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The POTScast

The POTScast

257 episodes — Page 1 of 6

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

May 10, 202629 min

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

May 2, 202637 min

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

Apr 25, 202617 min

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

Apr 19, 202654 min

Aryn on athletics, adapting and advocating for oneself

Apr 14, 202639 min

Attorney Krysti Monaco on winning children's social security benefits

Apr 7, 202639 min

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 [email protected]! 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.

Apr 1, 202652 min

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 [email protected]! 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.

Mar 22, 202634 min

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.

Mar 17, 202644 min

Ep 299Julie 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 [email protected]! 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.

Mar 7, 202645 min

Dr. Dempsey’s cutting edge treatments (part 2) - Mast Cell Matters

Dr. Dempsey is always looking for new therapies that may help her complex patients. In this episode Dr. Dempsey discusses how she incorporates treatments with Methylene Blue, peptides, and the Nanovi breathing device. For each one she explains what it is, how it works, the risks and benefits, who is a good candidate, and more. More information about Dr. Tania Dempsey and her clinic can be found at https://drtaniadempsey.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 [email protected]! 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.

Mar 1, 202647 min

S4 Ep 262Maggie on being both patient and Mental Health Therapist

Maggie was 14 when she started passing out regularly, and she still does occasionally, but that didn't stop her from getting back to school, completing graduate work and becoming a Mental Health Therapist. Maggie shares how she helps others with invisible chronic illness and strategies she uses herself. Maggie also shares some statistics about living with disabilities and a recipe for cooking octopus! Maggie'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 [email protected]! 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.

Feb 25, 202636 min

S4 Ep 277The Dysautonomia Workbook with Joanna Behm, EDD OTR/L and Madison Thornton, OTD OTR/L

Joanna Behm, EDD OTR/L and Madison Thornton, OTD, OTR/L are experts in occupational therapy (OT) as therapists, dysautonomia patients, and Joanna is even a professor of OT. Together they created a workbook that first shares the latest evidence and then leads readers through a series of worksheets and questions to help them find their best OT-based solutions and routines for living better with dysautonomia and related challenges. In this episode they explain occupational therapy, the workbook, and share many examples of how patients can get the most from it, and from an OT mindset in general. The Dysautonomia Workbook is available here, and other handbooks and handouts created by Joanna and her team are available 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 [email protected]! 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.

Feb 17, 202637 min

Dr. Casey Kelley on Mast Cell Matters

Dr. Casey Kelley is Board Certified in family and integrative medicine, teaches on the faculty of the Northwestern Medical School, and her care is informed by her own past experience having complex chronic invisible illness. Now she treats some of the very toughest cases, including Lyme, POTS, PANS/PANDAS, MCAS and more. In this episode she and Dr. Dempsey discuss cutting-edge treatment approaches for these conditions in pediatric patients, and we highly recommend this episode for anyone wanting to hear the latest thinking in treatments for these young patients. Dr. Kelley's website is here. Dr. 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 [email protected]! 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/ 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 [email protected]! 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.

Feb 10, 202640 min

S4 Ep 284Sophie on life after severe COVID

Surviving severe COVID was just beginning of Sophie's health adventure. She discusses her unexpected COVID-related medical challenges, new job and living situation, the stenting procedure that helped (but not as much as hoped), how she has adjusted to her new situation and how it all has made her even better at her work in healthcare. 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 [email protected]! 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.

Feb 3, 202641 min

Attorney Nancy Cavey on disability benefits for POTS/dysautonomia

Attorney Nancy Cavey has spent 39 years representing people with disabilities all over the U.S., and is an expert in helping people qualify based on POTS, MCAS, hEDS and other invisible illness. In this episode she describes the process, how to maximize your chances of success, common pitfalls, important deadlines and more. We will have a part 2 with Nancy's colleague in a few weeks, to address disability benefits for people under age 18. Nancy's book about disability benefits for POTS is here. Nancy's website is here. Nancy has also written the following free e-books about: Long-Term Disability Books Robbed of Your Peace of Mind The Disability Insurance Claim Survival Guide for Professionals Social Security Disability Books Your Rights to Social Security Disability Medical Booklets / Pamphlets Postural Orthostatic Tachycardia Syndrome Booklet Dysautonomia Pamphlet 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 [email protected]! 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.

