Have you ever dosed off unexpectedly or at inappropriate times? I think we all have. It happened to me recently in church. I found my head bobbing as I fought off sleep. (I jokingly told the pastor I was nodding in agreement). For some folks though, it can be caused by more than a lack of sleep the night before. There is a condition known as narcolepsy that is a big issue for those who have it. Its effects can range from an embarrassing nuisance to a dangerous and life-controlling problem. Let’s see if we can learn more about it.
What is Narcolepsy?
Narcolepsy is a chronic sleep disorder that results in excessive drowsiness and sudden, unpredictable sleep attacks throughout the day. Bouts of sleep may last only a few moments or for more than an hour. They can happen at any time, even in the midst of a job interview or while driving down the freeway. Some subjects will wake up feeling rested and alert, with no memory of the episode. Others sometimes continue to function during an attack, even carrying on conversations, and awaken with no memory of what they were doing while asleep.
Narcolepsy is a relatively common condition that affects approximately one out of every 2000 Americans. This may not sound like much, but to put it into perspective, the rate of incidence is about the same as that for Multiple Sclerosis. However, these numbers may be artificially low, because many sufferers of narcolepsy never go to a doctor and get a diagnosis, or at least not until they have had the illness for many years. Narcolepsy is thought to be the second most common cause of serious daytime sleepiness. Sleep apnea, which is associated with breathing difficulties while sleeping, is the first.
The socioeconomic impact of narcolepsy is huge. Studies have shown that even for treated patients, the effects on their work, leisure activities, and interpersonal relationships are significant. Narcoleptics are also much more prone to accidents than the general population. The negative results of narcolepsy are even greater than for that of epileptics. Many epileptics have a hard time getting a drivers license due to the unpredictability of their seizures. My guess is that there are also a lot of narcoleptics on the road that shouldn’t be. Research indicates that the earning power of narcoleptics is negatively impacted as well. The average length of time between symptoms appearing and diagnosis is about 14 years, since many people don’t recognize excessive sleepiness as a symptom of a medical problem. Most people experience their initial symptoms as an adolescent. Suffice it to say, then, that most narcoleptics are well into their careers by the time they seek help. Most people are not well informed about narcolepsy, including employers, who may not be too understanding when you fall asleep at your desk or during a meeting with a client.
What Are the Signs and Symptoms of Narcolepsy?
- The most definitive symptom of narcolepsy is overwhelming drowsiness and sleepiness during the day. Narcoleptics have no way of predicting when they will fall asleep. It can happen at any time and at any place. It goes without saying that this can cause significant problems in a person’s life. Another result of narcolepsy that is not so obvious is that it can cause a chronic ongoing state of inattentiveness and lack of alertness. Even when victims are not nodding off, they are operating with a handicap. One man described it as constantly feeling like he had a hangover from drinking too much. The ability to concentrate and process information is seriously impacted. This leads to unproductivity at work and at home. It can also be dangerous to drive and do other sensitive activities while impaired like this.
- A condition known as cataplexy is experienced by about 70% of narcoleptics. It is characterized by a sudden loss of muscle tone, often triggered by intense emotions, usually positive ones. For example, a narcoleptic may experience slurred speech, or involuntary buckling of the knees or drooping of the head, after a hearty laugh. Negative emotions such as fear or anger can trigger cataplexy too. These attacks may last only a few seconds, or for up to several minutes in some cases. Patients can have them as often as several times daily, or as infrequently as once or twice a year.
- Sleep paralysis: Many narcoleptics describe frightful episodes when they are unable to speak or move, usually occurring when first falling asleep or when first waking up. Sometimes they may be able to remember it during and after the event, but have no control or ability to stop it while it is happening. Attacks may last anywhere from several seconds to a few minutes. Researchers believe sleep paralysis in narcoleptics is a variation of normal sleep paralysis that occurs in healthy individuals as they enter REM (rapid eye movement) sleep, when most dreaming normally occurs. The purpose of this temporary inability to move is speculated to be to protect us from acting out our dreams and possibly injuring ourselves. Sleep paralysis is not exclusive to narcolepsy. Many healthy young adults have reported having several attacks of sleep paralysis.
- Hallucinations: These types of hallucinations are known as hypnagogic hallucinations. They occur when a narcoleptic falls abnormally quickly into REM sleep, which for them may happen at night or during the day. Subjects are often in a semi awake state, and many find the apparitions to be quite horrific and frightening. One subject described an episode where he “awoke” to find a demonic looking creature sitting cross-legged on his chest and staring into his eyes. He was paralyzed and unable to breathe, causing him to feel as though he were going to suffocate.
