Contents

Sleep Problems

A good night’s sleep is crucial for maintaining good health. Unfortunately, some people living with HIV can experience sleep problems, including insomnia, vivid dreams, nightmares and night sweats. Sleep problems tend to be undertreated so it is very important to discuss them with your healthcare provider. They can be signs of another medical problem, and they are certainly a barrier to living well.

Figuring out the cause

If you are experiencing sleep problems, keep a sleep diary for the week before you see your healthcare provider. It may provide useful information to help diagnose some of the problems. 

Keeping a sleep diary can be as simple as having a pen and paper by your bed. You can make note of:

  • how often you experience sleep problems
  • how much sleep you actually get each night
  • the quality of your sleep
  • whether you experience disturbing dreams or nightmares
  • whether you have trouble falling asleep, staying asleep or falling back to sleep
  • whether you wake up one or more times during the night
  • whether you wake up too early
  • how you feel when you wake up; for example, whether you get out of bed feeling rested and refreshed or find it difficult to get up because you still feel groggy and tired
  • any factors you are able to observe that may be related to your sleep problems

Sleep problems may be linked to the time at which you eat, whether you drink alcohol or use drugs, whether you work or party late, and whether you travel frequently. A sleep diary can help identify patterns.

The sleep diary might also help your healthcare provider identify insomnia (the inability to sleep) and sleep apnea (slowing or stopping breathing while asleep), which are two conditions that can occur regardless of HIV.

However, it is important to remember that there are also specific HIV-associated causes that should be considered as you seek answers for restoring a good night’s sleep.

Antiretroviral drugs

Most HIV treatments today do not cause severe sleep problems. Some people report sleep issues when starting a new regimen, but, these issues tend to go away after a few weeks. One HIV treatment, that was likely to cause severe sleep problems is the non-nucleoside analogue efavirenz (Sustiva, in Atripla and in generic formulations), though it is no longer widely used. This medication can cause insomnia, vivid dreams and nightmares. For some people, the nightmares can be intense and terrifying and can cause repeated wakening in the night.

Returning to sleep can be difficult. In many people, these side effects disappear gradually after several weeks on the drug, so waiting out the problem for at least a month is advisable, if possible. For other people, the sleep problems caused by efavirenz continue and stopping the drug is the only solution.

When starting a new combination of HIV treatment, consider starting it on a weekend or taking a few days off from work, since it can take a few days to get used to the changes these drugs can produce. Generally speaking, it is best to avoid alcohol and drugs when starting a new regimen. 

If you are having problems with sleep and your new regimen, speak to your healthcare provider. Depending on the problem that you are having, some healthcare providers may recommend taking your HIV treatment before bedtime. However, if you find that your treatment keeps you awake or causes nightmares, taking it in the morning may be better. If you want to take it at night but find that sleep problems continue, try all the standard recommendations for improving sleep listed below.  As well, try reprogramming your dreams. Sleep researchers have found that most recurrent nightmares can be reprogrammed by repeatedly visualizing the unpleasant dream, and then mentally changing it into something pleasant. However, if nightmares persist and are affecting your quality of life, speak to your healthcare provider.

Very uncommonly, sleep problems, such as insomnia and abnormal dreams, may be associated with the following other HIV drugs:

  • abacavir (Ziagen and in Kivexa, Triumeq, Trizivir and in generic formulations)
  • 3TC (lamivudine and in Combivir, Delstrigo, Dovato, Kivexa  Trizivir, and generic formulations)
  • AZT (Retrovir and in Combivir, Trizivir and generic formulations)
  • tenofovir (Viread and in Truvada, Biktarvy, Descovy, Genvoya, Atripla, Complera, and Stribild)
  • FTC (emtricitabine, in Truvada, Biktarvy, Descovy, Genvoya, Atripla, Complera and Stribild)
  • rilpivirine (Edurant and in Complera and Cabenuva)
  • T-20 (enfuvirtide, Fuzeon)

As with taking efavirenz, sleep problems may lessen or disappear after a period of days, weeks or months as you continue to take them. Other times, the problem may persist and other options must be considered.

