The POTScast

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. De...

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. C...

Heather is a Nurse Practioner with long experience in vascular medicine, a dysautonomia patient herself, and is now working with a vascular clinic in Toledo, OH to bring genetic testing and counseling services to patients with suspected genetic connective tissue disorders, such as vascular EDS, Loeys-Dietz Syndrome, Marfan Syndrome and more.  She also sees patients with vascular compressions, pelv...

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 f...

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 Demps...

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...

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...

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...

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...