Q&A: Sleep and night-time problems in Parkinson's

Professor Kevin Morgan is a sleep researcher with expertise in chronic conditions including Parkinson's. He joined our discussion forum on 22 September 2010 for a question and answers (Q&A) session on sleep and night-time problems.

Transcript of the event

Professor Morgan: My name is Kevin Morgan. I'm a psychologist at Loughborough University where I manage a specialist unit which conducts research into the causes and treatment sleep problems (or 'sleep disorders').

Much of our work involves people living with chronic conditions, including Parkinson's. Chronic sleep disturbances can result in frustration and discomfort at night, and fatigue and irritation during the day. But always, sleeplessness makes everything worse.

When it comes to insomnia and chronic sleep disturbances, there are no magic solutions, and like Parkinson's, no absolute cures. But there are sensible and practical things that can help you to feel better and there are effective (and non-drug) treatments that can help you to sleep better.

In this Q&A forum my aim will be to help you to get the best out of your sleep. So, if you have a sleep problem, or if you think it would be reassuring to know more about your sleep, for example...

• What is 'normal' sleep?
• How much sleep do I need?
• Is it OK to nap during the day?
• Are sleeping tablets bad for me?

...then post a question.

Kevin

Questions and answers

Passeggiata: I have had PD for nine years, and currently get 5 to 5 1/2 hours sleep a night, and sometimes catch a cat-nap during the day.
 
I go to sleep very quickly, but usually wake up about 90 minutes later feeling as though I can't move any limb in my body, and unable to get comfortable. So I have been slowly and painfully stretching my hamstrings until I am able to get out of bed, and then I may go downstairs (slowly and awkwardly) for a drink of water or watch TV, or stay in bed and play music on my iPod for a while. I then go back to sleep, and the pattern repeats itself, except next time I will often make breakfast (around 4am) and then I sleep better for the rest of the night (and my pills kick in more quickly the next morning because they are not affected by protein in my food).

Is getting up better for me, eg because my immobility during the night could possibly make it harmful to stay in the one position for several hours? Or would I eventually get a more restful sleep if I tried to stay in bed?

Professor Morgan: Habitual waking in the night (so-called ‘sleep fragmentation’ or ‘sleep maintenance insomnia’) is common in Parkinson’s.

Not infrequently, night-time awakenings can be accompanied by 'off' periods (particularly if you have had Parkinson's for a few years), making it difficult to move. I think this is what you are describing.

If you are experiencing problems getting back to sleep then, as a general rule, I would suggest getting out of bed, but not for the reason you suggest.

As a general rule, repeatedly lying awake in bed when you want to sleep is psychologically unhelpful, since over time it can associate the bed and bedroom with frustration, irritation and even hostility (none of which is conducive to falling asleep).

Getting out of bed, on the other hand, 'preserves' the right kind of association between bed and sleep. This fairly simple strategy has helped many people to achieve better sleep, and is widely used in the treatment of insomnia.

Now, you also mention that sometimes you listen to music on your iPod and drift back to sleep. This could be important. In the treatment of insomnia we also use what are called 'cognitive strategies' to help patients manage their thinking during periods of wakefulness and encourage a return to sleep.

I’ve already mentioned that periods of wakefulness can lead to frustration; they can also lead to very negative thoughts about our sleep, and our lives. Preventing such thoughts is a 'golden rule' for getting back to sleep. And one way to prevent unhelpful thoughts is to put your mind into a comfortable, tranquil place. This can be done with relaxation exercises, visualising pleasant (and previously rehearsed) images – or perhaps, in your case, listening to music.

So, here’s the answer to your question. If you really can't get back to sleep, and you feel it's reasonably safe to do so, get up for a while and do something calm and restful. What you describe sounds fine. If, on the other hand, you can find a way of getting back to sleep without getting 'wound up' in bed, then use it. But above all, avoid becoming repeatedly frustrated in bed.

Finally, you mentioned naps. If you have to nap, try to take them at the same time every day, and make them brief. Set a clock if necessary.

Adrian, through our website: Why do so many people with Parkinson's taking Parkinson's medication have sleep problems and what can be done to improve their sleep?

Professor Morgan: There are many factors which contribute to sleep problems in someone taking Parkinson's medication.

First, of course, there is Parkinson’s itself, which, as a chronic neurological condition, affects the efficiency with which the nervous system can regulate sleep. Then there are psychological changes like worry or depressed mood, which independently affect the ability to fall asleep or stay asleep. And then there are Parkinson’s (or “antiparkinsonian”) drugs. While these drugs may have a range of different specific actions, most of them end up increasing dopamine transmission, which is probably the key to understanding how they affect sleep.

