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    Patients

    What is POTS?

    A Common Form Of Dysautonomia.

    What is POTS?

    Postural tachycardia syndrome is a condition that affects the autonomic or (involuntary) nervous system.  This is why the term ‘dysautonomia’ (or dysfunction of the autonomic nervous system) is sometimes used to describe POTS and other autonomic nervous system disorders.  The autonomic nervous system controls many of the ‘unconscious’ functions of your body such as:

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

     

    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.
    Patients

    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 Disorders 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
    • Graded exercise 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

    More Resources

    Useful Information On POTS

    Patients

    Some people with POTS have permanent, significant disability that may entitle them to support from the Australian National Disability Insurance Scheme.  Information relating to NDIS application can be found at their website.

    Click here

    Patients

    Standing Up to POTS is an American volunteer run charity who aim to “raise awareness, nurture community, and empower patients with information and practical skills for living better with this chronic invisible illness”. You can find a wealth of information about POTS on their website.   You may also like to subscribe to their Potscasts and learn about Postural Orthostatic Tachycardia Syndrome (POTS). Gain insight from other patients and from top POTS doctors.

    Click here

    Patients

    POTS UK provides a wealth of information on their website designed to “educate and support patients, family, friends and medical professionals within the United Kingdom about this widely unrecognised and misdiagnosed condition by sharing up to date evidence and resources.”

    Click here

    Patients

    Dysautonomia International is a US based organisation who work towards raising awareness about dysautonomia.  Their website provides substantial information for patients, clinicians and carers alike.

    Click here

    Patients

    Many people with POTS also have hypermobility spectrum disorders or may have one of the Ehlers Danlos subtypes.  You can find more information on these conditions via The Ehlers-Danlos Society website.

    Click here

    Patients

    A national charity providing all Australians experiencing emotional distress with access to 24 hour crisis support and suicide prevention services.

    Click here

    Patients

    Beyond Blue provides information and support to help everyone in Australia achieve their best possible mental health, whatever their age and wherever they live.

    Click here

    Chronic illness impacts physical, social, emotional, and mental wellbeing.  If you or your loved one need crisis support, please seek help.

    Patients

    Make A Contribution

    Your Funding Changes Lives.

    Help us to raise awareness of this debilitating condition in Australia. Your support will touch many lives by helping the medical community better understand, diagnose, treat and manage POTS.

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