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% of the general population.

It’s not known for sure why this is, but we do know that sleep problems can be caused by factors such as anxiety, depression, illness, or treatment side effects. They can also be caused by poor sleep habits, drug and alcohol use.

There’s some evidence that the HIV virus might affect your internal body clock that controls when you feel sleepy. And, some HIV medications are linked to trouble with sleep. There is more information about this below.

Why do we need to sleep?

Sleep is needed for both physical and mental health. It allows the body and mind to rest and recover. Not getting enough sleep, or poor sleep, is linked to greater risk of medical conditions such as heart disease, obesity and type 2 diabetes.

Sleeping problems in people living with HIV have been linked to lower adherence to HIV treatment, faster progression of HIV, 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 you may be more likely to get ill.

How much sleep do you need?

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.

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, including:

• finding it difficult to fall asleep
• waking up after just a few hours and being unable to get back to sleep
• waking up very early in the morning
• sleep that doesn’t leave you feeling rested or 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 stressful situation or problem has resolved, then their sleep patterns become better.

However, more serious issues, such as anxiety and depression, can cause sleep problems which last for a long time. 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.

Some drugs used to treat HIV, and illnesses associated with it, can 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), and 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 think 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.

Sleep apnoea

Sleep apnoea is when your breathing stops and starts during sleep. Symptoms of sleep apnoea include:

• breathing stopping and starting during sleep
• gasping, choking, or snorting noises during sleep
• waking up a lot
• loud snoring
• being very tired during the day
• difficulty concentrating
• mood swings
• having a headache when you wake up.

It is important to talk to your doctor if you think you have sleep apnoea. This is because untreated sleep apnoea is linked to health problems, including higher risks for type 2 diabetes, strokes, heart attacks, and even 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 a clinic overnight.

The most common treatment for sleep apnoea is a device called a CPAP machine. It 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 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 can do tests to see if any underlying health conditions are causing it. They may test your iron and dopamine to see if low levels of these are causing the restless legs syndrome. If they are, sometimes restless leg syndrome can be treated by taking iron supplements or other medicines.

Lifestyle changes

In many cases, a few lifestyle changes can help you to sleep better.

Keep regular sleeping hours if you can, so that your body can get into a routine. Don’t go to bed until you are feeling ready to sleep. If you cannot get to sleep after about 30 minutes, get up. Tossing, turning, and getting frustrated can often make the problem worse.

Keep the room where you sleep cool (between 18 and 24 degrees Celsius), well-ventilated, and as dark as possible, as too much light can keep you awake.

Using ear plugs or white noise can help if you find that outside noises are waking you up or stopping you to fall asleep.

You might also find it helpful to avoid:

• tea, coffee, and other caffeinated drinks for several hours before going to bed
• napping during the day
• alcohol close to bedtime
• using stimulant drugs like amphetamine (speed), methamphetamine (crystal meth), MDMA (ecstasy) and cocaine.

Creating a bedtime routine

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, caffeine-free, drink such as camomile tea or milk.
• 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.
• Listen to an audiobook, podcast, 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.

Treatments

If you’re concerned, talk about your 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 they can help you with ways to treat and manage it.

Besides lifestyle changes, cognitive behavioural therapy (CBT) 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 CBT 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. Some of these 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 you 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.