PoTS specialist online: when a second opinion helps

Why so many people with PoTS look further afield

In the largest survey to date, 4,835 people with postural orthostatic tachycardia syndrome waited a median of 24 months for their diagnosis, and misdiagnosis along the way was common (J Intern Med 2019). Part of the reason is access: a joint survey of the European neurological and autonomic societies identified 84 specialised autonomic laboratories in 22 countries – unevenly spread, and far fewer in Southern and Eastern Europe than in the North and West (Eur J Neurol 2022). Many clinics have long waiting lists or only accept local referrals.

If you already have a diagnosis or a well-founded suspicion, you do not always need to wait for the next specialist slot at home. A careful review of what has been done, by a physician who knows PoTS well, can often move things forward.

What a second opinion can do

• Check whether your findings meet the consensus criteria – a sustained heart-rate rise of at least 30 bpm within 10 minutes of standing (40 in adolescents), without orthostatic hypotension, and symptoms for at least three months – and whether other causes have been ruled out.
• Identify which examinations are still missing and should be arranged locally.
• Give concrete, written recommendations for daily life and for your GP: fluids and salt, compression, a carefully dosed exercise programme – or pacing first if you have post-exertional malaise.
• Clarify the overlap with long COVID and ME/CFS, which changes what is advisable.

How to prepare

1. Collect your records: doctors’ letters, ECGs, Holter and blood-pressure recordings, stand or tilt-table test results, blood tests.
2. Do a standing test at home on two or three days and write down the values.
3. Note what makes your symptoms worse – heat, meals, standing – and whether you crash 12 to 48 hours after exertion.
4. List everything you currently take, including over-the-counter products.
5. Write down your three most important questions.

Choosing a specialist: five questions to ask

1. How much experience does the physician have with PoTS and orthostatic intolerance – clinically and in research?
2. How do they deal with post-exertional malaise and ME/CFS? Exercise advice without asking about it is a warning sign.
3. Will you receive a written report that your own doctor can work with?
4. What exactly does the fee include, and are there follow-up costs?
5. Will your insurer reimburse part of it? Within the EU, cross-border care is often reimbursed only up to what your own system would pay for the same service, and only if it is covered at home – ask before you book.