Emotional problems 

It is important to look honestly at your life to see if stress, anxiety, depression or other emotional health issues could be contributing to your sleep problems. Just living with HIV can cause stress for many. Problems related to relationships, work, family and so on can contribute to sleep problems. Although it can be impossible to fully eliminate all sources of stress, there are many things that can help reduce the effects of stress on your body, including meditation, deep breathing exercises, yoga, biofeedback and other relaxation techniques. At times, therapy with a good mental health therapist or psychologist can work wonders, especially if you have a lot going on in your head and in your life.

Depression is another possible cause of sleep problems. Addressing depression or related emotional problems may help with insomnia or fatigue. A deficiency of thyroid hormone can cause depression and/or difficulty falling asleep or staying asleep. For a full discussion of approaches to treating depression, see the section on Emotional Wellness.

Fatigue

If you are feeling too fatigued for normal life activities and are not physically active during the day, including not exercising enough, you may find it difficult to sleep normally at night. With restoration of good energy, you may again be able to do regular exercise (but do it before your usual sleep time!).

Infections

There are certain infections, including Candida overgrowth, that may be accompanied by insomnia. If you develop insomnia, see your healthcare provider, especially if you have any other symptoms that could indicate an infection. In some cases, insomnia can be your earliest warning of an infection in need of treatment.

Nutrient deficiencies

Deficiencies of certain nutrients, especially vitamin D and vitamin B12, are very common in people living with HIV and can contribute to sleep problems.

Vitamin D deficiency has been linked to depression. Since that can, in turn, cause sleep problems, restoring vitamin D to optimal levels is important for improving sleep. 

Vitamin B12 has been shown in studies to be deficient in many people living with HIV, and the deficiency can begin very early, even in the asymptomatic stage of HIV. Deficiency of vitamin B12 can result in serious problems, including depression and chronic fatigue. Each of these can, in turn, contribute to sleep problems. Some people do not realize they are fatigued because they are so busy. Restoring sufficient levels of B12 may actually help them to slow down, feel more peaceful, and get better sleep. 

Other B vitamins are also frequently deficient in people living with HIV. Deficiency of almost any individual B vitamin, or of the whole B vitamin complex, can contribute to the development of anxiety or depression that, in turn, can cause sleep problems. The best approach to ensuring you have all the

B vitamins you need is to take a supplement that contains the whole B complex.

Hormone changes

A number of hormone changes commonly experienced by people living with HIV can contribute to the development of sleep problems.

It is important to consider the possibility that menopause could be contributing to sleep problems. It is not uncommon to develop sleep problems at this life stage. Hot flashes and night sweats can disrupt normal sleep and cause fatigue the next day. They can occur during the night without causing waking, making it difficult to identify it as the source of the problem. Testing estrogen and progesterone hormone levels, followed by discussion with your healthcare provider, can help determine if hormone replacement therapy is appropriate. Although long-term use of hormone replacement therapy is not generally recommended because of possible increases in the risk of heart attack, stroke and several cancers, short-term use may be useful for improving sleep.

In addition, optimal doses of vitamin E may reduce or eliminate hot flashes. Although the effective dosage is very individual, it is certainly worth trying vitamin E supplementation to see if it can help. A reasonable starting dose to manage hot flashes and resulting sleep problems would be 1,000 IU daily of a natural form of vitamin E (d-alpha tocopherol with added mixed tocopherols). Increases of up to 2,000 to 3,000 IU daily have helped some people to eliminate hot flashes.

Inadequate levels of testosterone or thyroid hormones, are a frequent cause of depression and fatigue in people living with HIV. Since both of these can contribute to sleep problems, measuring hormone levels and, where necessary, providing replacement therapy to restore the hormone to optimal levels, may be very important for restoring good sleep. Tests of thyroid function should be a standard part of your regular blood tests. Be sure to ask your healthcare provider to check the results of these tests. Checking for testosterone levels requires a separate blood test that you can ask for.

Complementary therapies

Melatonin is the body’s natural sleep promoter. People living with HIV may have decreased levels, so supplementing melatonin may improve sleep. Research has shown that for insomnia, taking the melatonin two to three hours before your desired bedtime is optimal. It is best to start with a low dose of melatonin and then increase it if necessary. Doses of only 100 to 300 mcg (0.1 to 0.3 mg) will be sufficient for most people.