- Some narcolepsy sufferers also struggle with very restless sleep patterns, often waking up many times throughout the night. Many victims, up to 40%, experience “automatic behavior,” which is continuing to function while asleep, both at night (sometimes called “sleep walking”) and during the day. It is also common for narcoleptics to physically react to dreams by flailing their arms and legs and screaming out. Because narcoleptics generally do not get quality, restful sleep, the drowsiness during the day is continually perpetuated.
What Causes Narcolepsy?
The verdict on the cause of narcolepsy is still out. Much research has been done, especially in the last few decades since the advent of extensive sleep disorder clinics and their related studies. Some scientists consider the study of narcolepsy to be a key to understanding other sleep disorders. Genetics may be a factor, but it is not thought to be significant. Only 2% of narcoleptics have a first-degree relative with the illness. Studies on twins have shown that if one has narcolepsy, the other will have it only 25% of the time. Most patients experience their first attacks between the ages of 10 and 25, however it can strike those younger than 10 and people in their 30s as well. It is rare for narcolepsy to appear after the age of 40. Narcolepsy occurs at equivalent levels for both genders and across all racial and ethnic groups. For reasons unknown, some countries have significantly different rates of incidence. Israel’s is very low, with only one in half a million Jews getting narcolepsy. The Japanese have the highest rate in the world, with one out of every 600 being affected.
The key to understanding the dynamics of how narcolepsy works may be to compare the sleep patterns of healthy folks with those of narcoleptics. Normally, the sleep cycle begins with a phase known as non-rapid eye movement (NREM). During this time, which may last an hour or two, the brain waves slow down. Then you enter a time of increased brain activity called REM sleep when brain activity increases again. This is when most dreaming is normally done. Narcoleptics seem to bypass NREM and immediately go into the REM phase. This can happen very quickly and at strange times, such as in the middle of the day. This phenomenon explains some of the symptoms narcoleptics have that are usually associated with REM or “dream sleep,” such as vivid dreams, slackness of muscle tone, and sleep paralysis.
Much of the research points to abnormal levels of certain brain chemicals as triggers for narcolepsy. Hypocretin is a substance that helps to regulate our sleep. It is important in waking us up and keeping us awake. People who have narcolepsy are usually found to have lower than normal levels of hypocretin in their brains.
Some scientists believe there may be an inherited abnormal gene that is partially responsible for narcolepsy, but it has yet to be identified. There is even some speculation that narcolepsy may be an autoimmune disorder. One theory is that the immune system mistakenly targets hypocretin-producing cells in the brain, and attacks them as if they were harmful invaders.
How is Narcolepsy Diagnosed?
Obvious symptoms such as falling asleep often during the day or cataplexy are clues that point towards narcolepsy. If narcolepsy is suspected, an overnight stay at a sleep center may be the next logical step to firm up the diagnosis. These specialists in sleep disorders will commonly use several tools to analyze your case:
- The Epworth Sleepiness Scale is a questionnaire used to help diagnose narcolepsy. Patients rank certain situations regarding if they get sleepy in the midst of them, and if so, how sleepy.
- Polysomnogram: The patient is hooked up to electrodes that measure certain factors as you sleep. These include brain activity (electroencephalogram), heart activity (electrocardiogram), muscle movements (electromyogram), and eye activity (electro-oculogram).
- Multiple sleep latency test: Basically, this test measures how fast you are able to fall asleep during the day. Abnormally fast entry into REM sleep indicates narcolepsy.
What Treatments Are Available for Narcolepsy?
Unfortunately, the most common treatments for narcolepsy involve dangerous and sometimes addictive drugs. Various stimulants are used to help narcoleptics stay awake during the day. Certain antidepressants are prescribed, as they help to suppress REM sleep and alleviate other symptoms such as cataplexy and hallucinations.
Some practical steps that you can take to avoid using medications are:
- Stay on a strict schedule of going to sleep and getting up at the same time every day.
- Avoid caffeine, alcohol, and nicotine. These may interfere even more with your sleep cycles and prevent quality sleep at night.
- Take naps as needed during the day, whenever possible
- Regular exercise daily will help you sleep better at night and be more alert during the day.
- Learn as much as you can about your illness, and share your knowledge with loved ones and your employer.