Help with sleep problems

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sparrowhawk
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Joined: Thu Aug 15, 2013 7:20 pm

by sparrowhawk on Sat Aug 17, 2013 7:07 am

Help with sleep problems

When I was first diagnosed 10 years ago I slept for about 15 hrs a day and still woke up unrefreshed. Now I swing between phases of insomnia, phases of being able to sleep but with disturbing vivid dreams where I wake up feeling worse than when I went to bed and phases where I can sleep nearly all day, but not at night. As a result of this or just another symptom of the CFS, my sleep patterns have completely reversed whereby if I get any sleep it is only during the day and i find it virtually impossible to sleep at night when i feel totally "wired" and have a pounding heart.
My Gp gave me the usual advice about sleep "hygiene" and also to try going to bed a little earlier each week and getting up at a regular time to try and normalise my sleep patterns, but nothing has worked. Also tried Amitrytyline in a very low dose, but that gave me vivid and very disturbing dreams and made my CFS worse. I have also reacted badly to other antidepressants and I seem to be hypersensitive to any medication I am given.
Is there anything else I should be trying to normalise my sleep patterns as I am sure it is adding to my depression and feelings of isolation or do I just have to sleep when I can?

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Dr Charles Shepherd
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Joined: Wed Aug 07, 2013 11:30 am

by Dr Charles Shepherd on Sat Aug 17, 2013 9:11 am

Re: Help with sleep problems

As you say, a period of increased sleep requirement (hypersomnia) is quite commonly reported in the immediate post-infection phase of ME/CFS

As time goes on the pattern tends to change and people may then report a variety of problems relating to sleep - difficulty initiating sleep, waking during the night, and sometimes a reversal of sleep rhythm patterns (= awake at night; sleeping during the day). Vivid dreams are also sometimes reported.

The result is that almost everyone with ME/CFS reports that they wake up feeling 'unrefreshed'

Managing sleep disturbance in ME/CFS presents a considerable challenge

Firstly, it's important to make sure that there isn't a primary sleep disturbance present (eg sleep apnoea) that can cause ME/CFS like symptoms in addition to daytime sleepiness

Secondly, there are a range of self-help measures that are often of help. These are all listed in the MEA info leaflet on sleep disturbance and in the MEA purple booklet

Thirdly, there are a limited number of drugs that may be of help.

A low dose of a sedating tricyclic drug such as amitriptyline is one option - which you have already tried

Using a short acting hypnotic for a very short period of time may be helpful if getting off to sleep is a problem

And in some circumstances, possibly where sleep rhythms are very upset, the use of melatonin (the drug that helps prevent jet lag) might be considered - the MEA has a separate leaflet on the use of melatonin

If sleep problems are more severe (as appears to be the case here) a GP has the option of referral to an NHS sleep clinic - where brain activity can be measured during sleep (= polysomnography)

There is an MRC funded research study in progress looking at drug treatment of sleep disturbance in ME/CFS and the MEA Ramsay Research Fund is funding a study looking at sleep disturbance and management

I'm afraid we still have a lot to learn about what causes sleep problems in ME/CFS and how to manage them

MEA website and pdf literature form: http://www.meassociation.org.uk
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

Sarahlaw
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Joined: Thu Aug 15, 2013 3:56 pm

by Sarahlaw on Sat Aug 17, 2013 10:26 am

Re: Help with sleep problems

Dr Shepherd, would you ever advise a person with ME to avoid sleep and or naps?

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Dr Charles Shepherd
Posts: 215
Joined: Wed Aug 07, 2013 11:30 am

by Dr Charles Shepherd on Sat Aug 17, 2013 10:43 am

Re: Help with sleep problems

Sarah

There is certainly a role for trying to normalise a sleep routine once the period of increased sleep requirements tends to change

For example, whilst it is normally helpful to have periods of rest and relaxation during the day, having short periods of sleep during the day can make it far more difficult to then get off to sleep at night and have at least five hours uninterrupted solid sleep

But this all depends on individual circumstances
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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