Narcolepsy is a rare lifelong neurological disorder, marked by chronic sleepiness, that affects men and women equally; about one in 2000 people overall. This condition of chronic sleepiness begins to develop during the teenage years between thirteen and twenty years of age. It can also develop in some people as old as forty to fifty years of age. The good news is that narcolepsy is a manageable condition which means that even if you are diagnosed with it, you can still go on to live a full and rewarding life.
Symptoms of Narcolepsy
There are various symptoms of Narcolepsy. The most prominent symptom is persistent sleepiness to the point where you cannot distinguish being asleep or awake much of the time. The condition can be marked by fragmented sleep during the night and brief episodes of muscle weakness that is known as cataplexy as well as a brief paralysis that the person who is suffering from this condition experiences when he or she falls asleep upon waking up.
Additional symptoms of narcolepsy entail neurological symptoms that are more severe, such as a rare condition that is known as secondary narcolepsy which is caused by an injury to the deep section of the brain known as the hypothalamus.
Types of Narcolepsy
The two types of narcolepsy are with cataplexy and without cataplexy. Those that are diagnosed with narcolepsy without cataplexy have symptoms that are less severe. This just means their condition consists of a general sleepiness that has no emotionally triggered muscle weakness.
There are also two types of sleep with one kind being REM (rapid eye movement) and the other being Non-REM. The former is characterized by quick eye movements, dreams, and paralysis of the sleeper’s limbs and trunk that can prevent them from injuring themselves if they should act out their dreams while they are sleeping. The latter, Non REM, doesn’t experience this paralysis and the dreams are not as common as those with REM sleep.
The Basics of Sleep
To understand sleep disorders such as narcolepsy, it helps to understand the nature of sleep in the first place. It is by understanding the purpose of sleep that empowers us to make healthier choices which will, in turn, lead us to strive for a better quality of sleep.
Up until fifty years ago, sleep was once thought of as the passive and inactive state that the body slips into when the brain and body turns itself off in order to recuperate from the day’s activities. On average, the sleep cycle lasts about eight hours in much of western culture. In the last few decades, scientists are discovering that the brain is perhaps more active while we are sleeping than we are awake. People who have narcolepsy may even be more active than most of the general population which would explain their sleep disruptions and excessive sleepiness.
In its simplest form, sleep is that magical world where we leave the conscious world and traverse through a world of deep sleep and dreams. Although we rarely remember any of this when we wake up and in many cases, the sleep cycle passes so quickly we aren’t even aware of the time lapsing while we are asleep. The basic definition of sleep is period of reduced activity that is mostly associated with posture that involves lying down and closing our eyes; in doing so we also experience a decreased response to any outside, external stimuli that we normally experience during the day when we are conscious.
Also, we want to mention that the basic sleep cycle is easier to traverse than other forms of reduced consciousness such as hibernation and being in a coma where we have less control over the awaking process; if we actually do awaken in these other stages of reduced consciousness since these could lead to a more lasting period of reduced consciousness known simply as death.
People with Narcolepsy
- Usually feel inattentive and drowsy for a good part of the day, if not all.
- Fall asleep more easily and enter REM (rapid eye movement) sleep within fifteen minutes.
- Are more likely to have dreams during naps and experience hallucinations upon awakening, along with sleep paralysis and possible cataplexy.
- Could possibly wake up spontaneously in the middle of the night.
People without Narcolepsy
- Those that don’t have narcolepsy don’t readily fall asleep and typically feel more awake and alert.
- These people rarely enter REM sleep or have dreams during their midday naps and are not as likely to have a hallucination as soon as they wake up.
- Sleep paralysis and cataplexy are not common in those without the disorder so they have a better chance of sleeping well at night.
To sum it all up, narcolepsy makes it more of a challenge to distinguish being asleep with being awake. To those that do not have this neurological condition, being awake and being asleep are actually two different states that do not mix together.
Narcolepsy has been heavily oversimplified in its depiction by the media, reduced to a comedic stereotype where people collapse into a dead sleep at inopportune moments. In reality, narcolepsy produces diverse and often debilitating symptoms, all of which affect the sufferer’s waking life tremendously, such as:
- Excessive exhaustion and impaired cognitive functioning. This goes far beyond the feeling of “being tired” that is associated with not getting a good sleep for a night or two; rather, this sort of exhaustion is the cumulative effect of never having truly restful, restorative sleep—something which is unimaginable to most people who do not have a sleep disorder (though if you have ever stayed awake for 48 hours straight or more, you may have an idea of what it’s like for a narcoleptic).
One of the most tragic misconceptions about narcoleptics is that they suffer from an overabundance of sleep, when in fact they are invariably severely sleep deprived owing to the fact that their bodies “skip” the critical stages of NREM sleep that they require to remain healthy. This accumulates a significant sleep debt, one which mounts each day that the narcoleptic is alive, making even small tasks feel like a Herculean challenge.
