PoTS (Postural orthostatic Tachycardia Syndrome), a form of Orthostatic Intolerance, is a condition that is caused by a dysfunction of what is called the autonomic nervous system — a part of the nervous system that helps to control pulse rate, blood vessel size and blood flow to crucial parts of the body, including the brain. Orthostatic intolerance is the medical term for problems and symptoms that can occur when people stand up, or try to remain in a standing position for more than a short period of time.

PoTS can cause symptoms such as palpitations (awareness of the heart beating), feeling lightheaded, dizziness, pre-syncope (almost fainting) or syncope (blackouts), headaches and brain fog/cognitive dysfunction. PoTS can exist on its own or form part of other conditions — ME/CFS and hypermobility syndromes for example — that also involve dysfunction of the autonomic nervous system.

A significant minority of people with ME/CFS have PoTS as part of their ME/CFS. This is especially so in younger age groups and at the more severe end of the spectrum.

Unfortunately the condition often remains unrecognised by doctors because there is a serious lack of medical education about both diagnosis and management of PoTS. Consequently, it is quite frequently misdiagnosed as anxiety or panic attacks.

Dr Charles Shepherd of the ME Association has prepared an information leaflet on PoTS, which is available from our Group Library, together with a leaflet on Orthostatic Intolerance.

Information from the ME Association website

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A recent paper by the US National Institute of Health on Orthostatic Intolerance contains helpful information on treating this condition. The treatment is aimed at increasing blood volume, decreasing venous pooling, and increasing vasoconstriction while minimising supine hypertension. Patient education and non-drug strategies alone can be effective in mild cases; moderate and severe cases require additional drug treatment. There is a detailed management section starting on page 3 and a useful summary table, which we reproduce below.

  • Abdominal compression: wear an abdominal binder when out of bed.
  • On bad days, drink two eight-ounce glasses of cold water prior to prolonged standing.
  • Sleep with the head of the bed elevated four inches.
  • Counter-manoeuvres: contract the muscles below your waist for about half a minute at a time to raise your blood pressure during prolonged standing or when you become symptomatic.
  • Drugs such as midodrine (ProAmatine), pyridostigmine (Mestinon) and fludrocortisone (Florinef) can be used to raise your blood pressure. Recognise that some drugs you take might lower blood pressure.
  • Recognise symptoms that indicate that your standing blood pressure is falling.
  • Recognise the conditions that lower blood pressure, such as a heavy meal, positional changes, heat, exercise or a hot bath.
  • Learn the things you can do to raise your blood pressure.
  • Exercise: avoid inactivity and consider a gentle exercise programme.
  • Fluids and salt: you need plenty of salt and fluids.
  • Countermeasures to help maintain blood pressure during daily activities and which should be considered at the first symptoms of orthostatic intolerance and in situations of orthostatic stress (such as standing for prolonged periods): toe-raising, leg-crossing and contraction, thigh muscle co-contraction, bending at the waist, slow marching in place, leg elevation.

The paper can be found here. If anyone would like a printed copy of the article, please contact a Committee member.

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Also useful is this recipe for rehydration to increase blood volume:

  • One cup filtered or spring water.
  • One-eighth of a teaspoon of sea salt.
  • One-eighth of a teaspoon of ‘No Salt’ salt substitute (potassium).
  • Add lime juice or a herbal teabag as well as stevia for taste (or something to give it flavour without altering the electrolyte balance: peppermint, peach, raspberry zinger, etc).