The POTScast

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...

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...