The POTScast

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

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 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/

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 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.

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 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. 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 info@standinguptopots.org! 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.

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 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.

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 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.

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 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. 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 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/  

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 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. 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 info@standinguptopots.org! 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.

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 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:

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 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:

Caitlyn was a 4th grade teacher, mom, group fitness instructor and general ball of energy until she got Mononucleosis.  Faced with all sorts of challenges, including losing relationships because her health was "too much", what did she do?  She wrote.  And it evolved into a book about her experiences and included thoughtful questions for readers, which Caitlyn wishes she's asked herself sooner.  Above all, she wants other patients not feel alone.  You can find her book here:  http://www.notmyproblembook.com/ If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist 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.