If you frequently wake up to urinate during the night, do not drink a lot of fluids near bedtime. Most patients with CFS/FMS have frequent waking during the night. Like most people, their bladders are full at night. Because of a full bladder, they think they are waking up because they have to urinate. This is not the case. They are waking up because of their CFIDS/FMS.
If you were to wake up your spouse when you woke up and asked, “Honey, is your bladder full?” he or she would moan, “Uh-huh,” and roll over and go back to sleep. Unfortunately, most people have learned to get up and go to the bathroom when they wake up at night. The bladder is kind of like a baby—if you teach the baby to wake up to play in the middle of the night (that is, if you go to the bathroom frequently), pretty soon it will wake you up to play at night. There is a simple way to remedy this problem. If and when you wake up during the night and you notice your bladder is full, just talk to it (in your mind, so your spouse doesn’t think you’re nuts) and tell it, “Nighttime is for sleeping. We will go to the bathroom in the morning when it is time to wake up.” Then roll over and go back to sleep. If you still have to urinate five minutes later, then you can go to the bathroom. Most of you will find that your bladder will happily go back to sleep, and when you wake up in the morning, you won’t even have to urinate as badly as you did when you woke up in the middle of the night.
Because of the bladder muscle spasticity that is common in fibromyalgia, you may be afraid that you will wet yourself if you don’t get up to urinate. The large majority of people with CFS/FMS will not experience incontinence. If this concerns you, the first couple of nights you may want to use an incontinence protection product such as a Depend undergarment just so you don’t worry about wetting yourself. After a few nights, you will be comfortable sleeping without protection. Although this sounds like a low-tech approach to treating a sleep problem, you will be amazed at how beneficial it is. Try it and see.
Put the bedroom clock out of arm’s reach and facing away from you so you can’t see it. Frequently looking at the clock aggravates sleep problems and is frustrating.
Decrease the amount of time you spend in bed. Although you might think that you would increase your deep sleep time by spending extra time in bed, this is not what happens. When people routinely stay in bed longer than they need to, they may get their usual deep sleep in the beginning of the night and then have long awakenings and very shallow sleep during the middle of the night. Then they may sleep soundly again when it is time to wake up. When such people consistently decrease the amount of time spent in bed to the length actually needed for sleep, they gradually squeeze out the long middle-of-the-night awakenings. Two of the medications discussed later in this chapter (Ambien and Sonata) are especially helpful for this.
Have a light snack before bedtime. Hunger causes insomnia in all animals, and humans are no exception. Adding foods high in the amino acid tryptophan, such as milk and turkey, also contributes to sleep.
Get out of bed at the same time each morning, even after a poor night’s sleep. Regular rising supports a healthy circadian (day/night) rhythm and can be helpful. You can nap up to one and a half hours a day, but try not to nap much after 2 p. m. if possible. Set an alarm clock for one to one and a half hours of nap time and splash cold water on your face when you wake up.
If you follow the suggestions above, you can be sure that poor sleep hygiene is not your problem. This is important because your doctor may want to blame your insomnia on poor sleep hygiene. It is important to let him or her know that your problem is not poor sleep hygiene; it is hypothalamic sleep-center suppression. In addition, there are often diagnosable sleep disorders that may be affecting your sleep, such as sleep-disordered breathing, restless leg syndrome, and narcolepsy. These may resolve themselves once you take care of the hypothalamic sleep-center suppression, so I’ve included basic information on the most common disorders and how to treat them at the end of this chapter.
Sleep Medications and Remedies
The hypothalamic sleep disorder in CFS/FMS is usually too severe to be dealt with by any single prescription or natural remedy. What works best is to mix these until you find a combination that gives you eight to nine hours of solid sleep a night without a hangover. Natural remedies can be very helpful, and in general, I much prefer natural remedies to prescription medications. Although you’ll likely need a mix of natural and prescription therapies, the natural remedies can decrease the amount of medication you need, and therefore the cost and side effects.
In addition, once you come off sleep medications (usually after nine to eighteen months, although they can be used indefinitely, if needed) you may find that all you require are the natural remedies. Whatever treatments you use, though, it is important that they not only increase the duration of sleep but also maintain or improve the deep stages (stages 3 and 4) of sleep. Unfortunately, many sleeping pills in common use—for example, Dalmane, Halcion, and Valium—actually worsen the quality of sleep by increasing the amount of light-stage sleep and decreasing the amount of deep-stage sleep even further. You want to be certain that the treatments and medications you use leave you feeling better the next day, not worse.
