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. If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If ...
Jul 13, 2025•47 min
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 -- and how excess fibrin production may contribute to excessive blood coagulation and biofilms that help ...
Jul 07, 2025•1 hr 3 min
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 episode. If you are so moved, donations are accepted to help to support our production costs https://www.sta...
Jun 28, 2025•39 min•Season 4Ep. 264
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 dysautonomia, MCAS, ME/CFS, long COVID and other common comorbid conditions. Her team has also created progr...
Jun 23, 2025•53 min•Season 4Ep. 263
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 subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support o...
Jun 15, 2025•33 min
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 patients are faring with stenting procedures for venous compressions. You can follow Dr. Cutchins on Instagra...
Jun 10, 2025•53 min
Caitlyn was a 4th grade teacher, mom, group fitness instructor and general ball of energy until she got Mononucleosis. Faced with all sorts of challenges, including losing relationships because her health was "too much", what did she do? She wrote. And it evolved into a book about her experiences and included thoughtful questions for readers, which Caitlyn wishes she's asked herself sooner. Above all, she wants other patients not feel alone. You can find her book here: http://www.notmyproblemboo...
Jun 03, 2025•37 min•Season 4Ep. 260
Dr. Marie-Claire Seeley explains new published findings from the Australian POTS Registry, looking at sex differences in symptoms, care seeking, diagnostic delay, and other parts of the patient journey. You can read the published article here and learn more about the Australian POTS Foundation here . 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 https://www.standin...
May 26, 2025•18 min•Season 4Ep. 259
The DysCourse event is presented by The Dysautonomia Project . It is 100% free and is intended to provide practical strategies, information and community to patients and caregivers. Hope to see you there!
May 19, 2025•9 min
Sam was enjoying a post-graduation road trip when a series of unlucky medical issues left her with POTS including non-epileptic seizures. Although she still faces new challenges (MALS this time), Sam is still smiling, optimistic, and sharing her experiences and tips as an influener on TikTok. You can find her channel here. 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 co...
May 17, 2025•38 min•Season 4Ep. 258
Dr. Anna Cabeca started her career as a researcher and busy physician, until her own fertility issues drove her to search the world over for better solutions for women's sexual health. In this interview with Dr. Dempsey we learn about hormones, symptoms, treatments, natural alternatives, that vaginal health is important for overall health, and much more. Dr. Cabeca's website is here: https://drannacabeca.com/ Dr. Dempsey's website is here: https://drtaniadempsey.com/ If you liked this episode, w...
May 12, 2025•47 min•Season 4Ep. 257
Meet Reilly, a 29-year-old director of nursing from Northern British Columbia, Canada. Reilly shares insights into her life and career, details her experience with the healthcare system as both a provider and a patient, talks about the challenges of traveling with POTS, and describes her journey from the onset of symptoms to receiving a diagnosis. 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 ...
May 06, 2025•35 min•Season 4Ep. 256
Hyperventilation and POTS: Do POTS patients "breathe wrong?" Dr. Jacquie Baker explains the high-tech research studies performed in her (and Dr. Satish Raj's) lab to untangle the mechanistic causes and effects of hyperventilation in POTS. She also explains findings on how hyperventilation in POTS differs from hyperventilation in anxiety. You can find the discussed publications here and here . Dr. Raj & Dr. Baker's latest research projects at U. of Calgary Autonomic Lab are listed here . Some...
Apr 28, 2025•37 min
Megan is a literacy advocate in Georgia and is very passionate about her work. When POTS and comorbid conditions struck, she had difficulty making it through the work day, and didn't get any relief or answers from the first 20 doctors she saw. Luckily she persisted and eventually found the one that made ALL the difference. 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 co...
Apr 22, 2025•38 min•Season 4Ep. 254
Dr. Donna Kirchoff is an integrative developmental and behavioral pediatrician who works with children who have complex conditions, often involving MCAS, autism and other neuroinflammatory conditions like PANS and PANDAS. In this episode she and Dr. Dempsey discuss the role of mast cells in these conditions and what can be done to help these young patients. Dr. Kirchoff's website is here. Dr. Dempsey's website is here. If you liked this episode, we hope you will click subscribe so that you don't...
Apr 15, 2025•50 min•Season 4Ep. 251
Karen is a healthcare professional in rural Canadian who had onset of confusing and scary symptoms six days after her third COVID shot. It took a year to figure out symptoms like "feeling drugged when upright, yet feeling able to solve world problems when lying down." Karen shares how she found answers and the ability to be back at work, now able to recognize POTS in her patients. If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, ...
Apr 07, 2025•37 min•Season 4Ep. 252
POTS patients with cognitive dysfunction had SPECT imaging done to measure the blood flow to their brains and lead author, Marie-Claire Seeley, RN, PhD, discusses the dramatic findings. You can read the published article here and learn more about the Australian POTS Foundation here . 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 https://www.standinguptopots.org/don...
Mar 30, 2025•48 min•Season 4Ep. 251
Jill shares four nutrition findings from general nutrition (not done on POTS patients) that might still be of interest to POTS patients, as they have been shown to affect cognitive function, mood, pain and exercise tolerance. As always, this is not medical or dietary advice. Check with your own medical team about what is right for you. 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 ...
Mar 25, 2025•36 min•Season 4Ep. 250
Lily was our first POTS Diaries guest (Episode #2) as a college student with severe POTS. She's back to discuss how she navigated planning a POTS-friendly career, the job hunt, cross-country move, 2 hurricanes, and maintaining her relationship with her partner -- all while managing fairly severe POTS and related conditions. Lily's smart strategies, insights and sense of humor make this episode extra valuable and fun. If you liked this episode, we hope you will click subscribe so that you don't m...
