The POTScast

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:/...

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...

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...

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. Subscribin...

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...

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...

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/ Y...

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...

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,...

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...

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 c...

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:  htt...

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 Pleas...

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 episod...

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 "subscrib...

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'...

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 "sub...

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 t...

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...

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...

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 li...

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 PO...

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:...

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...

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 int...