The POTScast

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, CNRNOur Neuro NetworkNeuroscience 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.

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 Autonomic Coach' and to help educate about dysautonomia, including speaking to healthcare practitioners earning their CME credits.    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.

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 power of music in connecting people and in healing disease led him to start the Doctor-Patient Music Connection Program, where physicians and musicians perform for patients in the hospital, and also the award-winning Music and the Brain™ Concert-Lectures.  He was the co-founder of the Cleveland Clinic Arts and Medicine Institute and the Founding Director of the Sentara Music and Medicine Center.  Today he is the Medical Director of the Music and Medicine Program in the Neurological Institute at Case Western Reserve University. In this episode he discusses what is known about the power of music to affect mood, heart rate, pain, energy, and his research into how aspects of music, such as tempo or harmony, may affect the body.  He discusses music therapy and shares his personal favorite pieces of music with us. 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.

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, sleep, digestion, and nervous system states—so they can recognize patterns and build supportive routines through each phase of the cycle.  In this episode she shares practical information about understanding, tracking and managing the normal hormonal shifts that can affect so many symptoms.  She also has a generous discount code for listeners (see below). Krista's Website: https://healingrootswellnesscenter.com Mood & Moon Workbook: https://healingrootswellnesscenter.com/body-led-books/mood-moon/ Body-Led Mental Health Blog: https://bodyledmentalhealth.substack.com Hormone Literacy Initiative: https://healingrootswellnesscenter.com/hormone-literacy-initiative/ 50 % discount code for digital products: POTS 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/...

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 debilitating symptoms.  And yet, she graduated college and law school, worked her dream job, got married and has a very full life.  In this episode she discusses her journey and how she's managed her POTS enough to have a full life again. 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.

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 mast cells and related topics, you can send them to [email protected]. Dr. Dempsey's published article about GLP-1 treatments in MCAS is here. Dr. Dempsey's website is https://drtaniadempsey.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/ 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.

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 received a stent, and Nutrcracker Syndrome, for which she underwent a renal autotransplant surgery to move her kidney.  After 7 surgeries in 2 years, Simone feels she got her life back, and has created The Nutcracker Syndrome Podcast to share her experiences, advice, lessons learned, and much more. Simone's Instagram page: https://www.instagram.com/doc_serdner/ and an Instagram page for her Nutcracker Syndrome podcast: https://www.instagram.com/nutcrackersyndrome.podcast/. 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.  

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 effective infusions, what infusion nurses are looking for and thinking about as they care for infusion patients, what patients can do to help infusions go more easily, and answers listener questions about infusions.  Betsy is also a special guest because she is the nurse that cancelled a dinner date to work late giving Jill the emergency infusion that got her on the road back to better health when she couldn't stop passing out and fainting. 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.

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 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.

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 decide to start her own clinic, whose website is https://www.sallydaganzomd.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 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.

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, pelvic venous disease, venous insufficiency and more.  In this episode she shares her professional and personal insights from the lens of vascular and genetic medicine.  Questions can be emailed to Heather at [email protected].  No referral is needed unless the patient's  insurance requires it. 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.