The POTScast

Dr. Anjali Agarwal - consulting physiotherapist trained in UK, located in India, and consulting via telemed around the world - is a wealth of information on POTS and related conditions, describing how "everything is connected", which also presents many treatment opportunities.  She shares numerous lifestyle strategies to manage POTS/dysautonomia, MCAS, hypermobility and related conditions, and she...

We have the entire medical/production team of 5 physician/researchers to give us an update and behind-the-scenes look at the documentary they are making about the trifecta of dysautonomia/POTS, MCAS and hypermobility spectrum disorders.  We hear from doctors Tania Dempsey, Larry Afrin, Linda Bluestein, Lawrence Kinsella and Leonard Weinstock, along with patient Jill Brook, to hear how filming is g...

Despite Leah being largely bedbound, Tim and Leah's relationship is as strong as ever. How do they balance illness, household chores, and raising their children? Find out in this heartwarming episode. You can read the transcript for this episode here:  http://tinyurl.com/potscast185 If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved,...

Dr. Tania Dempsey interviews Dr. Eva Nagy, a breast surgeon experienced in all sorts of breast surgeries, who has developed special interest and skill in treating breast implant illness (BII), which she believes can be related to mast cell activation syndrome (MCAS).  Dr. Nagy describes BII, how she removes problem implants, and the effects this can have on a wide range of symptoms. You can learn...

In this episode, Nutritionist Jill Brook reviews the research findings on nutrient deficiencies in POTS, shares some tips, and directs listeners to a great resource for finding which lab tests are recommended by our Medical Advisory Board to determine whether nutrient imbalances may be a factor for you. With Jill’s husband as this week’s interviewer, we also learn about some nutrient experiments a...

Quinton loves to work out and research Long COVID. About two weeks after recovering from a mild COVID infection, he developed POTS and found himself nearly bedridden. He has slowly worked his way back toward being functional, although he still has significant limitations. You can read the transcript for this episode here:  http://tinyurl.com/potscast182 If you liked this episode, we hope you will...

Dr. Alexis Cutchins wrote a comprehensive review of POTS, including less-known treatments like oral contraceptives, gluten-free diets, and diosmin. Join her in thinking about promoting good blood flow that might decrease other POTS symptoms. Dr. Cutchin's review paper on POTS: https://www.uscjournal.com/articles/narrative-review-postural-orthostatic-tachycardia-syndrome-associated-conditions-and Y...

Emily was working as a medical assistant when she developed POTS. While she was aware of POTS, receiving a proper diagnosis still took 7 or 8 months. Many practitioners were dismissive of her symptoms, leading to a delay in treatment. You can read the transcript for this episode here:  https://tinyurl.com/potscast180 If you liked this episode, we hope you will click subscribe so that you don't mis...

Leah's life changed after her family got sick in December 2019. They rebounded in a couple of weeks, but she did not. She was diagnosed with POTS quickly, but remains largely bedbound and has had to shift her perspective to use her energy wisely for her family. 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...

Dr. Settle is a psychiatrist who believes that mast cell activation is responsible for some symptoms of anxiety, depression, bipolar disorder type II and others. She treats MCAS as a way to stabilize both mast cells and their emotional state. You can read the transcript for this episode here:  https://tinyurl.com/potscast178 If you liked this episode, we hope you will click subscribe so that you d...

Perceived burdensomeness, feeling like a burden to friends and family, is common in POTS patients. This feeling can be a predictor of suicidal thinking, particularly in men. We can change feelings of burdensomeness - find out how in this episode! You can read the transcript for this episode here:  https://tinyurl.com/potscast177 If you liked this episode, we hope you will click subscribe so that y...

Happiest holidays from everyone at Standing Up to POTS!

Hanna had a 15-year journey to her POTS diagnosis after fainting episodes that started in her teens. An avid athlete, she has completed a triathlon and climbed mountains in her less symptomatic days. 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.standing...

