THE MYSTERY. How can people recognize when they have a sleep problem? And how can they explain the problem so that their doctor will recognize it as well? What are the best words to describe symptoms of sleep disorders to help make sure that you and your doctor are speaking the same language?
There are many times when a doctor thinks, “I wish I had been consulted on this case earlier.” This was one of those times. The man in front of me had been complaining of tiredness for about two years. His wife confirmed that he lacked energy. At first his family doctor had assumed that he was depressed. But treatment for depression had not helped, and after routine blood tests revealed nothing unusual, his exhaustion was simply ignored. The patient and his wife were resigned to his being tired, but after about a year, during which the symptom not only continued but became increasingly severe, the wife insisted that the doctor do more tests. One of the tests revealed blood in his stools. This quickly led to the diagnosis of colon cancer, and the patient underwent surgery. The patient had been referred to me because he had insomnia, and his doctor assumed that the insomnia was caused by anxiety over the cancer diagnosis. The patient and the doctor had interacted many times in the two years, but they were not communicating.
“I am tired.” “I feel fatigued.” “I have no energy.” “I am exhausted.” People who think they have a sleep disorder often use phrases like these to describe their symptoms, but their words can mean something quite different to the doctor trying to interpret the symptoms. This miscommunication can stand in the way of a correct diagnosis, and it is often a major obstacle for people seeking help for their sleep problems. For most people, the word tired refers to a physical lack of strength, a feeling that it takes too much effort to engage in an activity or remain alert. Someone might feel this way after a hard day of skiing or doing yard work, or if the person had a medical condition that made him or her physically weak. People with lung or heart diseases might also use the word to describe their inability to perform certain activities because of breathlessness. The military and transportation industries will frequently use the word fatigued when what they mean is sleepy.
To sleep scientists, the word fatigue refers to a lack of strength or an inability to perform daily tasks as a result of prolonged activity. The activity could be physical or mental. Patients more commonly use the expression “I have no energy,” which is vague. Many people say they have no energy when they actually mean they are very sleepy. Some doctors hearing these words might interpret them to indicate excessive sleepiness and refer the patient to a sleep clinic. But other doctors, hearing these same expressions, might interpret them as signals of depression.
Rather than use these expressions, patients should describe what actually happens. For example, rather than saying, “I am tired,” the patient should say, “I always fall asleep watching TV,” or “I fall asleep at my computer,” or some other specific action. Unless patient and doctor are talking the same language, the doctor might be unable to diagnose the problem.
But how can a person tell if he or she is, in fact, sleepy? By recognizing the signs of sleepiness: someone who has the urge to fall asleep at the wrong time and in the wrong place is sleepy. One commonly used questionnaire to gauge sleepiness in adults is the Epworth Sleepiness Score developed by Dr. Murray Johns at the Epworth Hospital in Australia. Using the form below, patients write down the number (0 to 3) that describes how likely they are to fall asleep in different situations. Then they add up the numbers.
People with a total score of more than 12 are as sleepy as people with sleep apnea. People with a score of more than 15 are at high risk of falling asleep when they don’t want to. I have seen some sleep apnea patients who score 3 and others who score 24. Of course people who are sleep deprived and are medically normal might have high scores as well.
Some people do not realize that they are sleepy because the sleep disorder has come on gradually. They have become accustomed to feeling sleepy, so they think that what they feel is normal; consequently, they may deny the symptom. Even if people deny feeling sleepy, people suffering from sleepiness can be a hazard behind the wheel or at risk for injury. They need to learn to recognize their sleepiness symptoms.
A patient may be feeling that something is not right, but may be unable or unwilling to confront these feelings or experiences. Yet such experiences may be the direct result of inadequate sleep or a sleep disorder. For instance, a person might complain of having trouble remembering things or concentrating or focusing without realizing that the root of these problems lay in sleepiness. Although the sufferer might not see it, other people often notice when a person is sleepy.
Some people when they are sleepy develop irritability or a personality change. They might become angry easily or for no reason. They might not interact with others at social occasions or might appear uninterested in things. Some people with more severe sleepiness demonstrate automatic behavior during which they perform common activities in unusual ways. For example, someone experiencing a high level of sleepiness might load the dishes into an oven instead of a dishwasher. The person will generally not have any memory of this behavior. I have seen patients who, while in the state of automatic behavior, have committed violent acts against others or their property yet had no memory of the incident.
