Postural tachycardia syndrome is associated with significant symptoms and functional impairment predominantly affecting young women: a UK perspective
Open accessAbstract
Objective: To examine a large UK cohort of patients with postural tachycardia syndrome (PoTS), to compare demographic characteristics, symptoms and treatment of PoTS at one centre compared to the largest patient group PoTS UK and to verify if their functional limitation is similar to patients with chronic fatigue syndrome (CFS). Design: A cross-sectional study assessed the frequency of symptoms and their associated variables. Patients and setting: Two PoTS cohorts were: (1) recruited via PoTS UK, (2) diagnosed at Newcastle Hospitals National Health Service (NHS) Foundation Trust 2009–2012. Patients with PoTS were then compared to a matched cohort with CFS. Main outcome measures: Patients’ detailed demographics, time to diagnosis, education, disability, medications, comorbidity and precipitants. Symptom assessment tools captured, Fatigue Impact Scale, Epworth Sleepiness Scale, Orthostatic Grading Scale (OGS), Hospital Anxiety and Depression Scale, Health Assessment Questionnaire, Cognitive Failures Questionnaire. Results: 136 patients with PoTS participated (84 members of PoTS UK (170 cohort; 50% return) and 52 (87 cohort; 60%) from Newcastle Clinics). The PoTS UK population was significantly younger than the clinic patients, with significantly fewer men (p=0.005). Over 60% had a university or postgraduate degree. Significantly more of the PoTS UK cohort were working, with hours worked being significantly higher (p=0.001). Time to diagnosis was significantly longer in the PoTS UK cohort (p=0.04). Symptom severity was comparable between cohorts. The PoTS total group was compared with a matched CFS cohort; despite comparable levels of fatigue and sleepiness, autonomic symptom burden (OGS) was statistically significantly higher. The most common treatment regime included β-blockers. Overall, 21 treatment combinations were described. Up to 1/3 were taking no treatment. Conclusions: Patients with PoTS are predominantly women, young, well educated and have significant and debilitating symptoms that impact significantly on quality of life. Despite this, there is no consistent treatment.
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Common comorbid conditions seen with POTS include hypermobile Ehlers-Danlos syndrome, mast cell activation syndrome, migraine and ME/CFS.
“Common comorbid conditions seen with POTS4,21 include hypermobile Ehlers–Danlos syndrome, mast cell activation syndrome,22 migraine and ME/CFS (Table 1).18”
From Diagnosis and management of postural orthostatic tachycardia syndrome (2022) · cites this paper as [21]
The Demographics section reports comorbid CFS/ME and Ehlers–Danlos syndrome in the PoTS cohort, supporting those associations. It does not identify the Ehlers–Danlos cases as hypermobile or report migraine as a comorbidity; mast cell activation syndrome has a separate citation in the citing sentence. (LLM, conf=0.86)
Experimental — accuracy not yet measuredCerebral blood flow reductions, orthostatic symptoms, and cognitive impairment can occur during and after upright as well as seated positions in people with POTS.
“cerebral blood flow reductions, orthostatic symptoms and cognitive impairment can occur during and after upright as well as seated positions in people with POTS”
From Self-reported symptom burden in postural orthostatic tachycardia syndrome (POTS): A narrative review of observational and interventional studies (2023) · cites this paper as McDonald et al., 2014
The ‘Strengths and limitations of this study’ section (page unavailable) describes symptoms provoked by standing, including diminished concentration; the results section also reports memory impairment among patients with PoTS. The paper does not report cerebral blood-flow reductions or establish that these effects occur during or after seated positions. (LLM, conf=0.87)
Experimental — accuracy not yet measuredPatients with POTS may simultaneously meet diagnostic criteria for migraine, hypermobile Ehlers-Danlos syndrome, mast cell activation syndrome, or chronic fatigue syndrome.
“Patients with POTS may simultaneously meet the diagnostic criteria for migraine, hypermobile Ehlers-Danlos syndrome (hEDS), mast cell activation syndrome (MCAS) or chronic fatigue syndrome (CFS) (Kavi et al., 2016; McDonald et al., 2014; Okamoto et al., 2012; Shaw et al., 2019).”