Stimulant drugs (like caffeine and nicotine) also increase dopamine transmission (among other things), suggesting that perhaps antiparkinsonian drugs have (again, among other things) a stimulant effect.

Kanchana, through our website: My dad suffers from Parkinson's and he suffers from not being able to sleep and depression. Is there anything we can do to help him have a good night sleep and help him with his mental condition?

Professor Morgan: Depression (even in the absence of Parkinson's) is usually accompanied by symptoms of insomnia - problems getting to sleep or problems staying asleep, or waking to early in the morning). These sleep symptoms often improve if the depression responds to treatment.

It's important, then, to make sure that your dad is getting the right treatment for his depression as well as appropriate treatment for his Parkinson’s. Though depression can be common in Parkinson’s, it is treatable. That said, there are other factors which can contribute to poor sleep even if you are depressed.

Attention to 'sleep hygiene' is important. 'Sleep hygiene' just means observing some simple dos and don'ts about sleep. A list of these can be found on the website of the Loughborough's clinical sleep research unit (PDF file). In the document scroll down to '10 Rules for Improved Sleep Hygiene'.

Whatever the cause of sleep problems, there's usually something that can be done to make things better. You might consider asking your dad to consult his GP about seeing a cognitive behavioural therapist in what is now called the 'Improving Access to Psychological Therapies' (or IAPT - pronounced 'eye-apt' - for short). All GPs have access to this service, which has been set up specifically to offer 'talking therapy' help to people with anxiety and depression.

John, through our website: I have very vivid dreams, my wife says I actually run, punch and lash out in the bed. I never recall any of these dreams when I wake up. What could be causing this?

Professor Morgan: Having vivid dreams is not especially unusual, but 'acting them out' is.

Parkinson's can be accompanied by a condition called 'REM sleep behaviour disorder' where individuals move - sometimes quite vigorously and seemingly purposefully - during REM sleep dream episodes.

REM sleep occurs in the early part of the night, after about an hour or two of sleep. This period is associated with complete relaxation of the skeletal muscles. The mechanism that creates this relaxation, however, can malfunction in Parkinson's, resulting in the symptoms similar to those you describe.

I suggest you discuss this with your doctor.

Anonymous, through our website: Is there any improvement in sleep pattern with deep brain stimulation (DBS)?

Professor Morgan: The available evidence shows that deep brain stimulation (DBS), in addition to improving the control of motor symptoms, can reduce REM sleep behaviour disorder and improve sleep fragmentation in some patients.

It is possible that, since DBS is used in quite severe cases of Parkinson's, the sleep improvements are a fairly direct result of motor control with a greater ability to move at night reducing discomfort and awakenings.

However, much more research needs to be completed before a full understanding of the sleep benefits of DBS emerge.

Angela, through our website: My partner was diagnosed with Parkinson's disease in April 1994. He had deep brain stimulation (DBS) in November 2007. In the last three weeks, he has started acting out his dreams, some with violent reactions. His psychiatrist has put him onto Zoliped, which is a sleeping tablet. My question is: Is this a transient hiccup or a long term problem of Parkinson's? I have been told that it could fall under the REM sleep disorder umbrella. Can this be managed?

Professor Morgan: If you look at the earlier answer, you’ll see that DBS can be an effective tool for managing REM sleep behaviour disorder (RSBD) which is not uncommon in Parkinson's.

It's difficult to judge here whether the RSBD is emerging as a development of your partner's progressing Parkinson's, or whether it’s a 'phase' that will pass. The condition can be effectively managed with drugs, but you have to stay on the case. It's really a case of watching, and waiting.

Emswife: I find I fall asleep very easily about 5 minutes after lights out. Then I wake up about 4 - 5 hours later and that's it for the night. Am I really getting enough sleep and shouldn’t worry or not? Nothing I’ve tried makes much difference. I take 12mg Ropinirole each morning.

Professor Morgan: The best indication of whether you are getting enough sleep is whether you can maintain a reasonable level of alertness the next day.

People differ considerably in how much sleep they need (and how much they actually get). If you find you can get through the day without feeling too tired and washed out, then stop worrying – you're getting enough sleep.