Narcoleptics therefore struggle with all of the ills and difficulties that come with chronic sleep deprivation, such as impaired concentration, short term memory loss, “brain fog”, poor motor reflexes, blurred vision, headaches, and being at elevated risk for many serious illnesses.
Medication can and should be a last resort for many illnesses, due to side effects and the fact that most people don’t want to feel dependent on taking daily pills. Yet, sometimes a person has no choice but to take medications prescribed by a doctor on a daily basis. Narcolepsy is no different and patients should work closely with their primary care physicians and sleep specialists to determine whether they require medication.
To start off with, there are medications that work to promote wakefulness in a person with narcolepsy. These are Modafinil, Armodfinil, Amphetamines, and Sodium Oxybate, with the latter being the best tested and most commonly used. For those patients who have narcolepsy combined with cataplexy, amphetamines and antidepressants are usually prescribed.
Sounds strange taking an antidepressant for a sleep disorder? When you look at the neurological science behind narcolepsy, there are commonalities between brain processes occurring in sleep disorders and mental illnesses (specifically depression); particularly the brain areas affected and types of neurotransmitters involved are the same in both cases. Modafinil is usually prescribed because it creates a sense of alertness by increasing dopamine, which is a wake-promoting chemical in the brain – due to increased dopamine secretion, those with bipolar disorder can go days without sleep. It is also safe to mention that as dopamine increases, two other neurotransmitters also increase. These two are serotonin and norephinedrine with the former often being called “happiness hormone” and the latter being known for increasing an individual’s energy level. The main reason for prescribing an antidepressant, besides increasing one’s sense of alertness, is that it also suppresses REM (rapid eye movement) during sleep. Continue reading →
The narcolepsy disorder that is characterized by excessive daytime sleepiness did not come to be known until 1870. It was well over 100 years, just about fifteen years ago around the turn of the 21st century, before any underlying causes for the condition became clear. This came about as a result of groundbreaking discoveries and new insights from two doctors; Dr. Jerome Siegel from the University of California at Los Angeles and Dr. Emmanuel Mignot at Stanford University.
The primary cause of narcolepsy is a lack of hypocretins which are neurotransmitters that transmit signals from one neuron to another neuron. Hypocretin are produced by a small cluster of neurons in an area of the brown known as the hypothalamus. This section is located directly behind the eyes.
There are only about 100,000 to 200,000 hypocretins that are produced during the human state of wakefulness which bind to certain protein receptors, increase the activity of the neurons and work to prevent REM (rapid eye movement) sleep from occurring at the wrong time of day (as well as promote alertness throughout the day). Scientists can determine the amount of hypocretins in the brain by measuring the amount of cerebrospinal fluid which surrounds the brain. The results in those individuals who were diagnosed as having a narcolepsy with cataplexy are shown to have up to a 95% decrease in their hypocretin producing neurons.
The hypocretins that are produced in the morning die off which explains how people with narcolepsy start off in a state of alertness but gradually feel more and more tired as the day goes on; unlike those with other sleep disorders such as obstructive sleep apnea where people do not usually receive a good night’s sleep and feel tired from the moment they wake up. This also leads to a REM sleep that is poorly regulated and a lasting sleepiness to the point that the nonstop sleeper has to take a twenty minute power nap throughout the day just to main a few extra hours of wakefulness; particularly if they are getting behind the wheel of a car.
ADHD is short for Attention Deficit Hyperactivity Disorder and is a term that is used to describe the disease that manifests through impulsiveness, inattentiveness, and hyperactivity in children and adults. Children who are diagnosed with this condition usually have a hard time staying focused and sitting still and often find it difficult to manage their emotions as well as their behavior. These characteristics result in problems in school (often due to poor social skills) and can lead to other mental health symptoms such as depression and anxiety; especially when ADHD gets in the way of meeting their goals. There is a lot of controversy with regard to ADHD, some consider this condition non-existent, other claim that the “explosion” in diagnosed cases of ADHD is a conspiracy of drug companies. Yet, the consensus among mental health professional is that ADHD is on the rise and there is a set of established symptoms for diagnosing ADHD in children.
In recent years, ADHD has been more linked to deficits in a child’s sleep since many ADHD children show greater signs of sleepiness during the day. More often than not, if the underlying issue in ADHD is a sleep disorder, then treating the actual sleep disorder will alleviate or even eliminate the symptoms of ADHD. Consequences of sleep deprivation can be confused with symptoms of ADHD in children and consequences of narcolepsy and catoplexy are often mistaken for ADHD symptoms in adults.
