80 milligrams at bedtime because of the aforementioned side effects.
Alprazolam (Xanax). Although alprazolam is related to Valium, it produces much more desirable effects: a good three to five hours of sleep with fewer morning hangovers and improved sleep quality. It is good for anxiety as well, and tends to be well tolerated. It can be addictive, however, so you’ll want to monitor this prescription closely with your doctor. The usual dosage is half to four 0.5-milligram tablets at bedtime or during the night.
Quetiapine (Seroquel) and Olanzapine (Zyprexa). These two antischizophrenic medications can be helpful for sleep as last resorts. The main problems are a flattening of emotion and sometimes dramatic weight gain. If absolutely necessary, take 12.5 to 50 milligrams at bedtime.
In addition to the prescription medications above, the serotonin-raising antidepressants known as SSRIs can help improve sleep, and often have many other benefits for CFS/FMS, even if there is no depression present. If depression, low blood pressure, and/or pain are problematic, these can also be helpful. They include fluoxetine (Prozac), paroxetine (Paxil), and sertraline (Zoloft). Experience suggests that by lowering elevated levels of the pain transmitter called substance P, they can decrease pain. SSRIs (specifically Prozac and Zoloft) also improve neurally mediated hypotension (NMH), which is often seen in these diseases.20 They take about six weeks to start working. Most patients find that these antidepressants energize them and do best taking the medication in the morning. Occasionally, the increased energy interferes with sleep. Other patients find the medication sedating, and these patients should take it at night.
By using a combination of the treatments discussed above, almost all people with CFS/FMS can get eight to nine hours of solid sleep a night without waking prematurely or having a hangover. It can take a lot of trial and error to find out exactly what is best for you, but it is worth being persistent. Once you are feeling well for six to nine months, or you find you need less medication to get eight to nine hours of solid sleep without waking prematurely or having hangover, you can go ahead and decrease the medication. If I have a patient who has been feeling better and then finds his or her fatigue or pain coming back, one of the first things I ask is, “How is your sleep?” The usual answer is, “Not good.” Many people, because of fear of addiction and having to use constantly escalating doses of sleeping pills, are afraid to take enough medication to get adequate sleep. They are so grateful to get five hours of sleep a night that they settle for that. That’s a bad idea. I recommend taking whatever is necessary to get eight to nine hours of solid sleep without waking prematurely or having a hangover, even if this means taking several of these medications at one time. Your CFS/FMS specialist should be able to address any concerns you may have about taking natural and/or prescription sleep medications.
After you’re better, you may also occasionally find that your sleep worsens for a while during physical and/or emotional stresses. If this occurs, increase or resume your sleep medications for as long as you need and then taper them back down or stop them when the problem is resolved. Sometimes poor sleep persists, and when this happens there is usually an underlying cause. If the cause of your sleep disruption is not obvious, you may have recurrent yeast overgrowth, which we talk about more in Chapter 5. Please be sure to do what you can to achieve the goal of adequate good-quality sleep. You’ll be very happy you did.
Other Critical Sleep-Related Disorders
In addition to poor sleep caused by hypothalamic dysfunction, there are four other sleep-related disorders that contribute significantly to the insomnia and other sleep-related symptoms seen in CFS/FMS. The first two fall into the category of sleep-disordered breathing (SDB) and the other two are restless leg syndrome (RLS) and narcolepsy. Treating these can markedly improve your symptoms.
SLEEP- DISORDERED BREATHING (SDB)
Problems can occur anywhere from air entering our nose to the pipes that carry air into our lungs. During sleep we are designed to breathe through our nose. However, there are several reasons why some people find it difficult to breathe through their nose during sleep. These include the size of the nostrils, obstruction of the air passageways, and nasal congestion caused by yeast overgrowth secondary to excess sugar and antibiotic use (see Chapter
5). In addition, if the tissues are prone to collapsing anywhere along the path air is carried, this can also prevent you from getting the air you need while you’re sleeping. If oxygen is unable to be delivered around the body and in particular to the brain during sleep, sleep quality is affected and can cause not just excessive sleepiness during the day, but also many of the symptoms seen in chronic fatigue syndrome and fibromyalgia.
