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

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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.

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. 

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Find out more about Standing Up to POTS! Check us out on our
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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.

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 [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
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Twitter: https://twitter.com/POTSActivist
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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.

Kai has severe ME/CFS, and is using precious energy for this episode to help us understand what life is like with profound energy limitations: what an average day is like, the price paid for doing basic activities, what it's like to pass the time avoiding sound and light, and what more people should understood about severe profound ME/CFS. Kai wrote this document for anyone who wants to learn 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
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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. Todd Maderis is a naturopathic physician in Marin, CA, who began his career in environmental medicine and now specializes in helping complex patients by searching for the root causes of their illness.  He and Dr. Dempsey discuss their hypotheses about how and why some patients can get so sick, their favorite newer tests and treatments -- including genetic testing, SOT, phosphatidylcholine -- and how excess fibrin production may contribute to excessive blood coagulation and biofilms that help infections hide from treatment.  And much more!  Drs. Maderis and Dempsey cover a wide range of topics and compare notes on their approaches to helping the most complex patients.

Dr. Maderis's website and blog is here.

Dr. Dempsey'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

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Find out more about Standing Up to POTS! Check us out on our
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Clare is a law student who has a genetic condition that causes epileptic seizures, which may have ultimately led to POTS.  She is unfortunately highly experienced in losing consciousness.  But she is still rocking law school (and studying health law) and in this episode discusses how she makes it all work. 

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
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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. Jennifer Curtin is using the latest technologies to improve patient care and offerings.  She was a ME/CFS patient herself when she went to medical school, and now is Medical Director of the RTHM Clinic.  Dr. Curtin describes her approach to care including traditional clinic care plus several innovative offerings that allow patients easier and remote access to common safe treatments for dysautonomia, MCAS, ME/CFS, long COVID and other common comorbid conditions.  Her team has also created  programs that can use HIPAA compliant artificial intelligence to review medical records for potential clues, suggested tests or treatments, and much more.  Don't miss this episode if you want a potential view of the future of medical care for complex patients.

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 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
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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.

Alici'a has spent a LOT of time hugging garbage pails, due to extreme nausea, and she did not get the support she hoped from her school or  insurance company, but that didn't keep her from figuring out how to graduate high school, get accepted to college with needed accomodations, and feel she has become a better person for the challenges.

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
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Twitter: https://twitter.com/POTSActivist
Pintrest:

This is an excellent discussion for patients and practitioners alike who are interested in the connections between MCAS, POTS, venous compression, pelvic venous disorder, and MALS.  Cardiologist Dr. Cutchins and Dr. Tania Dempsey share tons of information plus their latest thinking on how to treat patients with these complex presentations, including an in-depth conversation about how MCAS patients are faring with stenting procedures for venous compressions.

You can follow Dr. Cutchins on Instagram at @drcutchins

Dr. Cutchins’s website is here.

Dr. Dempey’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 [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:

Caitlyn was a 4th grade teacher, mom, group fitness instructor and general ball of energy until she got Mononucleosis.  Faced with all sorts of challenges, including losing relationships because her health was "too much", what did she do?  She wrote.  And it evolved into a book about her experiences and included thoughtful questions for readers, which Caitlyn wishes she's asked herself sooner.  Above all, she wants other patients not feel alone.  You can find her book here: 

http://www.notmyproblembook.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.