The POTScast

Standing Up to POTS, Inc.
  • 4.8 (116)
  • Medicine
  • Updated Biweekly

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.

  1. 2d ago

    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 effort challenging the widespread practice of pumping synthetic fragrance into public buildings—an issue that can make these spaces difficult or impossible to access for people with chemical or fragrance sensitivities, including many patients living with conditions such as POTS and MCAS. In this conversation, Scott explains his firm’s current investigation and litigation against major hotel chains and other businesses using synthetic fragrances, why fragrance accessibility may be a civil rights issue, and what patients and advocates need to know as this area of law develops. Dr. Tania Dempsey shares how synthetic fragrances can be toxic even to those who don't feel symptoms from them, and how MCAS flares initiated by fragrance exposures may last for weeks or months.  She also shares statistics showing that fragrance intolerance is not rare. Anyone interested in participating in the law firm's campaign against fragrances can learn more or submit their information here. Attorney Scott Cole's book, Fallout, can be found here. If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X/Twitter: https://twitter.com/POTSActivist  Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

  2. Sep 7

    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 bring support, awareness and fellowship to other patients in her situation. Michelle will be testifying at the Allison Inquiry.On September 8, 9, 10 and 11, 2026, the Allison Inquiry will be listening to the testimony of Canadians injured by a Covid-19 vaccine. The Inquiry will be broadcast live from Parliament Hill in Ottawa. The Allison Inquiry represents the first time that Canadian lawmakers will be listening to Canadians about their experiences with the Covid-19 vaccines. If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist  Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

  3. Aug 30

    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 Journal of Pediatrics - In this study, they found that functional disability was the same between patients with chronic orthostatic intolerance, regardless of whether their heart rate increase on the tilt table test or active stand test met the POTS criteria of 40+bpm.   Autonomic Dysfunction and Postural Orthostatic Tachycardia Syndrome: What Every Frontline Clinician Needs to Know:  - this article educates frontline clinicians on how to recognize POTS and initiate treatment, what other diagnoses to rule out and when a referral to specialists is appropriate.  It is intended to help PCPs and other frontline clinicians learn to manage POTS to reduce delays in care. Parent-Child agreement on functional disability in chronic orthostatic intolerance .  In this study, parents and children had a high correlation of rating of the child's functional disability, suggesting that that they are largely interchangeable for clinical or research purposes. More information about Dr. Sivakoti and her practice is here. If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/ Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

  4. Aug 23

    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 confusing  information can have serious consequences. Today we continue that conversation with Mike, along with Nicole and Jeff Allen.  Nicole is a nurse who has MCAS and reacts to several excipients. Jeff brings 25 years of experience as a data solutions architect working with medical and pharmacy claims.  Their motivation to solve this problem is deeply personal. After Nicole experienced repeated severe reactions to a medication excipient that landed her in the ICU for 6 days, Jeff set out to understand the problem and then build a better solution:  ExciIQ. Together, they discuss the real-world challenges facing excipient-sensitive patients, why current drug-labeling data can make avoiding a known trigger so difficult, and how ExciIQ hopes to help patients and healthcare professionals have better options for avoiding problematic excipients in their medications. Learn more: ExciIQ: exciiq.com Previous POTScast episode: Drug Excipients and Label Inconsistencies with Data Scientist Mike Brook Published research: Inconsistent excipient listings in DailyMed: implications for drug safety If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

  5. Aug 15

    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 research@standinguptopots.org. If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

  6. Aug 8

    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 episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

  7. Aug 2

    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 his story of getting sick, learning our health care system isn't designed for complex patients, finding his path back to being largely better again, and now being back to work as a founder creating Atlas.   Website:  https://theatlasnetwork.ai/ Link to signup: https://chat.theatlasnetwork.ai/ Link to the Atlas Discord: https://discord.gg/YPFgKJAMke If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

  8. Jul 28

    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 very different clinical presentations from patient to patient. The six primary domains include dysautonomia/POTS, mitochondrial and bioenergetic dysfunction, endothelial and microvascular dysfunction, gut dysbiosis and barrier disruption, mast cell activation/histamine-mediated signaling, and neuroendocrine/hormonal dysregulation. Secondary amplifiers may include persistent immune activation, viral antigen persistence, autoantibody formation, neuroinflammation, sleep-related destabilization, and small fiber neuropathy. Dr. Groysman discusses how this network model may help patients and clinicians move beyond symptom labels and toward more individualized, mechanism-informed evaluation and treatment strategies for Long COVID and related complex chronic presentations  Dr. Groysman also offers an online community for patients to ask questions and have discussions with him (and other members) at https://www.longcovidfamily.com/ If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist  Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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4.8
out of 5
116 Ratings

About

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.

Information

  • Creator
    Standing Up to POTS, Inc.
  • Years Active
    2021 - 2026
  • Episodes
    250
  • Rating
    Clean
  • Copyright
    © 2021
  • Show Website
    The POTScast

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