If the breathing problem occurs in the upper airway (e. g., the nose) it is called “nasal resistance,” which can contribute to sleep-disordered breathing by causing upper airway resistance syndrome (UARS), snoring, and obstructive sleep apnea (OSA). These syndromes are part of the spectrum of sleep-disordered breathing. When the breathing problem is mild, it manifests as UARS, and most standard sleep studies will not detect it unless specifically looking for it. When the blockage of air is more severe, as more often occurs lower down in the airway, it manifests as sleep apnea. Paradoxically, the symptoms of UARS may be more severe than those of sleep apnea, and are more likely to mimic CFS and fibromyalgia. Just as it is common to find that people with CFS/FMS have sleep-disordered breathing, the reverse is also true. In a study of those with sleep-disordered breathing, half of the women and 6 percent of the men were also found to have fibromyalgia.21
Although both UARS and sleep apnea are caused by blocked airflow while sleeping, there are many critical differences in the problems they cause: 22
Chronic insomnia with frequent awakenings and the inability to fall back asleep tends to be more common in patients with UARS than those with sleep apnea. 23
Patients with sleep apnea tend to fall asleep easily during the day (such as when driving), while patients with UARS are more likely to complain of fatigue than sleepiness.
Patients with sleep apnea tend to be overweight, while those with UARS can be any weight.
About 50 percent of patients with UARS are women, while only 8 percent of those with sleep apnea are female.
Upper airway resistance syndrome is often accompanied by a spastic colon and low blood pressure with light-headedness on standing,24, 25 while sleep apnea is usually associated with high blood pressure.26
People with UARS usually have cold hands and feet and other symptoms of hypothyroidism and a brain-wave pattern called alpha intrusion into delta sleep, which often also occurs in CFS and fibromyalgia.
UPPER AIRWAY RESISTANCE SYNDROME (UARS)
UARS is often misdiagnosed as chronic fatigue syndrome, fibromyalgia, or even attention deficit disorder/hyperactivity27 and may be a key contributor to CFS and fibromyalgia. The sleep disorder was first recognized in children in 1982,28 but the term UARS was not used until adult cases were reported in 1993.29 With use of newer techniques, it has become easier to identify subtle changes in breathing patterns during sleep, and recently UARS has been linked to not just CFS and fibromyalgia but also to ADD and chronic insomnia.
Unfortunately, there is no good way to diagnose UARS without going to a sleep lab that specializes in looking for it. Unlike sleep apnea, which actually prevents air from getting into your body and causes the oxygen levels in your blood to drop, UARS does not cause this or necessarily even a decrease in airflow. It is simply the increased work of breathing that tends to repeatedly disrupt sleep during the night. If you are going to have a sleep study, check with the lab before doing so to be sure that they will be checking for UARS. Although in the past the gold standard for doing this testing required putting a small tube down into the esophagus, newer technologies that look for pressure changes in your nose or even alterations in breathing or pulse wave signals are already making this testing more user-friendly.
If you are unable to go to a sleep clinic, there is a ssim
ple nose test to see if you are suffering from nasal resistance. Looking in a mirror, press the side of one nostril to close it. With your mouth closed, breathe in through your other nostril. If the nostril tends to collapse, try holding it open with the flat side of a toothpick. Test both nostrils. If breathing is easier with one nostril held open, using nasal dilators or strips when sleeping (see below) may help.
