In this booklet, we discuss a key symptom in ME/CFS and Long Covid and explain what might be causing loss of balance and dizziness when moving about. We provide information on the main symptoms of Orthostatic Intolerance (OI) and cover ways on how this condition can be managed.
For more information on managing OI, please see the 2021 NICE Guideline on ME/CFS
Orthostatic intolerance and Orthostatic hypotension was written by Dr Charles Shepherd, Trustee and Hon. Medical Adviser to The ME Association.
Read full article online below or download the PDF.
Contents
- What is orthostatic intolerance?
- Key facts
- What are the main symptoms of OI?
- What makes OI worse?
- Linked conditions
- What causes orthostatic intolerance and orthostatic hypotension?
- What can doctors do?
- Self-help management
- What to do if you feel dizzy or faint
- Drug treatments
- How we can help
What is Orthostatic Intolerance?
Orthostasis means standing upright. So orthostatic intolerance (OI) is the medical term for problems and symptoms that occur when people stand up, or try to remain in a standing position for more than a short period of time. OI is the main reason why most people with ME/CFS try to avoid situations that involve standing still for any period of time. Consequently, sitting in a chair or sitting up whilst lying on a settee or bed is often the most comfortable position to be in.
Orthostatic intolerance is something that affects almost everyone with ME/CFS to some degree and it’s a key diagnostic feature of ME/CFS. For some people, orthostatic intolerance becomes a very disabling part of having ME/CFS.
Most of the information and guidance in this leaflet applies to people with ME/CFS who still have some mobility and are able to stand up – even if this is only for a short period of time.
For people with severe and very severe ME/CFS who are bedbound, changing from having the whole body lying flat to a sitting position in bed can also cause OI symptoms. This needs to be taken into consideration, especially when people with severe ME/CFS have to be admitted to hospital.
Key facts:
- Orthostasis refers to standing up. So orthostatic intolerance (OI) is the medical term for problems and symptoms that occur when people stand up, or try to remain in a standing position for more than a short period of time.
- OI can also include orthostatic hypotension (where there is a fall in blood pressure on standing) and PoTS/postural orthostatic tachycardia syndrome (a rise in heart rate on standing).
- OI is nearly always exacerbated by anything that diverts blood flow away from the brain.
- OI is probably caused by a problem with the autonomic nervous system – a part of the nervous system that isn’t under conscious control and automatically helps to control heart rate, blood pressure and blood flow to the brain. Problems with balance and muscle weakness in the legs can also play a role.
- There are a number of self-help measures that may be helpful.
- Drugs are sometimes prescribed, especially when OI occurs in association with orthostatic hypotension or PoTS.
What are the main symptoms of OI?
In addition to having difficulty in trying to remain in an upright position for any length of time, symptoms which appear to be related to a
decrease in blood flow to the brain when standing can also occur. These include:
- Feeling light-headed, dizzy or faint
- Sweating
- Nausea
- Headaches
- Palpitations
- Blurred vision
- Skin pallor
Symptoms are more likely to occur in the morning due to overnight dehydration and blood pressure often being lower in the morning.
What makes OI worse?
Symptoms of orthostatic intolerance are nearly always influenced or exacerbated by anything that diverts blood flow away from the brain or causes fluid loss from the body. So exacerbating factors include:
- The time of day: Symptoms are more likely to occur in the morning due to overnight dehydration and blood pressure often being lower in the morning. This may be one of the reasons why people with ME/CFS find it difficult to ‘get started’ in the morning.
- A warm environment that dilates blood vessels in the skin – as alcohol also does.
- Eating large meals with a high carbohydrate content that divert blood flow to the intestines.
- Physical exertion that diverts blood to the muscles, which in turn reduces blood supply to the brain. This also helps to explain why cognitive/mental function may decline during physical activity.
- Fluid loss from diarrhoea or vomiting.
- Emotionally stressful events.
Linked conditions – Orthostatic Hypotension and PoTS
Orthostatic intolerance forms part of a group of conditions affecting the autonomic nervous system which are grouped under the umbrella term of dysautonomia. Two of these conditions are closely linked to orthostatic intolerance and may also occur in ME/CFS – orthostatic (or postural) hypotension and postural orthostatic tachycardia syndrome – both of which are likely to make standing still more difficult. Men who have OI or orthostatic hypotension may also develop micturition syncope.