The traditional glass of warm milk helps because it provides a dose of tryptophan, a precursor to the chemical serotonin, which is involved in the induction of sleep. A more effective boost to serotonin is the supplement 5-hydroxy-tryptophan (5-HTP). 5-HTP is an effective sleep aid. Doses of 50 to 150 mg of 5-HTP one hour before bedtime work for many people. It’s important to take it with 50 mg of vitamin B6 because vitamin B6 is used to convert 5-HTP to serotonin. (However, 5-HTP should never be taken by people who are also taking medicines for treating depression or anxiety.) The addition of glycine (500 mg) to this package may also help since it is a calming amino acid and seems to increase the overall effect in summoning sleep.

Aromatherapy may also help induce sleep. Essential oils of lemon balm, lavender or chamomile are considered calming. Using these can be as simple as putting a few drops on a cotton ball and leaving it in the room or near your pillow. These oils can also be put in bath water or added to a small vaporizer or humidifier.

Acupuncture has also been found to be very helpful for people experiencing sleep problems. A qualified acupuncturist can choose the right combination of points to treat.

Exercise

Regular exercise during the daytime helps to reduce the impact of stress and can help people fall asleep more easily. Speak to your healthcare provider about the type of exercise that is right for you.

Herbal remedies

There are several herbal remedies that may help with sleep. The traditional cup of chamomile tea before bedtime may be useful. Other herbs that can have a calming effect to help you drift off to sleep are valerian root, hops, lavender and passion flower. However, before using these, speak to your pharmacist about possible drug interactions with the medicines that you take.

Prescription and over-the-counter medications 

Ask your pharmacist about effective, non-addictive, over-the-counter medications available for short- term use. Gravol, an anti-nausea medication, or Benadryl, an antihistamine, often cause drowsiness as a side effect. However, these should not be used for more than a few days as prolonged use can raise the risk of developing anxiety and depression. Benadryl can also cause dry mucosal membranes.

Talk to your healthcare provider about prescription sleeping aids. Sleeping medications should normally only be used short-term and in the lowest effective dose in order to help re-establish a good sleep pattern. They are not recommended for long-term use. Medication possibilities include zopiclone (Imovane), lorazepam (Ativan) and temazepam (Restoril). The antidepressants trazodone (Oleptro) or mirtazapine (Remeron) can help some people. Some of these drugs can interfere with antiretroviral drugs, particularly protease inhibitors, so ask your healthcare provider and pharmacist about possible interactions.

Tips for better sleep

  • Avoid drinking or eating anything with sugar or alcohol for four to six hours before bedtime. Avoid caffeine eight to 12 hours before bedtime.
  • Try to eat your last meal of the day at least three hours before bedtime.
  • Avoid nicotine for four to six hours before bedtime, though many smokers know this can be difficult.
  • Avoid strenuous exercise, bright lights and television, computer and phone screens one to two hours before bedtime. Many devices with screens, including smartphones, computer monitors, tablets and televisions emit light with too much blue in it (the light does not appear obviously blue but our brain interprets the light as blue). This blue light fools the brain into thinking that it is daylight, which can reduce our ability to fall asleep. You can adjust the settings in your devices to both reduce the brightness levels and to emit a warmer colour (more yellow or red hues). This can reduce the problem with blue light but you should still minimize your exposure to screens a couple hours before bedtime.
  • Relax before bedtime by doing peace-inducing yoga or breathing exercises, taking a soothing bath or doing relaxation techniques.
  • Create an environment that promotes optimal sleep. In general, this means a room that is dark, quiet and removed from any distractions.
  • Maintain a regular sleep pattern. That way your body will expect to sleep at that time.

Dealing with night sweats

Night sweats are common when people living with HIV are not taking treatment, but they can also happen even when people have been on successful therapy for a long time. Night sweats may also result from other serious infections or cancers. You should tell your healthcare provider if you begin to have night sweats since they could be an early sign of a serious problem.

Night sweats can be very uncomfortable and disrupt sleeping. Putting towels on the bed and having an extra set of sleeping clothes handy can limit the disruption of having to deal with soaked bedding. People who consistently sweat extensively during the night can lose considerable electrolytes (normal chemical compounds in the blood), including sodium, potassium and chloride.