The need to sleep is of paramount importance in CFS/FM patients, and “you must put as much work into your sleep as your diet,” says Doctor Myhill, who specializes in nutritional and preventive medicine. Before considering drugs, she advises her patients to manage the physical essentials - “pressing the right buttons” to put your brain to sleep, helped by low-dose natural preparations such as melatonin and valerian root.
The Physiological ‘History’ of Sleep
Humans evolved to sleep when it is dark and wake when it is light. Sleep is a form of hibernation when the body shuts down in order to repair damage done through use, to conserve energy and hide from predators. The normal sleep pattern that evolved in hot climates is to sleep, keep warm, and conserve energy during the cold nights and then sleep again in the afternoons, when it is too hot to work and hide away from the midday sun.
As humans migrated away from the equator, the sleep pattern had to change with the seasons and as the lengths of the days changed. People needed more sleep during the winter than in the summer in order to conserve energy and fat resources. Furthermore, during the summer humans had to work long hours to store food for the winter, and so dropped the afternoon siesta.
But the need for a rest (if not a sleep) in the middle of the day is still there. Therefore, it is no surprise that young children, the elderly, and people who become ill often have an extra sleep in the afternoon - and for these people that is totally desirable. Others have learned to power nap, as it is called, during the day and this allows them to feel more energetic later. If you can do it, then this is an excellent habit to get into - it can be learned!
More Sleep in Winter, Less in Summer
The average daily sleep requirement is nine hours, ideally taken between 9.30 p.m. and 6.30 a.m. – that is, during hours of darkness, but allow for more in the winter and less in the summer.
Light on the skin prevents the production of melatonin, which is the sleep hormone essential for a good night's sleep. Therefore, the bedroom should be completely blacked out and quiet in order to give the best chance of quality sleep. Even people who are born blind still have a day/night rhythm - it is light landing on the skin which has this effect. Just closing your eyes will not do it!
After the First World War a strain of 'Spanish' flu swept through Europe killing 50 million people worldwide. Some people sustained neurological damage, and for some this virus wiped out their sleep centre in the brain. This meant they were unable to sleep at all. All these poor people were dead within 2 weeks, and this was the first solid scientific evidence that sleep is more essential for life than food and water. Indeed, all living creatures require a regular 'sleep' (or period of quiescence), during which time healing and repair takes place.
You must put as much work into your sleep as your diet.
First, Get the Physical Essentials in Place
We are all creatures of habit, and the first principle is to get the physical essentials in place.
A regular pre-bedtime routine. Your 'alarm' should go off at 9:00 p.m., at which point you drop all activity and move into your bedtime routine.
A regular bed time – 9:30 p.m.
A busy day with the right balance of mental and physical activity.
Not having a bed fellow who snores.
Small carbohydrate snack just before bedtime (such as nuts or seeds) helps prevent nocturnal hypoglycemia, which often manifests with vivid dreams or sweating.
Perhaps restrict fluids in the evening if your night is disturbed by the need to pee.
No stimulants such as caffeine or adrenaline inducing TV, arguments, phone calls, family matters or whatever before bed time! Caffeine has a long half life, so none after 4pm
Dark room - the slightest chink of light landing on your skin will disturb your own production of melatonin (the body's natural sleep hormone). Have thick curtains or blackouts to keep the bedroom dark. This is particularly important for children! Do not switch the light on or clock watch should you wake.
A source of fresh, preferably cold, air.
A warm comfortable bed. We have been brainwashed into believing a hard bed is good for you, and so many people end up with sleepless nights on an uncomfortable bed. It is the shape of the bed that is important. It should be shaped to fit you approximately and then very soft to distribute your weight evenly and avoid pressure points. TempurR mattresses can be helpful (if expensive), as are water beds.
Address Other Factors Known To Disturb Sleep
If your sleep is disturbed by sweating, then this is likely to be a symptom of low blood sugar.
