POTS Diaries with Sam, sharing her POTS and seizures on TikTok

Dr. Boris is a Pediatric Cardiologist, Pediatrician, and leading expert on pediatric POTS.  Here he explains his team's new findings about the genetic signals found in pediatric POTS patients:   What they found, what this might mean for our understanding of POTS, and more.  He also shares findings from his latest publication on longterm outcomes in POTS, and shares which hormones/oral contraceptives are helping some of the many patients who have worsening symptoms near menses.  Dr. Boris is full of information and valuable nuggets, so don't miss this episode if you are interested in pediatric POTS. Dr. Boris's genetics article is here. Dr. Boris's first article on long-term POTS outcomes is here. Dr. Boris's second article on long-term POTS outcomes is here. Dr. Boris's website 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 info@standinguptopots.org! 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.

1 Syys 45min

Please join us in Going The Distance for POTS Research by participating in our 12th annual 5k/2k event, which can be done virtually or in person at the Wittenberg campus in Springfield, OH.  More information and registration is at https://www.standinguptopots.org/annual-5k

31 Elo 1min

Mackenzie from Massachusetts enjoys all kinds of artistic pursuits including writing and illustrating her own children's book.  In this episode she describes her journey, including how a TikTok video helped her discover and manage her own POTS a couple years before the medical system diagnosed her. 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 info@standinguptopots.org! 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/

24 Elo 26min

MCAS doesn't ignore the nether-regions, so in this episode, Dr. Dempsey discusses symptoms and treatments in the genitourinary and surrounding areas, including some novel uses of antihistamines and mast cell stabilizers, as described in this research article.  She also answers listener questions about hormones, hormone replacement, reactions to ultrasounds and ultrasound gel (this is the gel with fewer known allergens), and more. Dr. Dempsey's website is here: 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 info@standinguptopots.org! 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.

16 Elo 50min

Bria started having symptoms in college, as an art and theater major, and told her doctor she suspected POTS. It still took her 8 more years to get a formal diagnosis.  Bria is still looking for better solutions and answers (using ChatGPT), constantly experimenting and also working on acceptance.   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 info@standinguptopots.org! 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.

9 Elo 45min

Dr. Asad Khan was a pulmonologist on the front lines of COVID in Manchester England when he became a long COVID patient himself.  Now retired due to chronic illness, he is a leader in patient advocacy and has contributed to cutting edge research related to hypercoagulation and micro-clotting in long COVID and related conditions.  In this episode he discusses the research and his own experiences with treatments for long COVID and micro-clots.  Off-label and experimental treatments are discussed as part of Dr. Khan's experience, and are not meant to be recommendations.  Consult your doctor about what treatments may be right for you. You can follow and find Dr. Khan online at @doctorasadkhan Associate, Doctors with ME Champion, Long Covid Kids 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 info@standinguptopots.org! Find out more about Standimg 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.

4 Elo 1h 9min

Having POTS, myocarditis, COVID and a heart attack right before your 40th birthday is not for the faint of heart, but Randi is a smart, strong, stoic surgical nurse who tells us all about it and more in this episode.  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 info@standinguptopots.org! 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.

29 Heinä 30min

Caelum Schild is a Senior Exercise Physiologist in Adelaide Australia who specializes in POTS and related conditions. In this episode he describes some of the tools he uses, such as tVNS (transcutaneous vagal nerve stimulation) and HRV (heart rate variability), sharing some important research findings plus his clinic experience with these therapies.  Caelum's website is https://loftyhealth.com.au/ 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 info@standinguptopots.org! 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.

20 Heinä 50min