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The POTScast

Standing Up to POTS, Inc.

Learn about Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS) and more by joining us each week for a new episode. If you are living with POTS, MCAS or other chronic illnesses, you are not alone! Our goal is to raise awareness, nurture community, and empower patients with information and practical skills for living better with this chronic invisible illness.

Each month, we feature episodes with top POTS physicians as well as POTS patients. Because many POTS patients are eventually diagnosed with MCAS, the first Tuesday of every month we feature a new series called Mast Cell Matters, in which top MCAS practitioners share their experiences in better treating patients. You can learn more by listening to our groundbreaking POTScast anywhere, anytime. Visit our website at www.standinguptopots.org and follow our social media accounts @standinguptopots.

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  • 33 episodes
  • weekly
  • Avg 44 min
  • English

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Episodes 33

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  • October 31 · 42 min

    Live recordings from 13th annual 5k/2k fundraising event for POTS research

    This episode of the POTScast was recorded before our in-person 5K/2K event to raise funds for POTS research grants. POTS patients and their loved ones spoke with us to give an authentic glimpse of the ups and downs of living with a chronic illness like POTS. We are proud to serve this community, and touched by their stories.  Special thanks to our presenting sponsors, Normalyte, Thrivent, and Mike & Anne Patenaude.  Thanks to our generous donors and participants in these events and other fundrai

  • October 28 · 48 min

    Dr. Tania Dempsey answers more listener questions in Mast Cell Matters

    Dr. Dempsey, one of the world's leading experts on MCAS and associated conditions, answers listener questions about exercise as a mast cell trigger, the underlying causes of MCAS, treatments like Xolair, Amlexanox, Ketamine and antihistamines, estrogen replacement, her favorite novel therapies and much more.  If you have questions for Dr. Dempsey about mast cells and related topics, you can send them to research@standinguptopots.org. Dr. Dempsey's website is https://drtaniadempsey.com/ If you li

  • S4 · E278
    October 20 · 56 min

    Jessica’s medical-legal battle since her COVID shot

    Jessica was a kindergarten teacher with three advanced degrees, two young children, a husband, and busy life before COVID, despite having POTS, which she managed with salt, fluids and compression.  But soon after her second COVID shot she experienced a series of new symptoms, diagnoses, and disappointments in the systems she thought would be there to help.  Jessica recounts her (sometimes harrowing) odyssey to get medical help and disability insurance, and shares what she wishes she'd known soon

  • October 12 · 43 min

    POTS triggered by physical trauma associated with greater symptom severity with Dr. Cathy Pederson

    In this episode Dr. Cathy Pederson shares her latest published findings from a POTS patient survey looking at the relationship between POTS triggers -- such as infection, physical trauma, hormonal shift -- and symptom profile/severity.  Her findings, showing that POTS triggered by physical trauma was associated with more severe GI and overall symptom severity, can be downloaded here, in the Journal of Health Science and Education. Please click the "subscribe" button so that you don't miss an epi

  • October 4 · 27 min

    Madeline on creating the POTSie app to help manage POTS

    In this episode, Madeline shares her experience of living with POTS, from diagnosis to the daily routines that helped her improve over time. She talks about how exhausting it can be to live with a condition that often feels like a full-time job, and how creating simple systems made her POTS more manageable. That experience led her to build POTSie, a mobile app created to help others reduce the mental load of living with POTS and make daily life a little easier.  You can find her app at https://p

  • September 29 · 53 min

    Robert Groysman, MD on identifying mechanisms driving long COVID with the Trigger-Timing Framework

    After successfully treating his own Long COVID, founding the COVID Institute, treating hundreds of patients, and publishing the seven-volume Complete Long COVID Handbook series, Dr. Robert Groysman has published a peer-reviewed article in Frontiers in Medicine proposing a new way to understand Long COVID as a “network disorder.”  In this episode, Dr. Groysman explains his mechanism-anchored model, in which six primary biological domains can interact with one another, amplify symptoms, and produc

