The POTScast - podcast cover

The POTScast

Standing Up to POTS, Inc.the-potscast.castos.com
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.
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Episodes

E146: Research on Long COVID and POTS with Marie Claire Seeley

The pandemic has provided a unique opportunity to study new onset POTS cases with a known trigger - COVID. The symptom similarities are striking between those with POTS and Long COVID in this Australian research study. A great listen! You can read the transcript for this episode here: https://tinyurl.com/potscast146 You can their Long COVID paper here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10307671/ and their quality of life paper here: https://link.springer.com/article/10.1007/s10286-023...

Jul 03, 202348 minSeason 2Ep. 146

E149: Tried all the recommendations? What to do next?

Jill and Dr. Cathy Pederson discuss what to do after you have exhausted practitioner recommendations. There are lots of ideas provided, as well as tips on how to evaluate each potential new treatment. Great episode for those of us holding onto hope of symptom improvement. You can read the transcript for this episode here: https://tinyurl.com/potscast149 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 he...

Jun 27, 202352 minSeason 2Ep. 149

E148: POTS Diary with Nicole from Texas, news reporter who got a POTS story on the Today Show

Nicole's career as a news reporter in Anchorage, AK and Raleigh, NC was cut short when she developed POTS. While her symptoms have improved since that time, she is still not able to be upright enough to return to that career. Despite that, she pitched a story on POTS to the Today Show and was aired the following week. Thanks, Nicole, for helping to raise awareness about POTS! Today Show POTS story: https://www.today.com/video/covid-19-linked-to-crippling-heart-condition-pots-158971973791 You can...

Jun 24, 202332 minSeason 2Ep. 148

E147: Gynecological Issues & Pregnancy in MCAS with Dr. Shanda Dorff

After issues with her own MCAS, Dr. Shanda Dorff started to investigate the impact of MCAS on people with a variety of gynecological issues like pelvic pain, heavy bleeding, etc. and during pregnancy. She has written a journal that allows patients to track the symptoms that doctors need to diagnose. Thanks, Dr. Dorff, for sharing with us! You can read the transcript for this episode here: https://tinyurl.com/potscast147 If you liked this episode, we hope you will click subscribe so that you don'...

Jun 20, 202358 minSeason 2Ep. 147

E145: POTS Diary with POTS Parent Leigh from Washington DC

In retrospect, Leigh's daughter had symptoms since age 4, but her daughter's POTS wasn't diagnosed until she was a teenager. Leigh describes the struggle of the parent - worry, grief, questioning decisions, the helplessness that comes with navigating your child's chronic illness. It's a great episode! You can read the transcript for this episode here: https://tinyurl.com/potscast145 Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us r...

Jun 10, 202332 minSeason 2Ep. 145

E144: Gut motility in POTS with Dr. Linda Nguyen

Dr. Linda Nguyen is a gastroenterologist who sees patients with POTS, EDS, and ME/CFS. She explains gut motility issues, nausea, and how to best prepare for an appointment. Down to earth, practical explanations about complex GI problems. You can read the transcript for this episode here: https://tinyurl.com/potscast144 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 ...

Jun 06, 202333 minSeason 2Ep. 144

E143: POTS Diary with Victoria from New Jersey, a chemical engineering student and cyclist

Victoria is a busy college student who commutes to school on the train daily. She is a competitive cyclist, likes to run, and hopes to contribute to the POTS community by helping to develop or engineer pharmaceuticals. You can read the transcript for this episode here: https://tinyurl.com/potscast143 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...

Jun 03, 202331 minSeason 2Ep. 143

E142: Unravelling Medical Complexities with Dr. Ilene Ruhoy and Dr. David Kaufman

Drs. Ruhoy and Kaufman specialize in people that suffer from several chronic invisible illnesses. Thinking about them as a cluster and then breaking diagnosis and treatment down into pieces can help all physicians treat POTS, ME/CFS, and MCAS. They also regularly look for anatomical problems in their patients, which medication alone cannot fix. Link to their podcast: https://www.patreon.com/posts/introduction-75440859 You can read the transcript for this episode here: https://tinyurl.com/potscas...

May 30, 202347 minSeason 2Ep. 142

E141: POTS Diary with POTSpouse Stephen

Stephen's wife Becca developed POTS two years ago, and he shares the caregiver's perspective about POTS. As a young couple with a toddler, taking care of himself so that he can take care of his family is important. We are thrilled that he was willing to share his story and his perspective with us! You can read the transcript for this episode here: https://tinyurl.com/potscast141 Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach...

May 27, 202325 minSeason 2Ep. 141

E140: Romance and Relationships in Chronic Illness with Dr. Katie Gorman-Ezell

Communication is important in any relationship, but is key when one partner is chronically ill. Understanding how each partner receives love is another important step in maximizing the impact for your partner while still conserving your energy. There are many practical tips for maintaining your relationship in this episode! Want to learn your love language? Check out https://5lovelanguages.com/ You can read the transcript for this episode here: https://tinyurl.com/potscast140 Please click the "s...

