The POTScast

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...

Amy is a mom and equestrian from North Carolina who has now spent over half her life with POTS.  In this episode she shares how she finished high school (early), has enjoyed horses throughout periods of being able to ride or not being able to ride, her favorite POTSy activities, her TikTok videos (see them on TikTok at @amymarieeee00), her favorite quick meal, and so much more.   If you liked this...

Dr. Sally Daganzo is a board-certified internal medicine physician with advanced training in psychiatry, eating disorders and functional medicine. She has a private practice in San Rafael California and also offers telemedicine in several states.  In this episode she discusses her approach to treating complex patients, the mental-physical health intersection, eating disorders and what made her dec...

Elli from episode 65 is back to share what she wishes she'd known sooner after her 2-year ordeal that eventually resulted in several new diagnoses and surgery for MALS (median arcuate ligament syndrome).  You can find Elli on most social media at potsie.life. 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 t...

Dr. Jen Curtin is the Medical Director and Co-founder of RTHM Clinic , which specializes in complex chronic conditions via their clinic, telemedicine services, Intelligence platform, medication access program and other innovative services. She is also a former complex chronic illness patient herself.  Charlie McCone is a San Francisco based Long Covid patient advocate and non-profit professional w...

Aryn was a serious college athlete when her POTS developed, and in this episode she shares how she has adapted and how despite having world class cardiology care for her symptoms, her diagnosis would have been missed if it hadn't been for another POTS patient recognizing her symptoms and then Aryn's specifically asking for a tilt table test. If you liked this episode, we hope you will click subscr...

Krysti Monaco helps families apply for disability benefits when their children are too disabled to work.  In this episode she describes the available programs, application process, challenges, pitfalls, important deadlines and more.  Krysti's law firm offers free consultations, daily YouTube videos, a free podcast and their website is here .   If you liked this episode, we hope you will click subs...

Dr. Melanie Stein, ND  is a licensed Naturopathic Physician in Portland, Oregon and a recognized leader in Cell Membrane Therapy for the treatment of complex and chronic illness. She specializes in restoring health at the cellular level—repairing and revitalizing cell membranes to improve energy production, enhance detoxification, and restore healthy communication between cells. In this episode, s...

Elizabeth was a teen athlete when she first became bed bound with POTS and several other conditions including narcolepsy, epilepsy and gastroparesis.  After 5 years of struggling to be heard or helped, and wondering if the struggle was worth it, she is now back in school, working full time, and becoming the kind of healthcare professional she wishes she'd had.  AND she has written a book -- The To...

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 sleep issues commonly seen in POTS, such as excessive fatigue, sleepiness, h...

Julie's recovery from POTS and other serious conditions involved an epic tale of sheer determination, next-level advocacy, some unconventional treatments (which we are not endorsing: talk to YOUR doctor about what is right for you), a lot of internet research, traveling across the country to see a doctor with availability, and even winning a related lawsuit in the meantime.  She discusses how she...

Dr. Dempsey is always looking for new therapies that may help her complex patients.  In this episode Dr. Dempsey discusses how she incorporates treatments with Methylene Blue, peptides, and the Nanovi breathing device.  For each one she explains what it is, how it works, the risks and benefits, who is a good candidate, and more. More information about Dr. Tania Dempsey and her clinic can be found...

Maggie was 14 when she started passing out regularly, and she still does occasionally, but that didn't stop her from getting back to school, completing graduate work and becoming a Mental Health Therapist.  Maggie shares how she helps others with invisible chronic illness and strategies she uses herself.  Maggie also shares some statistics about living with disabilities and a recipe for cooking oc...

Joanna Behm, EDD OTR/L and Madison Thornton, OTD, OTR/L are experts in occupational therapy (OT) as therapists, dysautonomia patients, and Joanna is even a professor of OT.  Together they created a workbook that first shares the latest evidence and then leads readers through a series of worksheets and questions to help them find their best OT-based solutions and routines for living better with dys...

Dr. Casey Kelley is Board Certified in family and integrative medicine, teaches on the faculty of the Northwestern Medical School, and her care is informed by her own past experience having complex chronic invisible illness.  Now she treats some of the very toughest cases, including Lyme, POTS, PANS/PANDAS, MCAS and more.  In this episode she and Dr. Dempsey discuss cutting-edge treatment approach...

Surviving severe COVID was just beginning of Sophie's health adventure.  She discusses her unexpected COVID-related medical challenges, new job and living situation, the stenting procedure that helped (but not as much as hoped), how she has adjusted to her new situation and how it all has made her even better at her work in healthcare. If you liked this episode, we hope you will click subscribe so...

Attorney Nancy Cavey has spent 39 years representing people with disabilities all over the U.S., and is an expert in helping people qualify based on POTS, MCAS, hEDS and other invisible illness.  In this episode she describes the process, how to maximize your chances of success, common pitfalls, important deadlines and more.  We will have a part 2 with Nancy's colleague in a few weeks, to address...

Western folk singer-songwriter Nellie has recorded multiple albums and EPs, toured nationally from Alaska to Nashville, appeared on PBS’s Songs at the Center, opened for Grammy-nominated artists, and become a beloved regular at the Woody Guthrie Folk Festival. Most recently, she was profiled in Forbes for her life as an artist living with postural orthostatic tachycardia syndrome, bringing huge ma...