  • September 20 · 50 min

    Dr. David Kaufman & Paddy Monahan on Vindara Health for Complex Patients

    Vindara Health is the new telehealth specialty clinic created by Dr. David Kaufman and Paddy Monahan, to improve access to expert care for patients with the most complex conditions, including POTS, long COVID, ME/CFS, MCAS, autoimmunity, Lyme, fibromyalgia and more.  In this episode they discuss how it works, why they were inspired to create a new model, why they think there is increasing complex chronic illness, why working within the standard medical system is so limiting when treating complex

  • September 13 · 53 min

    Campaign against synthetic fragrances with Attorney Scott Cole and Dr. Tania Dempsey

    In this episode, we explore the legal and civil rights issues surrounding chemical and fragrance intolerance, including what happens when people are unable to safely access hotels, businesses, and other public spaces that use synthetic fragrances in their air systems and cleaning (or other) products. Our guest is Scott Cole, founder of Cole & Van Note, a law firm with more than 30 years of experience in civil rights, consumer, and class action litigation. Scott and his firm are leading a legal e

  • September 7 · 36 min

    Michelle co-founded CANrise19 to help Canada’s COVID vaccine injured

    Michelle was a busy mom, business owner and back country adventurer whose life changed dramatically in the 36 hours following her second COVID shot.  After finding little help locally in Canada, she traveled to the US for visits with leading specialists in dysautonomia, MCAS, small fiber neuropathy and more.  She recounts some of the treatments she has had -- including IVIg, EBOO, and even brain surgery -- and challenges encountered.  She ultimately co-founded CANrise19.com, a non-profit to brin

  • August 30 · 48 min

    Four Insights for Providers with Dr. Kirti Sivakoti, MD

    Pediatric dysautonomia expert Dr. Kirti Sivakoti, MD, is a pediatrician specializing in complex chronic illness, Associate Professor of Pediatrics at University of Utah, and Associate Medical Director of the Pain and Autonomic Symptoms Evaluation (PAUSE) Program at Primary Children's Center.  In this episode she shares findings and lessons from one case report and 3 recent research publications: Impact of Excessive Postural Tachycardia on Disability in Youth with Orthostatic Intolerance, in Jour

  • August 23 · 44 min

    When “Inactive” Ingredients Aren’t: The ICU stay that inspired ExciIQ, with Nicole & Jeff Allen and Mike Brook

    For patients with medication hypersensitivities, figuring out exactly what is in a medication can be surprisingly difficult. In episode 247 of The POTScast, data scientist Mike Brook discussed research showing that the excipient, or “inactive ingredient,” lists in DailyMed drug labels were internally inconsistent in 39% of 100 commonly prescribed drug formulations examined. For patients who react to excipients and rely on these labels to choose safer formulations, inaccurate, conflicting or conf

  • August 15 · 33 min

    Lyme disease and MCAS Q&A with Dr. Tania Dempsey as part of Mast Cell Matters series

    In this episode Dr. Dempsey answers listener questions about Lyme disease, sharing why it can be complex, her treatment approach at different stages, how she starts treatment on highly reactive MCAS patients, thoughts on the new Lyme vaccine, SOT therapy and more.  Dr. Dempsey's episode discussing SOT therapy in more depth can be found here. Dr. Dempsey's website is https://drtaniadempsey.com/ If you have questions for Dr. Dempsey about mast cells and related topics, you can send them to researc

  • August 8 · 39 min

    Emily on her daughter’s 20-year medical Odyssey, faith, EWOT and more

    Emily's daughter had sensitivities since a very young age.  Emily recounts their journey with mysterious symptoms, good and bad medical encounters, conventional and unconventional treatments, faith and prayer, an unfortunate drug reaction, progress and setbacks, and how her family has coped through it all.   Here are the links for the mentioned RTHM Intelligence platform and the Long COVID Treatment Guide. If you liked this episode, we hope you will click subscribe so that you don't miss an epis

