Postural tachycardia syndrome (PoTS): guide

PoTS stands for postural (related to body position), tachycardia (fast heart rate) and syndrome (a combination of symptoms). PoTS UK describes it as an abnormality of the functioning of the autonomic nervous system, the part of the nervous system that controls everything we do not have to think about, including heart rate, blood pressure, digestion, bladder control and sweating.

When a healthy person stands, blood vessels narrow and the heart rate rises a little so blood still reaches the heart and brain. PoTS UK explains that in PoTS this automatic adjustment does not work correctly, leading to an excessive rise in heart rate, increased noradrenaline (norepinephrine) in the blood and altered blood flow to the brain.

The NHS notes that the condition is also written PoTS or POTS and that, although there is currently no cure, it can be managed.

The NHS says PoTS affects everyone differently, with some people having mild symptoms and others being very limited in daily life. Some symptoms happen on standing and ease when sitting or lying down.

• Dizziness or light-headedness.

• Noticeable heartbeats (palpitations), chest pain and shortness of breath.

• Shaking and sweating.

• Fainting or nearly fainting.

• Digestive problems such as sickness, diarrhoea, constipation, bloating and tummy pain.

• Headaches and sight problems such as blurred or tunnel vision.

• Hands and feet looking purple, which can be harder to see on brown or black skin.

• Weakness, extreme tiredness, poor exercise tolerance and poor sleep.

• Problems with thinking, memory and concentration, often called brain fog.

It is not clear what causes PoTS, and the NHS says it can develop suddenly or gradually. People may be more likely to have it if they have long COVID, myalgic encephalomyelitis or chronic fatigue syndrome, or joint hypermobility syndrome.

Certain things can worsen symptoms, according to the NHS: getting too hot, standing or sitting upright for long periods, eating (especially carbohydrates such as white bread, pasta and rice), not drinking enough fluids, drinking alcohol, resting too much, exercise and being on your period. Symptoms may be worse in the morning and can change from day to day, so keeping a diary of triggers helps.

A GP may check blood pressure and heart rate before and after you stand up. The NHS says repeating this several times is called an active stand test. Blood tests may check for other conditions and an electrocardiogram (ECG) may be done.

PoTS UK sets out the criteria: symptoms mostly when upright and relieved by lying down for at least 3 months; a sustained heart rate increase of more than 30 beats per minute within 10 minutes of standing, or at least 40 in people aged 12 to 19; and usually no drop in blood pressure on standing. Where resting heart rate is below 60, the baseline is taken as 60. The diagnosis should not change from visit to visit if the rise falls slightly under the threshold on one occasion.

The NHS says you may be referred to a specialist if lifestyle changes do not help, if you are very unwell or if the cause is unclear. Further tests can include urine tests, echocardiogram, 24-hour blood pressure and heart rate monitoring and a tilt table test, where you lie on a bed that is tilted upwards while your heart rate is monitored.

The NHS says that finding the right treatment can take time. A GP or specialist may suggest lifestyle changes first, such as drinking more fluids, eating small meals with fewer carbohydrates and wearing support tights or stockings.

Medicines may be prescribed to control symptoms. The NHS gives fludrocortisone, a steroid, and medicines used for heart conditions and blood pressure such as beta blockers as examples, and says that several different medicines or combinations might need to be tried. Medicine is not needed by everyone: PoTS UK says many people's symptoms will improve with lifestyle changes, though some need medication and some have significant symptoms over many years.

Dosage, salt intake and exercise programmes should be decided with a clinician who knows your heart and blood pressure, since needs differ.

If you suddenly feel faint or dizzy, the NHS suggests lying down and raising your legs until you feel better. If you cannot lie down, you can try crossing one leg in front of the other while standing, rocking up and down on your toes, clenching your buttock and tummy muscles, or clenching your fists.

• Drink plenty of fluids until your pee is pale.

• Try gentle exercise such as walking, pilates and swimming, stopping if symptoms appear.

• Raise the head of the bed so you are not lying completely flat.

• Wear support tights to improve blood flow.

• Avoid standing for too long, getting up too quickly after lying down, and too much caffeine or alcohol.

PoTS UK notes that many healthcare professionals do not know that PoTS exists, so it may not be thought of, and suggests that taking printed information to an appointment can help. People with a long history of fainting or palpitations can feel dismissed, so a clear symptom diary, including what happens on standing, is useful evidence.

Pacing activity, planning rest, and keeping fit within limits are common themes. Work, education and driving may need adjustment, and a GP or specialist can write supporting letters. Joint hypermobility, chronic fatigue and long COVID can coexist with PoTS, so a broader care plan may be needed.

Support organisations such as PoTS UK run online peer groups, which many people find valuable.

Call 999 for fainting with chest pain, severe breathlessness, a very fast or irregular heartbeat that does not settle, a head injury after a faint, or weakness, speech difficulty or a drooping face. Use NHS 111 for new symptoms that worry you but are not an emergency.

The NHS pathway usually begins with the GP, who can do a stand test and arrange an ECG and blood tests, and refer on to cardiology, neurology or a specialist autonomic or syncope clinic. People who see a private cardiologist or autonomic specialist can ask for the same tests and should share the findings with their GP so that treatment is coordinated.