The POTScast

Standing Up to POTS, Inc.
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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. 1 DAY AGO

    Elli (from ep 65) on new diagnoses and MALS surgery

    Elli from episode 65 is back to share what she wishes she'd known sooner after her 2-year ordeal that eventually resulted in several new diagnoses and surgery for MALS (median arcuate ligament syndrome).  You can find Elli on most social media at potsie.life. 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.

    18 min

  2. 19 APR

    The Long COVID Treatment Guide with Jen Curtin, MD and Charlie McCone

    Dr. Jen Curtin is the Medical Director and Co-founder of RTHM Clinic, which specializes in complex chronic conditions via their clinic, telemedicine services, Intelligence platform, medication access program and other innovative services. She is also a former complex chronic illness patient herself.  Charlie McCone is a San Francisco based Long Covid patient advocate and non-profit professional with a background in marketing, communications, fundraising, and organizing. He has worked in the fields of HIV/AIDS, environmental and urban planning, and political campaigns. He is a member of the Patient-Led Research Collaborative and his Long Covid advocacy efforts have been featured in the Washington Post, The Atlantic, TIME and PBS. He has also written pieces featured in The Guardian, San Francisco Chronicle, and STAT News.  Together their teams have brought us the Long COVID Treatment Guide, which summarizes efficacy findings on 18 drugs, 5 supplements, 4 lifestyle approaches and 2 Medical procedures that were studied by the Harvard/Stanford TREATME project, patient surveys or other studies of treatments for Long COVID.  The idea behind the Guide is to facilitate conversations between patients and practitioners about pototential Long COVID treatments, while we wait for larger, more robust studies to come.  Dr. Curtin and Charlie also give updates on other exciting projects in the works at their organizations. 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.

    54 min

  3. 14 APR

    Aryn on athletics, adapting and advocating for oneself

    Aryn was a serious college athlete when her POTS developed, and in this episode she shares how she has adapted and how despite having world class cardiology care for her symptoms, her diagnosis would have been missed if it hadn't been for another POTS patient recognizing her symptoms and then Aryn's specifically asking for a tilt table test. 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.

    40 min

  4. 7 APR

    Attorney Krysti Monaco on winning children's social security benefits

    Krysti Monaco helps families apply for disability benefits when their children are too disabled to work.  In this episode she describes the available programs, application process, challenges, pitfalls, important deadlines and more.  Krysti's law firm offers free consultations, daily YouTube videos, a free podcast and their website 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.

    39 min

  5. 1 APR

    Cell membrane health with Dr. Melanie Stein on Mast Cell Matters with Dr. Tania Dempsey

    Dr. Melanie Stein, ND is a licensed Naturopathic Physician in Portland, Oregon and a recognized leader in Cell Membrane Therapy for the treatment of complex and chronic illness. She specializes in restoring health at the cellular level—repairing and revitalizing cell membranes to improve energy production, enhance detoxification, and restore healthy communication between cells. In this episode, she and Dr. Dempsey discuss why cell membrane health is relevant to MCAS and many other chronic illnesses, testing and treatment approaches, their favorite in-office treatments, diet considerations and much more. Dr. Stein's clinic's website is here. Dr. Stein's book, Breaking Through Chronic Illness, is here on Amazon. Dr. Tania Dempsey's website 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.

    52 min

  6. 22 MAR

    Elizabeth on her comeback and book: The Toll it Took

    Elizabeth was a teen athlete when she first became bed bound with POTS and several other conditions including narcolepsy, epilepsy and gastroparesis.  After 5 years of struggling to be heard or helped, and wondering if the struggle was worth it, she is now back in school, working full time, and becoming the kind of healthcare professional she wishes she'd had.  AND she has written a book -- The Toll it Took -- about her experiences!  Her advice:  "Even if you don't feel like it, keep going." 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.

    35 min

  7. 17 MAR

    Excessive sleep, fatigue and insomnia in POTS WITH Dr. Kirti Sivakoti

    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 discusses sleep issues commonly seen in POTS, such as excessive fatigue, sleepiness, hypersomnia, insomnia, and interesting findings seen in sleep studies of POTS patients.  Dr. Sivakoti explains what can be tried at home (e.g., lifestyle strategies), medications that may help, and when a sleep study may be warranted.  As always, Dr. Sivakoti is a wealth of information and compassion. The mentioned review of sleep disorders in POTS (Miglis and Barwick, 2018) is here. More information about Dr. Sivakoti and her practice is here.

    45 min

  8. 7 MAR

    Julie on the lengths she had to go to for recovery

    Julie's recovery from POTS and other serious conditions involved an epic tale of sheer determination, next-level advocacy, some unconventional treatments (which we are not endorsing: talk to YOUR doctor about what is right for you), a lot of internet research, traveling across the country to see a doctor with availability, and even winning a related lawsuit in the meantime.  She discusses how she ultimately got treatment with 4 stents for her venous compressions, and how that has made a big difference. 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.

    45 min
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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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