Mar 15, 2025•40 min•Season 4Ep. 249
Gillian Ehrlich's NeuroVeda Clinic in Seattle treats complex patients with a wide variety of treatments including peptides, Ayurvedic medicine, diet and nutrition, imaging, mind-shifting therapeutics, plasmapheresis, and more. In this episode, Dr. Tania Dempsey interviews Gillian about her Ayurvedic approach and also her experiences with plasmapheresis. More information about Gillian and her clinic is available here. Dr. Dempsey's website can be found here. If you liked this episode, we hope you...
Mar 11, 2025•55 min•Season 4Ep. 248
Patients with sensitivities to medications or their inactive ingredients ('excipients') often use NIH's DailyMed website to look up excipients or alternative drug formulations that might work better for them. This is important as 38 "inactive" ingredients have been reported to cause allergic reactions at the doses found in medications. Data Scientist Mike Brook explains the research project that found excipient list inconsistencies in ~40% of DailyMed drug product labels, and what sensitive pati...
Mar 04, 2025•36 min•Season 4Ep. 247
POTS and related conditions are not psychiatric conditions, but can have neuropsychiatric symptoms. Nurse Practitioner Tena McLarty PMHNP-C, FNP-C specializes in POTS and comorbid conditions, with a particular interest in neuropsychiatric symptoms both from the conditions themselves and as possible side effects from drugs commonly used in these conditions. In this episode she shares the research findings - plus her personal experiences - relating to common symptoms, underlying mechanisms, potent...
Feb 25, 2025•56 min•Season 4Ep. 246
Erica was busy, active and career-focused when her health challenges began. She survived a thrice-collapsed lung, two lung surgeries (one with complications) and COVID, but was left with debilitating POTS with blood pressure spikes and chest pain. She spent thousands of dollars consulting concierge doctors, long COVID clinics, and even having a stent placed, but the thing that made the biggest difference for her POTS was neural retraining to calm her nervous system. In this episode Erica explain...
Feb 17, 2025•33 min•Season 4Ep. 245
Dr. Ruscio is a thought leader, expert, clinician, researcher and podcaster specializing in gut health and SIBO - small intestinal bacterial overgrowth. In this episode, he and Dr. Tania Dempsey discuss how gut health issues like SIBO can drive MCAS, plus Dr. Ruscio's approach to testing and treatment. This is a great conversation between top clinicians, full of practical tips for patients with SIBO and other GI issues in the context of MCAS. Dr. Ruscio's website is here: https://drruscio.com/ D...
Feb 13, 2025•56 min•Season 4Ep. 244
Dr. Leonard Weinstock -- gastroenterologist, prolific researcher, and clinician on a mission to cure syndromes -- returns with his grandchild, Max, to discuss MCAS, his latest research projects, the release of his Triad documentary, and why he is so driven to keep helping people with mysterious complex syndromes. If you are a fan of Dr. Weinstock as we are, you'll enjoy hearing him in the role of both dedicated physician and dedicated grandfather. If you'd like to consider supporting the Triad d...
Feb 05, 2025•24 min•Season 4Ep. 243
Since birth Lisa has lived without eyesight or normal hormones, but it wasn't until her 50's that POTS and long COVID struck. But that hasn't stopped her from travelling, singing in a choir (including solos) and living independently. Lisa is an expert on developing smart strategies to live better with physical challenges: In addition to doing it for her own unique combo of conditions, her profession is teaching classes to people without eyesight on living independently. Lisa shares her practical...
Jan 26, 2025•44 min•Season 3Ep. 242
Dr. Derik Anderson discusses the interconnections between POTS, hypermobility, MCAS, gut dysbiosis, autoimmunity, plus shares some of the approaches used by his clinic to identify and treat the 20% of issues causing 80% of the problems. He discusses shockwave therapy, fascia compression, heart rate variability and more. The Muscle and Joint Clinic website can be found here . The slide show (with mentioned diagram) explaining connections between syndromes is available here: https://www.ehlers-dan...
Jan 21, 2025•42 min•Season 4Ep. 241
Danielle experienced first-hand the shortcomings of the conventional primary care model for patients with complex chronic illness like dysautonomia. So, what did she do? She founded a better one: "Primary care without the gaslighting"! Danielle and two of the physicians on her team, Dr. Jen Rubin and Dr. Kate Eisenberg, discuss their new model and clinic, how they provide care differently, why it makes a difference to have a PCP who understands POTS and related conditions, and their plans for th...
Jan 14, 2025•44 min•Season 4Ep. 240
Many POTS patients wear abdominal compression, but a team from Duke is researching ways to make it more comfortable and effective. Kishen Mitra and Sameer Kunte are leading the team and describe their work so far, researching patient preferences, technology, designs and plans to help POTS patients have better choices for abdominal compression devices. The Uplift survey findings are published here . Here is Uplift on LinkedIn Here is the Uplift website If you liked this episode, we hope you will ...
Jan 08, 2025•43 min•Season 4Ep. 239
Kristy's POTS had her largely bedbound until her stubborn streak and competitive spirit led her to train for a 450 mile cycling race. She recounts the training, the 35-hour-long event, the aftermath, and what she's up to now. 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 https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your ...
Dec 31, 2024•33 min•Season 4Ep. 238
