Living With POTS

POTS Diagnosis

There is no single blood marker or diagnostic study that can determine whether a person has POTS.

This is perhaps one of the reasons why many people have a long delay between onset of symptoms and POTS diagnosis.

Diagnosis is based on the presence of a cluster of symptoms.

  • Symptoms must be present for at least 3 months before diagnosis
  • There must be a sustained increase in heart rate of at least 30 bpm (or >40 bpm in adolescents) on standing
  • There should not be a drop in blood pressure >20 mmHg/10 mmHg. (This would suggest the person has a condition called orthostatic hypotension)
  • There should be a presence of other symptoms on standing such as dizziness, vision changes and light-headedness
  • There should be an absence of other conditions or medications that cause the symptoms
Living with POTS

What Causes POTS?

Currently there is not a clear understanding of exactly what causes POTS.

However, there is growing understanding of some of the mechanisms involved in the development of the condition.

It is likely that there are several causes which explains why not every POTS patient responds the same way to treatment.

While we don’t know the exact cause, there is strong evidence that in a large portion of people, POTS is triggered by environmental influences such as:

  • Viruses (Covid-19, Epstein-Barr Virus, Gastroenteritis)
  • Surgery
  • Concussion
  • Pregnancy

While some people have a sudden onset of POTS, others seem to have a slow progression of symptoms which can escalate around puberty.

Many people with POTS also have associated conditions which seem to increase their risk of developing POTS at sometime in their life. Some of these conditions are:

  • Hypermobile Spectrum and Ehlers-Danlos Disorders
  • Mast Cell or allergy type disorders
  • Migraine
  • Irritable bowel syndrome
  • Coeliac disease

Treatment

Many people with POTS have lower than normal total blood volume.

This is very difficult for doctors to identify through routine laboratory testing which is why it often isn’t picked up.

For this reason, POTS treatments are usually directed at increasing blood volume and improving blood return to the heart and brain.

Because the condition affects multiple body systems, multidisciplinary approach to lifestyle adjustments is encouraged as the first step to treatment.

Your doctor may suggest some of the following treatments:

Lifestyle Management

  • Increasing daily salt and fluid intake
  • Wearing of medical grade compression-wear (from ankle to waist) during waking hours to help blood return to the heart and brain
  • Avoid hot environments
  • Functional activity to increase blood volume and prevent physical deconditioning
  • Dietician/nutritional input when there are problems with oral intake of food
POTS Treatment

Pharmacotherapy Management

If lifestyle changes alone do not improve your symptoms, then your doctor may consider some medications. Many of these will need to be used on a ‘try and see’ basis. Some examples are:

  • Fludrocortisone to help expand your blood volume
    Beta Blockers/heart rate control medications such as propranolol and ivabradine
  • Alpha receptor agonists Phenylephrine/Midodrine which help return blood to your heart and brain
  • IV fluids for severe or acute low blood volume
  • Stimulants for fatigue/concentration

POTS Bravehearts

POTS Resources

Here are some links for more information on POTS and its associated conditions, and other helpful resources.

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