What is POTS?

POTS is a condition of the autonomic nervous system which largely affects women of child-bearing age but can be experienced by both men and women of any age.

The autonomic nervous system controls many of the ‘unconscious’ functions of the body including:

  • Heart rate and blood pressure regulation
  • Bladder regulation
  • Gut movement and digestion
  • Sweating
  • Temperature control
  • Stress responses (fight or flight)

This explains why those with POTS often present with a vast array of seemingly unrelated symptoms such as fatigue, headache, gut disturbance, dizziness, pain, poor concentration and light-headedness.

POTS is associated with high levels of social, economic and health burden.

Many who experience the condition, find it difficult to work, engage in social activities or attend school.

25% of POTS patients report having to stop work or education due to the impact of the condition on their health.

Despite this, many still report a significant delay in diagnosis.

 

What is POTS?

Two of the most commonly prescribed medications used for the management of POTS, are not available on the Pharmaceutical Benefits Scheme in Australia.

Leaving many with the condition, in the difficult position of not being able to afford treatment.

Please help us to make a change for the better and provide a brighter future for those living with POTS, through improving education, advocacy and research.

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

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

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

Resources

AusDoc Therapy Update

Researchers from Adelaide University have provided a therapeutic overview of POTS for doctors in Australia. This can be a helpful resource for patients to give to their treating GP’s and specialists.

Info sheets

The below info sheets summarise information about key diagnostic tools and therapies related to POTS.

POTS IN...

These resources are designed to help people living with POTS navigate day-to-day life in different contexts, and understand the various resources and support available to them.

Watch this space for more resources in this series coming soon…

POTS Bravehearts

POTS Resources

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