Significant and debilitating symptoms impacts quality of life
PoTS (postural orthostatic tachycardia syndrome) is defined by excessive heart rate increments upon upright posture). Persons with PoTS experience heart beats that increase 30 beats or more a minute upon standing and/or increase to 120 beats or more per minute upon standing. Symptoms include dizziness, fainting, nausea, poor concentration, excessive fatigue and trembling, and can be so severe as to make routine activities, such as eating and bathing, very difficult to do. People from any age group can experience PoTS however, 75- 80% of people affected are women between the ages of 15 and 50. In the US, PoTS is thought to affect around 170 per 100,000 of the population, one in four of whom is disabled and unable to work.
The symptoms of PoTS and their impact are frequently not recognized in the UK or may be associated to anxiety, panic disorder, or chronic fatigue syndrome (CFS), leading to a misdiagnosis. With this in mind researchers from New Castle University upon Tyne, UK, Institute for Aging and Health and colleague’s from PoTS UK, examined whether PoTS affects a particular age groups and how.
Researcher’s evaluated 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.
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 two groups were mostly similar and those with PoTS are mainly young with an average age of 30 – 33 years at time of diagnosis and over 60& had a university or postgraduate degree.
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.
About one in five had been diagnosed with CFS (chronic fatigue syndrome) and a similar number had Ehlers-Danlos syndrome (a group of inherited disorders that affect your connective tissues).which suggest there may be an underlying cause say the researchers.
The most common treatment regime included β-blockers. Overall, 21 treatment combinations of medications and up to one-third of participants were not taking any treatments.
According to the researchers “Patients with PoTS ... have significant and debilitating symptoms that impact significantly on their quality of life.” "Despite this, there is no consistent treatment, high levels of disability, and associated comorbidity."
The research team stresses the fact that their findings suggest that patients with PoTS experience a similar level of disability to people with CFS, but yet don't receive the same protection in law. "Our experience suggests that some patients never recover, and that a subset will worsen over time.”
This study appears in the BMJ Open Journal.