Orthostatic or postural hypotension and Micturition syncope
Where symptoms such as feeling faint and dizzy appear more acutely and severely after changing position from lying/sitting to standing, this may be due to what is called postural or orthostatic hypotension. This is the medical term for a sudden and significant drop in blood pressure, along with decreased blood flow to the brain, due to a change in position. In some cases,
postural hypotension may involve fainting or having a ‘blackout’.
Men sometimes report feeling faint, or actually faint, when they are standing up to pass urine – especially when they have to get up suddenly during the night and go to the bathroom. This is called micturition syncope. If this happens, getting out of bed should be done slowly and it’s advisable to sit down on the toilet to pass urine.
Postural orthostatic tachycardia syndrome
This is a condition where there is a significant rise in heart rate of 30 or more beats per minute when someone goes from lying or sitting to standing. Symptoms include feeling faint or fainting, palpitations and light-headedness on standing up.
What causes Orthostatic Intolerance and Orthostatic Hypotension?
Research into this aspect of ME/CFS suggests that orthostatic intolerance and/or hypotension is probably caused by a problem with the autonomic nervous system. This is a part of the nervous system that isn’t under conscious control and automatically helps to control heart rate, blood pressure and blood flow to the brain in relation to posture.
When we stand up, around 750 mls of blood quickly moves downwards towards the legs. In normal healthy people, any change in posture – especially when standing up, or trying to remain standing – produces
an immediate autonomic system response that alters the heart rate and blood pressure to compensate. The aim of this autonomic response is to prevent a sudden fall in blood pressure and maintain a good supply of blood to the brain.
What can doctors do?
If OI, or the symptoms it causes are getting worse, you should speak to your doctor. A GP can check your heart rate, blood pressure (which should include both lying and standing measurements), carry out a
NASA lean test, and arrange an electrocardiogram/ECG if necessary.
If symptoms are more severe, you can be referred to hospital for other tests that can measure heart rate and blood pressure in relation to changes in posture. One such investigation is called a ‘tilt table test’. This test has been used in a number of research studies that have examined autonomic dysfunction in ME/CFS.
It is also important to consider other medical explanations for orthostatic intolerance and postural hypotension. One condition in particular, that has a degree of overlap with ME/CFS, is Addison’s disease. This is caused by a failure of the adrenal glands to produce adequate amounts of the hormone cortisol. Addison’s disease causes fatigue, low blood pressure, anorexia, weight loss and patches of brown skin pigmentation.
Self-help management
There are several self-help measures that may be worth trying. Before doing so, do talk to your GP – because the choice will partly depend on whether you also have orthostatic hypotension or PoTS. So some of these self-help strategies may be appropriate whereas others may not be. Your GP should also be able to demonstrate how to do some of the simple stretching exercises.
Please note that, while there is a lot of patient evidence regarding the use of these self-help approaches, and most of them appear to be sensible and safe, there is very limited research evidence to confirm that they are actually effective – in particular in relation to increasing fluid and salt intake. So it’s very much a try and see if it helps approach. This is why the MEA is funding Professor Manoj Sivan in Leeds to develop a new management protocol for these sort of autonomic dysfunction symptoms in both ME/CFS and Long Covid. https://meassociation.org.uk/npsn
Posture during the day
Keeping your feet up on a stool when sitting down during the day will help to increase blood flow to the heart and brain. Gentle leg exercises aimed at improving the peripheral circulation can be carried out when you are
lying down, sitting or standing. Simple exercises include moving your feet up and down at the ankle and crossing/uncrossing your legs. You can also try tightening your abdominal muscles. Avoid sudden changes in posture because bending down or stooping may bring on symptoms.
Keep moving if you can
Try to keep moving around when you have to do a task that is going to involve a lengthy period of standing – such as waiting in a shop queue, working in the kitchen, or doing the ironing.