May 23, 202332 minSeason 2Ep. 140

E139: Diary with Becca, proud mom from Utah who developed POTS after food poisoning

Becca has a fascinating and most unusual story about her POTS trigger - food poisoning from 1000 year eggs while on a mission trip in Hong Kong. She is currently pregnant, and feeling extra POTSie as a result. Regardless, she is optimistic and shares her story to help others. You can read the transcript for this episode here: https://tinyurl.com/potscast139 Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just lik...

May 20, 202344 minSeason 2Ep. 139

E138: Advice from Both Sides of Healthcare with Dr. Melanie Hoppers

Dr. Melanie Hoppers has a unique perspective on POTS - she learned of it when her daughter became ill and now dedicates her medical career to patients with POTS, ME/CFS, MCAS and long COVID. Join us for this fascinating healthcare system episode from the patient and physician perspective. You can read the transcript for this episode here: https://tinyurl.com/potscast138 If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://...

May 16, 202330 minSeason 2Ep. 138

E137: Update on Long COVID with Dr. Noah Greenspan

Dr. Noah Greenspan returns to the show to update us on long COVID patients. He also discusses recovery strategies for COVID, prevention of long COVID, and oxygen therapies that seem helpful anecdotally. You can read the transcript for this episode here: https://tinyurl.com/potscast137 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 pro...

May 09, 202340 minSeason 2Ep. 137

E136: POTS Diary with Hannah from South Carolina, who developed POTS after a traumatic brain injury

Hannah fell after getting a vaccination, and this caused significant brain trauma. As a result, she developed both POTS and SIADH (syndrome of inappropriate antidiuretic hormone secretion). Despite this injury and dealing with ongoing health issues, she remains optimistic and lives each day to its fullest. You can read the transcript for this episode here: https://tinyurl.com/potscast136 Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps...

May 06, 202328 minSeason 2Ep. 136

E135: Gastrointestinal Manifestations of MCAS with Dr. Leonard Weinstock as part of the Mast Cell Matters series

Dr. Weinstock, a gastroenterologist who is a leading expert on MCAS, discusses mast cells in the context of the GI tract. Bloating, gas, SIBO, SIFO, and IBS are all discussed in this episode. In addition, he shares how he prescribes LDN for his patients. There is a ton of great information in this episode for patients and practitioners alike! You can read the transcript for this episode here: https://tinyurl.com/potscast135 Please click the "subscribe" button so that you don't miss an episode of...

May 02, 202344 minSeason 2Ep. 135

E134: POTS Diary with Jessie, who was diagnosed with POTS as a teen but didn't receive treatment until much later

Jesse's journey through POTS was a little different. She was diagnosed fairly quickly, but it took years for her to find a doctor who gave her proper treatment. Her life is so much better today - a supportive partner, hobbies for the good and bad days, and a really optimistic attitude. Her story is inspiring! You can read the transcript for this episode here: https://tinyurl.com/potscast134 Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also he...

Apr 29, 202322 minSeason 2Ep. 134

E133: The Foundations of Health with Dr. Gregory Plotnikoff

Dr. Plotnikoff practices holistic medicine, and thinks deeply about the role of healthcare for patients. He shares his views on honoring patients, considering alternative explanations, and the foundations necessary for good health in this episode. You can read the transcript for this episode here: https://tinyurl.com/potscast133 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 epis...

Apr 25, 202339 minSeason 2Ep. 133

E132: Katie from Ohio, who developed POTS as a teen and a more severe form after COVID

Katie developed POTS as a teen, and controlled it well enough to work as a respiratory therapist. A bout with COVID kicked her POTS to an entirely new level that she struggles to control. She has a unique perspective on how the healthcare system has changed with respect to POTS over time. You can read the transcript for this episode here: https://tinyurl.com/potscast132 Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other pe...

Apr 22, 202325 minSeason 2Ep. 132

E131: Sofie from MI and her research on Emotional Intelligence

Sofie is a delightful, articulate teen who is conducting a research project on the emotional intelligence of women with POTS. As you might guess, her early results show that it is off the charts! Join Sofie for an explanation about how the two might be connected. You can read the transcript for this episode here: https://tinyurl.com/potscast131 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...

Apr 18, 202339 minEp. 131

E130: Health Willpower Strategies with Nutritionist Jill Brook

Join our own Jill Brook to think about 10 strategies to help you build your willpower for healthy eating and other healthy habits. Willpower can be learned with practice, so don't worry if it doesn't come naturally to you. Filled with humor and great information, this episode is a must listen! You can read the transcript for this episode here: https://tinyurl.com/potscast130 Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach oth...

