Sleep

Whilst most adults experience difficulty sleeping or disturbed sleep at some point in their lives, sleep problems are thought to affect almost 90% of people with Parkinson’s.

Most people have their own ‘normal’ sleep pattern with roughly the same amount of sleep at a similar time each night. These patterns are set by your 24-hour body clock. Moods and feelings can also affect your sleep pattern so you may find it harder to sleep if you are worried, feeling low or in unfamiliar surroundings.

Keeping regular hours by getting up and going to bed at similar times supports your sleep pattern. If routines and sleep habits are disturbed, your sleep probably will be too. If sleep problems continue for some time, it can be hard to re-establish your sleep pattern, even if your routines and habits return to normal. If you have trouble sleeping, a cycle may develop and you may become irritated, fed up or anxious about how you will cope the following day. These feelings are likely to make you more alert and less likely to sleep, and so a negative pattern develops, which for some people can be the start of insomnia.

Sleep difficulties can mean that you, your bed partner or those caring for you are more likely to experience depression or stress. It is therefore important to develop good sleep habits and to seek help if sleep problems are affecting your daily routine and quality of life.

Sleep problems in Parkinson’s

Some of the causes of sleep problems are related to Parkinson’s and the medications you take for this condition. The most common causes are outlined below together with suggestions on how to manage them.

Medication: changes in sleep patterns can occur in response to Parkinson’s medication for a number of reasons:

  • When the effects of medication start to wear off at night, symptoms such as tremor (shaking), rigidity (stiffness), bradykinesia (slowness), pain and difficulty turning over in bed re-emerge, resulting in disturbed sleep and frequent waking.
  • Certain Parkinson’s medications, such as amantadine and selegiline, can keep you awake at night, particularly when taken in the evening. High doses of levodopa or dopamine agonists can also cause insomnia.
  • Other medications and substances can interfere with sleep too, such as caffeine, diuretics (tablets to promote urine production and flow) and ephedrine (a stimulant used to treat postural hypotension). 

If your sleep is disturbed because symptoms are not controlled due to ‘wearing off’, your doctor may prescribe a different form of medication that acts continuously throughout the night. This may be a slow-release skin patch, an apomorphine infusion or a pump that delivers medication directly into your gastrointestinal tract via a tube.

If changing your medication doesn’t help, your doctor may refer you to a specialist sleep clinic for further assessment but it is important to continue taking your medication in the meantime.

Turning over in bed - Stiffness can make it difficult to turn over in bed. Changing your medication may help so it is important to let your doctor, or Parkinson’s specialist nurse if you have one, know if turning over is difficult.

Satin sheet or nightclothes can also help, although you should not use both at the same time as you are more likely to slide off or out of bed unintentionally. If you use satin sheets it is wise to have an area of friction at either side and the end of the bed so that you can get some grip. An occupational therapist or Parkinson’s specialist nurse will be able to give you advice.

Nocturnal akinesia and pain - This is caused by lack of movement and can interfere with sleep. Symptoms include severe stiffness, fever, muscle and joint pain, headache and sometimes pain in your whole body. Speak with your doctor, or Parkinson’s specialist nurse if you have one, so that they can help you manage this pain.

Nocturia - Nocturia, that is waking at night with the urge to go to the toilet, is common in Parkinson’s. If this happens during an ‘off’ period when mobility is limited, it can mean that you are unable to get to the toilet in time. Some medications, for example antidepressants or medications for high blood pressure, can cause nocturia, as can a bladder infection.

Your doctor or Parkinson’s specialist nurse will be able to help work out the cause of nocturia and advise how best to manage it. They may also refer you to a continence advisor who specialises in managing continence problems.

The following advice may also be helpful:

  • If getting to the toilet is difficult try using a bedside commode or portable urinal. Protect your bed with absorbent sheets or pads just in case of accidents.
  • Reduce your fluid intake in the evening and make sure you go to the toilet before bedtime.
  • Avoid drinking alcohol and drinks that contain caffeine, such as tea, coffee and cola, before bedtime.

Low blood pressure (hypotension) - A sudden or an abnormal drop in blood pressure when you stand up can make you feel dizzy or light-headed. Increased urination at night can also lead to reduced levels of minerals in the blood which can in turn cause light-headedness when you stand up particularly after waking in the morning.

