This article by David Evans originally appeared on the CATIE website here.
Une version française est disponible ici.
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.
Finding the solution that’s right for you might not happen overnight, but persistence and trying different strategies with the support of a knowledgeable doctor can go a long way. Here are some suggestions:
Stay away from the light! Light at night is one reason why many people don’t get enough sleep. Our circadian rhythms respond to the light and dark around us. Derived from the Latin words circa and diem, meaning “around a day,” the term describes our sleep/wake pattern, hormone release, body temperature and other bodily functions over a 24-hour period. In the past, people would wake up with the sun and go to bed with the moon, but the lightbulb changed all that. Bathed in artificial light long after the sun has set, many of us find our patterns out of sync with our body’s biological clock. And our sleep suffers from it. (Research suggests that it may also contribute to cancer, diabetes, heart disease and obesity.)
In the absence of light, our bodies release the hormone melatonin, which helps us get to sleep. When we are exposed to light, the release of melatonin is suppressed and makes sleep more difficult. Any kind of light has this effect, but the “blue light” emitted from electronic devices makes it particularly easy to disregard the body’s readiness for sleep. That is why it is important to sleep in total darkness. The best way to achieve this is with a specialized window covering that blocks outside light (a “blackout blind”), but a sleep mask is effective as well. It is also important to eliminate all sources of light in the bedroom, including all blinking lights or display screens, by turning them off, taping over them or removing them altogether.
Cut back on caffeine. Caffeine is the world’s most consumed psychoactive (mind-altering) drug and can be found in coffee, tea, soda, energy drinks and chocolate. Coffee is the most popular choice, with 65% of Canadians drinking an average of 2.8 cups per day. With its ability to boost energy, increase alertness and improve mood, it is a simple solution for a quick pick-me-up. Unfortunately, it can also disrupt sleep patterns. A central nervous system stimulant, caffeine increases the heart rate, core temperature and blood pressure, which, in turn, can increase the time needed to get to sleep, decrease sleep duration and limit your time spent in deep sleep.
Caffeine has a half-life of five hours—that’s how long it takes to metabolize half the amount circulating in your system. So if you drank a 12-oz coffee containing 260 mg of caffeine at 8 am, there would be 33 mg of caffeine left in your system by 11 pm, which is more than enough to disrupt sleep.
Want to sleep better? Here are some caffeine tips:
- Limit your consumption after 10 am.
- Reduce your overall intake—withdrawal symptoms like headaches can occur within 48 hours after you stop and can last two to nine days. If this happens, you’re on the right track!
- Decaf does not mean caffeine-free—that same coffee still has 20 mg of caffeine.
Check your meds and supplements. Review with your doctor all the medications and supplements you’re taking to determine if any of them could be to blame. Dr. Montaner points out that it’s essential to find the medication regimen best suited for each individual—one that is highly effective and can be taken long-term without disrupting daily activities. “Antiretroviral therapy is a lifelong proposition,” he says. “This is a marriage that has to work.”
Some cough and cold medicines, Gravol, antihistamines and other over-the-counter remedies are used to help people sleep; however, these can exacerbate underlying sleep problems and, when used over time, can lead to anxiety and depression.
Get your vitamins and minerals. If you have a calcium or vitamin B12 deficiency, taking a B-complex vitamin along with calcium and magnesium supplements can help your muscles relax.
Seek peace of mind. If an underlying emotional issue is keeping you awake, seeing a psychologist, counsellor or other health professional can help with depression, anxiety and other issues. A healthy support system and meditation, yoga or acupuncture can also help you rest easier.
Avoid sleeping pills. Sleeping pills offer a short-term solution for some people, but using them over the long-term can create dependency, negatively impact sleep architecture and make you feel drowsy the next day.
You are getting sleepy... A bedtime routine is essential for quality rest. We know its value for children, so why do so few adults have one? A consistent bedtime routine, which ideally starts 60 minutes before hitting the hay, helps you prepare for sleep by giving your day closure, quieting your mind and relaxing your body. A few pointers:
- Turn off all electronics.
- Dim the lights to start the release of melatonin.
- Listen to soft music.
- Set the temperature in your bedroom between 16°C and 20°C and make sure the room is well ventilated.
- Have a hot bath. The rapid drop in body temperature that occurs when you get out will help you fall asleep.
- Spend time reading, stretching or meditating.
- Try some deep breathing in bed: Inhale for five seconds, hold for two seconds, exhale for five seconds. Repeat until asleep.
When Jasmine gets home from her night shift, around 3 am, she says it’s not as easy for her to “do the whole wind down/relaxation thing, the way a person who works regular hours would.” Instead, she finds that putting on a pair of blue-light-blocking glasses for two to three hours before bed helps; in fact, she swears by it. She starts wearing them toward the end of her shift and doesn’t remove them until she’s in bed with the lights off. She also makes a point of exercising (cross-training, kick-boxing, roller-blading or biking) during the day, which helps with her sleep. Although working nights isn’t easy, her modified regimen of anti-HIV drugs combined with these lifestyle changes has helped.
As for Terry, after years of trial and error, he now has a roster of strategies that have turned his formerly sleepless nights into long, uninterrupted deep sleeps. He tweaked his medication schedule (he now takes his meds at 7 or 8 pm in BC and at 9 or 10 pm in Asia) so that he no longer needs to call for room service in the middle of the night. He consulted with a dietitian who recommended light meals (nothing greasy) before a flight to reduce jet lag. When travelling, he routinely orders hotel turndown service, to make sure his room is completely dark at bedtime (he also tapes the curtains to the wall to make extra sure that no light comes through when day breaks). Regular Chinese acupressure massages and use of the hotel steam rooms or a bath help him relax before bed. Emotionally, he is now faring much better. When asked how he sleeps, he says unequivocally, “Like a baby.”
About the author: For 23 years, David Evans woke up feeling the same way he did when he went to bed. Desperate for answers, he did his own research, met with specialists and completed an overnight sleep study. Blood tests turned up nothing. Meds for sleep, anxiety, depression and daytime drowsiness produced more side effects than benefits. His relationships and finances were a mess and he had difficulty holding down a job. He became isolated and considered suicide as he longed for a state of non-existence.
Fast-forward to today: David’s sleep is under control and he is leading an energetic life. He no longer needs caffeine, naps are a rarity and he takes no sleep medication. Since transforming his own life, he now dedicates his time to helping others sleep soundly. He has delivered the workshop “Better than Counting Sheep” at Positive Living BC and Vancouver Friends for Life Society. For more info, visit www.sleepstudent.com