Published in InterAction 41, Summer 2002
We regret that our medical adviser cannot respond to individual enquiries.
Dear Doctor: Why can't I sleep?
At night, my mind is racing even though I’m physically exhausted and desperately need to sleep. Consequently my symptoms are worse than ever by the next morning and it's impossible to function if I get up at a set time, as I’ve been advised. I’ve tried over the counter remedies to little effect and found low dose antidepressants ineffective but I don't want to increase the dose as I'm not depressed. I feel if I could just get eight hours sleep a night my quality of life and chance of recovery would be greatly improved.
Professor Tony Pinching responded:
Sleep disturbance often seems to be part of the illness, probably because the brain's control mechanisms for sleep are affected. However, it can also occur as a secondary effect of the illness and its consequences.
The feeling that a better night's sleep would help to improve symptoms in general, quality of life and prospects for recovery is almost certainly right, so it is really worth persevering to see if you can find the right mix of approaches.
The various sedating tricyclic agents may not have all been fully explored, and increasing the dose may still do the trick, even for correcting sleep disturbance alone. A higher dose does not mean you are depressed, it is often just not necessary for sleep problems, but some patients need more. If side effects limit this, an alternative agent may be worth a try.
Sometimes getting into a better sleep pattern can be aided in the short-term by using prescribed sedatives, such as the ones mentioned below, intermittently and in conjunction with other approaches. A trial of the antianxiety (SSRI antidepressant) agent citalopram might be worth considering too, if anxiety were now contributing to the problem of getting off to sleep.
If medication isn't helping after trying these options, another approach is to work with a therapist in making gradual adjustments in your daily routines. Sometimes these have to be done quite slowly. Having someone to guide you through it, giving tips and feedback can be a great help.
Interaction between sleep and mood
Anxiety is one factor that will increase difficulties in getting off to sleep. If someone is depressed, on the other hand, they may have more of a tendency to wake during the night. However, this pattern can occur in CFS/M.E. without depression.
If you are not sleeping well, that can also affect your mood, so the interaction works both ways. If a mood problem is present along with the CFS/M.E., it is important to treat it, as it has such a knock-on effect on other symptoms. This may involve medication or some form of psychotherapy or both.
However, antidepressants are also used purely to help treat primary sleep disorders. If a doctor does recommend these agents, make sure you understand why they are being recommended, and what the alternatives are.
Simple measures that can help
Many people find that, if they get over-tired during the day, they may paradoxically find it harder to get off to sleep, another good reason not to overdo it. Drinks containing caffeine (coffee, tea, cola), especially in the evening, will increase wakefulness, so are clearly best avoided. So too are stimulating conversations, books or TV in the late evenings, since they may cause too much brain activation.
Getting into a regular routine during the days and nights can help a lot. Be aware that daytime naps may disturb night time sleep; perhaps replace them with restful periods of relaxation to recharge daytime energy levels. It's important to find the techniques that suit you. Don’t forget that some things you used to do to unwind (perhaps watching TV) are not necessarily restful enough for you now! Many simple measures like these can help restore more normal sleep. These go by the awful term 'sleep hygiene' in some circles.
The role of sedatives
Whether they are the gentler ones available over the counter or at health outlets, or one of various types obtained on prescription, sedatives may help in the short term to establish a better sleep pattern, especially if there is difficulty getting off to sleep. They are also handy for occasional use when reliable sleep is needed, (the night before a hospital appointment or big event, perhaps) or to break out of a poor sleep phase.
But in the long run, sedatives may cause more problems, especially because one may become dependent on them (i.e. addicted). All of them can cause this to some extent, though some (like diazepam, temazepam and nitrazepam) are more likely to do this than others. Also, they don't necessarily benefit the underlying structure and quality of sleep.
On the other hand, for people who cannot tolerate or do not benefit from the other approaches below, they can still be useful, used sparingly and with care. Sedatives to consider in such situations include: Nytol, Phenergan, (available over the counter) and Welldorm, zopiclone and zolpidem (by prescription only). Some herbal preparations can help too.
Tricyclic and other antidepressants
One of the most useful approaches to restore a more normal sleep structure for those who are waking during the night and having excessive REM (dreamy, restless) sleep is the use of small doses (from 10mg) of a tricyclic antidepressant. It's important to find the right one for you. One of the effects of these agents, quite separate from that on mood, is to restore a more normal sleep structure, with a better balance of REM and more restful, healing slow wave sleep. This is a bit like the way that paracetamol or aspirin can reset the brain's thermostat when one has a fever.
Tricyclics can also help to reduce pain, and so stop this waking you in the night. Both of these effects can often (but not always) be achieved at very low doses, well below those used to treat depression.
Dr Kelly Morris added:
Sleep seems a highly individual phenomenon, so it is worth spending some time finding out what works for you. A chronic insomniac myself, I personally find that it is pointless going to bed if I am not tired, but starting a going to bed routine and getting up at the same time each day is very helpful to keep my body clock set to the same sleep-wake cycle.
I try to distract myself from worrying over losing sleep, or waking in the night, which then takes the pressure off. Trying too hard to get off to sleep can have the opposite effect! I now practise meditation lying in bed, which I find goes some way to compensate for the sleep loss, or I get up and find something untaxing to do rather than getting stressed by clock-watching.
If sleep loss is becoming detrimental to my health, I try herbal remedies as first-line drugs, but I have encountered both tolerance and dependence with such remedies (although the effect is not so strong as with pharmacological sedatives). In addition, little is known about the effects of such herbs on sleep. For example, valerian seems to have a good sedative action that may somewhat reduce excess REM whereas kava kava is a great help to calm down but it seems to actively promote REM sleep, causing vivid and sometimes exhausting dreams and this herb has also been linked to liver damage in susceptible individuals.
I have also used the sleep hormone melatonin (in pure form, bought in the USA while there), especially for jet lag, but its effects on the sleep-wake cycle can be unhelpful if taken at the wrong time.
Both doctors pointed out that the body clock can be shifted forward in M.E. patients who may tend to fall asleep and wake later than usual.
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