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HD Reach
2409 Crabtree Blvd, Ste 107
Raleigh, NC 27604

Monday through Friday 9 AM - 5 PM

HD Reach
2409 Crabtree Blvd, Ste 107
Raleigh, NC 27604

Monday through Friday 9 AM - 5 PM

Sleep & HD

General Guidance for Sleep Problems

Source: EHDN Psychological Interventions Working Group

Sometimes we all have problems getting to sleep - in fact around 10% of us regularly report sleep problems. In addition, the loss of daily rhythms is a common but manageable difficulty for individuals with HD.

Research suggests that if you follow the advice in this leaflet, you stand a good chance of starting to sleep well again. It’s important that you think positively about change too, as even though you might have had problems with sleep for many years, research suggests that following this advice can really help.

The cause of sleep problems may be different from person to person but the way that sleep problems are maintained tend to be quite similar. Here are some tips which might help you. Not all of these hints will be good for you and you need to speak to your HD nurse or psychologist about what might help.

During the day

It may seem odd but how you act in the day can really affect how you sleep at night. First of all, cut out all naps. Even if you enjoy naps or used to have them when you were younger, you need to concentrate now on getting your bedtime routine sorted.

Try to keep out of the bedroom during the day. You need to get your brain to link bed and the bedroom with sleep so if you do other activities, such as reading, in your bedroom during the day, try and find another place for these.

If you tend to worry a lot, you might also find that you are constantly on the look-out for signs and problems associated with sleep problems (e.g. bodily sensations, a memory lapse). The effect of being too alert to these types of signs will be maintaining sleep difficulties. And remember: feeling a little dazed and ‘out of it’ is perfectly natural when you wake up –it’s not a sign that you have had a bad night’s sleep.

Sometimes people who have trouble sleeping try to use different strategies to sleep better. One of the most used is drinking alcohol which actually makes it more difficult to have a good night’s sleep. Talk to your HD nurse about any actions that you do to try and get to sleep to make sure that these are actually useful.

Establishing a bedtime routine

Aim to go to bed at the same time every night. Before you go to bed, make sure you don’t do anything which will stimulate yourself- so no drinks with caffeine, for example. Don’t watch anything too exciting on the TV either – have a period of at least an hour where you wind yourself down.

Choose a realistic bedtime. Don’t choose a bedtime which is too early as otherwise you will be just lying in bed wondering why you can’t sleep.

As we get older and don’t do as much as we used to, we don’t need the same amount of sleep. It is very unlikely that you will need 8 hours’ sleep now – even if you did when you were younger. 5-6 hours is likely to be much nearer the mark.

Aim to get up at the same time every morning – even if you think you haven’t slept very well. Don’t be tempted to sleep in later. Your body needs to establish a regular sleep clock.

When you’re in bed

Worrying about not going to sleep is almost guaranteed to make sleep problems worse. As difficult as it might be, you need to work on reducing your worries about not sleeping. Your psychologist can talk to you more about how to do this.

Research has shown that watching the clock while you are trying to sleep and trying to work out how much sleep you will have, or have had, is not good for people with sleep problems. Turn the clock away from you.

If you are not asleep within 20-30 minutes, leave the bedroom and go and sit somewhere quiet and peaceful until you feel sleepy. Don’t feel you have to lie in bed if you start to feel restless and not sleepy.

Changing how you think about sleep

As well as following the practical tips outlined above, it is important that you change your attitudes towards sleep. Research has shown that changing your attitudes can lead to noticeable improvements in how well you sleep. In particular, remember that:

  • You are very unlikely to need 8 hours’ uninterrupted sleep a night. A tiny proportion of the population manage this.
  • If you don’t sleep well one night, you don’t need to catch up the next day by either napping or going to bed earlier than usual.
  • Trying to get to sleep will not make it happen.
  • You shouldn’t just lie in bed waiting for sleep to come- if you are not asleep within 20-30 minutes of deciding to go to sleep, get up and only come back to bed when you are tired.
  • A poor night’s sleep will not necessarily interfere with how you feel the next day.
  • There are lots of reasons why we can feel irritable or down during the day – poor sleep is not the only reason.
  • One night’s poor sleep will not upset your weekly routine.
  • You can learn to control racing thoughts, if you have them, which will help you rest and sleep. Talk to your HD nurse about strategies on how to make this happen.

More advice

A good self-help book is:

An introduction to coping with insomnia and sleep problems, by Colin A. Espie (2017). Hachette UK.

HD Reach
2409 Crabtree Blvd, Ste 107
Raleigh, NC 27604

Monday through Friday 9 AM - 5 PM

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