going to take a look at this peculiar affliction overall, as well as the scientific revelations that may shed some light on it.
What are the crucial facts you should know?
The estimated incidence of narcolepsy is 1 in 2,000 but this is by no means an exact number. The first roadblock that makes it difficult to pinpoint the hard facts comes in the form of a rather disturbing notion that many individuals remain undiagnosed or misdiagnosed for many years — sometimes decades. What is known based on the observed sample is that it affects males and females equally and that it begins to develop during childhood. The full-blown manifestations become noticeable during the teens and sometimes go unnoticed until the afflicted reaches the early twenties.
Approximately 3,000,000 people worldwide are affected by narcolepsy and even though this is a total number worthy of a sizable metropolis, it is actually a minuscule percentage when compared to the global population. It is estimated that only a quarter of individuals that have this condition have been diagnosed. Furthermore, about 70% of people affected by narcolepsy also suffer from an accompanying condition known as cataplexy, which is loosely defined as a sudden loss of muscle strength and control that usually lasts as long as the narcoleptic episode. Instances of cataplexy without narcolepsy are extremely rare.
What are the symptoms of narcolepsy?
People that suffer from narcolepsy will fall asleep anytime anywhere, for a short and intense interval of time that can range from a minute to half an hour. The bout of narcoleptic sleep usually arrives suddenly, without any preexisting warning signs, though the attack of cataplexy can come beforehand. This is usually the be-all-end-all symptom that defines the condition, but there are also accompanying factors that worsen for a couple of years after the disorder is (arguably) instigated, but it typically stabilizes at a certain point and continues to stay consistent through life. The exception comes during particularly stressful periods, but more on that later.
The aforementioned cataplexy is the additional accompanying factor, and this sudden loss of muscle control varies in intensity from individual to individual. While it manifests merely as slurred speech, you can also experience a complete loss of muscle tone. The attacks are triggered by strong emotions of both positive and negative kind, and while cataplexy often accompanies narcolepsy literally, they can occur independently from each other. It is true that there are people with narcolepsy who do not experience cataplexy, but those who do can experience it as often as several times a day or as rarely as once a year.
Hallucinations are an additional symptom which occurs for a very obvious reason — since narcoleptic episode comes on so suddenly and rapidly, you may begin to experience dreams slightly before you “go under.” They can be hypnagogic or hypnopompic hallucinations, based on whether you experience them upon falling asleep or awakening respectively, and they can be severely intense. Furthermore, sleep paralysis, though short, can be experienced, and it can be just as frightening as hallucinations, especially since you may be perfectly aware of it occurring and capable of recalling it afterwards.
What causes narcolepsy?
If we are to discuss causes of narcolepsy, it would be prudent to divide them into two distinct categories which can be dubbed as triggers and root causes. The preamble to the further discussion is that neither of these categories is as clearly defined as you would desire it to be. For example, the notable triggers of narcoleptic episodes are intense emotions. If you are exceedingly stressed, feel overexcited or devastated, there is a greater chance you will experience narcoleptic sleep more often. It goes without saying that this is usually accompanied by cataplexy.
Now, when it comes to the root causes of narcolepsy, matters become more complicated. While it has been known for some time that genetics play a major role, this has only scratched the surface of the biochemistry behind the disorder. The gene that causes narcolepsy has been identified on chromosome 12, which plays a crucial function in permitting the hypothalamus, the part of the brain that regulates sleep, to receive information from other cells. The deviation on this chromosome impedes this essential communication, which can cause narcolepsy, though it is not written in stone. As a matter of fact, 12% to 25% of the population carries this atypical chromosome, but only 0.05% of these individuals will develop narcolepsy.
The only distinction between what is dubbed Narcolepsy 1 and Narcolepsy 2 is the inclusion of cataplexy in the first one. The causes in the latter are not well understood, but the research of individuals that have this conditions has shown that, in the case of Narcolepsy 1, they have a staggering 90% to 90% decrease in the presence of hypocretin neurotransmitters. This brain chemical plays a crucial role in the regulation of our sleep cycles and certain functions such as blood pressure. Something appears to be “killing off” these neurons.
