Dr. Marie-Claire Seeley on POTS, EDS & Changing the Future of Care

Dr. Marie-Claire Seeley on POTS, EDS & Changing the Future of Care

Dr. Marie-Claire Seeley is a registered nurse, researcher, Founder and Volunteer CEO of the Australian POTS Foundation, and one of the leading voices advancing POTS research, education, and advocacy. In this episode of Let's Talk About the POTS Life, Kelsey sits down with Dr. Seeley to discuss her journey from developing POTS after a post-viral illness in 1993 to helping change the future of care for people living with POTS and dysautonomia around the world. Together, they discuss: * Dr. Seeley's personal journey with POTS * Why so many patients are dismissed or misdiagnosed * The connection between POTS, Ehlers-Danlos syndrome (EDS), and hypermobility * Why women with POTS often face unique challenges in healthcare * Why we're experiencing an "epidemic of recognition," not an epidemic of POTS * The future of POTS research, advocacy, and patient care Whether you're newly diagnosed or have been living with POTS for years, this conversation offers insight, validation, and hope from someone who understands the condition from every perspective as a patient, clinician, researcher, and advocate. Learn more about the Australian POTS Foundation: https://potsfoundation.org.au [https://potsfoundation.org.au] Connect with Us: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Our Website⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://thepotslife.com/] Facebook: The POTS Life Instagram: @thepotslife_ Tik Tok: thepotslife

Learning to Trust Your Body Again with POTS

How do you start trusting your body again after a POTS diagnosis? In this episode, Kelsey and Brit talk about the fear of doing everyday activities when your symptoms feel unpredictable. From weddings and travel to summer events and driving, they discuss practical ways to prepare, pace yourself, and build confidence as your body changes and improves. They also dive into the connection between POTS and anxiety, why progress isn't always linear, and how small wins can help you regain trust in yourself over time. Whether you're newly diagnosed or further along in your journey, this episode is a reminder that fear doesn't have to make the decisions. Connect with Us: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Our Website⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://thepotslife.com/] Facebook: The POTS Life Instagram: @thepotslife_ Tik Tok: thepotslife

POTS, EDS & Hypermobility: What Patients and Parents Need to Know with Dr. Cohen Solomon

What is the connection between POTS, hypermobile Ehlers-Danlos syndrome (hEDS), and hypermobility? In this episode, I sit down with Dr. Cohen Solomon, board-certified pediatrician, educator, and patient living with hEDS and dysautonomia. We discuss the overlap between POTS, EDS, chronic pain, fatigue, GI symptoms, and why so many patients struggle to find answers. We also talk about recognizing early signs of hypermobility, building the right healthcare team, advocating for yourself, and why validation matters when living with a complex chronic illness. Whether you're a patient, parent, or healthcare provider, this episode offers practical insights and hope for navigating the journey. Follow Dr. Solomon: @thebendypediatrician Learn More: https://thebendypediatrician.com/ [https://thebendypediatrician.com/] Connect with Us: ⁠⁠⁠⁠⁠⁠⁠⁠⁠Our Website⁠⁠⁠⁠⁠⁠⁠⁠⁠ [https://thepotslife.com/] Facebook: The POTS Life Instagram: @thepotslife_ Tik Tok: thepotslife Timestamps * 00:00 Introduction * 03:16 Living with hEDS & Dysautonomia * 05:43 Early Signs of Hypermobility in Children * 10:36 Understanding EDS & Hypermobility * 12:14 Pain, Fatigue & Invisible Illness * 22:32 The Connection Between POTS & EDS * 23:22 Why Patients Need a Healthcare "Quarterback" * 28:58 GI Symptoms, Dysmotility & EDS * 31:51 The Importance of Validation * 33:51 Building the Right Care Team * 36:33 Tips for Advocating for Yourself * 41:40 The UVA EDS & Hypermobility Clinic * 46:05 Advice for Newly Diagnosed Patients * 47:20 Finding Hope

POTS, Advocacy, and The Dysautonomia Workbook with Joanna Behm

In this episode of Let’s Talk About The POTS Life, we sit down with Joanna Behm, occupational therapist, dysautonomia advocate, and co-author of The Dysautonomia Workbook. Joanna shares her personal journey to diagnosis, the challenges of living with POTS, MCAS, and hEDS, and the work she does through the Dysautonomia Support Network (DSN) to help others feel more supported and informed. We also talk about practical tools for managing daily life with dysautonomia, including pacing, symptom tracking, accommodations, mental health, and building a better quality of life while navigating chronic illness. About DSN: Dysautonomia Support Network is a nonprofit dedicated to supporting and empowering those with dysautonomia through education, resources, and community. Learn more at dysautonomiasupport.org. Workbook: The Dysautonomia Workbook: A Guide to Empowered Living https://www.dysautonomiasupport.org/product/the-dysautonomia-workbook-a-guide-to-empowered-living/ [https://www.dysautonomiasupport.org/product/the-dysautonomia-workbook-a-guide-to-empowered-living/] Follow DSN: Instagram: @dyssupport [https://www.instagram.com/dyssupport/] YouTube: @DysSupport [www.youtube.com/@DysSupport] Facebook: Dysautonomia Support Network [https://www.facebook.com/DysautonomiaSupportNetwork] Connect with Joanna: LinkedIn: Joanna Behm [https://www.linkedin.com/in/joannabehm]

What to Do After a POTS Diagnosis (Electrolytes, Exercise, and Common Mistakes)

If you’ve recently been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome), it can feel overwhelming figuring out what actually helps. In this episode, we break down what to focus on early and what to avoid. We talk through common mistakes after a POTS diagnosis, including over-relying on water without enough sodium, falling for “electrolyte” products that don’t contain meaningful salt, and making drastic diet changes too quickly. We explain how to approach hydration and electrolytes more effectively, including why sodium matters and how to start building tolerance. We also cover nutrition myths, why cutting multiple foods at once can backfire, and how to use simple tracking to identify real triggers. On the movement side, we walk through why exercise is still important with POTS and how to approach it in a low, slow, and sustainable way to avoid worsening symptoms. If you’re feeling stuck, overwhelmed, or unsure where to start, this episode will help you take your next step with more clarity. Timestamps: 00:00 What to do after a POTS diagnosis 01:20 Common mistakes early on 02:45 Electrolytes vs water (what actually helps) 04:50 How much sodium you need 07:10 Choosing the right electrolyte options 09:20 Why cutting foods too quickly backfires 10:20 How to track food triggers 12:00 MCAS + food sensitivities 14:20 Salt myths explained 15:30 Why movement matters with POTS 17:00 How to start exercise safely 19:00 Support, structure, and community 21:30 Final thoughts + next steps Connect with Us: ⁠⁠⁠⁠⁠⁠⁠⁠Our Website⁠⁠⁠⁠⁠⁠⁠⁠ [https://thepotslife.com/] Facebook: The POTS Life Instagram: @thepotslife_ Tik Tok: thepotslife