TREATMENT FOR UARS
Although a mild decrease in airflow while sleeping may not seem like a big problem, it has been shown to disrupt sleep enough to cause and/or perpetuate CFS/FMS. Therefore, keeping your airways open can be critical.30
Over the years, a simple nasal dilator called Nozovent (available online) has proved to be one of the most popular and easy-to-use devices to enhance nasal breathing. This device is not just for snorers, but can also be used by anybody who suffers from nasal resistance. Another easy option is Breathe Right nasal strips, which are available at most pharmacies and many supermarkets. Also, a product called the Sinusitis Nose Spray, which combines itraconazole (Sporanox), xylitol, mupirocin (Bactroban), and dexamethasone, is available by prescription from the ITC compounding pharmacy (see Appendix E: Resources) and is often very effective at treating the nasal congestion and sinusitis that can trigger UARS.
I would recommend trying each of these for one month and even all three together, if necessary, and seeing how you feel. If they help, suggesting the presence of UARS, you may wish to consider CPAP or an oral appliance, which are even more effective.
Continuous Positive Airway Pressure (CPAP) is often one of the first recommendations a doctor will make for this condition. The CPAP delivers air into your airway through a specially designed nasal mask that prevents your nasal passages from collapsing. Oral appliances to move the jaw forward can also help, and in some severe cases, surgery on the soft palate or even to widen narrowed jawbones may be necessary.
SLEEP APNEA
Sleep apnea is a condition in which you repeatedly stop breathing during the night. There are two main types of sleep apnea. One is obstructive, in which the pipe that carries air into the lungs gets blocked intermittently; the other is central, which means that the brain trigger that controls breathing stops working intermittently. Obstructive sleep apnea (OSA) is the condition that we are most concerned with in CFIDS/FMS.
In OSA, the pharynx (throat) repeatedly collapses during sleep. The person with OSA fights to breathe against a blocked airway, resulting in decreased oxygen levels in the blood. Eventually, the sense of suffocation wakes the person, the throat muscles contract, the airway opens, and air rushes in under high pressure. When the airway is opened, the rushing air allows the patient to once again drift back into sleep, but creates a loud gasping sound. People with OSA are generally not aware that this is happening, although their partners often have severely disrupted sleep from the snoring and gasping. This cycle repeats itself many times throughout the night, and this constant waking from deep sleep, as well as the loss of oxygen in the blood, can cause next-day sleepiness, brain fog, poor concentration, and mood changes. Another side effect of OSA is high blood pressure (in contrast to low blood pressure in UARS). I generally recommend that any CFS/FMS patient who has high blood pressure, snores, and is overweight consider testing for sleep apnea.
There is a lot of controversy about how common OSA is. As is the case for other illnesses, there is not even an agreement about how to define it. Generally, if the throat closes off for at least ten seconds with no airflow, it is considered to be an apneic episode. This lack of breathing for ten seconds is enough to cause the oxygen level to drop in the blood and to cause one to go from deep sleep into light sleep. Many sleep specialists define sleep apnea as having five or more episodes of decreased breathing per hour in association with daytime sleepiness. Although some specialists estimate that OSA is present in only 3 percent of the adult population, a recent study of all patients in five general medicine doctors’ offices suggested that approximately 17 percent of adults had clinically significant sleep apnea, which is defined as having at least fifteen episodes an hour of nonbreathing during sleep. This study suggests that sleep apnea may be much more common than previously thought, and the numbers of diagnosed individuals will rise when a doctor specifically looks for the disorder.31 In one study, sleep apnea was present in almost 50 percent of patients with CFS.32 Although sleep apnea is diagnosed by a positive overnight sleep study, fewer than eight of ten thousand patients are referred for sleep studies, though it would be expected that as many as seventeen hundred of each ten thousand patients will have sleep apnea. This is because doctors simply have not been trained to look for OSA. In fact, as noted in an editorial in the Annals of Internal Medicine, “Physicians have been shown to receive, on average, a total of only 2.1 hours of formal education in sleep medicine during their medical school training. Sleep history is typically skipped in the general history.”33 When physicians did receive training about sleep apnea, the number of patients they sent for sleep-apnea testing increased dramatically.