Another common cause of disturbed sleep is hyperventilation, which often causes vivid dreams or nightmares. [See my section on “Hyperventilation – Makes You Feel As If You Can’t Catch Your Breath.”] This can now be tested for by measuring red cell carbonic anhydrase. However, I often use a benzodiazepine [“minor tranquilizer”] such as diazepam 2-5 mgs at night, which reduces the sensitivity of the respiratory center.
If sleep is disturbed by pain, then one must just take whatever pain killers are necessary to control this. Lack of sleep simply worsens pain.
If one wakes in the nights with symptoms such as asthma, chest pain, shortness of breath, indigestion, etc., then this may point to food allergy being the problem with these withdrawal symptoms occurring during the small hours.
Some people find any food disturbs sleep and they sleep best if they do not eat after 6:00 p.m.
If you do wake in the night, do not switch the light on, do not get up and potter round the house, or you will have no chance of dropping off to sleep.
The Hard Part: Getting the Brain Off to Sleep
Getting the physical things in place is the easy bit. The hard bit is getting your brain off to sleep. I learned an astonishing statistic recently, which is that throughout life, the brain makes a million new connections every second! This means it has a fantastic ability to learn new things – which means it is perfectly possibly to teach your brain to go to sleep. It is simply a case of pressing the right buttons.
Getting to sleep is all about developing a conditioned reflex. The first historical example of this is Pavlov's dogs. Pavlov was a Russian physiologist who showed that when dogs eat food, they produce stomach acid. He then 'conditioned' them by ringing a bell whilst they ate food. After two weeks of conditioning, he could make them produce stomach acid simply by ringing a bell. This, of course, is a completely useless conditioned response, but it shows us the brain can be trained to do anything. Applying this to the insomniac:
First, he has to get into a mind-set which does not involve the immediate past or immediate future. That is to say, if he is thinking about reality then there is no chance of getting off to sleep - more of this in a moment.
Then he uses a hypnotic (see below) which will get him off to sleep.
He applies the two together for a period of 'conditioning'. This may be a few days or a few weeks.
The brain then learns that when it gets into that particular mind-set, it will go off to sleep. And then the drug is irrelevant.
However, things can break down during times of stress, and a few days of drug may be required to reinforce the conditioned response. But it is vital to use the correct 'mind-set' every time the drug is used, or the conditioning will weaken. I do not pretend this is easy, but to allow one's mind to wander into reality when one is trying to sleep must be considered a complete self-indulgence. It is simply not allowed to free-wheel.
Self Hypnosis to Form a Conditioned Reflex Pattern
Everyone has to work out their best mind-set. It could be a childhood dream, or recalling details of a journey or walk, or whatever. It is actually a sort of self hypnosis. What you are trying to do is to “talk” to your subconscious. This can only be done with the imagination, not with the spoken language. [For a step-by step explanation, see the final section of this article - “Self Hypnosis - Like Learning To Drive With A Clutch” – which offers excerpts from a book on self hypnosis.]
I instinctively do not like prescribing drugs. However, I do use them for sleep, in order to establish the above conditioning and to restore a normal pattern of sleep, after which they can be tailed off or kept for occasional use.
Indeed, viruses can cause neurological damage (for example polio) and this could involve damage to the sleep center. So often CFS patients in particular get into a bad rhythm of poor sleep at night, which means they feel ill for the day, which means they get another bad night. They are half asleep by night and half awake by day. Furthermore, their natural time for sleep gets later and later. They go to bed late and if they have to get up at the usual time, chronic lack of sleep ensues. Indeed, there is now evidence that the biological clock is dependent on normal adrenal function and we know this is suppressed in CFS. So often some medication is needed to facilitate sleep. Most CFS patients react badly to drugs in normal doses.