Talk to your doctor or Parkinson’s specialist nurse about ways to manage low blood pressure. To reduce the risk of feeling light-headed, make sure that you get up slowly, sitting for a minute or two before standing fully.

Dystonia - These painful muscle contractions in the toes, fingers, ankles or wrists feel like cramp and can disturb sleep, particularly very late at night or in the early hours of the morning. Dystonia at this time is usually a sign of Parkinson’s medication wearing off.

Your doctor will usually alter your medication to overcome dystonia, often prescribing a controlled release form which acts throughout the night. If this does not help then injections of apomorphine or dispersible levodopa may be prescribed. See also Dystonia.

Restless legs syndrome (RLS) - Restless legs syndrome causes an irresistible urge to move your legs when you are awake, particularly when you are resting during the evening and at night. It can cause throbbing, burning, itching or pins and needles and you may need to get up to walk around to relieve the discomfort. Bedclothes may also feel uncomfortable.

Your doctor will probably prescribe medication to help. If your iron levels are low, increasing iron intake can be effective. You may also find that massaging your legs, doing relaxation exercises, taking a bath before bedtime or applying hot and cold compresses to your legs improves symptoms. See also Restless Legs Syndrome (RLS).

Periodic leg or limb movements - Sometimes your legs, arms and body may jump or twitch which can disrupt sleep for both you and your bed partner. This is known as period leg or periodic limb movements. Sometimes this happens at the same time as restless legs syndrome but it can occur in isolation. Such twitches may be relieved by walking around but this obviously interferes with sleep too.

Usually your doctor will adjust the amount of levodopa you take at night or may prescribe a longer acting dopamine agonist which should control dopamine levels and so reduce limb movements.

Insomnia: difficulty in falling asleep or staying asleep can be caused by the symptoms of ‘off’ periods, such as rigidity (stiffness) and tremor (shaking), or by anxiety, depression or panic attacks.

If difficulty sleeping is caused by ‘off’ periods during the night, medication may be altered to include dopaminergic drugs or controlled release levodopa. Psychological approaches such as counselling can also be helpful and may provide more long-term solutions by helping you to alter your habits, routines and better manage insomnia.

Anxiety, depression or panic attacks: anxiety, depression, panic attacks and other psychological problems, including dementia, can disturb sleep.

Lack of sleep also tends to make such problems worse so it is important to discuss these with your doctor or Parkinson’s nurse if you have one. There are various medications that can help as well as psychological approaches such as counselling.

Parasomnias - Parasomnias are abnormal movements or behaviours that happen when you are asleep. These tend to occur just prior to waking or when light sleep changes to deep sleep. Parasomnias can disrupt sleep considerably and include hallucinations, nightmares, vivid dreaming, sleepwalking and sleep-talking. Rapid eye movement behaviour disorder (RBD) is also common in Parkinson’s and can be an early sign of the condition before other symptoms develop. During REM sleep, the deepest phase of our sleep cycle, some people are particularly active and may act out violent dreams, thrash about and may injure themselves or their bed partner.

It is important to tell your doctor if you or your bed partner sleepwalk, talk, shout or are violent (acting out violent dreams and often hurting or attacking bedpartners) when sleeping so that medication can be prescribed or adjusted, or specialist advice sought.

Sleep apnoea (sleep-disordered breathing) - Sleep apnoea, also known as sleep-disordered breathing (SDB), means that a person stops breathing for a short-period, usually a few seconds. Typically this is accompanied by loud snoring or choking noises which disturb sleep.

If you or your bed partner notices any symptoms, you should speak to your doctor so that a proper diagnosis can be made and effective treatment put in place.

Excessive daytime sleepiness (EDS) - excessive daytime sleepiness (EDS) may cause you to fall asleep or doze frequently during normal waking hours. In extreme cases, sleep may overcome you with no warning. This can be caused by Parkinson’s medications, particularly if multiple medications are taken as the condition progresses, or when a particular medication dosage is first increased.

EDS can also happen if you are not getting enough sleep at night, but at the same time, sleeping during the day which can disrupt night-time sleep patterns. It is important to talk to your doctor if you feel excessively sleepy during the day. He or she may adjust your medication or suggest other strategies to help.

