The Narcoleptic’s Dilemma

With the often overwhelming daytime sleepiness or the uncontrollable tendency to just suddenly fall asleep, the typical narcoleptic (as you can imagine) is locked in a constant struggle with himself or herself. In many aspects, the narcoleptic lives through some thick fog of uncertainty, the kind that limits your vision and gnaws into the ties of relationship you have with others. And it is heroic, indeed, to still plod through it all and use all your will and strength to try and live a normal life. Or a semblance of it.

Diagnosis
But where does one draw the line between ordinary episodes of sleepiness and genuine garden-variety narcolepsy? Diagnosis of narcolepsy is not exactly the easiest thing to do in the world—it’s not something that can be determined by a doctor placing a stethoscope on your chest or tapping a wooden mallet on your knee. But thanks to decades of studies, certain tests now exist to determine if that strange chronic somnolence is just “normal” or in fact an actual case of narcolepsy.

It is “easy” to diagnose the condition when all the classic symptoms are present. Zones out like a zombie? Check. Suddenly falling asleep for seemingly no reason at all? Check. But we use the word “easy” here with caution, like someone tiptoeing around egg shells, because it is still important to note that when dealing with a little understood condition like narcolepsy, a hundred percent accuracy is not the norm. What’s more, diagnosis is more difficult to perform the more random are the symptomatic attacks or if the more obvious indications (such as cataplexy) are not present at all.

At its most basic, however, two standards tests are performed to make sure that one is indeed narcoleptic: the polysomnogram and the multiple sleep latency tests.

Polysomnogram is used to observe what are known as the most obvious signs of narcolepsy: the brain waves during sleep. The suspected narcoleptic is allowed to sleep under controlled conditions at a sleep clinic, under the supervision of a certified sleep specialist, and the patient is hooked up to certain machines that could “read” the patient’s brain waves. Polysomnogram readings are directly related to the fact that normal human beings have a well-established pattern of sleeping: first, upon sleeping, we enter the non-rapid eye movement (NREM) phase, then about one and a half hours later, we enter the rapid eye movement phase (REM). Whether a sleeping person is currently under any of the said phases or not is determined by the observed brain waves. In normal non-narcoleptic persons, NREM happens first, followed by REM. However, in narcoleptics, this pattern is reversed: REM first. In fact, it is not only reversed but also somehow kind of “mixed up,” as if the brain randomly and automatically chooses to slip into REM mode even while the person is not supposed to be sleeping. Polysomnography is also comprehensive, as it records several body functions that may or may not be related to sleep, such as muscle activity or skeletal muscle activation (EMG), the rhythm of the heart (ECG) and respiration. A complete polysomnogram battery of tests can also help the sleep specialist rule out other possible sleeping disorders, such as sleep apnea or parasomnia.

The multiple sleep latency test, on the other hand, is performed to enable the doctor or sleep specialist to determine whether one’s sleepiness is simply caused by physical tiredness or is actually the kind of excessive sleepiness that is symptomatic of genuine narcolepsy. The suspected narcoleptic is allowed to sleep during times of supposedly normal wakefulness, and how fast they reach the different levels of sleep is observed, recorded, and measured against normal values.

Treating the narcoleptic
The bad news is that there is no actual cure for narcolepsy, no “magic pill” that can get to the root of the problem and make it go away. The (somehow) good news, however, is that the various symptoms can be reduced in intensity or at least diminished to an extent that the narcoleptic is able to live a functional life.

The absence of a cure is due in large part to the fact that the phenomenon of sleep itself is not fully understood—yes we sleep when we’re tired, then we wake up supposedly refreshed and recharged; yes, we “know” we need to sleep, and we know sleep’s effects on our mood and our body, but that’s about everything we know about it. We still do not have exact, final answers regarding the minute mechanisms of sleep and scientific explanations to the big whys, such as why do other animals need very little, if not zero amounts, of sleep.

Despite this current state of inadequacy, however, what scientists have accomplished so far is managing the symptoms of narcolepsy. Although it may not be what a narcoleptic would hope to get, that is all we have at the moment, and for the most part, the various treatment options work to some extent. At this point, it is perhaps important to keep the narcoleptic’s hopes as realistic as possible by letting them know that despite the medical establishment’s ability to control the symptoms of narcolepsy, “complete control” is rarely achieved, especially those of cataplexy and sleepiness.

When a definite diagnosis of narcolepsy is made, the doctor formulates an individualized treatment regimen to “attack” the specific symptoms being experienced by the narcoleptic. That is why a “shotgun approach” to narcolepsy could not work: it might end up wasting time, money, effort and good intentions. That is also why formulating a fully individualized, “tailored” treatment regimen could not be finished at once—it often takes several weeks or even months to find the best treatment regimen for an individual narcoleptic.

As is always the case, medications serve as the first line of defense against the symptoms of narcolepsy. Obviously, as the major problem of a narcoleptic is excessive sleepiness, it is this symptom that is targeted first. Normally, a class of drugs that stimulate the central nervous system is used. Antidepressant drugs and REM sleep suppressors are also administered. Moreover, as an aside, despite its popularity in helping people stay awake, caffeine or drinking coffee has been shown to be quite ineffective in combating the type of sleepiness associated with narcolepsy.

However, medications alone are not enough to achieve a significant management of the symptoms of narcolepsy. Your doctor may also prescribe changes in your lifestyle that may mitigate the impact of your medication or your symptoms. In any case, a narcoleptic could not expect that medications can do the whole job of symptomatic alleviation—their proactive participation in changing their habits can help in ensuring the success of the treatment regimen.

Living with the Sleeping Disorder
If you are a friend or if one of your family members is a narcoleptic, it is important to understand your role in helping your loved one manage what may be their lifetime scourge. Narcoleptics must never feel that they are alone in facing the disorder. They need all the emotional, social and financial support that they can get. You must also not treat their narcolepsy as something like a punch line to a joke: sure, narcolepsy may be funny to see in the movies, but in real life it isn’t.

As you probably realize, the narcoleptic’s dilemma is not only practical and emotional in scope, but also affects all aspects of a person’s life. On the emotional side, the disorder can be very vexing and depressing for the sufferer: realizing that you are afflicted with some incurable disorder can be a terrible burden. On the practical side, the narcoleptic may not be left responsible for certain “risky” household chores or work activities. They may also not be allowed to drive long distances, or to drive at all. And of course, the narcoleptic’s occupational horizon may be severely limited: “tends to suddenly fall asleep on the job” is not exactly what prospective employers like to find on a job applicant’s resume. But such is what narcoleptics endure.

The first thing that a narcoleptic and their family and loved ones must do is to exhaustively learn about this sleeping disorder. I say “exhaustively” to emphasize the importance of knowing everything you can about a disorder that sits at the heart of your loved one’s suffering. From knowledge comes understanding, and understanding is what the narcoleptic needs, in abundant supply if possible.

The narcoleptic can also attend support groups to meet other people who have narcolepsy. Such support groups enable narcoleptics meet others who have the same disorder, although perhaps in various severities, and they will be able to share life experiences and personal pointers in managing their illness. The whole process of sharing and venting can also give the narcoleptic some “emotional anchor” with which they can understand their condition. Such support groups may also provide networking opportunities for people with the condition.

At the end of the day, the narcoleptic, despite certain limitations, can still lead a highly productive life. With a carefully formulated treatment regimen for the optimal management of symptoms and the support of their family, a narcoleptic may still function normally, enjoy a good time with friends, and pursue a deeply fulfilling career. Like anyone else.