Apr 11, 202337 minSeason 2Ep. 130

E129: MCAS Diagnostic Criteria “Consensus-2" with Dr. Lawrence Afrin as part of the Mast Cell Matters series

Dr. Afrin, a world expert in all things mast cell, talks in depth about issues with the first MCAS "consensus" statement and the need for a second MCAS consensus statement so that patients can be treated even if their lab tests don't show an elevation of tryptase levels. This opens the diagnostic door to many additional patients so that they can get the treatment that they need. You can read the transcript for this episode here: https://tinyurl.com/potscast129 Please click the "subscribe" button...

Apr 04, 202355 minSeason 2Ep. 129

E128: Belle from Canada, saline and physiotherapy helped her walk across her graduation stage

Belle first realized that something was wrong at 16. Living in Greece didn't help, but upon return to Canada she started to find some answers. Her goal? Walk across her high school graduate stage. Find out how she was able to accomplish that while battling POTS. You can read the transcript for this episode here: https://tinyurl.com/potscast128 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 ...

Apr 01, 202328 minSeason 2Ep. 128

E127: New Clues in Plasma Proteins in POTS Patients with Dr. Artur Fedorowski

Dr. Fedorowski is one of the top POTS researchers in the world. This episode discusses plasma proteins that are different in POTS patients vs. controls. What might this mean? What is his new POTS symptom instrument? It's a great episode with a top POTS doc! Link to the article discussed in this episode: https://www.nature.com/articles/s41598-022-24729-x You can read the transcript for this episode here: https://tinyurl.com/potscast127 Please click the "subscribe" button so that you don't miss an...

Mar 28, 202348 minSeason 2Ep. 127

E126: Home Infusions with Jonathan Abraham, RN BSN CCRN

Jonathan shares his experience as a nurse who has been doing home infusions for patients needing IVIG. He talks about the highs and lows of his job with humor. You can read the transcript for this episode here: https://tinyurl.com/potscast126 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...

Mar 21, 202317 minSeason 2Ep. 126

E125: POTS Diary with Dr. Alisha Alls, who suffered traumatic brain injury leading to her POTS

Dr. Alls suffered a traumatic brain injury, had her heart stop, and developed POTS as a teenager. She speaks eloquently about her life experiences and how they have shaped her into the person she is today. This is a must listen episode! You can read the transcript for this episode here: https://tinyurl.com/potscast125 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 hop...

Mar 18, 202333 minSeason 2Ep. 125

E124: Pregnancy in POTS Patients with Nurse and Doctoral Candidate Kate Morgan

Kate Morgan and her team just published a paper studying pregnancy in women with POTS. She found that having a baby is safe, as is taking certain medications during the pregnancy. If you have POTS and are considering getting pregnant, this is a must listen episode! Paper being discussed: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9795856/ You can read the transcript for this episode here: https://tinyurl.com/potscast124 Please click the "subscribe" button so that you don't miss an episode of T...

Mar 14, 202348 minSeason 2Ep. 124

E123: Argenx Clinical Trial on Post-COVID POTS

Registration is currently open for a clinical trial on post-COVID POTS investigating a new medication that might deplete autoantibodies and decrease POTS symptoms.This is an exciting development for the entire POTS community, as this attention to POTS may lead to a more effective treatment for many people currently living with the disorder. If you are at least 18, had PCR confirmed COVID and then developed POTS, then learn more about this clinical trial: https://www.alphastudyforpots.com Please ...

Mar 11, 202354 minSeason 2Ep. 123

Research Study on The POTScast - please participate!

You can take this IRB approved survey at: https://docs.google.com/forms/d/e/1FAIpQLSfrkhyR4cRW9DEB8O4Pvbs9kWuQIlCtZ3gs31J6E55tMoquxg/viewform Requirements: You must be 18, have a chronic illness like POTS, and listen to The POTScast or another chronic illness podcast. Time commitment: Approximately 15 minutes Kate Pederson and Dr. Melanie Finney are researchers at DePauw University and are interested in how people might use podcasts as a form of social support especially for people who may have ...

Mar 09, 20232 min

E122: Mast Cell Matters: Diagnosis and Treatment of MCAS with Dr. Tania Dempsey

Dr. Dempsey shares her experience in both diagnosing and treating people with MCAS. She always looks for POTS and orthostatic symptoms during diagnosis, as these are often comorbid disorders. Antihistamines and other major medications commonly used to treat MCAS are also discussed. You can read the transcript for this episode here: https://tinyurl.com/potscast122 Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people ju...

Mar 07, 202338 minSeason 2Ep. 122

E121: Diary with Shelby from KY, a mom who loves to sing and have fun

Despite POTS, Shelby is a vivacious mom of two small children who is still on her POTS journey. IV fluids help, as does compression and staying hydrated. Listen to this wonderful interview! 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...

Mar 04, 202334 minSeason 2Ep. 121
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