Jan 27, 202642 min

Singer-songwriter Nellie Clay on “the hangover without the party”

Western folk singer-songwriter Nellie has recorded multiple albums and EPs, toured nationally from Alaska to Nashville, appeared on PBS’s Songs at the Center, opened for Grammy-nominated artists, and become a beloved regular at the Woody Guthrie Folk Festival. Most recently, she was profiled in Forbes for her life as an artist living with postural orthostatic tachycardia syndrome, bringing huge mainstream attention to POTS in the process. In this episode she shares her thoughts, experiences and wisdom on living with POTS, adjusting to major life changes, staying strong, redefining oneself and much more. Nellie's article in Forbes is here. Nellie's "Freedom Song" music video is here. Nellie's music is available for purchase 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 [email protected]! 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.

Jan 20, 202644 min

Zac Spiritos, MD, MPH on neurogastroenterology with Dr. Tania Dempsey on Mast Cell Matters

Dr. Spiritos is double board certified in gastroenterologist and internal medicine, and specializes in IBS, gut motility, POTS and the complex conditions and symptoms that go along with it. He and Dr. Dempsey discuss IBS, parasites, SIBO, CD117 staining, GLP-1 drugs for MCAS, his treatment approach, some promising news on the awareness front, and much more. Dr. Spiritos's website is here Dr. 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 [email protected]! 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/

Jan 13, 20261h 2m

Vascular surgeons Robert Hacker and Deena Chihade on venous compressions, stenting, and POTS

Vascular surgeons Dr. Robert Hacker and Dr. Deena Chihade share their unusual path to POTS via looking at the venous system, and explain what they are seeing in patients before and after addressing venous compression syndromes such as May Thurner Syndrome and Nutcracker Syndrome. Dr. Hacker estimates that venous obstructions may play a role in more POTS patients than previously thought, and Dr. Chihade shares the research study she presented at the Dysautonomia International poster session. Both doctors explain how their clinic tests and treats patients for potential compressions and what the stenting procedure is like. Their website is https://stlvascular.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 [email protected]! 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. 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.

Jan 4, 202652 min

Genetic collagen disorders and vascular issues with Heather Perne, NP-C, CWS

Dec 30, 202542 min

Sarah from FL on life after COVID/POTS/MCAS

Sarah loved her life as a busy mom an accomplished professional dog groomer, but after COVID left her with new symptoms suggestive of the 'Trifecta' (POTS, MCAS, hEDS) she is needing to make a new game plan....one that doesn't involve so many hours of standing and triggering fragrances. In this episode she discusses what she went through to get a diagnosis and how -- with the help of supportive family -- she is working through the challenges to design a new lifestyle. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you! If you love The POTScast and would like to help defray the costs associated with creating these episodes, please donate at: https://www.standinguptopots.org/donate 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.

Dec 21, 202543 min

Dr. Dempsey on leading edge treatments she is finding helpful

One of the most common questions we get from listeners is about the novel treatments that Dr. Dempsey mentions, such as therapeutic plasmapheresis exchange (or apheresis), SOT, ozone therapy, UV light blood irradiation and more. In this episode she discusses each treatment: What it is, how it works, the risks and benefits, who is a good candidate, and more. More information about Dr. Tania Dempsey and her clinic can be found at https://drtaniadempsey.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 [email protected]! 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.

Dec 15, 20251h 4m

New (free) AI intelligence platform for patients with Dr. Jen Curtin

Dr. Jennifer Curtin is Medical Director of the RTHM clinic and former complex chronic illness patient herself, after having ME/CFS while in medical school. Now her team has created the RTHM intelligence platform which uses HIPAA-compliant artificial intelligence and other technology to provide guidance and care for people with Long COVID, ME/CFS, MCAS, POTS, hEDS and related conditions. In this episode she discusses the features, purpose, possibilities and how this free platform can help improve access to answers, insights, testing and treatment for patients with these complex conditions. if you would like to try the platform, it is free and 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 [email protected]! Find out more about Standimg 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.

