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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 was associated with more severe GI and overall symptom severity, can be downloaded here, in the Journal of Health Science and Education. Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you! If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X/Twitter: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 manageable. That experience led her to build POTSie, a mobile app created to help others reduce the mental load of living with POTS and make daily life a little easier.  You can find her app at https://potsie.io/ 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist  Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 Long COVID as a “network disorder.”  In this episode, Dr. Groysman explains his mechanism-anchored model, in which six primary biological domains can interact with one another, amplify symptoms, and produce very different clinical presentations from patient to patient. The six primary domains include dysautonomia/POTS, mitochondrial and bioenergetic dysfunction, endothelial and microvascular dysfunction, gut dysbiosis and barrier disruption, mast cell activation/histamine-mediated signaling, and neuroendocrine/hormonal dysregulation. Secondary amplifiers may include persistent immune activation, viral antigen persistence, autoantibody formation, neuroinflammation, sleep-related destabilization, and small fiber neuropathy. In this episode he answers questions about his mechanism-based model of Long COVID, plus a practical approach to identify mechanism as described in latest publication, The Trigger-Timing Framework for Long COVID:  Using Symptom Triggers and Temporal Patterns to Guide Mechanistic Stratification and Guide Treatment.  Dr. Groysman also offers an online community for patients to ask questions and have discussions with him (and other members) at https://www.longcovidfamily.com/ 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist  Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 how it works, why they were inspired to create a new model, why they think there is increasing complex chronic illness, why working within the standard medical system is so limiting when treating complex chronic illness, and what research and treatments they are most excited about currently.  They also mention they are hiring providers. Links to mentioned resources: Dr. Kaufman's article on the use of low-dose rapamycin for fatigue and post-exertional malaise in ME/CFS Dr. Kaufman's presentation at Stanford University's Community Symposium on the Molecular Basis of ME/CFS on 9/11/26:  Rebooting the System: mTOR, Autophagy, and Low Dose Rapamycin (link to video will be added when it gets released). Case report on amlexanox helping a few patients with MCAS. 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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) products. Our guest is Scott Cole, founder of Cole & Van Note, a law firm with more than 30 years of experience in civil rights, consumer, and class action litigation. Scott and his firm are leading a legal effort challenging the widespread practice of pumping synthetic fragrance into public buildings—an issue that can make these spaces difficult or impossible to access for people with chemical or fragrance sensitivities, including many patients living with conditions such as POTS and MCAS. In this conversation, Scott explains his firm’s current investigation and litigation against major hotel chains and other businesses using synthetic fragrances, why fragrance accessibility may be a civil rights issue, and what patients and advocates need to know as this area of law develops. Dr. Tania Dempsey shares how synthetic fragrances can be toxic even to those who don't feel symptoms from them, and how MCAS flares initiated by fragrance exposures may last for weeks or months.  She also shares statistics showing that fragrance intolerance is not rare. Anyone interested in participating in the law firm's campaign against fragrances can learn more or submit their information here. Attorney Scott Cole's book, Fallout, can be found 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/donate Tell us what you think of The POTScast or send us your idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X/Twitter: https://twitter.com/POTSActivist  Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 neuropathy and more.  She recounts some of the treatments she has had -- including IVIg, EBOO, and even brain surgery -- and challenges encountered.  She ultimately co-founded CANrise19.com, a non-profit to bring support, awareness and fellowship to other patients in her situation. Michelle will be testifying at the Allison Inquiry.On September 8, 9, 10 and 11, 2026, the Allison Inquiry will be listening to the testimony of Canadians injured by a Covid-19 vaccine. The Inquiry will be broadcast live from Parliament Hill in Ottawa. The Allison Inquiry represents the first time that Canadian lawmakers will be listening to Canadians about their experiences with the Covid-19 vaccines. 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist  Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 shares findings and lessons from one case report and 3 recent research publications: Impact of Excessive Postural Tachycardia on Disability in Youth with Orthostatic Intolerance, in Journal of Pediatrics - In this study, they found that functional disability was the same between patients with chronic orthostatic intolerance, regardless of whether their heart rate increase on the tilt table test or active stand test met the POTS criteria of 40+bpm.   Autonomic Dysfunction and Postural Orthostatic Tachycardia Syndrome: What Every Frontline Clinician Needs to Know:  - this article educates frontline clinicians on how to recognize POTS and initiate treatment, what other diagnoses to rule out and when a referral to specialists is appropriate.  