Dr Nicholas Gall, Consultant Cardiologist at King’s, was one of the first cardiologists in the UK to focus on PoTS in his patients and he subsequently developed the King’s PoTS service to meet their needs. Here he tells us about the condition and how the service developed.
“PoTS or postural (orthostatic) tachycardia syndrome is an abnormality in the neural control of the heart and lung system, which leads to an inappropriately fast heart rate, low and variable blood pressure and an abnormal breathing pattern. Many will not have heard of PoTS and its related conditions but it is increasingly likely that a proportion of long Covid patients are describing PoTS symptoms. We may therefore see a significant increase in the number of patients in the future.
"Cardiac symptoms can occur on standing, associated with a significant heart rate increase, likely related to an abnormality in blood vessel constriction in the legs, meaning that blood did not pump upwards from the legs to the heart and therefore to the brain in significant enough quantities.
“We now understand that PoTS is not one condition, but is likely to be a number of conditions where there are abnormalities in blood vessel tightening, heart rate control and blood volume control, such that patients find it more difficult to stand and, when upright, note symptoms of chest discomfort, breathlessness, palpitation, dizzy spells and blackouts. Patients can describe a range of gastrointestinal symptoms, which can include nausea and vomiting, bloating and constipation or diarrhoea. Bladder function can be affected meaning that patients suffer frequency and sometimes difficulty passing urine. Migraines are particularly common and interestingly vestibular migraine, where there is vertigo, world-spinning dizziness. Many patients describe quite florid allergies and also hypermobility, although the exact reasons for these associations remain unclear.
“We began to develop the PoTs service at King’s PoTS service some 10 to 15 years ago, in collaboration with our Neurology Team. Patients presented to the arrhythmia clinic and investigations allowed us to recognise the clear dysregulation of their heart system. As time has gone on our experience has grown, we have learnt considerable amounts about the syndrome and how to manage it. Initially, we might see just one patient a month but now we see 35 patients or more weekly, referred from everywhere in the UK and ours is the busiest dedicated PoTS clinic in the UK.
“Therapies can involve increased fluid and salt intake, the use of compression clothing to assist upwards blood flow and exercise. There is excellent evidence that reconditioning is vital. There are medications which can assist including heart rate slowing medications, blood vessel tightening medications and fluid retaining medications.
“We recognised early on the importance of a multidisciplinary approach. It was recognised by the cardiac physiology team early on that an abnormality in breathing pattern was very common and our respiratory physiotherapy team pioneered this therapy. We recognise a clear association with migraine and vestibular migraine and work with specialists at Guy's and St Thomas's. The association with bladder dysfunction is clear and common and many of our patients will see and receive excellent advice from our Urology Department. The importance of lifestyle management is vital and advice is provided through the exercise intolerance clinic.
“We have been honoured to receive excellent feedback from patients throughout the UK and abroad, and receive a very large number of referrals, underpinning the success of the service. Unfortunately, there are many more PoTS patients out there who either do not recognise their symptoms or are not referred and therefore there is a significant unmet need throughout the UK. Some have estimated that there may be as many as 120,000 UK patients. As it is a neural control problem of the cardiovascular system in most part, it is not necessarily served particularly well through cardiology nor in neurology in many hospitals which limits patients’ access. Hopefully, in time, its importance will be better recognised and it may be that the Covid pandemic will contribute to that.
Dr Gall is patron of PoTS UK.