Dec 9, 202551 min

S4 Ep 280Jace on health policy, why “being a burden is a blessing”, and much more

Jace had hEDS and POTS for years before it was diagnosed and then had to wait MORE years to start getting any treatment, but in the meantime graduated college, got an advanced degree, worked on state and federal health policy, made art and much more. Hear Jace's advice and words of wisdom as someone who has expertise when it comes to ADA and accommodations. 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 [email protected]! 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.

Dec 2, 202547 min

Ep 284Progress for the COVID vaccine injured with REACT19 Co-Chairman Brianne Dressen

Brianne Dressen co-founded REACT19 to help support people with life-altering COVID-19 vaccine injuries after being injured herself in one of the original clinical trials, and then learning the hard way that little was available in terms of answers, research, treatments or support. Now she oversees the science-based non-profit React19, which has created a provider network, support groups, research collaborations, lobbying efforts, and a grant program to help pay for medical bills of injured patients. The mentioned Yale studies are: 1. Comparative Analysis of Long COVID and Post-Vaccination Syndrome: A Cross-Sectional Study of Clinica Symptoms and Machine Learning-Based Differentiation 2. Immunological and Immunogenic Signatures Associated with Chronic Illness after COVID 19 Vaccination (Dr. Been's presentation explaining the findings is here). 3. Post-Vaccination Syndrome: A Descriptive Analysis of Reported Symptoms and Patient Experiences after COVID-19 Vaccination The book about Brianne is here. Brianne's documentary film is here. React19.org's YouTube channel with more educational videos by Dr. Been and more 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 [email protected]! 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.

Nov 25, 202543 min

Dr. Eboni Cornish on root causes of brain inflammation with Dr. Dempsey on Mast Cell Matters

This is a not-to-be-missed conversation for anyone interested in brain inflammation. Dr. Eboni Cornish, M.D. is Associate Medical Director at Amen Clinics, Fellow and Treasurer of the Board for the International Lyme and Associated Diseases Society (ILADS). With research training at the National Institutes of Health as a Howard Hughes Medical Fellow, she is nationally recognized for her evidence-based work in neuroinflammation, autism, chronic toxicity, and complex chronic illnesses, including autoimmune disease, Lyme, PANS/PANDAS, mold illness, CIRS, and long COVID among others. At Amen Clinics, she integrates SPECT brain imaging with advanced biomarker testing to uncover root-cause brain imbalances and has created the Amen Clinics 2-Week Neurointensive Program for complex neuroimmune disorders. A sought-after speaker and educator, Dr. Cornish is dedicated to advancing brain and body longevity while translating complex science into practical, patient-centered strategies. In this episode she and Dr. Dempsey discuss neuroinflammation, the role of limbic system, gut imbalances, chronic infections and MCAS. Dr. 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 [email protected]! 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.

Nov 17, 202548 min

S4 Ep 283Live from the 12th annual Run for Research - interviews with participants

Our 12th annual 5k/2k took place virtually and at Wittenberg University in Springfield Ohio and raises funds for research to help today's struggling POTS patients. We interviewed several participants while they were waiting for the event to begin and got a chance to find out what brings them to the event, why they want to raise awareness of POTS and 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, 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 [email protected]! 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.

Nov 11, 202541 min

Dr. Robert Groysman on mechanisms, novel treatments, E.A.T., stellate ganglion block and more

Dr. Groysman is founder of the COVID Institute, where they treat POTS/dysautonomia, MCAS, ME/CFS, long COVID, and are reporting good outcomes with evidence-based treatments that are relatively novel in the U.S., such as stellate ganglion block, Epipharyngeal Abrasive Therapy (EAT), vagal nerve stimulation and more. In this episode Dr. Groysman describes his approach, the 6 main underlying mechanisms he sees at work in these conditions, novel treatments he is finding effective, and what patients can expect at his clinic. 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 [email protected]! 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.

Nov 4, 20251h 1m

Jill Krapf, MD on painful sex, vulvovaginal disorders and mast cells with Dr. Tania Dempsey on Mast Cell Matters

Dr. Jill Krapf is a Board-Certified OB/GYN who specializes in genitopelvic pain and skin conditions, is founder of the Center for Vulvovaginal Disorders and co-author of the book When Sex Hurts: Understanding and Healing Pelvic Pain. She is a wealth of knowledge and with Dr. Dempsey they discuss the mechanisms behind these disorders, treatments, plus their findings about how mast cells may be involved. Dr. 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 [email protected]! 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.