Some people experience a form of sleepiness called sleep drunkenness. Such people have much more difficulty becoming alert once they wake up than the average person. Their grogginess might continue for several minutes, up to an hour or more. This is common in severely sleep-deprived people.
A doctor has to sort carefully through the various behaviors described by the patient to discover the sleep deprivation that may be caused by a sleep disorder.
One common phrase used by patients is “I have insomnia.” This term is both a symptom and a diagnosis. Simply telling a doctor that one has insomnia or that one is not sleeping is not enough. Is there difficulty falling asleep, staying asleep, waking up too early, awakening unrefreshed? Is the problem one of these symptoms, or several, or even all? What does the patient feel when trying to fall asleep? Is the sufferer’s mind racing, or is the problem physical—perhaps the patient cannot stop moving. The more accurately and specifically the patient can describe the symptoms, the more likely the doctor is to diagnose the difficulty. (See Chapter 10 for a fuller discussion.)
Being sleepy or being unable to fall asleep is not the only symptom of a sleep problem. There are many types of sleep disorders, and some of them might require treatment or referral to a sleep clinic. The symptoms listed provide clues to these potential problems.
Some patients are fidgety all day and cannot even stop moving at night. Having to keep still (for example, in a movie theater or on an airplane) can be torture. At night the urge to move the legs can become severe, and the only way to relieve the sensation is to move them or to get up and walk around. Some patients complain only about their nighttime symptoms and do not mention the sensation in the legs, instead focusing on the fact that they can’t fall asleep. To help the doctor come to a correct diagnosis, they need to describe all the symptoms. They might describe their legs as feeling hot or cold, or note that they feel as though bugs are crawling under their skin. These are all symptoms of restless legs syndrome, which will be discussed in Chapter 11. In some people these sensations may occur in other parts of the body. Even when asleep such patients move a great deal.
Some people, in the minutes before falling asleep and sometimes in the minutes directly after falling asleep, have dreams or nightmares that include sounds, visually rich images, or even sensations in various parts of the body. These dreams are called hypnagogic hallucinations. They are not normal. People don’t normally dream unless they have been asleep for about ninety minutes. Sleep-deprived people, however, do sometimes have hypnagogic hallucinations, and such symptoms are common in people who have narcolepsy (discussed in Chapter 13). People who experience this type of half-awake hallucination more than once or twice a month should discuss it with their doctor.
Sometimes people awaken during the night and notice that they cannot move. Usually this is because they have awakened from a dream, although they might not remember the dream. This symptom can last from a few seconds to a few minutes, and it can be frightening, leading to a fear of falling asleep (see Chapter 14). The feeling of paralysis sometimes occurs in people who have no other symptoms of sleep disorder; if the paralysis occurs rarely (that is, once or twice a year), it is generally not considered to be a symptom doctors would treat. But it is also a common symptom of narcolepsy (see Chapter 13). Patients with this symptom who are also sleepy in the daytime may have narcolepsy and should discuss the symptom with a doctor.
Sleep behaviors can range from insignificant incidents to actions that might indicate a serious sleep disorder. People who are experiencing the more dangerous symptoms described in this section should discuss them with their doctor.
Sleepwalking and sleep talking. Sleepwalking and sleep talking are very common, especially in children (see Chapter 14). Unless the child does something dangerous, it is not a condition that requires medical attention. Some patients wander and eat while asleep. Often sleepwalkers and sleep wanderers have no recollection in the morning of having done so. When elderly people wander during the evening or at night, it might be a symptom of a more serious problem (see Chapter 7). This behavior is known as sundowning or nocturnal wandering and should be brought to a doctor’s attention since it might be a symptom of Alzheimer’s disease or related to other factors that could be treatable. Another symptom more common in the elderly is awakening confused and disoriented.
Nightmares. Everyone has had the experience of awakening from a nightmare. This is common, and although it can be very frightening for children—and sometimes for adults—it is not believed to be a symptom of a sleep disorder, unless the nightmares are recurring. If the nightmares are frequently very similar, are violent in nature, and are extremely disturbing, they might be a symptom of posttraumatic stress disorder (see Chapter 16) and should be brought to the doctor’s attention. Even sleep terror or night terror—a condition in which people get out of bed during the night or sit up in bed screaming and sometimes sweating, with eyes wide open—is not considered dangerous. It is a variant of sleepwalking. It is sometimes experienced by people with sleep deprivation, however.
