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Saw a female vascular surgeon in St. Louis for myself and my friend's daughter. She was fabulous and helped both of us. Off propranolol after undergoing treatment with her!!!!

Your interview with Dr. Janet Settle was an answered prayer. My daughter was misdiagnosed for decades with mysterious hives and then Bipolar, before she found out in 2017 that she had autoimmune encephalitis, more specifically Rheumatic Fever with complications of Sydenham Chorea. Treated with antibiotics and high dose IVIG treatments with steroids..Later, she found out she had alpha gal and several other tick vector infections. This year, I found out about MCAS and have seen improvements with low histamine diet and antihistamines, I would love for her doctors to listen to this podcast. I will be sending a link to them.❤

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I supplemented each vitamin mentioned for a year, had lab tests to make sure I was at the high end of the normal range, and none of my symptoms improved. However, I did give myself vitamin D toxicity.

Has anyone tried looking for the cause of their autonomic dysfunction rather than solely trying to manage symptoms?

Thank you for this podcast. My daughter is 19 and diagnosed with POTS in April 2024. We are struggling to help her. So many of her body systems are affected! Go symptoms and sleep are very hard for her.

love this episode thank you!!

Thank you for taking the time and energy to create something like this!! This will be a huge way to educate others.

This was an amazing talk! Thank you! I wish more pediatric and adult cardiologist were educated in all of this!!! We have had the cardiologist and autonomic specialist who don’t have any of this information. As a parent this was extremely helpful to get my daughters and myself proper treatment. So many patients could be helped with this knowledge.

Would red light therapy help. God information. Better if we could see you. ❤

Hi there ! Looking to contact the hosts of the podcast. Do you recommend any providers for long covid / covid induced pots ?

Yes please change the system. Docs need to keep studying. They don’t seem to know enough. I’ve been miss diagnosed for the last two years. I just got dx with alpha gal. I’m sure I’ve had it for a long time. When I came down with Covid it all went to hell really fast in a neuropsychiatric way.

Botulism is a good chronic fatigue and pots triggerer

What supplements did he recommend for healing the gut lining / leaky gut?

Where do we find the exercises to do?

When will this be available in the UK?🇬🇧 We are so far behind the US and Canada when it comes to POTS 💚🙏🏼

I have hyperadrogenic POTS. My bp goes up to 172/200 whenever i stand and slowly comes to normal. I have chronic ebv active in IgM and PCR and WBCs. So i think the chronic infection is actually the POTS cause for me. I don't have any comordities. All tested for. Chronic constant fatigue but it's not PEM. Other thing i have discovered is a hiatus hernia. I think problems with the stomach with diaphragm could play a roll in POTS. I'd love to see research on gastrocardiac link in POTS. The comment about the goosebumps in the scalps was fascinating. I had this for the first three years of this condition. I was on no medication and wondered what it was ... vasoconstriction happening! THANK YOU FOR THAT ☺️🙏. now i understand.

Any drs in Kansas City?

Thank you Dr. Fedorowski

The mutation in the NET transporter was only found in one kindred family and thousands of pot’s patients were tested and they have never found that gene mutation again so its actually not a known cause of pots

Can u have neuropathic pots without ur legs turning purple or red?

What causes hyperadrengic pots?

Having observed swing changes in mood in POTS patients, makes me think that there is more than patient's "will" or "desire" to "control" parient's "mind". Those swings must have an explanation at physiologic level. Using Psychology to approach these issues may be more harmful than good. It is always better to say: We do not know anything, lets try this or that and make your own conclusions. Study as much as you can, Give us feedback and hopefully we all can learn something. You may have to disregard concepts of your providers, please be kind to help us understand.

I always wonder if an autoimmune could be behind these chronic illnesses. Do you think universal vaccinations have something to do with this? Just asking.

One of the biggest problems is when those children are misdiagnosed and even managed as psychiatric patients. They may get the label of "Psychiatric" which at least for me "psychiatric" only means medical ignorance. Moreover some "psychiatric" medications may even improve some symptoms of POTS and since there might be a "positive" response the label "psychiatric" will be carried forever. Sometimes medicine is shameful and cruel. It is so simple to say: We do not know rather tha fabricate diagnosis. The same applies to so called "ethiologic diagnosis" like : mold toxicity, fibromyalgia, Lyme disease, chronic fatigue syndrome. For me all these are fabricated diagnosis. It is nice to see there are good doctors that question everything, and want to keep learning.