If you have to stand still for any length of time, try to clench and unclench the calf muscles in the legs. This will help shift blood from the extremities up to the brain. You can also do arm exercises: sustained hand grip or forearm clenching. The same advice also applies if you are sitting still at a desk for long periods.
Orthostatic training
Various upright posture exercises may be helpful, particularly if symptoms are more severe or you are fainting.
These should be taught and monitored by a health professional or physiotherapist with expertise in this area. Get out of bed in stages when blood pressure is likely to be at its lowest. At the same time, use some gentle leg and arm exercises while moving from lying, then sitting and finally to standing.
Sleep
Raising the head of the bed by about six inches by putting some heavy books or bricks under the bed posts helps the body to retain fluid at night rather than losing it in the urine. Some people find this procedure helpful but others do not.
Get out of bed in stages when blood pressure is likely to be at its lowest. At the same time, use some gentle leg and arm exercises while moving from lying, then sitting and finally to standing. Taking some slow deep breaths can also be helpful.
Fluids
Drink plenty of decaffeinated fluids during the day – enough to keep the urine looking clear. This is because any type of dehydration is going to make orthostatic symptoms worse.
Having a glass of water before you get up in the morning may also be helpful. But don’t drink excessive amounts of water as this can cause water intoxication. Taking tea and coffee in moderation during the day can be helpful as they will help to keep the blood pressure up.
Alcohol
Most people with ME/CFS avoid alcohol or only drink small amounts because it makes them feel worse. In the case of orthostatic intolerance, alcohol is not a good idea because it dilates the blood vessels and again takes blood away from where it is most needed. Alcohol is also a diuretic.
Meals
Large meals and foods/snacks that contain a lot of sugary foods or simple carbohydrates are best avoided – especially at night. This is because the process of digesting food requires additional blood to be diverted into the intestines. It is far better to be eating small, regular meals, preferably with complex carbohydrates (e.g. pasta), throughout the day. Also avoid standing after eating. Keep your bowels regular because straining will lower blood pressure and may make you feel faint.
Salt
Salt plays an important role in helping to retain fluid in the body and maintaining blood pressure. So adding a small amount of extra salt to food during the day, or having a bag of crisps, may be advisable. Too much salt can cause high blood pressure and kidney problems. So any change in salt intake should be done with caution and only after you have spoken to your doctor.
Heat
Excessive heat – e.g. hot weather, a hot crowded room, a hot shower – will inevitably exacerbate orthostatic intolerance and the symptoms that accompany it.
This is why perfectly healthy people sometimes feel faint when they have to stand up for a prolonged period on a very hot day. If you have to go out in hot weather, make sure you have plenty to drink and know where there is shade and somewhere to sit down. Battery-operated fans and water-mist devices will help to keep you cool.
Support stockings and tights
Support and compression stockings will help to return blood from the legs to the head. These may need to be worn all day if they are going to be effective but take them off at night. In some cases, an abdominal compression garment might be recommended.
A good place to obtain advice is your local pharmacy, who should have support stockings for both men and women.
What to do if you feel dizzy or faint
- Stop what you are doing and sit down – preferably on the floor
- If possible, lie down flat and put your legs well above your hips (e.g. against a wall) for five minutes
- Drink some water
- Loosen any tight clothing
- When you feel OK, get up slowly
Drug treatments
There are a number of drugs that are sometimes prescribed when symptoms of orthostatic intolerance and/or orthostatic hypotension or PoTS are more severe. These include drugs that:
- increase blood volume – e.g. fludrocortisone
- increase blood pressure – e.g. midodrine
- decrease pulse rate – e.g. beta blockers, ivabradine (mainly for use where PoTS is present)
This type of prescription-only medication is normally used only following hospital assessment by a physician with expertise in this area of ME/CFS.
Some types of medication used by people with ME/CFS can affect blood pressure and heart-rate responses. Examples include tricyclic antidepressants (eg amitriptylene), benzodiazepines (eg Valium) and diuretics (water-losing tablets).
However, there are other drugs that may actually help improve orthostatic intolerance. So a review of current medication ought to be carried out by either your GP or pharmacist.
Further information
MEA information leaflet on Postural Orthostatic Tachycardia Syndrome
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