Understanding POTS

POTS stands for Postural Orthostatic Tachycardia Syndrome.

Postural (positional)

Orthostatic (standing still in an upright position)

Tachycardia (faster than normal heart rate)

Syndrome (a group of symptoms that occur together)

POTS is a form of dysautonomia, a term that refers to dysfunction of the autonomic nervous system (ANS). Dysautonomia is not a specific diagnosis but rather a group of conditions where the ANS is not functioning optimally. The ANS has a critical role in controlling unconscious vital functions like heart rate, breathing, digestion, blood flow, and temperature.

Living with dysautonomia is like having a thermostat that doesn’t adjust correctly to changes around you. Instead of being able to adapt to environmental changes with ease, your body can struggle with things that others may not even notice—like moving from lying down to standing up, or changing from an air-conditioned environment to hot weather outdoors. Even normal, everyday activities can often trigger symptoms for those with dysautonomia.

There are many different types of dysautonomia, not just POTS. These include:

• vasovagal syncope or neurocardiogenic syncope — fainting episodes that are very common in teenagers

• idiopathic sinus tachycardia — an elevated heart rate all the time, not just when you stand up like in POTS

• orthostatic intolerance — symptoms like dizziness with standing but not quite meeting the criteria for POTS

• rarer forms such as familial and autoimmune types

Dysautonomia can also occur secondary to other medical conditions such as diabetes, coeliac disease, rheumatoid arthritis, Sjögren’s syndrome, Parkinson’s disease, inflammatory bowel disease, and multiple sclerosis. It is also commonly associated with hypermobile Ehlers-Danlos syndrome and Mast Cell Activation Syndrome.

Despite the name suggesting that this condition is primarily about a racing heart, POTS can affect multiple body systems. Symptoms may include:

• Dizziness and light-headedness with standing

• Rapid heartbeat and palpitations

• Breathlessness

• Fatigue and brain fog

• Difficulty concentrating

• Nausea, bloating, early fullness, reflux, and abdominal pain

• Headaches

• Dry eyes and mouth

• Difficulty regulating body temperature

• Bladder problems such as pain, frequent urination, urgency, and difficulty emptying

• Blood pooling and colour changes in the hands and feet

These symptoms must be present for at least three months and are typically worse when standing.

While there is no single cause of POTS, there are several common triggers, including:

• Infection (bacterial, viral including COVID-19)

• Pregnancy

• Menarche (start of periods) and menopause

• Major surgery

• Head injuries and concussion

• Significant life stressors or trauma

Many individuals can identify a trigger in the six months before their POTS symptoms began or worsened.

A great place to start, is by completing a MALMO POTS questionnaire. This includes rating 12 common POTS symptoms. A score of > 42 is considered 97% sensitive and 98% specific for POTS.

You can complete the MALMO POTS Questionnaire here.

If you suspect you may have POTS, it is important to see your GP to exclude other conditions that may mimic POTS such as dehydration, medication or recreational drug effects, deconditioning, structural heart disorders and malnutrition.

 Many individuals with POTS are diagnosed with anxiety. It is important to differentiate between psychological anxiety (worry and stress) and physiological anxiety (symptoms of panic, racing heart, palpitations, that may occur with postural changes). It is possible to have both anxiety and POTS, however, it is important to recognise if you may have underlying POTS so you can access appropriate supports and treatment.

If you suspect you may have POTS, you should see your local GP to consider the following tests:

• FBC, iron studies, B12 to exclude anaemia and associated nutritional deficiencies

• UE to assess electrolyte status

• TFT +/- thyroid antibodies to exclude hyperthyroidism and presence of autoimmune thyroid disease

• Morning cortisol (fasted around 8am) to exclude adrenal insufficiency

• Baseline ECG and a 24hr holter monitor to exclude arrhythmias and inappropriate sinus tachycardia

Once other conditions have been excluded, it is recommended to perform a NASA Lean Test or Active Stand Test to assess changes in your heart rate and blood pressure when moving from lying to standing.

To meet the diagnostic criteria for POTS, the following must be present:

• An increase in heart rate of ≥30 bpm (or ≥40 bpm in those <18yrs of age) within 10 minutes of standing or tilt testing

• Symptoms of orthostatic intolerance such as lightheadedness, palpitations, fatigue, headache and nausea.

• No orthostatic hypotension (no significant drop in blood pressure >20mmHg systolic or >10mmHg diastolic within the first 3mins)

• Symptoms present for at least 3–6 months

• Other conditions must be excluded (such as anaemia, dehydration, deconditioning) including potential medication side effects and drug use

Although the tilt table test is considered the gold standard for diagnosing POTS, it is often limited due to cost and accessibility. For most individuals with POTS, a diagnosis can be made based on the NASA Lean Test or Active Stand Test — a simple test that assess heart rate and blood pressure in lying and standing positions.

In instances where the diagnosis is not clear, or there are other factors impacting your ability to perform a NASA Lean Test (e.g. being wheelchair-bound), a tilt table test can be considered.

For more information on tilt table test, see this handout by the Australian POTS Foundation.

The essentials of POTS treatment include optimising your blood volume by:

• Drinking at least 2.5 litres of fluid per day

• Taking up to 10 g of salt per day (equivalent to ~5000 mg of sodium), either through food or electrolytes

• Using electrolyte supplements (aiming for a medical-grade product, usually at least 500 mg of sodium per serve)

• Wearing compression garments or using abdominal binders (for a discount code on Supa core compression visit our shop here)

If you have already optimised your fluids, salt and compression and continue to have significant symptoms, medications may need to be considered with your treating team. This can include:

• Fludrocortisone- to increase blood volume and often blood pressure, if low

• Midodrine- to help reduce blood pooling

• Beta blockers such as propranolol- to reduce an elevated heart rate

• Ivabradine – to reduce an elevated heart rate while preserving blood pressure

It is also important to look at other factors that can contribute such as:

• Pacing strategies to prevent the push-crash cycle

• Nervous system regulation strategies and vagus nerve exercises

• Circadian rhythm training and optimising your light environment

• Blood sugar regulation

• Hormonal assessment (many women notice changes in symptoms at different times in their cycles)

• Bowel optimisation, including assessment of gut health and microbiome balance

• Posture assessment including review of the upper neck (cervical spine)

In addition, your treating team may assess for other associated conditions such as hypermobile Ehlers Danlos Syndrome and Mast Cell Activation Syndrome. Treating these alongside POTS can also improve your symptoms.

If you’re looking to learn more or connect with support, these organisations provide reliable information, practical resources and community support:

• Standing Up to POTS Podcast (The POTScast)‍. A patient-friendly podcast featuring discussions with clinicians and people living with POTS, covering topics like symptoms, treatments, and related conditions.

• Australian POTS Foundation. Australia’s leading organisation dedicated to POTS, providing education, advocacy, and support for patients and healthcare professionals.

• Dysautonomia International. A global organisation focused on research, education, and awareness of dysautonomia, with extensive patient resources and educational materials.