Living with PoTS: Lifestyle changes that make a difference

Postural orthostatic tachycardia syndrome (PoTS) is a condition that affects the autonomic nervous system, which controls functions such as heart rate and blood pressure. When standing, people with PoTS experience an excessive increase in heart rate, often accompanied by dizziness, faintness, and fatigue. Although there is no cure, many patients find that lifestyle changes can significantly improve their symptoms and quality of life.

What causes PoTS?

PoTS can develop for several reasons, and the cause is not always clear. It may occur after a viral infection, surgery, pregnancy, or trauma, and it can also be linked to other conditions such as Ehlers-Danlos syndrome, autoimmune disorders, or chronic fatigue syndrome.

In many cases, the condition is related to how blood is distributed when standing, leading to reduced blood flow to the brain and a rapid heart rate as the body tries to compensate. Hormonal changes and genetic factors can also play a role.

PoTS frequently coexists with hypermobility spectrum disorders, migraine, gastrointestinal dysmotility, and mast-cell activation–type symptoms. Recognising these associations helps individualise care.

What are the main symptoms?

People with PoTS often experience light-headedness or dizziness when standing up, which may lead to fainting in some cases. Other symptoms can include heart palpitations, fatigue, chest pain, brain fog, blurred vision, and digestive discomfort.

Symptoms tend to worsen after long periods of standing, in hot weather, or after large meals. Many people also report that symptoms fluctuate day to day, making the condition unpredictable and sometimes difficult to manage.

How is PoTS managed?

Treatment for PoTS focuses on relieving symptoms and improving day-to-day function. Lifestyle measures are a key part of management. These strategies aim to support circulation and reduce the sudden changes in blood flow that trigger symptoms.

Management is often multidisciplinary and may involve cardiology, physiotherapy, dietetics, and psychology for optimal outcomes.

In some cases, medications that help regulate heart rate or blood pressure may be prescribed by clinicians experienced in PoTS management.

What lifestyle changes can make a difference?

Adjusting daily habits can have a positive impact on symptom control. Some of the most effective strategies include:

• Fluid intake: aim for 2–3 litres per day (unless medically contraindicated).
• Salt intake: typically 6–10 g per day, under supervision if hypertension or renal disease is present.
• Compression: waist-high 20–30 mmHg stockings or abdominal binders are most effective.
• Exercise: begin with recumbent or horizontal training (recumbent bike, rowing, swimming) 3–4 times per week, then progress gradually to upright exercise.
• Head-up sleeping: raise head of the bed by 10–15 cm (4–6 inches).
• Meal advice: small, frequent meals; avoid heavy carbohydrate loads to minimise post-meal hypotension.

These changes may take time to show benefit, but consistency is key. Each person may respond differently, so strategies should be tailored to individual needs.

How can patients maintain long-term wellbeing?

Living with PoTS requires ongoing adjustment and support. Keeping a symptom diary can help identify triggers and track progress. Working with a doctor or physiotherapist experienced in PoTS can ensure treatment remains appropriate as symptoms change.

Support groups and patient organisations can also provide valuable advice and reassurance. With careful management and a balanced approach, many people are able to lead active and fulfilling lives despite the challenges of PoTS.

Dr Ayyaz Sultan is a consultant cardiologist with a specialist interest in PoTS and autonomic dysfunction. He runs dedicated dysautonomia clinics across the UK, focusing on comprehensive assessment, lifestyle optimisation, and long-term patient support.