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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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  • 26 episodes
  • weekly
  • Avg 43 min
  • English

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Episodes 26

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  • 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

  • June 16 · 43 min

    Moon and Mood: Tracking and managing hormone shifts with Krista Day-Gloe, LCSW

    Krista Day-Gloe is a licensed clinical social worker and therapist who focuses on the mind–body connection. She’s the author of Mood & Moon: A Body-Led Guide to Understanding Cycling Bodies, a practical guide and tracking workbook that helps people connect hormonal shifts with mood, energy, sleep, digestion, and nervous system states—so they can recognize patterns and build supportive routines through each phase of the cycle.  In this episode she shares practical information about understanding,

  • June 7 · 33 min

    Tinsley on law school, a dream job, marriage, and making it work with severe POTS

    Tinsley has had POTS symptoms during two different stages of her life.  First at 16, in response to a severe allergic reaction to her braces, which went into remission when she had them removed; and second, during college, when she suddenly began having 15+ convulsive episodes per day with other debilitating symptoms.  And yet, she graduated college and law school, worked her dream job, got married and has a very full life.  In this episode she discusses her journey and how she's managed her POT

  • May 30 · 41 min

    Dr. Tania Dempsey on GLP-1s for MCAS, POTS and related conditions

    This is a not-to-be-missed episode!  Dr. Dempsey discusses the use of GLP-1 medications for MCAS, including her most recent observations and recommendations.  This is a follow-up to Dr. Dempsey's free online GLP-1 Masterclass, which covers all the basics.  If you have questions for Dr. Dempsey about mast cells and related topics, you can send them to research@standinguptopots.org. Dr. Dempsey's published article about GLP-1 treatments in MCAS is here. Dr. Dempsey's website is https://drtaniademp

  • May 26 · 1 hr

    A happy ending after surgeries, stenting, & a renal auto-transplant - with Simone Erdner, PhD

    Simone was a professor of sport psychology enjoying a trip through Mexico when symptoms became too serious to ignore.  POTS was just one of many symptoms (many were gynecological) and she ultimately learned she had multiple compression syndromes including May Thurner Syndrome, for which she received a stent, and Nutrcracker Syndrome, for which she underwent a renal autotransplant surgery to move her kidney.  After 7 surgeries in 2 years, Simone feels she got her life back, and has created The Nu

  • May 18 · 59 min

    All about IV Infusions with Betsy Harmon, RN, CRNI, CPUI, VA-BC

    Betsy Harmon, RN, CRNI, CPUI, VA-BC has been an infusion nurse for over 20 years and runs the Alaska Infusion Center in Anchorage, Alaska, where she oversees and administers all types of infusions to a wide variety of patients.  In this episode she shares the many factors that go into safe and effective infusions, what infusion nurses are looking for and thinking about as they care for infusion patients, what patients can do to help infusions go more easily, and answers listener questions about

  • May 10 · 29 min

    Diaries with Amy on horses, family fun, and spending over half her life with POTS

    Amy is a mom and equestrian from North Carolina who has now spent over half her life with POTS.  In this episode she shares how she finished high school (early), has enjoyed horses throughout periods of being able to ride or not being able to ride, her favorite POTSy activities, her TikTok videos (see them on TikTok at @amymarieeee00), her favorite quick meal, and so much more.   If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, d

  • May 2 · 37 min

    Dr. Sally Daganzo on eating disorders, physical drivers of mental health and more

    Dr. Sally Daganzo is a board-certified internal medicine physician with advanced training in psychiatry, eating disorders and functional medicine. She has a private practice in San Rafael California and also offers telemedicine in several states.  In this episode she discusses her approach to treating complex patients, the mental-physical health intersection, eating disorders and what made her decide to start her own clinic, whose website is https://www.sallydaganzomd.com/ If you liked this epis

Showing 1–20 of 26 episodes