Daz: I was diagnosed three years ago with Parkinson's. I find I go to bed most nights at 10pm, sleep till 2-3am, wake up for 2hrs maybe sleep for 1hr then can't sleep. After 2-3 weeks I need time off work, can't do my job through fatigue and stiffness. I get depressed, have a couple of weeks off, still can’t sleep then the whole process starts again. I am physically and mentally drained with no quality of life. What can I do?

Professor Morgan: First, if you are experiencing symptoms of depression (which can have a profound impact on sleep), see your doctors and explain this. Then I suggest you adopt the sleep hygiene suggestions referred to in other forum answers. This doesn't offer a cure, but it's a useful first step.

If your general feeling of tiredness results in sleeping during the day, aim to 'consolidate' your sleep at night. Avoid daytime napping, go to bed later, try not to stay in bed too long if you wake up (see earlier answers on this). Try to go into the next day intending to stay awake until bedtime.

If your medication is causing you to wake up for the bathroom, also discuss this with your doctor. You might be able to take it in the morning.

Finally, ask about professional help with sleep problems when you see your GP. There really are treatments that can help to improve things.

Adrian, through our website: Some people suffering with insomnia can be helped by going to bed late then getting up early 7 days a week until they get into a pattern; then adjusting their going to bed time gradually.

Can such a regime help Parkinson's patients experiencing sleeping problems also?

Professor Morgan: Yes.

For many reasons, routine is the guardian of fragile sleep. If routine is combined with a deliberate attempt to 'consolidate' sleep (see previous answers), the results can be positive. The aim here is not to turn poor sleep into perfect sleep – that just doesn’t happen. Rather, the aim is to exert some control over your sleep – make it a bit more predictable and manageable. Sometimes, that's enough.

Even in Parkinson's, the body clock will try to achieve some degree of regularity. Help it out.

Adrian, through our website: If there are effective, non-drug, ways of improving sleep for people with Parkinson's, what is the best way of withdrawing from sleep medication?

Professor Morgan: The evidence shows that one of the most effective treatments for chronic insomnia, in all age groups, in otherwise healthy people, and in people with chronic conditions (like Parkinson's) is a psychological approach called 'cognitive behavioural therapy for insomnia' (shortened to CBT-I).

This treatment involves learning how to cope with episodes of wakefulness through the development of better sleep habits, and through effective ways of controlling unhelpful thoughts. In many of the answers given in this forum there are references to the techniques of CBT-I. Unfortunately, and despite evidence that CBT-I is safer and more effective than sleeping tablets in the longer term, there remains a shortage of expertise to deliver these treatments within the NHS.

The best way to withdraw from sleeping tablets (if they have been consumed for months or years rather than just a few days or weeks) is gradually, and in consultation with your doctor. This is a very important emphasis.

Abrupt withdrawal can lead to what is called 'rebound insomnia' - which speaks for itself; your sleep just gets much worse. Speak with your doctor, who will recommend the best way to gradually 'tail off' your drug.

Adrian, through our website: Is there any evidence that eating certain foods can alleviate insomnia associated with Parkinson's?

Professor Morgan: No.

There are some sensible dietary precautions that should be considered in order to prevent discomfort or poor symptom control which, in turn, could impact on sleep quality. Some examples of this are: eating a higher fibre diet to avoid the constipation sometimes associated with Parkinson’s; or not consuming levodopa with a high protein meal which can interfere with levodopa absorption. But these are rather oblique and not specific to sleep.

Whatever the health food industry may argue, it’s unlikely that any well nourished person could 'eat' a better night’s sleep.

Westby: I have developed insomnia after taking Mirapexin. I am sure the insomnia is not PD related but entirely down to the Mirapexin. Is the benefit of Mirapexin worth the sleepless nights and dozing days?

Professor Morgan: In some patients Mirapexin (pramipexole) has been associated with both drowsiness during the day and insomnia symptoms (wakefulness) at night.

The question of personal cost/benefit - whether the beneficial effects are 'worth' the side effect - can only be answered by you. Certainly the drug regulatory authorities believe that the benefits of this drug outweigh the disadvantages. That's why the drug is licensed. But I would suggest that you don’t give up on the drug until you’ve tried to address the sleep problem using non-drug therapies.

Improve your sleep hygiene (see earlier questions for an explanation) and ask your GP for a referral into the 'Improving Access to Psychological Therapies' service. Just because you have Parkinson's doesn’t mean you can’t independently seek treatment for your insomnia symptoms.

