The POTScast

This episode of the POTScast was recorded before our in-person 5K/2K event to raise funds for POTS research grants. POTS patients and their loved ones spoke with us to give an authentic glimpse of the ups and downs of living with a chronic illness like POTS. We are proud to serve this community, and touched by their stories.  Special thanks to our presenting sponsors, Normalyte, Thrivent, and Mike...

Dr. Dempsey, one of the world's leading experts on MCAS and associated conditions, answers listener questions about exercise as a mast cell trigger, the underlying causes of MCAS, treatments like Xolair, Amlexanox, Ketamine and antihistamines, estrogen replacement, her favorite novel therapies and much more.  If you have questions for Dr. Dempsey about mast cells and related topics, you can send t...

Jessica was a kindergarten teacher with three advanced degrees, two young children, a husband, and busy life before COVID, despite having POTS, which she managed with salt, fluids and compression.  But soon after her second COVID shot she experienced a series of new symptoms, diagnoses, and disappointments in the systems she thought would be there to help.  Jessica recounts her (sometimes harrowin...

In this episode Dr. Cathy Pederson shares her latest published findings from a POTS patient survey looking at the relationship between POTS triggers -- such as infection, physical trauma, hormonal shift -- and symptom profile/severity.  Her findings, showing that POTS triggered by physical trauma was associated with more severe GI and overall symptom severity, can be downloaded here, in the Journa...

In this episode, Madeline shares her experience of living with POTS, from diagnosis to the daily routines that helped her improve over time. She talks about how exhausting it can be to live with a condition that often feels like a full-time job, and how creating simple systems made her POTS more manageable. That experience led her to build POTSie, a mobile app created to help others reduce the men...

After successfully treating his own Long COVID, founding the COVID Institute , treating hundreds of patients, and publishing the seven-volume Complete Long COVID Handbook series , Dr. Robert Groysman has published a peer-reviewed article in Frontiers in Medicine proposing a new way to understand Long COVID as a “network disorder.”   In this episode, Dr. Groysman explains his mechanism-anchored mod...

Vindara Health is the new telehealth specialty clinic created by Dr. David Kaufman and Paddy Monahan, to improve access to expert care for patients with the most complex conditions, including POTS, long COVID, ME/CFS, MCAS, autoimmunity, Lyme, fibromyalgia and more.  In this episode they discuss how it works, why they were inspired to create a new model, why they think there is increasing complex...

In this episode, we explore the legal and civil rights issues surrounding chemical and fragrance intolerance, including what happens when people are unable to safely access hotels, businesses, and other public spaces that use synthetic fragrances in their air systems and cleaning (or other) products. Our guest is Scott Cole, founder of Cole & Van Note , a law firm with more than 30 years of ex...

Michelle was a busy mom, business owner and back country adventurer whose life changed dramatically in the 36 hours following her second COVID shot.  After finding little help locally in Canada, she traveled to the US for visits with leading specialists in dysautonomia, MCAS, small fiber neuropathy and more.  She recounts some of the treatments she has had -- including IVIg, EBOO, and even brain s...

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 shares findings and lessons from one case report and 3 recent research publications: I...

For patients with medication hypersensitivities, figuring out exactly what is in a medication can be surprisingly difficult. In episode 247 of The POTScast , data scientist Mike Brook discussed research showing that the excipient, or “inactive ingredient,” lists in DailyMed drug labels were internally inconsistent in 39% of 100 commonly prescribed drug formulations examined. For patients who react...

In this episode Dr. Dempsey answers listener questions about Lyme disease, sharing why it can be complex, her treatment approach at different stages, how she starts treatment on highly reactive MCAS patients, thoughts on the new Lyme vaccine, SOT therapy and more.  Dr. Dempsey's episode discussing SOT therapy in more depth can be found here . Dr. Dempsey's website is  https://drtaniadempsey.com/ I...

Emily's daughter had sensitivities since a very young age.  Emily recounts their journey with mysterious symptoms, good and bad medical encounters, conventional and unconventional treatments, faith and prayer, an unfortunate drug reaction, progress and setbacks, and how her family has coped through it all.   Here are the links for the mentioned RTHM Intelligence platform and the Long COVID Treatme...