Oct 25, 202547 min

Tristan, from hiking, skating and EMT training to a looong wait

Tristan was an avid hiker, skate boarder and EMT-in-training when his world suddenly started spinning. Although his doctor diagnosed POTS and referred him to a top specialist, he has been waiting two years for that appointment. In the meantime he deals with a lot of symptoms (e.g., starting each day vomiting) and is unable to work, however he remains upbeat and even shares his successful chronic illness reference on Tinder. 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 [email protected]! 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.

Oct 19, 202536 min

Dr. Kendal Stewart on a ‘hypo-adrenergic’ variant of POTS, genetics and novel treatments

Dr. Kendal Stewart, former skull surgeon, now specializes in addressing root causes of neuroimmune conditions like POTS. In this episode he discusses seeing 'hypo-adrenergic' POTS, the underlying genetics that may cause it, value of genetic testing, nutrigenomics, plus novel treatments such as exosomes, peptides, CBD, and much more. You can find Dr. Stewart at https://www.drkendalstewart.com/ or his podcast, Coffee with Dr. Stewart. 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 [email protected]! 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.

Oct 12, 202549 min

Patrick Ussher, author of Understanding ME/CFS and Strategies for Healing

Patrick Ussher is an author, advocate, educator and patient himself. His book Understanding ME/CFS and Strategies for Healing explains current research and theory about a unifying explanation for ME/CFS and what that means for treatment strategies. He explains the Mitodicure initiative to actually cure ME/CFS (pending funding), and also discusses some experimental (**i.e., not recommended: consult YOUR doctor about what's right for you**) treatments that he has tried, including HELP Apheresis, HBOT (hyperbaric oxygen therapy), a carnivore diet and more. He also shares why he wrote a book about "psychogenic drinking" that -- among POTS and ME/CFS patients -- may not be psychogenic after all. Patrick's website is here. His YouTube channel is here. You can follow him here. To put your name into the hat for the book giveaway, please follow this link https://patrickscribe80.gumroad.com/l/jrfbq There you will be able to download a free sample from the book by inputting your email. Under ’name a fair price’, just input ‘0’ to get the sample for free. This will also sign you up to Patrick’s newsletter but, if you would rather not subscribe to this, just indicate this clearly in the ’newsletter opt-out’ box. Three email addresses will be chosen at random two weeks after the podcast’s release date and winners will be contacted to arrange delivery of the book. You can also use the contact form on Patrick’s website and let him know you are entering the draw, if preferred. 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 [email protected]! 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.

Oct 7, 20251h 7m

Kirti Sivakoti, MD, pediatric dysautonomia and complex illness expert

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 her observations in this patient population, why she left a more conventional community-based practice to lead a program focused on complex chronic illness, and how her clinic and programs now work to bring together resources and a multidisciplinary approach to helping children and teens with dysautonomia. Dr. Sivakoti also shares her thoughts on POTS, ME/CFS, complex illness, how the healthcare system needs to better help these patients and more. This is a great conversation with a very compassionate, thoughtful and knowledgable physician and researcher. 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 [email protected]! 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.

Sep 28, 202546 min

S4 Ep 276Taylor’s pleasure cruise that turned into another journey

Taylor caught COVID on a pleasure cruise and life has been pretty different ever since, but she is doing everything in her power to regain function and wellness, including going to top institutions and adding a service dog, Milo, to her already significant set of furry family members. Listen to her upbeat tales about living with POTS, gastroparesis and hypermobility. You can find Taylor on Instagram 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 [email protected]! 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.

Sep 22, 202534 min

Dr. Greg Plotnikoff on favorite new findings and a thiamin theory with Dr. Tania Dempsey on Mast Cell Matters

Dr. Greg Plotnikoff is a thought leader in dysautonomia/MCAS and complex chronic illness and in this episode he is freshly returned from giving two presentations at the Dysautonomia International Conference. He and Dr. Dempsey discuss what he learned and what he is currently excited/hopeful about, including new data about hypermobility as a potential underlying factor and how thiamine and other nutrients may theoretically play a key role in dysautonomia. Dr. Plotnikoff's article about 7 important questions to answer for symptomatic patients on a plant-based diet is here. Dr. Plotnikoff's website is here. Dr. 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 [email protected]! 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.