The Personal Sleep Support ‘Starter Pack’
I like to use combinations of low dose herbals, natural remedies and prescribed drugs to get the desired effect. Everybody works out his or her own cocktail which suits. This may have to be changed from time to time. I like to supply a 'starter pack' for patients, which has a selection of hypnotics [as outlined below, the supplements melatonin and valerian root, and the over-the-counter sedating antihistamine NytolR ) to try so they can work out their best combination…
I am always asked about addiction. My experience is that this is rare, especially if drugs are used as above to develop a conditioned reflex. One has to distinguish between addiction and dependence. We are all dependent on food, but that does not mean we are addicted to it. We are all dependent on a good night's sleep for good health and may therefore become dependent on something to achieve that. This does not inevitably lead to addiction.
Addiction is a condition of taking a drug excessively and being unable to cease doing so without other adverse effects. Stopping your hypnotic may result in a poor night's sleep but no more than that. This is not addiction but dependence.
Beginning With Natural Preparations to Help Sleep
These all work differently, and so I like to use low dose combinations until you find something that suits. Choose from the following, and start with:
Melatonin 3 mg (one tablet) 1 to 3 tablets at night. [Melatonin is a supplement available over the counter in America. In the UK melatonin can be prescribed and is also available from the Internet.] Some people just need 1 mg. CFS/FM patients have a poor output of hormones from all their glands - namely the hypothalamus, pituitary, adrenals, thyroid and also the pineal gland. The latter is responsible for producing melatonin, the natural sleep hormone. It seems logical to me therefore to try this first…
Melatonin is a hormone produced by the pineal gland. It signals the time to go to sleep and its production is often faulty [especially] in CFS. Levels are slow to rise and slow to fall and this may well explain why these patients tend to drop off to sleep late at night and wake late in the morning. It is like having a form of chronic jet lag.
Melatonin is made from serotonin (the “happy” neurotransmitter) which in turn is made from 5HTP [5-Hydroxy L-Tryptophan, a supplement which studies indicate works by supporting production of healthy levels of serotonin]. This may be why 5HTP is helpful for sleep disorders.
The only precaution is that one or two of my patients have become depressed with melatonin, so be aware of this. On the container it also states melatonin should be avoided in autoimmune disorders... [and certain other conditions including epilepsy and leukemia].
There is a test to measure melatonin production. The Melatonin Profile test measures salivary melatonin levels over 24 hours. Particularly Chronic Fatigue Syndrome patients have poor or delayed melatonin output, so they are unable to drop off to sleep quickly. If this test shows a deficiency of melatonin, then melatonin supplements are indicated.
Valerian root 1 to 4 capsules at night. This herbal supplement is shorter acting and can be taken in the middle of the night.
NytolR (diphenhydramine 50 mg). This is not a supplement, but a sedating antihistamine available over the counter. The dose is 1 to 2 at night. This is longer acting - don't take it in the middle of the night or you will wake feeling hung over. [It is "potentially dangerous" taken with alcohol.]
Prescription Drugs, Starting With Sedating Antidepressants
If there is no improvement with a combination of the above, or if there are intolerable side effects, then I would go on to a prescribed drug. I usually start with one of the sedating antidepressants, such as:
Amitriptyline 10 mg to 25 mg I would start with 5 mg initially. Most CFS/FM patients are made worse and feel hungover with "normal" doses.
Dothiepin. I do not prescribe dothiepin now because a study suggested that this had an increased risk of cardiac dysrhythmias compared to other tricyclic antidepressants.
Surmontil 10 to 30 mg at night.
Short acting temazepam 10 mg. This is useful but recently has been made a controlled drug. so doctors are understandably twitchy about prescribing it. It is controlled because some drug addicts were taking the gel and injecting it into themselves. Nowadays I tend to use instead zaleplon (SonataR) or medium acting zopiclone (ZimovaneR) 7.5 mg.
Diazepam is helpful if sleep is disturbed either because of hyperventilation (it reduces the respiratory drive) or for muscle spasms (it is a good muscle relaxant).
Different people will respond to different combinations of hypnotics. For example, one person may take a melatonin and two valerian at night, plus a zaleplon when they wake at 3:00 a.m. Somebody else may be best suited by 10 mg amitriptyline at night with a NytolR. Don't be afraid to try combinations - there are no serious side effects that I am aware of with any of these used in combination. However, don't change more than one thing at any time otherwise you (and I) will get confused!
