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Sleeping Soundly When You Are HIV Positive

A Good Night's Sleep Is an Elusive Dream for Many People Living With HIV

Winter 2013

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Sleeping Soundly When You Are HIV Positive

Before starting HIV medication, flight attendant Terry Wong never had a problem with jet lag or sleeping. "I could sleep just about anywhere anytime," he recalls. "If I was tired and there was a bed, I would pass out and be snoring in minutes." Diagnosed with HIV 15 years ago, Terry's health took a nosedive seven years later -- his weight dropped from 175 to 109 pounds and his CD4 count plummeted to zero. He was hospitalized for a week and started HIV treatment immediately. The meds saved his life but when combined with flying, they made getting some shut-eye a thing of the past.

Once on treatment, Terry started to gain weight and his health steadily improved, allowing him to return to work shortly afterwards. That's when the insomnia hit: "When you're switching time zones regularly, juggling your sleep and medication schedule without missing a dose becomes very complicated." At first, he took his meds with lunch when in Vancouver. That meant that from his regular destination, Hong Kong, he had to take them at 3 am. He would call the hotel front desk to order a wakeup call and room service for that time, so he could take his pills with food. This threw his whole sleep schedule into a state of disarray. "My sleep was terrible," he says. "I couldn't sleep at all. It was the darkest period of my life." In addition to the headaches and diarrhea he experienced as side effects from the medication, Terry constantly felt groggy, irritable, weak and depressed. After several years of this, he suffered a nervous breakdown.

Like Terry, many people living with HIV experience sleep problems. These can occur at any stage of HIV infection. Upwards of 75 percent of people report sleep issues on a regular basis. Some have difficulty falling asleep, some have trouble staying asleep (due to poor-quality sleep or frequent nightmares) and others wake up too early. Then there are people, like Jasmine, who have the misfortune of experiencing many or all of the above.

For years, when Jasmine went to bed at night she found herself wide awake, staring at the clock for hours on end. "If I fall asleep now," she would calculate, "I'll get only five hours of sleep ... now only four hours ..." -- a vicious circle of insomnia and anxiety. Once she finally nodded off, she had problems staying asleep and achieving a deep sleep. As a result, she awoke each morning feeling sluggish. "It was very frustrating because it took a long time to get my engine up and running, ready to start the day." When she started working night shifts, the problem only got worse. "When I'm sleep-deprived, I'm not as quick with my thinking or speech. I'm off my game and have to push myself to get stuff done."


Key to Quality of Life

Sleep is vital to our health and well-being: It can help regulate our hormones, reduce stress, manage our weight and improve immune function. As many of us know all too well, a lack of sleep can impair our memory, affect our ability to focus, deprive us of energy and leave us more susceptible to infection. Over time, this can lead to depression and anxiety, which can make it even harder to sleep.

Poor sleep can also make it more challenging to adhere to a pill-taking schedule -- something that is crucial for successful HIV treatment. Dr. Julio Montaner, director of the BC Centre for Excellence in HIV/AIDS, stresses the importance of identifying sleep disturbances caused by HIV treatment early: "It is my job to be proactive and monitor for potential side effects. The more I can support people's HIV treatment and help them be free of side effects, the more they are likely to be able to adhere to their medication regimen. Patients should be encouraged to bring up issues early as opposed to suffering in silence."

Getting to the Root of the Problem

Identifying the nature of a sleep problem and figuring out what's behind it is step number one, best done in conversation with a knowledgeable doctor or nurse. For people with HIV, the root cause tends to be one or some combination of the following:

  • HIV itself -- HIV-infected cells in the brain, which produce neurotoxins and chemical signals that may impair the sleep of some people.
  • medications -- such as efavirenz (Sustiva, also found in Atripla) used to treat HIV, interferon used to treat hepatitis C and other drugs prescribed for HIV-related illnesses.
  • mental health issues -- such as depression and anxiety.
  • alcohol and drug use -- heavy drinking or using drugs, especially stimulants such as cocaine, speed and ecstasy.

Other causes of sleep problems can include changing hormone levels (for example, high or low levels of thyroid hormone, changes in estrogen levels during menopause and declining levels of free testosterone), calcium and/or vitamin B12 deficiencies, and infections (including a cold or flu).

After years of tossing and turning, Jasmine was determined to pinpoint the cause of her problems. The efavirenz she was taking as part of her HIV treatment was a possible culprit but not an obvious one because she had been taking the medication for years without side effects. The vivid dreams, nightmares and insomnia that some experience when taking this drug normally occur when people start the medication and tend to diminish or go away with time. But when Jasmine switched HIV drugs, it was confirmed: "My sleep was much better within days. It was definitely one of the things that had been causing me problems." Working nights was another -- but more about that later.

How Sleep Works

When we sleep, we alternate between periods of non-rapid eye movement (NREM) and rapid eye movement (REM). One cycle takes about 90 minutes to complete and typically consists of five stages. Stage 1 is a drowsy sleep that usually lasts five to 10 minutes. During stage 2, our muscle activity diminishes and body temperature drops as we lose consciousness. Stages 3 and 4 are characterized by a deep, restorative sleep when the growth hormone responsible for cellular regeneration and muscle development is released. Stage 5 is REM sleep: Our eyes move back and forth rapidly and dreaming occurs as a result of increased brain activity.

People's sleep needs vary, but most of us need seven to nine hours per night. This is known as "sleep architecture" -- the total time asleep and the duration of NREM and REM periods. A good night's sleep depends on the right balance between these different stages. Various factors, such as light, stimulants and poor sleep hygiene, can disrupt this balance. The goal for insomniacs is to restore this balance.

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This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication The Positive Side. Visit CATIE's Web site to find out more about their activities, publications and services.
See Also
10 Things You Can Do to Enhance Your Emotional Well-Being
More Advice on Coping With HIV/AIDS


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