Physical reactions to dreams. Some people react physically to or act out their dreams. When this happens, the dreamer might strike out, sometimes hurting his or her bed partner. This is a symptom of REM sleep behavior disorder (RBD), which can be quite severe and dangerous (see Chapter 14) and usually requires treatment. Some people perform sexual acts (sexsomnia) on unwilling partners and cannot remember having done so when they awaken. This symptom should be brought to a physician’s attention.
Excessive movements. Some people cannot stop moving when they sleep. They toss, turn, get up and walk around, fidget, and twitch during sleep. Some even exhibit movements as bizarre as simulating riding a bicycle or running. These are symptoms of a possible movement disorder (see Chapter 11). If people experience such behaviors at night and have insomnia or daytime sleepiness, they might require treatment.
Head banging and body rocking. Sometimes people will have a disorder called head banging or body rocking in which they repeatedly bang their head into a mattress or a pillow or even a wall, or move other parts of their body in a repetitive manner. Some patients roll their bodies continuously while sleeping. This is a movement disorder that does not have important health consequences, although it may occasionally result in self-injury.
Although some of the noises that people make while they are sleeping are not dangerous (for example, the high-pitched grinding sound of bruxism, or teeth grinding, which can be disturbing to the bed partner and can damage the teeth), some can be markers of a severe sleep problem. Sleepers do not hear the noises they make, but the noises can impair the sleep of a bed partner.
Snoring. The most familiar noise made by sleepers is snoring, and the doctor will understand what the patient means by this term. It will be helpful, however, if the patient can describe the snoring as accurately as possible. For instance, snoring can be loud or soft. A bed partner can describe the level and frequency of the patient’s snoring to the medical practitioner. The patient or bed partner should try to describe how many nights a week he or she snores, for what proportion of the night, whether the snoring is more common in one position, and whether alcohol makes it worse.
Awful silences. Snoring is usually continuous; it does not change much over the course of a night. Some people, however, have episodes of silence between snores. These silences, particularly if they are long, can be frightening because they indicate that the snorer has stopped breathing. Some patients, especially women with an upper airway resistance syndrome, might have episodes of snorting that be quite brief and are not especially loud. Like periods of silence, snorting and gasps may be a sign of sleep apnea (see Chapter 12) and should also be described to the doctor. At the end of episodes of apnea or the end of the silence, the person might exhibit very loud snorting, gasping, or deep breathing.
A sleep diary can be a useful tool in helping patients document their sleep habits and patterns. It can help patients and doctors identify patterns that may be disturbing sleep and pinpoint a sleep problem. With the help of a sleep diary, a patient might find, for example, that sleepiness commonly occurs after the weekly late evening aerobics class. Parents can recognize whether there is a problem with their child’s body clock. The diary might illustrate that during the week, the child falls asleep very late and then sleeps much later on the weekend, behavior that suggests his or her body clock is running late. (The body clock is discussed in Chapter 8.)
The American Academy of Sleep Medicine has a downloadable sleep diary at yoursleep.aasmnet.org/pdf/sleepdiary.pdf. The diary takes only a few minutes each day to complete and should be kept in a convenient place, such as on the bedside table. After the patient has filled in the diary for seven consecutive days or longer, he or she should examine it to see whether any patterns or practices emerge that might indicate symptoms of sleep problems. If there are, the patient should bring the diary when he or she visits the health care provider.
After various tests the tired man with cancer was diagnosed as sleepy, the symptom he had first noticed. But when he described it to the doctor he had used the word tired, and the doctor had not asked him specific questions about his sleep patterns, although the insomnia had preceded the cancer diagnosis by about a year. The patient had developed an irresistible urge to move his legs at bedtime, and this interfered with his falling asleep. He had a textbook case of restless legs syndrome, which is often caused by iron deficiency. The patient’s RLS came on because he was developing an iron deficiency caused by his slowly bleeding colon cancer. The insomnia and sleepiness were thus both symptoms of the cancer, and had he and the doctor been communicating better, the cancer might have been picked up much sooner. The patient was still iron deficient when I saw him, and I put him on iron medication, which would probably take care of his insomnia.
Patients need to recognize symptoms of their sleep problems so that they will know whether these symptoms indicate a condition requiring medical attention. But equally important is learning how to communicate these symptoms to the doctor. Questionnaires and diaries can help patients and doctors in identifying a sleep problem. Once they learn to speak the same language, the patients and doctors can move forward in dealing effectively with the sleep problem.