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What about brady cardio? Children? Who have symptoms of chest pain n fainting.

Dr. Maxwell is great. Can you repair the "saggy" vasculature if you suppress the mast cells or is there a point of no return?)

Expressing genetics are the reason ive never felt any better despite allllll the changes ive made to my daily lifestyle. 6 years of doing all the things just to realize with expressing cbs's, mthfr's, comt's, nod, sod2, and so on and so forth, im just not going to feel any better. I wish i had never existed.

Fascinating information. I’ve had lower right back pain on/off for a year and now have almost every symptom of POTS, particularly the dizziness, weakness, lightheadedness and swelling lower legs. Had MRI and hearing tests -all normal. Following up with US bilateral lower extremities and pelvis this week. I hope to get definitive answers soon. Thank you for sharing this.

Adrenal fatigue as well

Very interesting. I’ve had pelvic congestion for quite some time and as it has progressed,so too has POTS…No link has been made up to now by any doctors.Time to get this sorted! Thank you for this conversation.

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How come I haven't heard bile acid malabsorption mentioned for GI issues? I've been diagnosed witi it and I suspect I have Mast Cell Activation Syndrome, dysautonomia of some sort, and Ehlers Danlos syndrome (I found genetic markers COL5A1 and COL5A2). I also suspect I might have histamine intolerance. My identical twin sister has been diagnosed with bile acid malabsorption as well. I would certainly like to see doctors address the unique dietary restrictions that come with bile acid malabsorption, histamine intolerance, and Mast Cell Activation Syndrome. It's been a pain trying to figure out my diet and I haven't been able to get in to see a doctor yet to give me an IgG test.

Thank you! My son has been sick since having covid in December 2023. Cardiology finally said after so many appointments everywhere that he has dysautonomia. But we still get gaslighted, saying it's more in his head. So we are starting counseling in hopes to help him.

My son has been sick since getting covid in December of 2023. Was diagnosed with dysautonomia in May, but we have had no relief of symptoms. I feel so bad that he has no quality of life. we are on ER all the time because he feels like he is going to die. This podcast gives me hope. My son just turned 18.

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Stellate ganglion blocks have made the BIGGEST DIFFERENCE for me.

I finally figured out that a Claritin makes my depression go away. Famotidine eases anxiety. I spent so many years being gaslighted by doctors but I knew there was a physical cause.

This was fascinating. I was wondering if micro clotting was a big factor in some of these conditions including SFN. Any insight on using Nattokinase to help clot breakdown, or improve any POTS symptoms?

Can micro clotting of the blood starve and damage small nerve fibers?

I was seeing that Prozac has anti inflammatory effects. Is that true? Risperidone?

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I miss the Potscast! This has been a great source of support for me. hope everything is okay!

Wow. I have always worried about labelled as hypochondriac.

I am taking both a beta blocker and midodrine. Its may be important to note my cardiologist said i probably have the most severe case of POTS he has ever seen, and i was recently diagnosed with Hypermobile EDS. I am both on metoprolol ER 25mg 3x a day, and midodrine 10mg 3x a day, with my diastolic blood pressure falling to 50 (not 50s, but 5-0, 50.) as noted by a 24 hr ambulatory blood pressure cuff. I have just finished 3 iron infusions, and it still didnt prevent my intense fatigue. I am now on florinef 0.1mg QD. Lets hope that works.

So weird as I have MCAS and in Germany and Switzerland they advise us to stay away from vitamin c. Also I got MCAS and POTS after 1 Pfizer without Covid. All confirmed by the Post Vac Clinic in Marburg. I had iv vitamin c a few months after getting sick and ended up in the hospital. Later was told that it's because I have MCAS and high dose vitamin c can be dangerous. Can you comment on this?

Is there a reference you can share to locate doctors that specialize in POTS?