Episode 121: Dysautonomia Explained: POTS, Diagnosis, & Treatment with Lauren Stiles

Have you ever felt like your body was working against you? Like your heart was racing, your brain was foggy, and you just couldn't seem to catch your breath?In this episode, Dr. Kara Wada welcomes back her friend and guest, Lauren Stiles, JD, President of Dysautonomia International and a research assistant professor of neurology at Stony Brook University School of Medicine. Lauren shares her personal journey with POTS, a form of dysautonomia, and discusses the challenges of diagnosis and treatment. She explains the complexities of the autonomic nervous system and why our current testing methods are limited in diagnosing dysautonomia. Dr. Kara and Lauren delve into the need for holistic approaches to manage these conditions, emphasizing the importance of anti-inflammatory diets and lifestyle changes. Lauren highlights the crucial role of patient advocacy and research in advancing understanding and treatment options for dysautonomia. They discuss the obstacles faced by researchers and clinicians in studying and treating these conditions and emphasize the need for more funding and support.EPISODE IN A GLANCE00:53 Lauren's Journey with Dysautonomia and POTS03:06 Understanding Dysautonomia and its different forms05:03 Common dysautonomia types like neurocardiogenic syncope (vasovagal) and POTS07:08 Limitations in diagnostic testing and the need for better biomarkers08:47 The missing pieces of autonomic nervous system testing13:29 The role of patient empowerment and holistic approaches to managing dysautonomia20:24 Dysautonomia International's mission and initiatives: education, research, and advocacy26:44 The challenges faced by researchers and clinicians in studying and treating dysautonomia30:57 Changing Minds and Confronting Medical Gaslighting37:07 How to Get Involved and Support Dysautonomia InternationalABOUT LAUREN STILES, JDLauren Stiles is a passionate advocate for individuals living with autonomic disorders. She serves as President of Dysautonomia International, a leading organization dedicated to supporting and empowering patients, while also holding a position as Research Assistant Professor of Neurology at Stony Brook University School of Medicine. Lauren's personal journey with POTS began at age 31, sparking a relentless pursuit of answers and ultimately leading her to a diagnosis of autonomic neuropathy caused by Sjogren's Syndrome. This experience ignited her commitment to raising awareness, improving research, and advocating for better healthcare for those impacted by autonomic disorders. A graduate of Stony Brook University and Pace University School of Law, Lauren brings a wealth of experience in both science and law to her work. She has served in leadership positions on numerous government councils, non-profit boards, and professional associations, utilizing her expertise to drive positive change. Lauren finds joy in her life on Long Island with her husband, her beloved Jack Russell Terrier, and a flock of six amusing chickens.CONNECT WITH LAUREN STILES, JD & Dysautonomia InternationalWebsite → https://dysautonomiainternational.org/ LinkedIn → https://www.linkedin.com/company/dysautonomia-international/ Instagram → https://instagram.com/DysautonomiaIntl X/Twitter → https://x.com/Dysautonomia Facebook → https://www.facebook.com/DysautonomiaInternational/ ABOUT DR KARA WADAQuadruple board-certified pediatric and adult allergy immunology & lifestyle medicine physician, Sjogren’s pa