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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

Reader Comments:

Comment by: Julia (Bloemfontien RSA) Fri., Mar. 1, 2013 at 4:10 pm UTC
Is being a week now i started to take my meds I use odimune, purbac and novavit plus, i never have a problem up to now. my cd4 count was 140. I sleep too much after work and night this is normal or not?
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Comment by: Kevin (England) Sat., Mar. 2, 2013 at 6:55 am UTC
Julia, you should go to the "Experts" area of this website and post your problem to the most appropriate expert listed there - probably one of the experts who deals with side-effects of drugs.

And be sure to give lots of information to the expert, so that he or she can understand your situation.

Good luck.

Comment by: Mico (Washington, DC) Mon., Feb. 25, 2013 at 4:34 pm UTC
I'm on Isentress and Complera. I've had problems sleeping for 12 years. I've adjusted myself to it, however, two months ago, I decided to try one of those sleep masks and ordered it. When it arrived, there were earplugs with it. So, I decided to use the earplugs along with the sleep mask. For the first time in years, I slept all the way through the night! I even had several dreams which is not the same as before I may dream must mostly never did and thought I just didn't remember them.

I am not a fan of pills, I'll do the shower, the aromatherapy, which does help. But, I swear, the sleep mask (they have them so the mask doesn't set on your eyes) and the earplugs, WOW! Thankfully, these are working for me!

On average now, I'm sleeping 5 hours before I need to use the bathroom, then, I'm able to go back to sleep.

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Comment by: Kevin (England) Wed., Feb. 27, 2013 at 7:08 am UTC
Mico, I was intrigued by your praise of a sleep mask. Do you mean simply a mask to ensure you go to sleep in darkness, or are you talking about something like the Remee sleep mask (which the makers claim allows people to control their dreams)?

I go to sleep in a completely dark and silent room, so an ordinary sleep mask would not offer me anything.

Comment by: Kevin (England) Fri., Feb. 22, 2013 at 6:09 am UTC
For years since becoming HIV+ and being on meds I have had awful problems with sleep. This article confirms what I have worked out: that HIV itself is screwing around with my brain. Whether it's neurotoxins and chemical balances, my brain at night goes into "overdrive" or "turbodrive", excessive mental activity. It may have been triggered by the fact that my first meds included Efavirenz, but though I've been off Efavirenz for six years I'm still having disturbed sleep.

I have tried everything under the sun to beat this problem. Everything from drinking a particular mixture of herbs that is sworn by in India to taking melatonin tablets.

Here's what I now do. The following regime does guarantee excellent sleep at all, but it has minimised the disturbance.

1. One aspirin every other evening, directly after dinner. I believe this anaesthetizes the brain, and stops the overdrive at night. (When I took an aspirin every night it really improved my sleep, but unfortunately too many aspirins caused me severe indigestion.)

2. One coffee or tea per day and never after midday.

3. One glass of wine only per day, with dinner. I've noticed that any more alcohol than this seriously increases the mental activity during sleep.

4. If you use computers and other screens after the sun goes down, then install Flux! It casts a pinkish-brown sheen over your screen that simulates candlelight, and ensures you aren't exposed to bright blue "daylight" right up until you go to bed! Get Flux, for free, from I recommend tweaking its settings so you reduce as much blue light from your screen as possible.

5. Exhaust yourself physically every day. Make your body physically exhausted. Exercise each day so that you reach breathlessness.

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Comment by: Mico (Washington, DC) Tue., Mar. 5, 2013 at 4:07 pm UTC
I use a regular sleep mask along with ear plugs. Nothing special. It darkens light to my eyes and sound to my ears.

Comment by: Paul (South Africa) Fri., Feb. 22, 2013 at 2:37 am UTC
i have been on Truvada & Isentress but i do not sleep well i have resorted to taking sleeping tablets called sleep eeze is this addictive but since i have being taking this i sleep so much better please advise if iam doing the right thing
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Comment by: Kevin (England) Fri., Feb. 22, 2013 at 12:02 pm UTC
Everyone is different, Paul, so you may be fine with your tablets. However, I found that about a month after taking a Zopiclone tablet each night before bed I would suffer real depression each afternoon or evening. This was chemically induced, perhaps by the Zopiclone or perhaps by the Zopiclone interacting with my meds. Also, while one doctor told me Zopiclone was perfectly safe and not addictive, another warned me that it is addictive. Obviously because of the depression, I stopped taking it. I am content with the regime outlined above. However, my chemical make-up is not the same as yours, so you may be fine with your "Sleep Eeze". I don't know anything about that particular sleeping aid.

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