Postural tachycardia syndrome

When standing, the heart races and the body struggles to adapt: dizziness, palpitations, intense fatigue. POTS is one of the most common forms of dysautonomia.

What is POTS?

The autonomic nervous system controls, without us thinking about it, heart rate, blood pressure, digestion and temperature. When it does not work properly, this is called dysautonomia.

Postural orthostatic tachycardia syndrome (POTS, Postural Orthostatic Tachycardia Syndrome, sometimes called STOP in French) is a form of dysautonomia: when moving from lying down to standing, the heart speeds up excessively and symptoms appear, which improve when lying down again.

It more often affects women, usually between 15 and 50, and sometimes appears after a viral infection, a pregnancy, surgery or a period of bed rest. Cases have also been described after COVID-19, as part of long COVID.

Symptoms that get worse when standing

They vary from person to person and from day to day, and often ease when lying down.

Heart

Palpitations, a racing heart when getting up or staying upright.

Dizziness and faintness

Light-headedness, blurred vision, feeling faint, sometimes passing out.

Fatigue

Intense fatigue, exercise intolerance, long recovery time.

Brain fog

Difficulty concentrating and remembering, slowed thinking.

Other signs

Headaches, nausea, digestive problems, breathlessness, tremors, legs turning purple when standing.

Aggravating factors

Heat, standing for a long time, large meals, dehydration, periods, alcohol, lack of sleep.

Emergency: chest pain, severe breathing difficulty, fainting with injury or that does not resolve quickly: call 15 or 112.

Measuring the heart lying down, then standing

According to international criteria, POTS is diagnosed when:

  1. heart rate rises by at least 30 beats per minute (40 in 12- to 19-year-olds) within 10 minutes of standing up;
  2. without a significant drop in blood pressure (which distinguishes POTS from orthostatic hypotension);
  3. with symptoms for at least 3 months that get worse when standing and improve when lying down.

The doctor carries out an active stand test (measurements lying down then standing) or a tilt-table test in hospital. They also look for other possible causes: dehydration, anaemia, thyroid problems, medication side effects, heart disease.

Helping the body tolerate standing better

There is no single treatment: care combines several measures, tailored to each person by the doctor.

Fluids and salt

Drinking more water and, if your doctor advises it, increasing salt helps raise blood volume.

Compression

Compression stockings or tights, sometimes an abdominal binder, reduce blood pooling in the legs.

Everyday habits

Getting up slowly, crossing your legs or tensing your calves when standing, eating smaller meals, avoiding heat.

Gradual reconditioning

Very gradual physical activity, first lying down or seated (recumbent bike, swimming never alone, rowing if your joints allow it), supervised if possible.

Medication

Depending on the case, a cardiologist or specialist may suggest treatment to slow the heart or support blood pressure.

Important: do not change your salt intake or treatments without medical advice, especially if you have high blood pressure, heart or kidney disease.
Managing your energy day to day

Hypermobile EDS and dysautonomia

POTS and other forms of dysautonomia are often reported in people with hypermobile EDS or a hypermobility spectrum disorder. Several studies find they are more common in these situations.

The reasons are still being studied: greater flexibility of the blood vessels, which would let blood pool in the legs, is one of the explanations suggested. POTS can also coexist with digestive problems or mast cell activation.

Are you affected by POTS?

SED Gastroparésie N’Cie enables patients, relatives and carers to talk to each other, share their experiences and not face the illness alone.

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