PoTS

Also called Postural tachycardia syndrome, Postural orthostatic tachycardia syndrome

The heart races on standing up. Mostly affects young women, and takes an average of several years to diagnose.

What it is

PoTS is a disorder of the autonomic nervous system: the part that adjusts blood pressure and heart rate automatically when you stand.

In PoTS that adjustment fails. Blood pools in the legs on standing, and the heart compensates by beating much faster, rising by at least 30 beats per minute within ten minutes of standing, or to over 120.

It disproportionately affects young women, and the combination of that demographic with symptoms of dizziness, palpitations and fatigue leads to an average diagnostic delay of several years, much of it spent being told it is anxiety.

It occurs frequently alongside hypermobility, Ehlers-Danlos syndromes and long COVID.

Signs you might notice

Dizziness, light-headedness or fainting on standing, or after standing still for a while.

A heart that races on standing and settles on lying down.

Fatigue, brain fog, headaches, shakiness, nausea.

Symptoms worse in heat, after meals, in the morning, and around periods.

Blotchy purple discolouration of the legs on standing, which is a useful visible sign.

How it can affect day-to-day life

Education and work suffer badly. Standing assemblies, queues, showers and hot classrooms are all triggers, and the resulting absence is often treated as avoidance.

Being told it is anxiety is close to universal, and it delays effective treatment that would genuinely help.

Deconditioning worsens PoTS, and fear of symptoms reduces activity, so the spiral runs the same way as in so many conditions here.

Supporting someone well

Increase fluid and salt substantially, under medical advice. Two to three litres of fluid a day and added salt is standard advice and it makes a real difference.

Use compression: waist-high garments work far better than knee-high ones, because the pooling is abdominal as much as it is in the legs.

Stand up slowly, and use counter-manoeuvres: crossing legs, clenching muscles, squatting.

Exercise in a recumbent position first: rowing, recumbent cycling, swimming. Upright exercise comes later. Structured programmes exist and they work.

Eat smaller, more frequent meals, since large meals divert blood to the gut.

At school or work, allow sitting, water, a cooler environment, and no penalties for needing to lie down.

Where to get help

Ask a GP for an active stand test or referral for tilt-table testing, and for a cardiologist or neurologist with autonomic experience.

PoTS UK provide patient information and a list of specialists, and their material is useful to take to an appointment.

Fainting with injury, or chest pain, needs assessment rather than attribution to PoTS.