Sep 14, 202550 min

S4 Ep 274Valerie is thriving in law school after a life-threatening reaction to medication

Valerie had a life-threatening reaction to a medication administered in the ER, and she has had POTS ever since. Valerie's advice to other patients with many sensitivities is to consider getting pharmacogenetic testing to see which drugs may be more or less well tolerated. Despite many challenges, Valerie is now thriving in law school, following her passion for justice reform. 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 [email protected]! 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.

Sep 8, 202541 min

S4 Ep 273Dr. Jeffrey Boris on the genetic landscape of POTS

Dr. Boris is a Pediatric Cardiologist, Pediatrician, and leading expert on pediatric POTS. Here he explains his team's new findings about the genetic signals found in pediatric POTS patients: What they found, what this might mean for our understanding of POTS, and more. He also shares findings from his latest publication on longterm outcomes in POTS, and shares which hormones/oral contraceptives are helping some of the many patients who have worsening symptoms near menses. Dr. Boris is full of information and valuable nuggets, so don't miss this episode if you are interested in pediatric POTS. Dr. Boris's genetics article is here. Dr. Boris's first article on long-term POTS outcomes is here. Dr. Boris's second article on long-term POTS outcomes is here. Dr. Boris'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 [email protected]! 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.

Sep 1, 202545 min

12th Annual 5k/2k Invitation

bonus

Please join us in Going The Distance for POTS Research by participating in our 12th annual 5k/2k event, which can be done virtually or in person at the Wittenberg campus in Springfield, OH. More information and registration is at https://www.standinguptopots.org/annual-5k

Aug 31, 20251 min

POTS Diaries with Mackenzie from Massachusetts

Mackenzie from Massachusetts enjoys all kinds of artistic pursuits including writing and illustrating her own children's book. In this episode she describes her journey, including how a TikTok video helped her discover and manage her own POTS a couple years before the medical system diagnosed her. 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 [email protected]! 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/

Aug 24, 202526 min

S4 Ep 269MCAS symptoms “down there” with Dr. Tania Dempsey

MCAS doesn't ignore the nether-regions, so in this episode, Dr. Dempsey discusses symptoms and treatments in the genitourinary and surrounding areas, including some novel uses of antihistamines and mast cell stabilizers, as described in this research article. She also answers listener questions about hormones, hormone replacement, reactions to ultrasounds and ultrasound gel (this is the gel with fewer known allergens), and more. Dr. Dempsey's website is here: https://drtaniadempsey.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 [email protected]! 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.

Aug 16, 202550 min

S4 Ep 270Bria from Wales, a professional patient rights advocate

Bria started having symptoms in college, as an art and theater major, and told her doctor she suspected POTS. It still took her 8 more years to get a formal diagnosis. Bria is still looking for better solutions and answers (using ChatGPT), constantly experimenting and also working on acceptance. 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 [email protected]! 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.

Aug 9, 202545 min

S4 Ep 269Dr. Asad Khan on long COVID, micro-clots and more

Dr. Asad Khan was a pulmonologist on the front lines of COVID in Manchester England when he became a long COVID patient himself. Now retired due to chronic illness, he is a leader in patient advocacy and has contributed to cutting edge research related to hypercoagulation and micro-clotting in long COVID and related conditions. In this episode he discusses the research and his own experiences with treatments for long COVID and micro-clots. Off-label and experimental treatments are discussed as part of Dr. Khan's experience, and are not meant to be recommendations. Consult your doctor about what treatments may be right for you. You can follow and find Dr. Khan online at @doctorasadkhan Associate, Doctors with ME Champion, Long Covid Kids 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 [email protected]! Find out more about Standimg 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.