One of my patients has found [a wrist band that presses on the acupressure point in the wrist] very helpful.
If Your Find Your Dose Creeping Up...
If you find your dose of hypnotic is gradually creeping up, then this may be because you have become less disciplined about establishing the conditioned reflex. Go back to the basics as above.
When your normal sleep pattern has been restored you can begin to reduce or tail off completely your hypnotic medication - but only if good quality sleep can be maintained. If your sleep begins to suffer, you must go back on the medication that worked before, because the need to sleep is of paramount importance in CFS/FM patients.
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Self Hypnosis – “Like Learning To drive With A Clutch”
The following is lifted from a book on self hypnosis which works for some:
We know that the hypnotic state is characterized by extreme responsiveness to suggestion. You can use this information for conditioning yourself in self hypnosis. Here is a standard procedure to follow.
1. Lie down in bed, ready for sleep initially with your eyes open (the room needs to be dark). Mentally give yourself the suggestion that your eyes are becoming heavy and tired. Give yourself the suggestion that as you count to 10 your eyes will become very heavy and watery and that you will find it impossible to keep your eyelids open by the time you reach 10. If you find that you cannot keep them open and have to close them, then you are probably under self- hypnosis.
2. At this point deepen the state by again slowly counting to 10. Between each count mentally give yourself suggestions that you are falling into a deep hypnotic state. Give yourself suggestions of relaxation. Try to reach a state where you feel you are about to fall asleep. Give yourself the suggestion that you are falling more deeply down into sleep. Some may get a very light feeling throughout the body; others may get a heavy feeling.
3. Let us assume that your eyes did not become heavy. Then repeat the procedure. You can count to 100 if you need this period of time to assure an eye closure. The closing of the eyes is the first sign you are in a receptive frame of mind. Let us assume that you get the eye closure. Take a longer count to get yourself in the very relaxed state. Once you achieve this you should be able to respond properly. The difficult bit is not allowing your brain to wander off into other areas. You must work hard at concentrating on the counting and the responses that achieves.
4. If you respond properly, give yourself the “post-hypnotic suggestion” that you will be able to put yourself under later by counting to three, or using any specific phrase you desire.
5. Continue using it every day and give yourself the post hypnotic suggestion every time you work with it, that at each succeeding session you will fall into a deeper state and that the suggestions will work more forcefully with each repetition.
Each time that you work towards acquiring the self-hypnotic state, regardless of the depth that you have achieved and whether or not you have responded to any of the tests, give yourself the following suggestions: “The next time I hypnotize myself, I shall fall into a deeper and sounder state.” You should also give yourself whatever suggestions you desire as though you were in a very deep state of hypnosis.
You may ask "If I'm not under hypnosis, why give myself the suggestions?" You do this so that you will begin to form the conditioned reflex pattern. Keep at it. One of the times that you work at achieving self-hypnosis the conditioned response will take hold... you will have self hypnosis from that time on.
It is like learning to drive a car with a clutch. At first you must consciously go through the process of putting your foot on the clutch and shifting gears. Usually there is a grinding of the gears and you feel quite conspicuous about this, but gradually you learn to do this almost automatically and you gain confidence in your driving ability. The same is true of hypnosis. As you work at your task, you gradually get the feel of it and you achieve proficiency in it.
* Dr. Sarah Myhill, MD, is a UK-based CFS specialist focused on preventive healthcare, nutrition, and patient education. This material is reproduced here with permission of the author from Dr. Myhill’s patient-information website (DrMyhill.co.uk) R Sarah Myhill Limited, Registered in England and Wales: Reg. No. 4545198.
Note: This information has not been evaluated by the FDA and is not meant to prevent, diagnose, treat, or cure any illness, condition, or disease. It is essential that you make no additions to or changes in your health support plan or regimen without first researching and discussing it in collaboration with your professional healthcare team.