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First comprehensive UK insight into PoTS

The effects of postural syndrome, which predominantly afflicts young women, are made worse by poor understanding and inconsistent treatment of the condition, according to a study published recently on BMJ Open.1

Postural tachycardia syndrome (PoTS) is thought to be a by-product of orthostatic intolerance – a disorder of the autonomic nervous system in which the circulatory and nervous system responses needed to compensate for the stress put on the body on standing upright, do not work properly.

The condition is associated with tachycardia, dizziness, fainting, nausea, poor concentration, excessive fatigue and trembling, and can be so severe as to make routine activities, such as eating and bathing, difficult. PoTS is frequently not recognised in the UK, say the authors, its symptoms being attributed to anxiety, panic disorder, or chronic fatigue syndrome (CFS).

They therefore assessed 84 members of the national charity and support group, PoTS UK, and 52 patients diagnosed with the syndrome at the NHS falls and syncope clinic in Newcastle, north east England, between 2009 and 2012.

Professor Julia Newton (Medical School, Newcastle University)

Professor Julia Newton (Medical School, Newcastle University)

All participants completed a validated set of questionnaires specifically aimed at gauging levels of fatigue; sleepiness; orthostatic intolerance; anxiety and depression; ability to carry out routine tasks; and brain power. The profile of the two groups was broadly similar, and indicated that people with PoTS are predominantly young – average age of diagnosis 30–33 – well-educated to degree or postgraduate degree level, and female.

Poor health had prompted a significant number to change their jobs or give up working altogether, and both groups experienced high levels of fatigue, daytime sleepiness, orthostatic symptoms, anxiety and depression, memory and concentration problems, and considerable difficulty carrying out routine tasks.

Around one in five people had been diagnosed with CFS and a similar proportion had Ehlers-Danlos syndrome (inherited connective tissue disorders), suggesting that there may be an underlying overlapping cause, say the researchers.

Beta-blocker drugs, which regulate heart rate, were the most common treatment for PoTS. But altogether, patients reported taking 21 different combinations of drugs. And a significant number were taking nothing at all or just salt.

“Patients with PoTS…have significant and debilitating symptoms that impact significantly on their quality of life,” write the researchers. “Despite this, there is no consistent treatment, high levels of disability, and associated comorbidity.”

They go on to emphasise that their findings indicate that patients with PoTS experience a similar level of disability to people with CFS, but don’t yet receive the same protection in law. “Our experience suggests that some patients never recover, and that a subset will worsen over time,” they conclude.

Speaking to BJC Arrhythmia Watch, co-author Professor Julia Newton (Medical School, Newcastle University) said: “This is the first study of symptom impact and prevalence in PoTS from a UK perspective. The demographic included in the study are similar to that for CFS/myalgic encephalomyelitis (ME) and perhaps explains why PoTS is frequently misdiagnosed as CFS/ME.”

She added: “As has been shown in those with CFS/ME, the association with higher academic attainment most probably represents healthcare-seeking behaviour rather than an absolute increased prevalence in this group. This is important when considering the study cohort were from a specialist clinic and the patients group and illustrates the need for further studies from other clinics and even a population prevalence study to explore this further.”

Although the study did not identify any genetic association with the disease, Professor Newton pointed out that “there has been at least one study suggesting an association with a genetic abnormality of a noradrenalin transporter. So this is an area where further work is definitely needed.”

“We have published a number of studies describing the prevalence of PoTS in those with CFS/ME something which is a particular research interest in my group – and where I believe there will be therapeutic opportunities in CFS/ME.  We have also studied in more detail our clinic cohort and have a submitted publication about the overlap with other conditions. Going forward we would be very keen to develop further research in this important and poorly understood condition,” Dr Newton concluded.

References

1. McDonald C, Koshi S, Busner L, Kavi L, Newton JL. Postural tachycardia syndrome is associated with significant symptoms and functional impairment predominantly affecting young women: a UK perspective. BMJ Open 2014;4:e004127. http://dx.doi.org/10.1136/bmjopen-2013-004127

Published on: June 26, 2014

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