Caution!  If you experience EDS you should be particularly careful when driving, operating machinery or any other activities which may be dangerous. Please inform the doctor immediately if you ever have a sudden onset of sleep while driving.

How can I help myself?

Whilst some aspects of sleep problems will need to be managed by your doctor, such as changes to medication, there are a number of ways you can help yourself. Sleep habits, also referred to as sleep hygiene, are extremely important in maintaining a good sleep pattern and the following suggestions may help.

Use the Parkinson’s disease sleep scale (PDSS), a simple self-completed sleep tool and show to doctor and nurse.1 The PDSS will identify what type of sleep problem you have. The PDSS can be downloaded from many societies, including Parkinson’s UK.

  • Try to keep to a regular routine, including a regular pattern of meals, exercise and the time you go to bed and get up.
  • Increase your daytime activity if possible but avoid vigorous exercise up to two hours before bedtime.
  • Allow time to unwind before bed and adopt a routine before bedtime that encourages relaxation, such as having a warm bath.
  • Avoid activities such as work, using a computer or cleaning late in the evening as these are unlikely to promote relaxation. Watching television, reading or talking are more like to promote restful sleep.
  • Try to avoid reviewing the day and thinking ahead to tomorrow, or thinking about things that may worry you. These are best done earlier in the day. If things are worrying you, try writing them down so that you can deal with them at another time.
  • Avoid alcohol, tobacco and drinks that contain caffeine (e.g. coffee, tea and cola) for between 4 to 6 hours before bedtime.
  • Avoid smoking late in the evening or if you wake during the night. Like caffeine, nicotine is a stimulant that is likely to disrupt your sleep.
  • Reduce your fluid intake in the evening, especially those that have a diuretic effect such as coffee, and make sure you go to the toilet before bedtime.
  • Have a light snack at bedtime but avoid heavy meals late in the evening. A milky drink may help.
  • Keep your bedroom temperate moderate. Temperatures above 240C tend to disturb sleep and induce restlessness. A temperature of 160C – 180C is recommended. Keeping a window open, if safe to do so, may help.
  • Keep your bedroom calm, uncluttered and only for sleeping. Ideally your bedroom should be calm, tidy and associated with activities that promote sleep.
  • Only go to bed when you are sleepy rather than when you are just tired. You are likely to fall asleep faster if you go to bed feeling sleepy.
  • Try not to nap during the day as this affects the quality of night-time sleep. If you do need a daytime nap, try to limit it to 20 minutes by setting an alarm clock to wake you.

If you cannot sleep or you wake during the night:

  • Don’t lie awake in bed indefinitely. If you have not fallen asleep after about 20 minutes, get up and go to another room to do something quiet and calm such as reading, listening to the radio or writing.
  • Only go back to bed when you feel sleepy. If you go back to soon you are likely to continue lying awake and get frustrated which will only make things worse.
  • Keep a blanket or warm dressing gown near your bed so that you don’t get cold if you get up.
  • Try to go to the same room if you get up and keep things here to do that will help you relax and feel sleepy.
  • Try not to fall asleep in a chair or on the sofa as this will not reinforce the link between your bed and sleep.

Reference:

1. Chaudhuri RK, Pal S, DiMarco A, et al. The Parkinson’s disease sleep scale: a new instrument for assessing sleep and nocturnal disability in Parkinson’s disease. J  Neurol  Neurosurg Psychiatry 2002;73:629-35 - view abstract.

Sleep medications

In some situations sleeping tablets may help for up to 3 or 4 weeks, for example following a bereavement, surgery or if your circumstances or surroundings change. These can help break the cycle of insomnia, particularly if you become worried about being able to sleep. However, sleeping tablets can make you feel drowsy in the morning or anxious. This can affect your ability to carry out everyday activities such as work or driving a car. Concentration and memory may also be impaired.

Rebound insomnia, when insomnia symptoms briefly become much worse when you try to sleep without tablets, may also occur and may lead to fears of no longer being able to sleep without medication. It is therefore important to follow any instructions given to you by your doctor and let him or her know if you think you are becoming dependent on sleeping pills. Your doctor will also be able to support and advise you if you reduce or stop taking sleeping tablets so that this is done gradually and safely.

Acknowledgement

Our thanks to Parkinson's UK for permission to use the following source(s) in compiling this information:

  • Sleep and night-time problems in Parkinson’s.

 

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