There are several approaches to using sleep treatments in CFIDS/ FMS. Some doctors prefer to use a single medication or treatment and push it up to its maximum level. If that works, great; if not, they stop that medication and switch to another. Other doctors prefer to use low doses of many different treatments together until the patient is getting good, solid sleep regularly. I strongly prefer the latter approach, for two main reasons. First, my experience is that people with CFS and fibromyalgia can be medication-sensitive if high doses are used. Most of a medication’s benefits occur at low doses and most of the side effects at high doses. Second, each medication is cleared out of the body on its own schedule, regardless of whether it is taken with other medications. If you take a low dose of a sleep medication, so that it is out of your body when it is time to wake up eight hours later, the blood level may not be high enough to keep you asleep all night. If you increase the dose to the level at which it does keep you asleep all night, it may not be cleared out of your body until 2 p. m. the next day, leaving you feeling very hungover. If, however, you combine low doses of four or five different sleep aids, each of them will be cleared out of your body by morning. Meanwhile, the effective blood levels that you have during the middle of the night from each treatment are additive and will keep you asleep. Because of this, most people find that it takes anywhere from three to seven different treatments combined to get eight to nine hours of solid sleep each night without waking prematurely or being hungover.
Getting Started
My “long-form” treatment checklist at www.vitality101.com lists more than twenty-five natural and prescription sleep aids. Depending on your preference, you may want to start with the natural sleep aids, see how those work, and then add the prescription ones as needed. Because of the severity of the sleep problem in CFS/FMS, my preference is to start with at least one of the sleep medications (Ambien and/or Desyrel) combined with some of the natural remedies—but this is a decision to be made by you and your physician. However you choose to do it, on the first night simply begin with one of the remedies at the lowest recommended dose.
For all of the treatments recommended (except 5-HTP), you will know the effects (both positive and negative) that the treatment is going to have by the next morning. In rare cases, some of these treatments have the opposite of their intended effect, activating you instead of putting you to sleep. If this happens, don’t use that treatment. In addition, approximately 3 percent of people find that all sleep treatments stop working after three days to a month. If you are one of these patients, simply rotate groups of treatments that work—going back to the first ones when you’ve finished the last ones on your list.
Once you have tried a low dose of a single treatment, increase the dosage each night until you either get eight to nine hours of solid sleep without a hang
over, until you get side effects (for example, next-day sedation), or until you are at the maximum dose noted on the checklist. It is worth noting the lowest dose that gives you the most benefit. In other words, you may find that 50 milligrams of Desyrel is just as effective as 150 milligrams, in which case there is no need to take the higher dose. Once you have tried one treatment, you can go ahead and add in a second one in the way I just discussed, and then a third one, and so on. You may also initially drop the earlier treatments, using each of the new ones by itself so you can see what each one does by itself. Or you may choose to add one treatment to the next. Basically, you are trying the treatments on to see what “fits,” in the same way you would try on shoes to see which ones feel the best. Once you have found the combination of treatments that feels the best, you can simply stay on that combination. You can even safely take most of the medications on the checklist together if needed to get eight to nine hours of solid sleep a night. Your doctor should be able to provide guidance as you find the best treatments.
It is not uncommon to see your sleep worsen again during periods of increased stress—whether physical or emotional—and the flaring of your illness. During these times, increase the treatments as needed to maintain seven to eight hours of solid sleep without waking prematurely or being hungover. I find that patients do not have a problem with continually having to escalate the dose, so don’t worry about increasing the treatments during periods of stress or flaring of your illness. The best way to need less medication in the long run is to use as much as it takes to get eight hours of solid sleep each night for six months. When you are sleeping well and feeling better for six months, you can then decrease the treatments as long as you continue to get eight hours of solid sleep each night. Most people find that they can taper off all sleep medications after about eighteen months. Other people need to take some of the sleep treatments for years. This is okay.
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Side Effects of Sleep Aids
For all of the medications listed in this section, any side effects that you may notice will occur the same day that you take the medication. I have not seen any “fly now, pay later” side effects from prolonged use. The exception is that less than 1 percent of people who take Ambien for more than a year develop an unusual depression, which dramatically resolves one to three days after stopping the sleep medication. In these rare situations I simply leave the person off Ambien. I have not seen Ambien worsen symptoms in patients with preexisting depression. I’ve also seen sleepwalking and eating in approximately one patient per thousand. These side effects only occurred when the individuals were taking at least 15 milligrams a night. Although we have been aware of this for many years, it has just recently received media attention. I suspect that this is largely because two new sleep medications, Lunesta and Rozerem, came out and we’re seeing the battle for market share between these companies. I have not found these two new medications to be very effective in treating disordered sleep in my CFS and FMS patients.
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I tend to be highly opinionated and very picky about what I find works well and what does not work as well. Because there is so much marketing out there for both natural and prescription remedies, it is hard for most nonexperts to tell what works. I decided more than fifteen years ago that my position would be that of a patient advocate and that I work for you. Because of this, to maintain both credibility and objectivity, I accept no money from either pharmaceutical or natural products companies and direct that all royalties for products that I design be donated to charity.
Natural Sleep Remedies
Most of the natural sleep remedies discussed here are not sedating, yet they help you fall asleep and stay in deep sleep. The good news is that many natural remedies that are effective for sleep also directly help pain because they are muscle relaxants and may also improve libido.7–11 The first six herbs listed below are available in a combination formula as well.