From Postural orthostatic tachycardia syndrome (POTS): State of the science and clinical care from a 2019 National Institutes of Health Expert Consensus Meeting - Part 1 (2021) · cites this paper as McDonald et al., 2014
The autonomic symptoms associated with POTS can negatively impact many aspects of daily life including cognitive function, sleep, energy levels and the ability to exercise, work and attend school.
“The autonomic symptoms associated with POTS can negatively impact many aspects of daily life including cognitive function, sleep, energy levels and the ability to exercise, work and attend school 18, 19, 21, 30, 35.”
From The face of postural tachycardia syndrome – insights from a large cross‐sectional online community‐based survey (2019) · cites this paper as [19]
A substantial proportion of POTS patients (20-50%) share diagnoses with chronic fatigue syndrome and Ehlers-Danlos syndrome.
“Interestingly, a substantial proportion of POTS patients (20-50%) share diagnoses with chronic fatigue syndrome (CFS) and Ehlers-Danlos syndrome (EDS) [31,33].”
From Postural orthostatic tachycardia syndrome: clinical presentation, aetiology and management (2019) · cites this paper as [31]
Verapamil is a calcium channel blocker with a negative chronotropic effect.
“This calcium channel blocker with negative chronotropic effect”
From Postural orthostatic tachycardia syndrome: clinical presentation, aetiology and management (2019) · cites this paper as [31]
Verapamil can be tested in the hyperadrenergic POTS type associated with higher blood pressure, migraine, and chest pain.
“can be tested in 'hyperadrenergic' type associated with higher BP, migraine, and chest pain [31].”
From Postural orthostatic tachycardia syndrome: clinical presentation, aetiology and management (2019) · cites this paper as [31]
Evidence and clinical experience for verapamil in POTS are very limited.
“The evidence and clinical experience are very limited”
From Postural orthostatic tachycardia syndrome: clinical presentation, aetiology and management (2019) · cites this paper as [31]
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References 38 · Cited by 76
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- Authors
- McDonald, C., Koshi, S., Busner, L., Kavi, L., & Newton, J. L.
- Affiliations
- Newcastle upon Tyne Hospitals NHS Foundation Trust (GB)
- Corresponding author
- Newton, Julia L
- Venue
- BMJ Open
- Publisher
- BMJ
- Published
- 2014-05
- Volume
- 4
- Issue
- 6
- Pages
- e004127
- ISSN
- 2044-6055 (ISSN-L)
- PMC
- PMC4067814
- OpenAlex
- W2130525402
- Cited by
- 76
- References
- 38
- Citations by year
- 2026: 2 · 2025: 7 · 2024: 7 · 2023: 10 · 2022: 12 · 2021: 9 · 2020: 12 · 2019: 5 · 2018: 8 · 2017: 1 · 2016: 2 · 2015: 1
- FWCI
- 1.32
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by-nc
- Locations
- BMJ Open (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- HighWire Press Open Archive (submittedVersion)
- Newcastle University ePrints (Newcastle Univesity) (cc-by)
- Funders
- National Institute for Health and Care Research (ACF-2008-01-005)
- Topics
- Health Sciences › Medicine › Surgery › Cardiovascular Syncope and Autonomic Disorders
- Health Sciences › Medicine › Psychiatry and Mental health › Fibromyalgia and Chronic Fatigue Syndrome Research
- Health Sciences › Medicine › Neurology › Long-Term Effects of COVID-19
- Keywords
- postural orthostatic tachycardia syndrome, chronic fatigue syndrome, functional disability, autonomic dysfunction, symptom burden, fatigue, sleepiness, disability, time to diagnosis, beta-blockers, treatment patterns, quality of life, young women
- MeSH terms
- Adult, Cross-Sectional Studies, Female, United Kingdom, Humans, Postural Orthostatic Tachycardia Syndrome, Young Adult
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