When it comes to sleep and sleep difficulties, there are many possible factors, and you need to try to identify the factors that are disrupting your sleep.
The aim of sleep should be to ensure that you are not drowsy or tired during the day (nodding off too often), and that you feel relatively well-rested in the morning. Sleep quality should be good, i.e. not disrupted by frequent awakenings, disturbing dreams, etc. The amount of sleep required varies from person to person, but most people feel best with around 6–8 hours per night (or hours per week).
Sleep hygiene
It is important to try to establish regular sleeping habits and to try to capitalise on the natural tiredness that, for most people, occurs at intervals of a few hours between 10 pm and 11 pm, and 1 am and 2 am. It can be difficult to fall asleep before then.
You should review your caffeine intake; even if you’ve previously been able to drink coffee late in the evening, for example, this may no longer be the case.
Your bed should be comfortable; the room should be dark and cool, and you should avoid ‘blue light’ from computer screens and the like.
Frequent urination:
Frequent, urgent urges to urinate are common in Parkinson’s disease. These episodes increase when Parkinson’s medication is not working effectively, but they also increase during the night due to increased urine production (see above). There are specific medicines that can help with this and reduce the discomfort, but fluid intake and your position in bed also have an impact.
Pain:
If you experience pain during the night, this can of course make it difficult to fall asleep and may also cause you to wake up during the night because of the pain.
There are many conditions that can cause joint pain, and this pain can be exacerbated by the fluctuating or varying symptoms of Parkinson’s disease. Joint pain is common; for example, hip osteoarthritis, where the joints become stiff and more painful as you move them less and less, and less synovial fluid is produced. This pain increases during the night and is usually in the hip region, but can sometimes feel as though it is coming from the knee joints.
Nerve root compression and a narrow spinal canal (spinal stenosis) often cause more pain in the lower back and legs when you’re lying flat with your back straight, but less so if you lie on your side and curl up.
Pain in the legs or feet may be due to peripheral neuropathy, which manifests as sensory disturbances and pain that can disrupt sleep.
Snoring and breathing pauses:
If you snore a lot, it can affect the quality of your sleep, and if this is accompanied by pauses in breathing (apnoea), it can significantly disrupt your sleep. It can be difficult to get a sense of these symptoms if you live on your own, but recording a night’s sleep or using one of the many so-called sleep apps can provide clues as to how the night unfolds. There are no medicines to treat this; instead, it is mechanical measures that can help (such as a snoring splint, soft palate surgery or a CPAP machine).
Sleep phase disorders
It is common during certain stages of the disease to experience sleep disturbances, such as REM sleep disorder – which manifests as a period during the night when one acts out one’s dreams. Normally, you should remain completely still during the most intense periods of dreaming, thanks to a sort of electrical connection; however, this does not always function optimally – and you may therefore move very violently and be active in your dreams. This can lead to a generally disrupted sleep pattern, but sometimes one can have severe REM sleep disorder and still feel well-rested in the morning. In cases of severe symptoms, a specific type of medication usually works best. However, not all periods of vivid dreaming and shouting in your sleep constitute REM sleep disorder, so you may need to have it assessed if you are unsure.
Symptoms of depression and anxiety
Low mood and depression can manifest as a sleep disorder. Excessive worrying and ruminating on anxious thoughts can be signs of this, particularly during the phase when trying to fall asleep. Sleep disturbances are common in depression – for example, difficulty falling asleep and waking up too early, but also sleeping more as an alternative. This is less likely if you do not feel low or particularly anxious during the day.
Side effects of Parkinson’s medication:
If your Parkinson’s medication isn’t working properly, stiffness can increase and you may experience muscle pain; it can be difficult to turn over in bed, and this can disrupt your sleep. Tremors and RLS (restless legs syndrome) symptoms in the legs become more pronounced when the medication isn’t working properly, and this can make it difficult to fall asleep. These are usually unpleasant symptoms in the legs that are relieved by movement.
If the effect of the medication wears off during the night, you may wake up early due to, for example, stiffness, tremors or difficulty turning over, as during ‘off’ periods.
You may need to increase your medication or prolong its effect by using long-acting treatments, if you can tolerate them (for example, dopamine agonists, sometimes in patch form, MAO-B inhibitors or COMT inhibitors).
If the anti-Parkinson’s medication is too strong, this can also be a problem – dopamine acts as a stimulant, and if the effect is too strong, you may become overstimulated and not feel tired – and during sleep, it’s a shallow sleep with lots of dreams, and this can run out during the night, causing you to wake up early with stiffness due to a lack of dopamine.
There are therefore many possibilities, but it is often possible to identify some of the factors that play a role and provide targeted treatment in various ways. /Håkan Widner