Aug 4, 20251h 9m

POTS Diaries with Randi: Surgical nurse, stoic and survivor

Having POTS, myocarditis, COVID and a heart attack right before your 40th birthday is not for the faint of heart, but Randi is a smart, strong, stoic surgical nurse who tells us all about it and more in this episode. 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 [email protected]! 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.

Jul 29, 202530 min

S4 Ep 267Vagal nerve stimulation and heart rate variability with Exercise Physiologist Caelum Schild

Caelum Schild is a Senior Exercise Physiologist in Adelaide Australia who specializes in POTS and related conditions. In this episode he describes some of the tools he uses, such as tVNS (transcutaneous vagal nerve stimulation) and HRV (heart rate variability), sharing some important research findings plus his clinic experience with these therapies. Caelum's website is https://loftyhealth.com.au/ 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 [email protected]! 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.

Jul 20, 202550 min

Kai, on living with profound ME/CFS

Kai has severe ME/CFS, and is using precious energy for this episode to help us understand what life is like with profound energy limitations: what an average day is like, the price paid for doing basic activities, what it's like to pass the time avoiding sound and light, and what more people should understood about severe profound ME/CFS. Kai wrote this document for anyone who wants to learn 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, 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 [email protected]! 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.

Jul 13, 202546 min

Todd Maderis, ND on novel treatments - Mast Cell Matters with Dr. Tania Dempsey

Dr. Todd Maderis is a naturopathic physician in Marin, CA, who began his career in environmental medicine and now specializes in helping complex patients by searching for the root causes of their illness. He and Dr. Dempsey discuss their hypotheses about how and why some patients can get so sick, their favorite newer tests and treatments -- including genetic testing, SOT, phosphatidylcholine -- and how excess fibrin production may contribute to excessive blood coagulation and biofilms that help infections hide from treatment. And much more! Drs. Maderis and Dempsey cover a wide range of topics and compare notes on their approaches to helping the most complex patients. Dr. Maderis's website and blog is here. Dr. 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 [email protected]! 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/

Jul 7, 20251h 2m

S4 Ep 264Clare on being in law school with seizures and POTS

Clare is a law student who has a genetic condition that causes epileptic seizures, which may have ultimately led to POTS. She is unfortunately highly experienced in losing consciousness. But she is still rocking law school (and studying health law) and in this episode discusses how she makes it all work. 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 [email protected]! 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.

Jun 28, 202538 min

S4 Ep 263POTS Practitioners: Dr. Jen Curtin on the RTHM approach to improving care for complex patients

Dr. Jennifer Curtin is using the latest technologies to improve patient care and offerings. She was a ME/CFS patient herself when she went to medical school, and now is Medical Director of the RTHM Clinic. Dr. Curtin describes her approach to care including traditional clinic care plus several innovative offerings that allow patients easier and remote access to common safe treatments for dysautonomia, MCAS, ME/CFS, long COVID and other common comorbid conditions. Her team has also created programs that can use HIPAA compliant artificial intelligence to review medical records for potential clues, suggested tests or treatments, and much more. Don't miss this episode if you want a potential view of the future of medical care for complex patients. 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 [email protected]! Find out more about Standimg 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.

Jun 23, 202552 min

Alici’a, a nauseous, resilient, animal-lover

Alici'a has spent a LOT of time hugging garbage pails, due to extreme nausea, and she did not get the support she hoped from her school or insurance company, but that didn't keep her from figuring out how to graduate high school, get accepted to college with needed accomodations, and feel she has become a better person for the challenges. 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 [email protected]! 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:

Jun 15, 202532 min

Cardiologist Alexis Cutchins on MCAS, POTS, venous outflow/pelvic congestion syndromes, MALS and more with Dr. Tania Dempsey on Mast Cell Matters

This is an excellent discussion for patients and practitioners alike who are interested in the connections between MCAS, POTS, venous compression, pelvic venous disorder, and MALS. Cardiologist Dr. Cutchins and Dr. Tania Dempsey share tons of information plus their latest thinking on how to treat patients with these complex presentations, including an in-depth conversation about how MCAS patients are faring with stenting procedures for venous compressions. You can follow Dr. Cutchins on Instagram at @drcutchins Dr. Cutchins’s website is here. Dr. Dempey’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 [email protected]! 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:

Jun 10, 202553 min