  • August 2 · 37 min

    Founder Austin Walker on Building the AI Layer for Chronic Illness

    Austin Walker sold his last company in 2020, then got COVID and never recovered. He spent 9 months bedridden, saw 20+ doctors who all dismissed it as stress. He eventually got better by joining online patient communities, collecting what was working from other people, and running self-experiments on himself.That experience turned him into a patient trying to solve this for complex chronic illness, and he's been working on turning what he learned into a product:  Atlas. In this episode he shares

  • July 28 · 1 hr 7 min

    Connecting the Dots in Long COVID with Dr. Robert Groysman

    After successfully treating his own Long COVID, founding the COVID Institute, treating hundreds of patients, and publishing the seven-volume Complete Long COVID Handbook series, Dr. Robert Groysman has published a peer-reviewed article in Frontiers in Medicine proposing a new way to understand Long COVID as a “network disorder.” In this episode, Dr. Groysman explains his mechanism-anchored model, in which six primary biological domains can interact with one another, amplify symptoms, and produce

  • July 21 · 1 hr 8 min

    Tiffany Hoke DNP, Complex neurovascular patient turned expert helping others

    Tiffany, a Doctor of Nursing Practice (with 6 other nursing/neurological credentials), relates her epic journey to uncover her own - and her family history of - neurovascular, neurometabolic and genetic issues contributing to her POTS and many other symptoms.  After multiple discoveries, surgeries, stents, dietary and lifestyle modifications Tiffany reports being again functional, happy, relatively pain-free, and pursing her passion to continue gaining expertise in neurovascular and neurometabol

  • July 12 · 49 min

    Endometriosis with Dr. Tania Dempsey as part of the Mast Cell Matters series

    Is endometriosis related to mast cells, MCAS and POTS in some people?  Dr. Dempsey explains why she suspects a link, how fertility, insulin resistance and pelvic congestion syndrome may also be involved, the mast cell targeted treatments she has seen help, and much more.  Dr. Dempsey's article that is mentioned: Successful mast-cell-targeted treatment of chronic dyspareunia, vaginitis, and dysfunctional uterine bleeding Dr. Dempsey's website is https://drtaniadempsey.com/ If you have questions f

  • July 4 · 42 min

    Debra Hawkins, DNP, dysautonomia specialist with ER experience

    Dr. Debra Hawkins, DNP, is an advanced practice nurse and cardiology provider at Cardiovascular Health Clinics in Oklahoma specializing in POTS and autonomic dysfunction.  She brings a unique perspective -- from initially overlooking these conditions in the ER to becoming a dedicated advocate for this patient population as a provider. She combines personal insight with clinical guidance, including first-line treatment approaches, the importance of addressing underlying conditions, and how patien

  • June 30 · 41 min

    Nicole, The Autonomic Coach and news reporter from Hawaii

    Nicole is a live morning news reporter (on her feet from 1am to 9am!) and horse lover in Hawaii who has dealt with type 1 diabetes, cyclic vomiting syndrome, POTS and more.  In this episode Nicole describes her journey and how she is using her communication skills to help patients as 'The Autonomic Coach' and to help educate about dysautonomia, including speaking to healthcare practitioners earning their CME credits.    If you liked this episode, we hope you will click subscribe so that you don'

  • June 21 · 37 min

    Dr. Kamal Chemali on Music and Medicine

    Dr. Kamal Chemali is an autonomic neurologist, Professor of Medicine and Director of the Autonomic Nervous system Program at Case Western Reserve University. He started studying the piano at age seven and today is a conservatory-trained pianist who still performs. Dr. Chémali’s firm belief in the power of music in connecting people and in healing disease led him to start the Doctor-Patient Music Connection Program, where physicians and musicians perform for patients in the hospital, and also the

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