My favorite natural sleep aids:
SUNTHEANINE
Theanine, an amino acid (protein) that comes from green tea, has been shown not only to improve deep sleep, but also to help people maintain a calm alertness during the day. L-theanine likely plays a role in the formation of gamma-aminobutyric acid (GABA). This inhibitory neurotransmitter is critical for sleep, and is what is stimulated by many medications that help improve sleep. L-theanine also directly stimulates the production of alpha brain waves during the day.12–13 These brain waves are associated with an awake yet relaxed (almost meditative) state.14 L-theanine is also often used in weight-loss products, as studies show that green tea helps with weight loss, and the animal model studies suggest that the theanine in the green tea contributes significantly to this.15 Green tea also is helpful as an immune stimulant and has many other benefits; however, the amount of L-theanine present in green tea is not enough to advocate drinking it as a sleep aid.
The only form of theanine that I use and recommend is called Suntheanine (pure L-theanine), as most other brands include inactive forms of the theanine that block its effectiveness. In fact, Suntheanine is the only form that most companies that maintain high quality standards will use in their products. In Chapter 8, “More Natural Remedies,” I discuss Suntheanine at length in the section on how to treat anxiety without worsening brain fog. As the FDA just approved its use as a food additive in the United States (it’s been used in drinks in Japan for decades for its calming effects), it may just be a matter of time until the barista at the local Starbucks asks, “One pump of Suntheanine or two?”
Take 50 to 200 milligrams at bedtime, although you can also use it several times a day for anxiety.
WILD LETTUCE
Traditionally, wild lettuce has been found to be effective for anxiety and insomnia, as well as for headache, muscle, and joint pain. Wild lettuce may also decrease restless leg syndrome.
Take 30 to 120 milligrams at bedtime.
JAMAICAN DOGWOOD
This extract acts as a muscle relaxant and also helps people to fall asleep while calming them.7 According to tradition, Jamaican dogwood was once used by Jamaican fishermen. Large amounts were thrown in the water. The fish would then fall asleep and be easy to net.
Take 12 to 48 milligrams of the extract at bedtime.
HOPS
The hops plant is a member of the hemp family, and the female flowers are used in beer making. It also has some hormonal activity, suppressing breast, colon, and ovarian cancer in test-tube studies, and has been reported to reduce hot flashes in menopausal women. Hops also has antibiotic and antifungal activity and a long history of being used as a mild sedative for anxiety and insomnia. A study showed an improvement in insomnia, with effectiveness similar to that of the Valium family medications. It is considered safe.8 As any beer-drinking college student can tell you, hops helps your muscles relax and promotes sleep, as well.
Take 30 to 120 milligrams of a hops extract at bedtime.
PASSIONFLOWER (PASSIFLORA)
This herb is commonly used throughout South America as a calming agent, even present as an ingredient in sodas. A number of studies support its having a calming effect. Herbalists have also used it to treat muscle spasms, colic, dysentery, diarrhea, anxiety, and menstrual pain, and it may also increase men’s libidos, all problems often associated with CFS/FMS.9 Passionflower has other pain-management benefits. In one animal study, it was shown that it decreases morphine tolerance, so that less medication is needed, as well as decreasing morphine withdrawal symptoms.10 Passionflower may help decrease the pain of fibromyalgia.
Take 90 to 360 milligrams of the extract at bedtime.
VALERIAN
Commonly used as a sleep remedy for insomnia, valerian has many benefits, as shown in a number of studies, including an improvement in deep sleep, speed of falling asleep, and quality of sleep without next-day sedation. The benefits were most pronounced when people used valerian for extended periods of time, as opposed to simply taking it for one night. Valerian’s effectiveness has been
compared to that of a Valium family medication (oxazepam), without the “hungover” feeling present with most Valium medications.
A review of multiple studies found that “valerian is a safe herbal choice for the treatment of mild insomnia and has good tolerance…. Most studies suggest that it is more effective when used continuously rather than as an acute sleep aid.”11 Clinical experience shows that for around 10 percent of people, valerian is energizing and may keep them up. If this happens to you, you can use valerian during the day instead of at night, as valerian does have a calming effect and can be used during the day for anxiety as well.
Take 200 to 800 milligrams of the extract at bedtime.
These herbs may be used in any combination at the suggested doses above. Because I have found these herbs to be dramatically helpful in patients with disordered sleep, anxiety, and/or chronic pain, I worked with Enzymatic Therapy to develop the Revitalizing Sleep Formula, a supplement that contains optimum doses of all six herbs. If you prefer, take one to four capsules at bedtime to help you sleep or take the same dosage one to three hours before bedtime if the main problem is one of falling asleep. As with the individual doses of the herbs above, these capsules can also be used during the day for anxiety and pain. Some CFS/FMS patients have also reported an increase in their libido while taking this combination.
From Fatigued to Fantastic! Page 7