PODCAST · health
The POTScast
by Standing Up to POTS, Inc.
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, in which top MCAS practitioners share their experiences in better treating patients. You can learn more by listening to our groundbreaking POTScast anywhere, anytime. Visit our website at www.standinguptopots.org and follow our social media accounts @standinguptopots.
Episodes
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POTS triggered by physical trauma associated with greater symptom severity with Dr. Cathy Pederson
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...
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Madeline on creating the POTSie app to help manage POTS
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...
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Robert Groysman, MD on identifying mechanisms driving long COVID with the Trigger-Timing Framework
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…
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Dr. David Kaufman & Paddy Monahan on Vindara Health for Complex Patients
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…
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Campaign against synthetic fragrances with Attorney Scott Cole and Dr. Tania Dempsey
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)...
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Michelle co-founded CANrise19 to help Canada’s COVID vaccine injured
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…
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Four Insights for Providers with Dr. Kirti Sivakoti, MD
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...
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When “Inactive” Ingredients Aren’t: The ICU stay that inspired ExciIQ, with Nicole & Jeff Allen and Mike Brook
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...
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Lyme disease and MCAS Q&A with Dr. Tania Dempsey as part of Mast Cell Matters series
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...
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Emily on her daughter’s 20-year medical Odyssey, faith, EWOT and more
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…
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Founder Austin Walker on Building the AI Layer for Chronic Illness
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...
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Connecting the Dots in Long COVID with Dr. Robert Groysman
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…
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Tiffany Hoke DNP, Complex neurovascular patient turned expert helping others
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…
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Endometriosis with Dr. Tania Dempsey as part of the Mast Cell Matters series
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...
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Debra Hawkins, DNP, dysautonomia specialist with ER experience
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...
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Nicole, The Autonomic Coach and news reporter from Hawaii
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…
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Dr. Kamal Chemali on Music and Medicine
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...
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Moon and Mood: Tracking and managing hormone shifts with Krista Day-Gloe, LCSW
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…
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Tinsley on law school, a dream job, marriage, and making it work with severe POTS
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...
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Dr. Tania Dempsey on GLP-1s for MCAS, POTS and related conditions
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...
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A happy ending after surgeries, stenting, & a renal auto-transplant - with Simone Erdner, PhD
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…
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All about IV Infusions with Betsy Harmon, RN, CRNI, CPUI, VA-BC
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...
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Diaries with Amy on horses, family fun, and spending over half her life with POTS
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...
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Dr. Sally Daganzo on eating disorders, physical drivers of mental health and more
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...
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Elli (from ep 65) on new diagnoses and MALS surgery
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...
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The Long COVID Treatment Guide with Jen Curtin, MD and Charlie McCone
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...
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Aryn on athletics, adapting and advocating for oneself
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...
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Attorney Krysti Monaco on winning children's social security benefits
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…
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Cell membrane health with Dr. Melanie Stein on Mast Cell Matters with Dr. Tania Dempsey
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...
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Elizabeth on her comeback and book: The Toll it Took
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...
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Excessive sleep, fatigue and insomnia in POTS WITH Dr. Kirti Sivakoti
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...
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Julie on the lengths she had to go to for recovery
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…
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Dr. Dempsey’s cutting edge treatments (part 2) - Mast Cell Matters
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...
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Maggie on being both patient and Mental Health Therapist
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...
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The Dysautonomia Workbook with Joanna Behm, EDD OTR/L and Madison Thornton, OTD OTR/L
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...
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Dr. Casey Kelley on Mast Cell Matters
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,...
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Sophie on life after severe COVID
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...
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Attorney Nancy Cavey on disability benefits for POTS/dysautonomia
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,...
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Singer-songwriter Nellie Clay on “the hangover without the party”
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...
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Zac Spiritos, MD, MPH on neurogastroenterology with Dr. Tania Dempsey on Mast Cell Matters
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...
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Vascular surgeons Robert Hacker and Deena Chihade on venous compressions, stenting, and POTS
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...
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Genetic collagen disorders and vascular issues with Heather Perne, NP-C, CWS
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,...
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Sarah from FL on life after COVID/POTS/MCAS
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...
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Dr. Dempsey on leading edge treatments she is finding helpful
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...
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New (free) AI intelligence platform for patients with Dr. Jen Curtin
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...
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Jace on health policy, why “being a burden is a blessing”, and much more
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...
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Progress for the COVID vaccine injured with REACT19 Co-Chairman Brianne Dressen
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…
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Dr. Eboni Cornish on root causes of brain inflammation with Dr. Dempsey on Mast Cell Matters
This is a not-to-be-missed conversation for anyone interested in brain inflammation. Dr. Eboni Cornish, M.D. is Associate Medical Director at Amen Clinics, Fellow and Treasurer of the Board for the International Lyme and Associated Diseases Society (ILADS). With research training at the National...
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Live from the 12th annual Run for Research - interviews with participants
Our 12th annual 5k/2k took place virtually and at Wittenberg University in Springfield Ohio and raises funds for research to help today's struggling POTS patients. We interviewed several participants while they were waiting for the event to begin and got a chance to find out what brings them to…
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Dr. Robert Groysman on mechanisms, novel treatments, E.A.T., stellate ganglion block and more
Dr. Groysman is founder of the COVID Institute, where they treat POTS/dysautonomia, MCAS, ME/CFS, long COVID, and are reporting good outcomes with evidence-based treatments that are relatively novel in the U.S., such as stellate ganglion block, Epipharyngeal Abrasive Therapy (EAT), vagal nerve...
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ABOUT THIS SHOW
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, in which top MCAS practitioners share their experiences in better treating patients. You can learn more by listening to our groundbreaking POTScast anywhere, anytime. Visit our website at www.standinguptopots.org and follow our social media accounts @standinguptopots.
HOSTED BY
Standing Up to POTS, Inc.
CATEGORIES
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Frequently Asked Questions
How many episodes does The POTScast have?
The POTScast currently has 250 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is The POTScast about?
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...
How often does The POTScast release new episodes?
The POTScast publishes regularly with 250 episodes available. Check the episode list for the typical release schedule.
Where can I listen to The POTScast?
You can listen to The POTScast on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts The POTScast?
The POTScast is created and hosted by Standing Up to POTS, Inc..
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