Postural orthostatic tachycardia syndrome (POTS) prevalence has increased dramatically, and over half of people who have it need to quit work or education—many never to return. Understanding the red flags enables early diagnosis and can help prevent quality of life outcomes worse than those in people with cancer, heart failure and chronic kidney disease.

The year everything changed

In 1993, at 24 years of age, I became chronically unwell after a viral infection. That same year, the Mayo Clinic first named POTS. It took a long time to get the diagnosis, and research shows it still takes about twice as long for women to get diagnosed than men.

I worked as an emergency nurse and in academia before deciding to focus on POTS in 2020, having realised that many patients were slipping through the healthcare net.

I finished my PhD last year and now work as a research fellow at Adelaide University. In 2021, I founded the Australian POTS Foundation to promote advocacy, education, and research.

A common condition with significant consequences

POTS is far from rare. United States international classification of disease code data shows pre-COVID prevalence was 1.7%, but risk rises to 3.4% in people who’ve had COVID.

POTS is the most common orthostatic intolerance syndrome seen in clinical practice, with international data indicating about 1 in 100 young women will develop it in their lifetime. Men also get it, although less commonly.

The consequences are significant: 58% of people with POTS withdraw from work or education, and 22% never return. Some become housebound and even bedbound. We’re talking mostly about women aged between 14 and 50, so those in prime education, career and family development time.

While its aetiology is not fully understood, POTS is essentially a heart preload problem driven by two main mechanisms:

• Absolute and/or relative hypovolaemia – many patients have chronically low blood volume due to autonomic disruption of renal fluid regulation.
• Peripheral autonomic dysfunction – resulting in reduced venous return to the heart.

The link with hypermobility and Ehlers-Danlos syndrome

About 70% of people with POTS have a hypermobility syndrome, and up to 90% of people with hypermobile Ehlers-Danlos syndrome (hEDS) have an autonomic disorder such as POTS.

Why do these conditions overlap so often? We don’t know exactly, but several mechanisms are suspected:

Vascular/connective tissue differences

Early research showed that when women with orthostatic intolerance were put on a tilt table, central vasopressor function worked, but their peripheral vessels often failed to constrict appropriately. This may relate to differences in connective tissue surrounding autonomic nerve fibres or a breakdown between autonomic signalling and peripheral vascular response.

Autoimmune predisposition

People with Ehlers-Danlos syndrome are more prone to autoimmune conditions including coeliac disease, lupus, and thyroid disorders. Autoimmune activity may affect nerve fibres and autonomic function.

Immune factors

In people with Ehlers-Danlos syndrome, POTS onset frequently occurs after a viral insult. Before COVID-19, Epstein–Barr virus was a common trigger. Now, SARS-CoV-2 has dramatically increased global cases of POTS.

Early recognition essential to prevent long-term functional decline

Our research comparing 200 people with POTS to 200 age- and sex-matched healthy controls found quality of life in the POTS group was worse than that of people with heart disease, COPD, cancer and kidney disease—and comparable to multiple sclerosis.

It’s essential to pick up patients at risk of this condition and intervene early to maintain functionality.

Patients often describe a constellation of vague, multisystem symptoms indicative of orthostatic intolerance.

Common early features include:

• New-onset fatigue
• Cognitive difficulty (“brain fog”)
• Reduced exercise tolerance
• Headaches or new-onset migraine
• Gastrointestinal symptoms such as early satiety, bloating, loss of appetite
• Withdrawal from school, work or social activity
• Feeling “just not how I was”

History as a red flag

The natural history of POTS is a key clue. Onset often occurs around the age of 13 or 14, frequently (but not always) after a mild viral illness. Patients usually go back to school or work but realise they are not functioning as well as they used to. It may be weeks, months, or more before they present to the GP.

A good question to ask is “When did you last feel healthy?” Then ask about triggers, which, along with viral illness, can include:

• Concussion (more common in males in high-impact sports)
• Recent surgery
• Severe or cumulative psychological stress (such as multiple deaths in the family)

Assessing POTS in general practice

A common misconception is that POTS must be diagnosed by a specialist using tilt-table testing, but this is not the case. GPs can take the following steps to commence diagnosis.

