InitialConditions
Senior Member (Voting Rights)
Abstract
Background
Postural orthostatic tachycardia syndrome (POTS) is a chronic autonomic disorder associated with debilitating symptoms. No medications have been approved for treatment, and patients commonly use off-label medications to treat symptoms. The hemodynamic implications of certain medication use have been examined, but patient experiences with taking off-label medications are underreported.Methods
A qualitative descriptive study was conducted with 13 patients (all women; aged 38 ± 13 years) diagnosed with POTS who had taken off-label medications for their symptoms. Semistructured video interviews were conducted to explore how they experienced and perceived their medication use. Interviews were recorded, transcribed, and analyzed using conventional content analysis.Results
Most patients described medications as being beneficial and life-altering, re-enabling basic activities, work, exercise, and social engagement. All patients intended to continue therapy. Side effects were common but generally manageable. Propranolol frequently was associated with fatigue and hypotension. Ivabradine often caused transient early headaches and visual symptoms that subsided. Dosing frequency was largely acceptable. Major barriers included the following: medication cost, especially for ivabradine when patients were not insured; limited clinician awareness of POTS; diagnostic delays; and uncertainty about long-term safety.Conclusions
Medications provide meaningful functional improvement for many patients, but treatment burden, financial barriers, and information gaps persist. Care should prioritize individualized, patient-centred prescribing, and shared decision-making. Additional research should compare common medications to increase exposure and evaluate long-term outcomes and access.LINK