CAUSES OF SLEEP APNEA
The main cause of OSA is being overweight. Just as fat deposits develop elsewhere in the body, they also occur in the tissue surrounding the throat. When lying down, the angle of the head can actually cause compression of the pipe that carries air into the lungs. As noted above, because of the often large weight gain caused by the metabolic disturbances in CFIDS/FMS, OSA can occur and complicate treatment of these illnesses. The primary symptoms associated with sleep apnea are snoring and daytime sleepiness. Having a neck circumference of seventeen inches or more also predisposes one to OSA. And because we inherit certain physical characteristics of the throat, there also appears to be a genetic predisposition to sleep apnea.
There are other problems that occur besides the daytime sleepiness in sleep apnea. As noted above, high blood pressure is common. Studies have also shown that patients with severe sleep apnea are at a two-to sevenfold increased risk of having an automobile accident, as they tend to fall asleep while driving. There is also a possible risk of heart and lung damage as a result of untreated OSA. Although some doctors do not consider OSA to be significant until there are fifteen or more apneic episodes per hour of sleep, evidence suggests that even five or more episodes per hour are associated with increased risk of auto accidents and high blood pressure.
DIAGNOSING SLEEP APNEA
Symptoms that suggest sleep apnea are snoring, being overweight, hypertension, daytime sleepiness, periods where breathing stops at night, and frequent auto accidents. If you have several of these symptoms, you should have an overnight sleep study done. During this test, several aspects of sleep are measured. An electroencephalogram (EEG) measures the brain-wave patterns that tell the depth of sleep and gives a printout of how much time is spent in the various stages of sleep. It can also tell how long it takes to fall asleep, how many times you wake during the night, and how many actual hours of sleep you get. Respiratory monitors can measure airflow and tell if the blood oxygen level is dropping, which demonstrates the apnea. The test should also be able to check for leg movements to look for restless leg syndrome (more about this later in this chapter) and to monitor for UARS as well.
This test can be expensive, running approximately $2,000 dollars. Because of the cost, insurance companies are sometimes hesitant to pay for it. It is a good idea to have the sleep laboratory get preauthorization from your insurance company before the test is done. To minimize the high costs, it is common and a good idea to have what is called a split-night study. When this is done, technicians spend the first half of the night looking for evidence of clinically important sleep apnea. If they find it, they put a mask on you that gently maintains the pressure in your throat, which in turn keeps your airway from collapsing. This is like gently blowing into a balloon to keep the opening open. They will do a CPAP titration to determine the optimum mask pressure needed to keep your airway open.
For sleep testing, the lab will often recommend that you be off all
sleep medications for several nights before doing the test. If you have not yet started sleep medications, this is reasonable. However, I recommend that patients who have been on sleep medications stay on them during the test. I suggest this for three reasons. First, because most CFS/FMS patients need the sleep medications, as a doctor I need to know whether they are developing sleep apnea from the medication. The second is that, during testing, it is often difficult to fall asleep hooked up with wires in a strange environment and hearing the noise of the technician. It is not uncommon to have inadequate sleep studies where the person is simply not able to sleep for a significant amount of time during the night. The result is an expensive and useless study, which, at best, the doctor recognizes was not effective. At worst (because the person did not sleep much and therefore had no periods when he or she stopped breathing), the lab incorrectly concludes that sleep apnea is not present. The third reason I recommend staying on whatever sleep aid you might be taking is that should you require the CPAP pressure test, it would need to be adjusted to the medications you’ll be taking to sleep at home.
Sometimes simply doing a screening test by videotaping yourself while sleeping can be helpful. Although you cannot see UARS on videotape, most people with this problem do snore. Because of this, if the videotape (or audio-tape) shows that you do not snore, and the videotape does not show your legs jumping around or that you stop breathing during sleep, looking for sleep-disordered breathing or restless leg syndrome becomes less important.
TREATING SLEEP APNEA
There are several treatments for sleep apnea, and they fall into three main treatment categories: behavioral, pharmacologic, and mechanical. Let us consider each in turn.
From Fatigued to Fantastic! Page 9