Rule out other causes of tachycardia or orthostatic symptoms

Essential investigations include:

• Thyroid function tests
• Full blood count (to exclude anaemia)
• Review for acute infection
• Assessment for malnutrition or dehydration

Identify multisystem autonomic symptoms

Look for:

• Abnormal sweating (too much or too little)
• Upper gut symptoms (bloating, early satiety, nausea) without clear cause
• Orthostatic dizziness, blurred vision or faintness
• Difficulty standing still, especially in heat, queues or school assemblies

A revealing question is “How do you feel when standing in a hot shower for a long time?” Most patients with POTS will say they cannot do it or need to sit on the ground.

Conduct the active stand test

This involves getting baseline heart rate and blood pressure measures after the patient has been lying down for five minutes. Then get them to stand up (without moving around) and measure these again immediately and every minute for 10 minutes. This helps confirm the body is chronically unable to manage blood pressure in the absence of muscle contraction, leading to tachycardia.

You can use this time to take a thorough history, get your practice nurse to do it, or schedule a longer follow-up appointment if necessary.

The diagnostic criteria is a minimum increase of 30 beats per minute (bpm) from lying to standing on at least two recordings (40 bpm in adolescents up to 19 years).

Do a Malmo POTS score

This is a validated 12-question adjunctive diagnostic tool, with a score of 42 or more highly suspicious for POTS. Your nurse could run through this with the patient, or they can take it home and return it.

Management in primary care

GPs can recommend several strategies to ease symptoms and improve function.

Ankle to high-waist external compression of at least 15mm Hg is the best non-pharmacological way to counter pooling in the legs and splanchnic region. Medical grade garments are not necessary; products from sports retailers (e.g., Supercore, 2XU, SRC Health brands) will suffice.

Salt loading can help increase blood volume and is safe in these patients unless there are contraindications. Aim for 4000 mg sodium/day (approximately 10 g salt or 2 tsp/day). This should ideally come from food rather than salt tablets—which can cause stomach irritation if gut dysmotility is present. Patients can have electrolyte drinks provided they are low in preservatives and glucose, as this population is prone to reactive hypoglycaemia.

A lower carbohydrate diet with smaller, more frequent meals is recommended, and patients should be advised to avoid known triggers like hot showers and prolonged standing.

Some medications can worsen orthostatic intolerance—including SNRIs, OCPs with a diuretic effect (e.g., Yasmin) and spironolactone—so consider alternatives whenever possible.

When to refer

Specialist referral is appropriate if the diagnosis is unclear, symptoms are severe or worsening, or if the patient has coexisting complex conditions (e.g., significant hypermobility or if you suspect autoimmune or endocrine disease).
While a cardiologist can deal with the high heart rate, referral to a general physician is often more appropriate for managing this multisystem condition.

While a cardiologist can deal with the high heart rate, referral to a general physician is often more appropriate for managing this multisystem condition.

Key takeaways

• Early identification of POTS is crucial to prevent long-term functional decline.
• Red flags include orthostatic intolerance, new onset migraine, gastrointestinal dysmotility or functional symptoms.
• A history of viral illness followed by failure to return to previous functional capacity is a key diagnostic clue.
• Hypermobility and POTS frequently coexist—symptoms of one should prompt consideration of the other.
• Diagnosis can be initiated in primary care and includes ruling out other possible causes.
• One negative standing test does not exclude a POTS diagnosis and a high clinical suspicion should prompt reassessment.
• Heat, prolonged standing, and some medications can worsen symptoms and should ideally be avoided.
• Compression and salt loading are first-line treatments targeting the underlying preload problem.

Further information

Australian POTS Foundation | Diagnostic information, resources, patient information sheet and a clinician directory
Connective Tissue Disorders Network Australia | Health professional resources and education
The Ehlers-Danlos Society | Resources for health professionals