The POTScast

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...

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 wi...

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 mechan...

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 in...

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...

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/  o...

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:  cons...

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 conventiona...

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 Instag...

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 n...

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...

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 contraceptiv...

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 yo...

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...

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 yo...

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 wi...

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  ht...

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...

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...

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 -- a...

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 episo...

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 dysaut...

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 subscrib...

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 patient...