It is intended to help PCPs and other frontline clinicians learn to manage POTS to reduce delays in care. Parent-Child agreement on functional disability in chronic orthostatic intolerance .  In this study, parents and children had a high correlation of rating of the child's functional disability, suggesting that that they are largely interchangeable for clinical or research purposes. More information about Dr. Sivakoti and her practice is 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/donate Tell us what you think of The POTScast or send us your idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/ Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 internally inconsistent in 39% of 100 commonly prescribed drug formulations examined. For patients who react to excipients and rely on these labels to choose safer formulations, inaccurate, conflicting or confusing  information can have serious consequences. Today we continue that conversation with Mike, along with Nicole and Jeff Allen.  Nicole is a nurse who has MCAS and reacts to several excipients. Jeff brings 25 years of experience as a data solutions architect working with medical and pharmacy claims.  Their motivation to solve this problem is deeply personal. After Nicole experienced repeated severe reactions to a medication excipient that landed her in the ICU for 6 days, Jeff set out to understand the problem and then build a better solution:  ExciIQ. Together, they discuss the real-world challenges facing excipient-sensitive patients, why current drug-labeling data can make avoiding a known trigger so difficult, and how ExciIQ hopes to help patients and healthcare professionals have better options for avoiding problematic excipients in their medications. Learn more: ExciIQ: exciiq.com Previous POTScast episode: Drug Excipients and Label Inconsistencies with Data Scientist Mike Brook Published research: Inconsistent excipient listings in DailyMed: implications for drug safety 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 SOT therapy in more depth can be found here. Dr. Dempsey's website is https://drtaniadempsey.com/ If you have questions for Dr. Dempsey about mast cells and related topics, you can send them to [email protected]. 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 through it all.   Here are the links for the mentioned RTHM Intelligence platform and the Long COVID Treatment Guide. 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 on himself. That experience turned him into a patient trying to solve this for complex chronic illness, and he's been working on turning what he learned into a product:  Atlas. In this episode he shares his story of getting sick, learning our health care system isn't designed for complex patients, finding his path back to being largely better again, and now being back to work as a founder creating Atlas.   Website:  https://theatlasnetwork.ai/ Link to signup: https://chat.theatlasnetwork.ai/ Link to the Atlas Discord: https://discord.gg/YPFgKJAMke 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 Long COVID as a “network disorder.” In this episode, Dr. Groysman explains his mechanism-anchored model, in which six primary biological domains can interact with one another, amplify symptoms, and produce very different clinical presentations from patient to patient. The six primary domains include dysautonomia/POTS, mitochondrial and bioenergetic dysfunction, endothelial and microvascular dysfunction, gut dysbiosis and barrier disruption, mast cell activation/histamine-mediated signaling, and neuroendocrine/hormonal dysregulation. Secondary amplifiers may include persistent immune activation, viral antigen persistence, autoantibody formation, neuroinflammation, sleep-related destabilization, and small fiber neuropathy. Dr. Groysman discusses how this network model may help patients and clinicians move beyond symptom labels and toward more individualized, mechanism-informed evaluation and treatment strategies for Long COVID and related complex chronic presentations  Dr. Groysman also offers an online community for patients to ask questions and have discussions with him (and other members) at https://www.longcovidfamily.com/ 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist  Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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, surgeries, stents, dietary and lifestyle modifications Tiffany reports being again functional, happy, relatively pain-free, and pursing her passion to continue gaining expertise in neurovascular and neurometabolic conditions and helping others via her consulting/coaching/clinical services at OurNeuroNetwork.org.  Tiff's information is below:  Tiffany Hoke DNP, RN, RNP, APRN-RX, AGACNP-BC, SCRN, CNRN Our Neuro Network Neuroscience and Neurovascular Nurse Practitioner | Coach | Consultant | Podcast HostWebsite:  www.ourneuronetwork.org 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/ Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 is mentioned: Successful mast-cell-targeted treatment of chronic dyspareunia, vaginitis, and dysfunctional uterine bleeding Dr. Dempsey's website is https://drtaniadempsey.com/ If you have questions for Dr. Dempsey about mast cells and related topics, you can send them to [email protected]. 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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ X: https://twitter.com/POTSActivist Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

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 first-line treatment approaches, the importance of addressing underlying conditions, and how patients can advocate for themselves.  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 idea at [email protected]! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist  Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.