One example of this is a thirty year old man described in a New York Times article entitled “Diagnosing the wrong deficit” who was diagnosed with ADHD because the doctor disregarded a criterion that health professionals are supposed to use in diagnosing the condition; they have to trace symptoms back to childhood. The man described in the New York Times article did not start experiencing the ADHD-like symptoms until after he started a new job that required him to wake up at five o’ clock in the morning. This person was known to be a “night owl” and, as it was discovered later, a narcolepsy sufferer. Prescribed ADHD medications made things worse and, finally, the misdiagnosis was corrected. The person got treated for narcolepsy and the problems were solved.
There are a few methods for diagnosing an individual for narcolepsy, the disease which affects one in 2000 people annually. While a self-evaluation using Epworth Sleepiness Scale can give a person some general idea, one still needs to consult a medical professional for formal diagnosis in order to receive a treatment for narcolepsy disorder. The diagnostic process usually begins with a sleep study where a person has to stay overnight in a sleep lab.
Typically, the first overnight test for narcolepsy is a polysomnogram. The purpose of the polysomnogram is to record the individual’s brain waves, breathing, and muscle tone which helps to evaluate the quality of sleep the person is receiving as well as the amount of sleep that serves to detect possible evidence of another sleep disorder such as sleep apnea or periodic limb movement; an example of the latter being a condition known as restless leg syndrome where an individual’s leg jerks during the night uncontrollably while they are sleeping.
After the polysomnogram is taken, the individual will arrive next day for continued observation. The next step in the process is Multiple Sleep Lating Test, or MSLT. You will want to make sure that you get sufficient sleep prior to taking this test. Also, your doctor will want you to temporarily discontinue any medications, otherwise they could affect your sleep and the results of the test.
The MSLT consists of the five twenty minute naps every two hours throughout the following day after the overnight stay. This test is performed after the polysomnogram so that the doctor can better make a determination as to whether or not the previous nights sleep is affecting the patient’s naps during the day.
There are a few ways to diagnose the chronic sleepiness that is prevalent in the neurological disorder known as Narcolepsy. This article will cover the self-diagnose that is perhaps the most accurate since we know our own bodies better than anybody. Still self-diagnosis doesn’t replace a doctor’s report and we should still seek a medical opinion if we have symptoms or narcolepsy or any other illness. It should be noted that the more proactive we are in our own wellness, the easier the medical professional’s job.
A self-diagnosis of narcolepsy would begin by noticing a persistent of sleepiness that occurs throughout the day even despite getting a good nights sleep the previous night. This is usually the first clue and one can find self-assessment tools online to help support their conclusions. That’s the benefit of living in the information age; there is not much of an excuse to not know much of anything.
There are also three questions that you will need to ask yourself once you suspect that you may have narcolepsy:
1) How likely are you to fall asleep during periods of inactivity even after you had a vacation or a weekend or any other multiple days off to catch up on your sleep?
2) Do you often feel very tired despite during the day despite the fact that you begin the day feeling rested?
3) Is dozing off at highly inappropriate times the norm for you?
*Note: Any yes to one or more of these questions needs to be discussed with your primary care physician (PCP) or a sleep specialist.
While sleepiness can occur for a variety of reasons, persistent sleepiness is usually the first clue that someone may have narcolepsy. To help identify problematic sleepiness, ask yourself these questions:
- “Once you have caught up on your sleep during weekends or vacation, are you still likely to fall asleep when inactive?”
- “Do you feel rested in the morning but then tired throughout much of the day?”
- “Do you doze off at inappropriate times?”
If you answered “yes” to any of these questions, you should discuss your sleepiness with your primary care physician or sleep specialist.
Dream-like hallucinations just prior to sleep, and sleep paralysis at times when you are awake, are suggestive of narcolepsy. However, these symptoms are not considered very specific for the disorder, as they can occur in people who simply need more sleep. In contrast, true cataplexy is very distinct and occurs almost exclusively in narcolepsy.
While narcolepsy is not a mental health condition, modern neuroscience shows that nearly every illness can be traced to the human mind. It is now clear that just about every illness, mental and physical, is related to emotional problems such as stress, anxiety, and trauma. While narcolepsy symptoms are often mistaken for depression, narcolepsy disorder often goes hand in hand with depression, especially in adolescents and young adults. Research studies on correlation between narcolepsy and depression are inconsistent regarding the rate of co-occurrence for depression and narcolepsy. Researchers claim that the rates of depression symptoms in narcolepsy patients are anywhere between 17% (Roth et al., 1975) and 50% (Daniels et al., 2001). The studies also differ in the conclusion on whether the depression is a cause or a consequence. When depression is suspected, mental health practitioners need to use social-emotional psychological assessments to identify whether observed symptoms have physical or mental health roots or both.
Word “Narcolepsy” gets its meaning from the Greek words “seized by numbness”. Two of the leading symptoms actually serve to reflect this phrase; they are the excessive sleepiness that is marked by “sleeping attacks” during the day that could be a physical version of a panic attack. Another leading symptom that validates the Greek phrase is the severe muscle weakness known as cataplexy which is actually brought about by very strong emotional stimuli. Continue reading →