Dr. Lewan, a POTS patient with a CSF leak, helps many patients learn how to listen to their bodies and slowly progress in their physical therapy exercises. An understanding practitioner can make all the difference in assisting POTSies to live their best lives! You can read the transcript for this episode here:  https://tinyurl.com/potscast175 If you liked this episode, we hope you will click subsc...

Resilience is a nuanced topic. How do you build it? Is it always a compliment if someone says you are resilient? How can we better support our chronic illness community? Dr. Gorman-Ezell discusses it all! You can read the transcript for this episode here:  https://tinyurl.com/potscast174 If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so mo...

Kaylee is an ER nurse in Phoenix and shares her own story along with tips on how to get the most out of an ER visit, like telling the triage nurse everything gets you proper care faster. She has POTS, EDS, and MCAS and is delightful! 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...

MCAS expert Dr. Bluestein is an anesthesiologist and pain specialist focusing on hypermobility and its associated pain syndromes. Having EDS and her own pain, she discusses the use of opioids, ketamine, pain programs in this population, and much more! You can read the transcript for this episode here:  https://tinyurl.com/potscast172 If you liked this episode, we hope you will click subscribe so t...

Attorney Drew Downing is prosecuting a case against Merck on behalf of people who were vaccine-injured by the HPV vaccine Gardasil. He is knowledgeable about POTS and the legal system, providing insights that might help some POTS patients to gain compensation for their injuries. For more information, visit: https://www.wisnerbaum.com/prescription-drugs/gardasil-lawsuit/ is the law firm mentioned i...

What do POTS, ecstasy, dehydration and thirst have in common? This is a fascinating episode with Dr. Harriett Carroll, who developed POTS after the COVID vaccine. She now uses scientific expertise to help others through chronic invisible illness. Her website: http://www.lc-sc.co.uk/ Twitter: @angryhacademic You can read the transcript for this episode here:  https://tinyurl.com/potscast170 If you...

What a fabulous episode of the POTScast taped before our in-person 5K/2K. POTS patients and their loved ones spoke from their hearts to give an authentic glimpse of the ups and downs of living with a chronic illness like POTS. We are proud to serve this community, and touched by their stories. You can read the transcript for this episode here:  https://tinyurl.com/potscast169 If you liked this epi...

Dr. Karissa Arca works at the intersection of autonomic and headache disorders at Mayo Clinic Arizona.  She is a wealth of information and also an advocate for patients. Join us to learn more about headache management for POTS patients. You can read the transcript for this episode here:  https://tinyurl.com/potscast168 If you liked this episode, we hope you will click subscribe so that you don't m...

In this episode, we cover POTS demographics, where sodium goes in the body, off-label medications, why meds stop working, and much more. Thanks to all who submitted questions! The papers discussed in this episode for medications and dosages: Fedorowski paper 2018: https://onlinelibrary.wiley.com/doi/full/10.1111/joim.12852 Raj paper 2022: https://www.cmaj.ca/content/194/10/E378 You can read the tr...

Lauren was a college tennis player and was always on the run when she developed COVID, Long COVID and POTS. At 23, her life is different now, and she continues to search for her new normal. You can read the transcript for this episode here:  https://tinyurl.com/potscast166 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...

Dr. Weinstock and Dr. Dempsey are spearheading the creation of a documentary about MCAS, POTS, and EDS. Still in the planning stages, this documentary intends to educate medical professionals and the general public. We hope that it will help raise awareness! Link to the LDN Research Trust: https://ldnresearchtrust.org/mast-cell-activation-syndrome-documentary You can read the transcript for this e...

Vaccine injury can occur after COVID injections, likely triggered by the COVID spike protein. Many people develop POTS or have worsening symptoms. Unfortunately, this can transform a healthy individual into a significant chronic illness that may impact mental health. Websites discussed in this episode: https://www.awarenessforpotsies.org and https://www.hrsa.gov/cicp You can read the transcript fo...