The POTScast

We have the entire medical/production team of 5 physician/researchers to give us an update and behind-the-scenes look at the documentary they are making about the trifecta of dysautonomia/POTS, MCAS and hypermobility spectrum disorders.  We hear from doctors Tania Dempsey, Larry Afrin, Linda Bluestein, Lawrence Kinsella and Leonard Weinstock, along with patient Jill Brook, to hear how filming is going so far and how we can all help support the film.  This is a crossover episode with Bendy Bodies with Hypermobility MD, Dr. Linda Bluestein.  You can learn more about the documentary at MCASfund.org. Chapters 00:00 Introduction 00:37 Creating Awareness and Increasing Treatment Options 03:09 The Birth of the Documentary Project 05:20 Filming in New York 07:19 Filming in St. Louis 10:32 The Motivation to Work with Complex Patients 15:49 The Journey of Recognizing MCAS 17:34 The Impact of MCAS Treatment 21:00 Personal Experiences and Incorporating MCAS Treatment 22:42 The Need for an Educational Library 25:29 The Challenge of Condensing Information 26:21 Describing MCAS in Sound Bites 31:10 The Importance of Raising Awareness 34:42 Growth and Development Abnormalities in MCAS 40:03 Main Points about Hypermobility Syndromes and Dysautonomia 44:48 Partnership with LDN Research Trust 51:47 Final Words and Call for Support 54:26 Recognition and Treatment of Unrecognized Patients 55:44 Importance of Learning and Trying 56:13 Gratitude for Dedicated Doctors 56:47 Closing Remarks and Resources      You can learn more about the physicians in this episode at: https://aimcenterpm.com/ for Dr. Tania Dempsey and Dr. Lawrence Afrin https://www.gidoctor.net/leonard-weinstock-md for Dr. Leonard Weinstock https://www.ssmhealth.com/find-a-doctor/doctor-details/laurence-j-kinsella-md for Dr. Laurence Kinsella https://www.hypermobilitymd.com/ for Dr. Linda Bluestein You can read the transcript for this episode here: http://tinyurl.com/potscast186 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.

Tim and Leah navigate life with POTS, showcasing a heartfelt partnership. They reflect on their 25-year marriage and the adjustments made as Leah's health declined. Communication and teamwork emerge as vital tools in their relationship. Tim took on household duties while also assigning chores to their children. Their strategies include honest discussions with the kids and finding joy in small moments together. With a focus on gratitude and prioritization, they illustrate how love and adaptability can thrive amidst challenges.

Dr. Tania Dempsey interviews Dr. Eva Nagy, a breast surgeon experienced in all sorts of breast surgeries, who has developed special interest and skill in treating breast implant illness (BII), which she believes can be related to mast cell activation syndrome (MCAS).  Dr. Nagy describes BII, how she removes problem implants, and the effects this can have on a wide range of symptoms. You can learn more about Dr. Nagy and her practice here. You can read the transcript for this episode here: http://tinyurl.com/potscast184 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.

In this episode, Nutritionist Jill Brook reviews the research findings on nutrient deficiencies in POTS, shares some tips, and directs listeners to a great resource for finding which lab tests are recommended by our Medical Advisory Board to determine whether nutrient imbalances may be a factor for you. With Jill’s husband as this week’s interviewer, we also learn about some nutrient experiments and misadventures in her own POTS journey. You can read the transcript for this episode here: http://tinyurl.com/potscast183 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.

Quinton loves to work out and research Long COVID. About two weeks after recovering from a mild COVID infection, he developed POTS and found himself nearly bedridden. He has slowly worked his way back toward being functional, although he still has significant limitations. You can read the transcript for this episode here: http://tinyurl.com/potscast182 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.

Dr. Alexis Cutchins wrote a comprehensive review of POTS, including less-known treatments like oral contraceptives, gluten-free diets, and diosmin. Join her in thinking about promoting good blood flow that might decrease other POTS symptoms. Dr. Cutchin's review paper on POTS:https://www.uscjournal.com/articles/narrative-review-postural-orthostatic-tachycardia-syndrome-associated-conditions-and You can read the transcript for this episode here: https://tinyurl.com/potscast181 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.

Emily was working as a medical assistant when she developed POTS. While she was aware of POTS, receiving a proper diagnosis still took 7 or 8 months. Many practitioners were dismissive of her symptoms, leading to a delay in treatment. You can read the transcript for this episode here: https://tinyurl.com/potscast180 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.

Leah's life changed after her family got sick in December 2019. They rebounded in a couple of weeks, but she did not. She was diagnosed with POTS quickly, but remains largely bedbound and has had to shift her perspective to use her energy wisely for her family. 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.

Dr. Settle is a psychiatrist who believes that mast cell activation is responsible for some symptoms of anxiety, depression, bipolar disorder type II and others. She treats MCAS as a way to stabilize both mast cells and their emotional state. You can read the transcript for this episode here: https://tinyurl.com/potscast178 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.

Perceived burdensomeness, feeling like a burden to friends and family, is common in POTS patients. This feeling can be a predictor of suicidal thinking, particularly in men. We can change feelings of burdensomeness - find out how in this episode! You can read the transcript for this episode here: https://tinyurl.com/potscast177 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.