The POTScast
Learn about Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS) and more by joining us each week for a new episode. If you are living with POTS, MCAS or other chronic illnesses, you are not alone! Our goal is to raise awareness, nurture community, and empower patients with information and practical skills for living better with this chronic invisible illness. Each month, we feature episodes with top POTS physicians as well as POTS patients. Because many POTS patients are eventually diagnosed with MCAS, the first Tuesday of every month we feature a new series called Mast Cell Matters...
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Attorney Krysti Monaco on winning children's social security benefits
<p>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. </p> <p>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</p> <p>Tell us what you think of The POTScast or s...
Cell membrane health with Dr. Melanie Stein on Mast Cell Matters with Dr. Tania Dempsey
<p>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.</p> <p>In this episode, she and Dr. Dempsey discuss why cell membrane health is relevant to MCAS and many other chronic illnesses, testing and treatment approaches, their favorite in-office treatments, diet considerations and much more.</p> <p>Dr. Stein's clinic's website is here.</p> <p>D...
Elizabeth on her comeback and book: The Toll it Took
<p>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 Toll it Took -- about her experiences! Her advice: "Even if you don't feel like it, keep going."</p> <p>If you liked this episode, we hope you will click subscribe so that...
Excessive sleep, fatigue and insomnia in POTS WITH Dr. Kirti Sivakoti
<p>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, hypersomnia, insomnia, and interesting findings seen in sleep studies of POTS patients. Dr. Sivakoti explains what can be tried at home (e.g., lifestyle strategies), medications that may help, and when a sleep study may be warranted. As always, Dr. Sivakoti is a wea...
Julie on the lengths she had to go to for recovery
<p>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 ultimately got treatment with 4 stents for her venous compressions, and how that has made a big difference.</p> <p>If you liked this episode, we hope you will click subscribe so that you don't miss an e...
Dr. Dempsey’s cutting edge treatments (part 2) - Mast Cell Matters
<p>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.</p> <p>More information about Dr. Tania Dempsey and her clinic can be found at https://drtaniadempsey.com/. </p> <p>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...
Maggie on being both patient and Mental Health Therapist
<p>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 octopus! Maggie's website is here.</p> <p>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 prod...
The Dysautonomia Workbook with Joanna Behm, EDD OTR/L and Madison Thornton, OTD OTR/L
<p>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 dysautonomia and related challenges. In this episode they explain occupational therapy, the workbook, and share many examples of how patients can get the most from it, and from an OT mindset in general.</p> <p>...
Dr. Casey Kelley on Mast Cell Matters
<p>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 approaches for these conditions in pediatric patients, and we highly recommend this episode for anyone wanting to hear the latest thinking in treatments for these young patients. Dr. Kelley's website is here. </p> <p>Dr. Dempsey's website is h...
Sophie on life after severe COVID
<p>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.</p> <p>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</p> <p>Tell us wh...
