Ian Campsall, MA
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"If hepatitis C makes me feel so tired, surely sleeping more would help, wouldn’t it?" How many persons with hepatitis C have asked themselves this question, and how many have come to the conclusion that no matter how much they sleep, they just can’t sleep enough—that sleep, itself, doesn’t seem to work?
There has been little if any research done on the question of the effects of hepatitis C on sleep, and, as a result, patients and doctors must grapple with the problem without the benefit of solid data. Sleep, itself, is not fully understood, and, while advances are being made in the diagnosis and treatment of hepatitis C, there is still much that remains to be discovered. The result, as with many issues and symptoms related to hepatitis C, is that patients are faced with a confusing and frustrating set of symptoms on which medical science can currently shed little light. However, it is possible to bring some greater measure of clarity to the subject by examining the facts concerning sleep, and by relating the experiences of persons with hepatitis C in that context.
Sleep is, quite simply, as fundamental to life as water, air, or food. In the first stage of sleep the muscles relax and the brain waves become irregular and rapid; in the second stage the brain waves grow in size and are accompanied by bursts of electrical activity. During the third and fourth stages, deep sleep, characterized by large slow waves, occurs. Approximately an hour later dream state, or REM (rapid eye movement), sleep begins. Your eyes are in constant motion, and your brain waves are almost the same as when you are awake. REM sleep may comprise only 25% of the total hours we spend sleeping, but it is vital to feeling well-rested and alert.
When a disruption in a person’s sleep pattern or rhythm occurs, he or she may experience an inability to concentrate or focus, irritability or moodiness, loss of energy or fatigue, and a general decline in quality of life—symptoms surprisingly similar to those produced by hepatitis C itself. Sleep related problems have reached epidemic proportions in North America. A recent Gallup Poll found that one in two Americans suffers from sleeplessness or insomnia at some point in their lives, and, furthermore, that 30-40 million Americans are afflicted with serious sleep disorders.
For the person living with hepatitis C the situation is further complicated by the fact that they are already coping with an illness that has serious physical and psychological consequences, both of which have repercussions on a person’s ability to rest. The interrelated array of systems that regulate sleep are affected by the damage inflicted by hepatitis C to the body, and the trauma wreaked on the mind by the fear, frustration, and stress of having to cope with the disease. As one hepatitis C sufferer stated, "I can’t tell if I am exhausted, or sick, or just sleep-deprived and crazy. [Sleeplessness] has interfered in an EXTREME manner with my ability to work. I do not remember the feeling of being totally rested, and energetic."
People with hepatitis C suffer from the same sleep disorders as anyone else, but the combination of general stress and the mayhem caused throughout the body by the hepatitis virus seems to make the symptoms more erratic and disruptive. Reported symptoms include constantly having to get up to urinate, being unable to sleep for more than an hour, sudden violent awakenings without any apparent cause, feeling extremely hyper, and sleep terrors. Not surprisingly, many people also find that the pain caused by hepatitis C makes falling asleep difficult. One man found that his liver was so swollen that he was unable to sleep on his left side. However, the most common sleep symptom reported is not feeling rested or refreshed in the morning, but, rather, feeling even more exhausted than before going to bed.
Sleep apnea is one of the most common sleep disorders and affects nearly 10 million Americans. Persons who have this disorder experience a temporary stoppage of breath that may last up to ten seconds and causes the person to awaken briefly as he or she gasps for breath.
Many hepatitis C patients suffer from sleep apnea; however, as it is also related to age and weight, apnea is most likely more closely linked to peripheral symptoms of hepatitis C, such as weight gain, than the disease itself. A device known as a CPAP (continuous positive airway pressure) can be placed in the mouth before sleep to prevent the airway from closing and allow the patient to sleep normally.
Another disorder that many hepatitis C patients have to contend with is restless legs syndrome (RLS), which is characterized by an urge to move the legs in order to relieve uncomfortable sensations that are often described as a creeping or crawling, or tingling, cramping, burning or just pain. Some patients have no definite sensation other than the need to move their legs. RLS is an often reported incident on many of the hepatitis C internet chat and support groups, and has been in quite a few cases the symptom that led to the diagnosis of hepatitis C. Several studies have linked RLS with the neurological complications associated with hepatitis C virus infection, either directly or through hepatitis C related fibromyalgia, as well as with nerve damage in the legs due to diabetes, kidney problems or alcoholism. RLS can also be the result of a pinched nerve root caused by arthritis in the lower back. Most cases of RLS respond well to medical treatment.
Other symptoms of RLS include: a need to move the legs to relieve the discomfort by stretching, bending, rubbing the legs, tossing and turning in bed, or getting up and pacing the floor. The discomfort increases when lying down, especially while trying to fall asleep or during other forms of inactivity, but is at its worst late in the day and at night.
Various drugs have been used successfully in the treatment of RLS: benzodiazepines, the L-Dopa family, and, in serious cases, opiates and methadone. However, as some of these drugs can be harmful to the liver, make sure that your doctor is aware or your medical condition when discussing possible forms of treatment.
The use of melatonin to relieve sleep disorders has become something of a recent fad, and has received a great deal of coverage and hype from the media, but scientists remain sceptical about its current status as a "wonder drug." The exact nature of how melatonin affects how sleepy we feel is not yet clear, but it has been proven that it is effective in quickly relieving jet lag. However, as so little is known about its function in sleep, and as it has been linked to autoimmune hepatitis, melatonin remains a drug that should be monitored for further developments and studies.
Recently, however, scientists have shown that another natural substance, jasmine, is quite effective in inducing sleep. According to Reuters, "researchers found that when people slept in a jasmine-infused space, they moved less during the night. Although people slept the same amount each night, jasmine-smellers reported feeling less anxiety when they woke up." The study also showed that lavender as well "appeared to help with sleep and later awareness . . . but its benefits were not as noticeable as those seen with jasmine."
The most effective strategy for maximizing energy levels and minimizing sleep related problems is establishing a consistent sleep schedule. The importance of being consistent is evident in the fact that many people living with hepatitis C have reported that getting up so much as five minutes too early can leave them feeling fatigued for several days afterwards. That is not to say that you should be a prisoner of your schedule. Design your day to allow as much flexibility as possible, while still allowing time to rest, and make sure that you get to bed ON TIME. Be open and frank about the importance of being consistent with friends, family, and co-workers to avoid misunderstandings.
Furthermore, eat a nutritional diet including a variety of vegetables, fruit, and fibre-rich carbohydrates. Try to avoid animal proteins (especially those high in fat), and foods that are high in saturated fat and sugar. Maintain a regular exercise regimen, but do not exercise just before bed. Drink at least eight full glasses of water daily. Your doctor can recommend vitamins that you can take on a regular basis including multi-vitamins and minerals without iron, such as vitamin E (400-800 IU), selenium (100-200mcg), omega (fish) oil (1000mg). However, never take high doses of supplements. Tobacco, street drugs, and alcohol are all linked to many sleep disorders and should be avoided.
There is one final recommendation. Laugh. Research conducted by William Fry, M.D., a professor emeritus in psychiatry at Stanford University Medical School, has demonstrated that laughter stimulates the immune system. Spend time doing things that you enjoy, and that give you pleasure. Remember, nothing will help you fall asleep faster than knowing that you have accomplished something with your day, and feeling that you are an active contributor to the community in which you live.
The following organizations offer support and advocacy services:
The National Sleep
The Restless Legs
The American Sleep
Copyright January 2003 – Hepatitis C Support Project – All Rights Reserved. Permission to reprint is granted and encouraged with credit to the Hepatitis C Support Project
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