The POTScast

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 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.

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 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. Kendal Stewart, a former skull-base neurosurgeon turned neuroimmune specialist, dives into the complexities of POTS, especially the hypo-adrenergic variant linked to specific genetic mutations. He emphasizes the importance of genetic testing and nutrigenomics in tailoring treatments, discussing innovative therapies like exosomes and peptides. Dr. Stewart also explores the connection between chronic inflammation, immune modulation, and the role of CBD, providing insight into how these approaches can help manage symptoms effectively.

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 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.

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 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.

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 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. 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 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.

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 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. 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 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.

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