Austin Walker sold his last company in 2020, then got COVID and never recovered. He spent 9 months bedridden, saw 20+ doctors who all dismissed it as stress. He eventually got better by joining online patient communities, collecting what was working from other people, and running self-experiments on himself. That experience turned him into a patient trying to solve this for complex chronic illness...

After successfully treating his own Long COVID, founding the COVID Institute , treating hundreds of patients, and publishing the seven-volume Complete Long COVID Handbook series , Dr. Robert Groysman has published a peer-reviewed article in Frontiers in Medicine proposing a new way to understand Long COVID as a “network disorder.” In this episode, Dr. Groysman explains his mechanism-anchored model...

Tiffany, a Doctor of Nursing Practice (with 6 other nursing/neurological credentials), relates her epic journey to uncover her own - and her family history of - neurovascular, neurometabolic and genetic issues contributing to her POTS and many other symptoms.  After multiple discoveries, surgeries, stents, dietary and lifestyle modifications Tiffany reports being again functional, happy, relativel...

Is endometriosis related to mast cells, MCAS and POTS in some people?  Dr. Dempsey explains why she suspects a link, how fertility, insulin resistance and pelvic congestion syndrome may also be involved, the mast cell targeted treatments she has seen help, and much more.  Dr. Dempsey's article that is mentioned:  Successful mast-cell-targeted treatment of chronic dyspareunia, vaginitis, and dysfun...

Dr. Debra Hawkins, DNP, is an advanced practice nurse and cardiology provider at Cardiovascular Health Clinics in Oklahoma specializing in POTS and autonomic dysfunction.  She brings a unique perspective -- from initially overlooking these conditions in the ER to becoming a dedicated advocate for this patient population as a provider. She combines personal insight with clinical guidance, including...

Nicole is a live morning news reporter (on her feet from 1am to 9am!) and horse lover in Hawaii who has dealt with type 1 diabetes, cyclic vomiting syndrome, POTS and more.  In this episode Nicole describes her journey and how she is using her communication skills to help patients as ' The Autonomic Coach ' and to help educate about dysautonomia, including speaking to healthcare practitioners earn...

Dr. Kamal Chemali is an autonomic neurologist, Professor of Medicine and Director of the Autonomic Nervous system Program at Case Western Reserve University. He started studying the piano at age seven and today is a conservatory-trained pianist who still performs. Dr. Chémali’s firm belief in the power of music in connecting people and in healing disease led him to start the Doctor-Patient Music C...

Krista Day-Gloe is a licensed clinical social worker and therapist who focuses on the mind–body connection. She’s the author of Mood & Moon: A Body-Led Guide to Understanding Cycling Bodies, a practical guide and tracking workbook that helps people connect hormonal shifts with mood, energy, sleep, digestion, and nervous system states—so they can recognize patterns and build supportive routines...

Tinsley has had POTS symptoms during two different stages of her life.  First at 16, in response to a severe allergic reaction to her braces, which went into remission when she had them removed; and second, during college, when she suddenly began having 15+ convulsive episodes per day with other debilitating symptoms.  And yet, she graduated college and law school, worked her dream job, got marrie...

This is a not-to-be-missed episode!  Dr. Dempsey discusses the use of GLP-1 medications for MCAS, including her most recent observations and recommendations.  This is a follow-up to Dr. Dempsey's free online GLP-1 Masterclass , which covers all the basics.  If you have questions for Dr. Dempsey about mast cells and related topics, you can send them to research@standinguptopots.org . Dr. Dempsey's...

Simone was a professor of sport psychology enjoying a trip through Mexico when symptoms became too serious to ignore.  POTS was just one of many symptoms (many were gynecological) and she ultimately learned she had multiple compression syndromes including May Thurner Syndrome, for which she received a stent, and Nutrcracker Syndrome, for which she underwent a renal autotransplant surgery to move h...

Betsy Harmon, RN, CRNI, CPUI, VA-BC has been an infusion nurse for over 20 years and runs the Alaska Infusion Center in Anchorage, Alaska, where she oversees and administers all types of infusions to a wide variety of patients.  In this episode she shares the many factors that go into safe and effective infusions, what infusion nurses are looking for and thinking about as they care for infusion pa...