Thorough research of neurochemistry with narcoleptic patients has been done at the University of Copenhagen recently, and it has reaped some interesting results. Apparently, the discovery of autoreactive cells has led them to postulate that this disorder is a form of autoimmune disease. While this discovery builds into what is already known about the neurochemistry of this disease, it may just be direly needed breakthrough that can lead to groundbreaking treatment. Only time will tell.
How is narcolepsy treated?
Due to the aforementioned factors and the elusive nature of this chronic disorder, a concrete cure for narcolepsy is yet to emerge. However, the medical community is doing everything in its power to find immediate solutions to, for the lack of a better phrase, “bootstrap” the symptoms to the best of their abilities. Broadly speaking, narcolepsy can be managed to a limited extent by altering lifestyle habits and excluding sources of stress from one’s life. Of course, these changes are combined with prescribed medication.
When it comes to medication, certain antidepressants are used for REM intrusion, which can help with cataplexy, hallucinations and possibly sleep paralysis. A stimulant such as modafinil influences the central nervous system, but amphetamine-like stimulants are used to alleviate symptoms if modafinil proves to be ineffective. Sodium oxybate in one of its many branded forms is used to treat most of the symptoms, but it is tightly regulated due to safety concerns.
Alternative therapies with herbal solutions may help immensely, especially because they can serve as relaxants. One of the hallmarks of narcolepsy treatment is the wind-down of intense emotional reactions coupled with anxiety relief, and this is where a right dose of CBD oil can tip the scales in your favor. Of course, natural compounds and herbal remedies are only part of the “alternative” equation — regular massages, acupuncture, and meditation have all proven to be effective to some extent.
Finally, lifestyle changes that include, at least roughly, practicing good sleep hygiene, combined with limited consumption of stimulating foods, drinks, and tobacco, contribute to the mitigation of symptoms. It is also advisable to begin regular exercise and stick to it for as long as possible. Speeding up the metabolism through the improvement of muscle tone increases your quality of life.
It is hard to draw a definitive conclusion when it comes to discussion about narcolepsy. Matters are still quite open-ended, but as long as you don’t put yourself in situations where you can endanger yourself or others — for example, deciding to sit behind the wheel — it is not a life-threatening or life-shortening disorder. The pressing issue is to fight public misunderstanding of the condition — stay open to communication, inform your friends and colleagues as much as you can in order to ameliorate your social and work situation. The subsequent wholehearted support from friends and family can make a world of difference.
Mignot, E. J. (2014, May 14). History of narcolepsy at Stanford University. SpringerLink. Retrieved April 23, 2019 from https://link.springer.com/article/10.1007/s12026-014-8513-4
University of Copenhagen The Faculty of Health and Medical Sciences. (2019, March 15). New proof that narcolepsy is an autoimmune disease. ScienceDaily. Retrieved April 23, 2019 from www.sciencedaily.com/releases/2019/03/190315110921.htm
University of California – Los Angeles. (2013, July 3). New clue to cause of human narcolepsy. ScienceDaily. Retrieved April 23, 2019 from www.sciencedaily.com/releases/2013/07/130703101609.htm
University of California – Los Angeles. (2018, June 27). Change in brain cells linked to opiate addiction, narcolepsy: Chemical messengers abundant in heroin users, lacking in narcolepsy. ScienceDaily. Retrieved April 23, 2019 from www.sciencedaily.com/releases/2018/06/180627160443.htm
Washington State University. (2018, April 19). Scientific guidelines for using cannabis to treat stress, anxiety and depression. ScienceDaily. Retrieved April 23, 2019 from www.sciencedaily.com/releases/2018/04/180419100110.htm
Evans, C. (2019). The Important Questions About Narcolepsy. Psych Central. Retrieved on April 5, 2020, from https://psychcentral.com/lib/the-important-questions-about-narcolepsy/