Also, if you are feeling sleep during the day, make sure any naps you take are scheduled, regular, and as brief as possible. You may have to live with some insomnia symptoms, but you can also learn to control them instead of letting them control you.

Rhona Salter: I find that at night I struggle to control my temperature and my breathing is so deep I cannot sleep. Any advice or tips would be appreciated.

Professor Morgan: Sweating and temperature control problems are sometimes found in Parkinson's and are not well understood.

Night sweats and hot/cold experiences also accompany other conditions, like normal menopause (I mention this only to point out that some factors coincident with Parkinson's can also affect quality of life).

Even if we don’t understand what causes changes in thermal comfort in Parkinson's, we can be sure of the consequences at night - unwanted awakenings. It would be practical, therefore, to focus on strategies for coping with these awakenings, and getting back to sleep. Given your additional respiratory symptoms, I would suggest two things.

First, discuss your sleep problem with your doctor and make sure that your breathing and temperature symptoms are not due to a medically treatable cause.

Second, learn a relaxation procedure which you can practice during periods of wakefulness. I don't really believe that relaxation is the answer to all sleep problems, but these procedures can act as both a regulator of what is called 'autonomic' activity (reflected in breathing, pulse rates, blood pressure, etc), and serve to distract our attention away from bodily experiences - and promote sleep.

Anonymous, through the website: On several occasions, I have found myself out of bed and on the floor, without knowing how I got there. I seem to have been physically taking part in my own dream - I was being pushed off a balcony. I felt pain in my whole body and I was terrified. Was this caused by a side effect of the dopamine agonist drug I'm on or is it par for the course with Parkinson's disease?

Professor Morgan: A common sleep disorder found in Parkinson’s is 'REM sleep behaviour disorder' or RSBD, which was discussed in the context of an earlier question (see above). It may be that you are moving in your sleep sufficient to fall out of bed.

You really should get this investigated (RSBD, for example, responds to treatment). See your GP, consultant or Parkinson's nurse and explain the problem. Meanwhile, you might consider taking some precautions and moving furniture away from your bed.

Carol05: My sleep pattern has changed significantly since being diagnosed with Parkinson's. To be honest I have never been a brilliant sleeper but now I find I fall asleep almost immediately when I go to bed. In fact some evenings I am nearly nodding off whilst watching TV or using the computer.

The problem is after falling asleep I wake up after a couple of hours and can’t get back to sleep. I often get up and go downstairs for a while. Then go back to bed and sleep for maybe another hour or two but wake early. I can’t sleep to lie in. I would estimate I am only get about 4-5 hours sleep which can’t be good.

Professor Morgan: If you read over the answer to Passeggiata’s question, you may find some advice that is relevant to you.

Since you have little trouble in initially getting off to sleep, I would suggest you aim to consolidate your sleep as best you can. For example, if you find you are nodding off in the earlier evening, you might consider bringing your bedtime forward.

As I mentioned earlier, lying in bed awake for long periods is not a good idea so, if you are able to get back to sleep without too much difficulty, don’t worry too much about getting up in the night. This may be inconvenient, but in the long run it may prevent things getting worse.

Your comment that you've never been a 'brilliant sleeper' is also interesting. Too often it is assumed that sleep problems are due exclusively to accompanying health problems.

You don’t mention why you think you can’t get back to sleep. If you find your mind is active - too active to sleep - then I would suggest either some relaxation exercises, or some of the cognitive strategies already mentioned. Again, your GP ought to be able to refer you to a cognitive behavioural therapist if you ask.

Angel: I have been diagnosed with PD for nearly 4 years. I have terrible problems sleeping and recently have been having vivid nightmares following a period of extra stress at work. I have been shouting out and thrashing about the bed. I have great difficulty getting off to sleep and am unable to 'stay' asleep once asleep.

I work 32 hours per week consisting of early shifts 7.30am-3pm and late 12.30pm-9pm. Sometimes I do nights. I also work any 4 days from 7, so I do realise that my work pattern doesn’t help. Also I have a lot of night sweats, my neurologist couldn’t explain these and thought could possibly be wearing off from the Stalevo.

Lack of sleep and the resulting fatigue is a major problem for me so any advice or suggestions would be much appreciated.

Professor Morgan: Even in people who lead 'regular' (9-5) lives, Parkinson's can seriously disrupt sleep patterns and affect sleep quality. In people without Parkinson’s, irregular shifts combined with occupational stress can achieve the same. It’s unsurprising, therefore, that a combination of irregular shifts and Parkinson's presents a challenge.

