Experiences of living with postural tachycardia syndrome.

OBJECTIVE: Postural tachycardia syndrome (PoTS) is a disorder of the autonomic nervous system which involves a range of symptoms, worsened when adopting an orthostatic (upright) position. Symptoms can include tachycardia, dizziness, fainting, nausea as well as many others which, as is typical of a syndrome, vary from person to person. Although research is increasing into this condition, the unifying experiences of managing it on a daily basis have not been extensively investigated. This study aimed to capture participants' experiences of living with PoTS. METHOD: A longitudinal digital ethnographic approach was employed. Eight participants recorded daily video diaries discussing their experiences of PoTS and its impact for 17 days. Interpretative phenomenological analysis was utilised to analyse the data and identify connections across participants' accounts. RESULTS: Four superordinate themes emerged: 'loss of control and lack of agency over body', 'identity changes', 'lack of understanding from others' and 'adapting to cope with PoTS'. DISCUSSION: The findings demonstrated the complex and widespread impact these participants experience from their PoTS symptoms, including the consequent emotional difficulties that result from managing this condition. An overall lack of understanding about PoTS by others was emphasised, suggesting the requirement for better education and support services for this condition.

Cognitive and psychological issues in postural tachycardia syndrome.

Postural tachycardia syndrome (POTS) is one of the most common forms of chronic orthostatic intolerance. In addition to orthostatic symptoms, many POTS patients report incapacitating cognitive dysfunction or "brain fog" even while lying down or seated. Consistent with these subjective reports, there is accruing objective evidence of specific cognitive difficulties in POTS, with studies showing mild to moderate cognitive impairment using standardized neuropsychological assessment batteries. The precise profile of cognitive dysfunction in POTS patients has been shown to vary among these studies potentially due to the neuropsychological tests used, postural position, comorbidities and length of illness, inclusion of adolescent versus adult patients, and sites of recruitment. The extent of the impact that this cognitive challenge has in patients justifies ongoing investigation and research into lifestyle and pharmacological treatments. Psychologically, patients face challenges congruent with many chronic illnesses, perhaps especially early in adjusting to the condition. POTS patients often exhibit mild to moderate depression symptoms as well as symptoms of anxiety disorders. Since even low levels of anxiety can exacerbate symptoms, and a high number of patients experience sub-clinical low mood and sleep disturbances, there is a likely role for psychotherapy in helping control adjustment-related issues, and possibly aberrant physiology, in POTS.