Sleep and HIV

Many people with HIV have problems sleeping. Some research shows that up to 70% of people living with HIV have sleep problems compared to 30% in the general population.

Sleep problems can be due to being uncomfortable, worry, anxiety, depression, illness or treatment side effects. They can also be caused by poor sleep habits. Drug and alcohol use can lead to problems sleeping.

There are a number of practical things you can do to sleep better and in some cases medicines may help.

Why do we need to sleep?

Sleep is essential to both physical and mental health. Sleep allows the body and mind to rest and recover. Lack of sleep or poor sleep can also put you at greater risk of medical conditions such as heart disease, obesity and type 2 diabetes.

Sleeping problems in people living with HIV have been shown to cause lower adherence to HIV treatment, faster progression of HIV disease, lower CD4 counts, metabolism changes, lower quality of life, mood disturbances and depression.

It is thought that long-term sleep problems can mean that the immune system doesn’t work properly, meaning that a person may be more likely to get ill.

Structure of sleep

Sleep follows a pattern, alternating between REM (rapid eye movement) sleep and non-REM sleep. In the course of a night, the body goes through cycles of REM and non-REM sleep. Five or six cycles of this pattern are needed for a good night’s sleep.

How much sleep is needed

People’s sleep needs vary but most adults need between six to nine hours each night. The hours needed each night for sleep may gradually decrease as you get older. If you have been working or exercising very hard, are ill, or recovering from an illness or infection, you may find that the amount of sleep you need increases substantially.

Getting enough sleep is important but it’s also important not to oversleep. Sleeping too much can reduce motivation and make you feel tired.

Insomnia

Not being able to sleep is called insomnia. It can take many forms. Some people find it difficult to fall asleep; others wake up after just a few hours of sleep and then can’t get back to sleep; some people wake up very early in the morning; and others find that their sleep does not leave them feeling refreshed. Insomnia is the most common sleep problem for people living with HIV.

For many people, worry or stress is the cause of their sleeplessness. Once a problem has resolved, then sleep patterns become better. However, more serious problems like anxiety and depression can cause sleep problems which last for very long periods. Symptoms of illnesses, such as night sweats, and pain can also interfere with sleep. It's a good idea to report these problems to your doctor.

Although some people find that an alcoholic drink helps them to fall asleep, heavy drinking can cause sleeplessness, as can drinking coffee, tea or other drinks that contain caffeine close to bedtime. Drug use, especially use of stimulant drugs like amphetamine (speed), methamphetamine (crystal meth), MDMA (ecstasy) and cocaine also cause sleep problems.

Some drugs used to treat HIV, and illnesses associated with it, cause insomnia or other sleep problems.

In particular, vivid dreams and insomnia are among the most common side effects of efavirenz (Sustiva, also in the combination pill Atripla). Some people also have insomnia from dolutegravir (Tivicay, also in the combination pills Juluca, Dovato, and Triumeq). Insomnia is sometimes found with ritonavir (Norvir, also in Kaletra). You may also be taking ritonavir if your HIV treatment contains darunavir (Prezista) or atazanavir (Reyataz).

In many cases, these side effects will lessen or go away after the first few weeks of starting treatment. If you believe you are experiencing insomnia from your HIV treatment, you can talk to your doctor about whether taking your pills in the morning instead of at night may help.

Practical factors such as your bed or pillows being uncomfortable, or the room you sleep in being too stuffy, warm, or cold could disrupt your sleep. Ideally, the room you sleep in should be cool (between 18 and 24 degrees Celsius) and well-ventilated. It should also be as dark as possible as too much light can keep you awake.

If you find noise is keeping you awake, ear plugs may help.

Sleep apnoea

Another sleeping problem is sleep apnoea. This is when your breathing stops and starts during sleep. Symptoms of sleep apnoea include:

• breathing stops and starts during sleep
• gasping, choking, or snorting noises during sleep
• waking up a lot
• loud snoring
• being very tired during the day
• having a hard time concentrating
• experiencing mood swings
• headache when you wake up.

It is important to talk to your doctor if you think you have sleep apnoea. Untreated sleep apnoea is linked to health problems, including higher risks for type 2 diabetes, strokes, heart attacks, and death. To diagnose sleep apnoea, your doctor may ask you to take devices home to monitor your sleeping, breathing, and heart rate or they may do these tests in the clinic overnight.

The most common treatment for sleep apnoea is a device called a CPAP machine that pumps air into a mask that you wear over your nose and mouth while you sleep. Mild cases of sleep apnoea might not require treatment.

Restless leg syndrome

Restless leg syndrome is another common sleeping problem. Restless leg syndrome causes an overwhelming urge to move your legs, and it may also cause a creeping or crawling sensation. It can also cause jerking of the hands or legs during sleep.

Restless leg syndrome is more common in women than men, and more common in middle age. It can also run in families. People living with HIV are more likely to experience restless leg syndrome compared to HIV-negative people.

Most cases of restless leg syndrome get better on their own. Having good sleep habits, quitting smoking, and exercising regularly can all help alleviate symptoms.

Talk to your doctor if your restless legs syndrome is severe and not going away. They will rule out underlying health conditions as the cause and may test your iron and dopamine levels to see if low levels are causing the restless legs syndrome. If they are, sometimes restless leg syndrome can be treated by taking iron supplements or other medicines.

Managing sleep problems

In many cases, a few lifestyle changes are enough to bring back good sleep. These might include avoiding tea and coffee and other stimulants for several hours before going to bed, or not napping during the day.

Keeping regular sleeping hours may help, if possible, so your body can get into a routine. Not going to bed until you are feeling ready to sleep may also help. If you cannot get to sleep after about 30 minutes, get up rather than tossing and turning and getting frustrated, which often makes the problem worse.

Do not be frightened to mention sleep problems to your doctor. Keeping a record of your sleep, known as a sleep diary, to share with your doctor might be useful. If there is an underlying medical cause, such as depression, physical illness, or treatment side effects, it is important that your doctor knows as soon as possible so appropriate action can be taken or treatment offered.

"Make sure you talk to your doctor or pharmacist about all the medicines and supplements you are taking. "

Besides lifestyle changes, cognitive behavioural therapy is an effective treatment for insomnia. This can be done individually or in groups and often from your phone, tablet, or smart device. Talk to your doctor if you are interested in trying cognitive behavioural therapy for sleep problems.

Some people find that some herbal remedies or over-the-counter sleeping aids can help them sleep. Make sure you talk to your doctor or pharmacist about all the over-the-counter medicines and any supplements you are taking because some can have interactions with each other or with your HIV treatment.

Medication, often called ‘sleeping tablets’, are available to help sleep and help restore normal sleeping patterns. However, some sleeping tablets can make people feel drowsy the next day. The use of some sleep medication over the long-term can cause dependency, although there are some medications available which may not have these problems.

If you are finding it difficult to get to sleep, you could try these ideas to get you ready for bed:

• Have a warm bath.
• Have a warm drink, such as camomile tea or milk. But try to avoid caffeinated drinks for three to four hours before going to bed.
• If stress or worry is keeping you awake, getting your thoughts down on paper may help. Create a to-do list of your tasks for the next day if you find you are thinking about them when you are trying to get to sleep.
• Try relaxation or breathing exercises. Some people find that some aromatherapy oils help them to relax.
• Read a book or listen to an audio-book or some relaxing music.
• Try not to watch TV or use phones, computers or electronic gadgets in bed. If you do use electronics, a blue light filter may be helpful.