I'll assume that before the Parkinson’s diagnosis, things were a little more stable despite the shifts? If so, then a focus on the nightmares and sleep disturbances may be most appropriate. These may, indeed, be drug related - Stalevo is known to cause hallucinations in some patients.

But they may also be 'triggered' by occupational stress. It would be easy for me to suggest modifying your hours, or changing your job. Certainly, this would help, but in the real world, I'm sure you work the way you do for good reasons.

If you can reduce the amount of stress in your job or the amount of stress you bring home, this may help. Perhaps a discussion with occupational health would be appropriate.

Otherwise, the regime would be as for shift-work problem: improve your sleep hygiene (see above); regularise your days off so that you don’t spend long periods without sleep; and try to find ways of managing demands at work. Also, read over some of the earlier answers in this forum. Some may be applicable.

Jennyb: I'm on Sinemet,  Madopar and amytriptilene. Most nights my husband wakes me as I am shouting, kicking and rolling around the bed. I wake up and then go straight back to sleep but it worries him that I might do some damage. I often wake with a start and see headless people in the room, huge insects hanging from the ceiling and people climbing in through the windows. I have to get out of bed to convince myself that there is nothing there.

Is this due to the drugs or PD? If it is the drugs, do you have any suggestions which ones I could take instead? I have tried Mirapexin and amantadine but had to come off them due to bad reaction.

Professor Morgan: Experiencing things that aren’t really happening is called hallucinating.

In Parkinson's, hallucinations can be caused by the condition itself, or by antiparkinsonian drugs. Either way, it is very important that you realise that these experiences are hallucinations. Sometimes it can help if medication is changed, so you should discuss this with your doctor.

Parkinson’s UK has produced a very helpful leaflet on this problem called Hallucinations and Parkinson's.  

Adrian, through our website: Are blood sugar imbalances a common cause of insomnia in Parkinson's patients?

Professor Morgan: Since sleep symptoms in Parkinson's have many causes which can operate at the same time, it is often difficult to isolate a single cause.

In the general population the relationship between levels of blood sugar and quality of sleep is very complicated. Blood sugar is unlikely to be a major factor in most insomnias. Even so, there are many health-food outlets which offer the alternative view that 'sugar imbalance' is a major cause of insomnia; I don't think it is.

In Parkinson's, blood sugar levels can influence the severity of motor symptoms and, admittedly, this could impact on sleep quality. Perhaps, then, the best way to approach this is to 'listen' to your body. If you feel dietary sugar makes a difference to your symptoms or your sleep, reduce your sugar intake. It might be a good idea to discuss this first with a healthcare professional.

Adrian, through our website: If insomnia persists in Parkinson's patients, can they be prescribed sleeping medication long term?

Professor Morgan: In the United Kingdom, no sleeping medication is licensed for long-term use. There are good reasons for this.

Sleeping drugs are powerful and addictive sedatives which can cause a range of problems, including drowsiness during the day and clumsiness if you need to get up in the night. Used regularly for periods of months, however, they also tend to lose their ability to induce sleep.

Renee, through our website: Approx 4 yrs ago I attended a sleep clinic in hospital for overnight observation. The results were that I never got past the first of four stages of sleep. After unsuccessfully trying melatonin,  I am now on amitriptyline which does work. As I was only diagnosed with PD last year is there any way that the sleep clinic could have predicted PD then?

Professor Morgan: This is a very good question, to which I'm afraid I can't give a definitive answer.

Sleep, as you can imagine, is very sensitive to changes in the brain. Consider, for example, that drugs which affect our brain (everything from tranquillisers to antidepressants and painkillers - and, of course, alcohol, nicotine and caffeine) also affect our sleep.

The possibility that some sleep symptoms may be early indicators of Parkinson's (well before motor symptoms appear) is now receiving the attention of scientists around the world. But at present, conclusions are unclear, so no, your sleep clinic couldn’t really have made a prediction about the onset of Parkinson's.

Interestingly, most attention to date has focused on what is called 'REM sleep behaviour disorder', which some think may be an 'early warning sign' in some Parkinson's patients - but this supposition needs testing.

Rapid Eye Movement (or REM) sleep is when we do most of our dreaming - and it's also when our bodies are most relaxed during sleep. People with REM sleep behaviour disorder tend to move around quite vigorously during this stage of sleep, and are sometimes described as 'acting out their dreams'. This, however, does not sound like the problem identified in your clinic.

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