Postural Orthostatic Tachycardia Syndrome — POTS — is one of the most under-diagnosed conditions in neurology. International data suggest the average patient waits 5–7 years from first symptom to confirmed diagnosis, often after being told their dizziness, palpitations, fatigue or brain fog are “just anxiety”. In Sydney, that delay has been even longer because private autonomic testing has been hard to find and public hospital wait times routinely run to 6–12 months.

This post explains what POTS actually is, when to suspect it, what the testing involves, what the diagnosis means, and why we’ve worked hard to make this assessment available within a week through our POTS testing clinic at Bondi Junction.

What is POTS?

POTS is a form of orthostatic intolerance — your body cannot maintain stable blood pressure and heart rate when you stand up. The defining feature is a sustained increase in heart rate of at least 30 beats per minute (40 bpm in adolescents) within 10 minutes of standing, without a drop in blood pressure, in association with symptoms.

It’s not a single disease. It’s a syndrome with at least three recognised subtypes — neuropathic (peripheral autonomic nerve damage), hyperadrenergic (excess sympathetic drive), and hypovolemic (low circulating blood volume). Many patients have features of more than one. Identifying which pattern fits matters because it changes treatment.

When should you suspect POTS?

The pattern that should trigger a workup:

• Lightheadedness, racing heart, or near-fainting on standing — particularly worse in the morning, after meals, after exercise, after hot showers, or after prolonged bedrest
• Persistent fatigue out of proportion to activity
• Brain fog — difficulty concentrating, word-finding problems, slowed thinking
• Exercise intolerance — feeling worse after physical activity (post-exertional malaise)
• Episodes of pallor, sweating, nausea, shakiness, or chest discomfort on standing
• Multiple system symptoms — gut motility issues, bladder symptoms, temperature dysregulation, sleep disturbance
• Often onset after a viral illness, surgery, pregnancy, or significant physical or emotional stressor

POTS most commonly affects women aged 15–50. It frequently overlaps with hypermobile Ehlers-Danlos syndrome (hEDS), mast cell activation syndrome (MCAS), and ME/CFS. Crucially, roughly half of POTS patients also have small fibre neuropathy — the small autonomic nerve fibres themselves are damaged. This is why isolated cardiac workups so often miss it.

The diagnostic gap — why it takes 5–7 years

The path most patients describe sounds painfully similar:

1. Symptoms start, often after an illness or stressful event
2. GP arranges standard bloods, ECG, occasionally a 24-hour Holter — all “normal”
3. Cardiology referral — echo and stress test “normal”
4. Possibly endocrine, gynaecology, gastroenterology referrals — each system looks “normal” on standard tests
5. Anxiety is offered as a diagnosis. Sometimes accurately, often not
6. Eventually someone thinks of orthostatic testing

The problem is that standard cardiology and neurology testing measures the wrong things. POTS lives in the autonomic nervous system — the part of the nervous system you don’t consciously control. None of the standard tests directly measure autonomic function. That is what specialist autonomic testing exists for.

What autonomic testing actually involves

A comprehensive autonomic assessment combines several non-invasive tests in a single visit. None of them requires needles or contrast or sedation. The patient lies on a table; recordings are taken at rest, during deep breathing, during Valsalva manoeuvre (a brief blow into a tube), and during postural change. A typical battery includes:

• Continuous beat-to-beat heart rate and blood pressure monitoring — captures the changes that 24-hour Holters miss because they only record heart rate
• Heart rate variability (HRV) analysis — measures parasympathetic and sympathetic balance
• Active stand or tilt table testing — provokes the postural changes that define POTS
• Valsalva manoeuvre — assesses baroreflex sensitivity
• Deep breathing test — vagal function
• SudoScan — measures sudomotor (sweat gland) function on hands and feet, a sensitive marker of small fibre autonomic neuropathy

Done together, these tests usually tell us within an hour whether POTS is present, which subtype fits, and whether there is small fibre involvement. Our Sydney clinic uses this protocol routinely.

What the diagnosis changes

A POTS diagnosis is not the end of the journey — but it’s the start of effective treatment. Concrete things that change once you have the diagnosis:

• Targeted treatment — fluids, salt, compression, graded recumbent exercise, and medications such as beta-blockers, ivabradine, fludrocortisone, midodrine or pyridostigmine depending on subtype
• Stopping medications that make POTS worse — including some commonly prescribed anti-anxiety drugs and some blood pressure medications
• Pacing and graded exercise rehabilitation — POTS-specific exercise protocols (Levine, CHOP) actually improve symptoms; standard exertional rehab can make things worse
• Recognition and management of overlapping conditions — hEDS, MCAS, small fibre neuropathy, ME/CFS
• Validation — for many patients this is the first time a doctor confirms what they have been feeling for years is real and measurable

The 50% small fibre neuropathy overlap

One of the most important findings of the last decade is that around half of POTS patients have evidence of small fibre neuropathy on objective testing. The small unmyelinated nerves that carry pain, temperature, and autonomic signals can be damaged even when standard nerve conduction studies (which test large fibres) are normal.

This matters because: (a) it confirms the autonomic nerve damage is real and measurable; (b) it changes what causes you investigate (autoimmune, post-viral, B12, diabetes precursors, idiopathic); and (c) it identifies patients who may benefit from treatments aimed at the underlying neuropathy. We assess for it routinely as part of the autonomic battery using SudoScan, and where indicated arrange skin biopsy for nerve fibre density. More on this at our small fibre neuropathy site (currently offline — please call the rooms for the relevant content).

Why we made this assessment available within a week

Public hospital autonomic labs in NSW are excellent but the wait times reflect the demand: 6–12 months is typical. For a 22-year-old whose education or career is paused while she works out what’s wrong, that wait is unconscionable. For a 45-year-old whose work performance is collapsing under “anxiety” that isn’t anxiety, the wait can be the difference between recovery and disability.

We built Autonomics Australia and the dedicated POTS Testing Sydney service to fill that gap. The full assessment battery is done in a single visit. Results — including the formal report — are typically with you and your GP within a week.

Getting tested in Sydney

If you suspect POTS in yourself or in a patient, the next steps are simple:

1. GP referral to Dr Ron Granot (or another autonomic specialist) — this allows the Medicare rebate
2. Book through our contact page or directly via POTS Testing Sydney
3. Bring a list of all current medications, a brief symptom timeline, and any prior cardiology / endocrine / autonomic test results
4. Plan to be at the rooms for 60–90 minutes for the full battery

The diagnostic journey for POTS in Australia has historically been far too long. It does not need to be. If the pattern in this post fits — please don’t accept “it’s just anxiety” without proper autonomic assessment first.

About the author

Related reading

• POTS subtypes — neuropathic, hyperadrenergic, hypovolaemic, deconditioning
• Tilt table vs active stand vs NASA lean — which test, when
• POTS overlap with hEDS, MCAS and ME/CFS
• After a POTS diagnosis — what happens next
• All autonomic disorders we assess
• The full autonomic testing protocol
• Autonomic testing — patient and doctor walk-through

Dr Ron Granot is a consultant neurologist (FRACP) based in Bondi Junction, Sydney. He founded Autonomics Australia to provide rapid, comprehensive autonomic testing in the Sydney private sector. Booking and contact details at potstestingsydney.com.au.