Tasmin

I’m Tasmin, 30, from South West England and I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS) at 18.

My symptoms began after a facial cellulitis infection and surgeries. I received a diagnosis quite promptly through my GP and PoTS-aware specialist. I had various tests, such as tilt-table testing and cardiac monitoring. I know many people wait years, and that’s one reason I want to raise awareness.

My PoTS is complicated with fluctuating blood pressure, which makes medication difficult and leaves fewer treatment options. Over the years I’ve managed tachycardia, blood pooling, presyncope, dizziness, palpitations, temperature issues, mobility challenges and fatigue. I am an ambulatory wheelchair user on days where safety, balance or stamina are affected and I follow adapted exercise plans like the Levine Protocol along with recommendations from Actively Autoimmune (Zoe) who I’ve had advice from in the past.

Daily life with PoTS involves constant adjustment – pacing, hydration, smaller meals, avoiding overhead movement, gentle exercise and learning when to ask for help. My symptoms fluctuate daily. Each person’s management looks different, that’s why understanding and flexibility from others matters.

I’m sharing my story because people with PoTS associated with fluctuating blood pressure are a smaller, less researched group and that makes treatment options more complex. More research, awareness and compassion are essential for improving treatment for everyone living with PoTS.

Despite the challenges, I’ve rebuilt a meaningful life with creativity, music, supportive friendships, adaptive exercise and a kinder relationship with my body. Attending a PoTS UK event showed me the power of community and I hope my voice helps others feel seen and reminds everyone that those who experience PoTS have real symptoms, often with complexity, and we deserve understanding and research.

Together, we can raise awareness, deepen understanding, and advocate for better care for all PoTS patients.