Who are the experts with regards to POTS?

[green]

Hi all. I am confused or uncertain about issues related to the 'medical consensus' on dysautonomia. Can anyone answer:

1.) Who do you think are the consensus-shaping experts? Do most people think that Dr. Julian Stewart/Levine, The Mayo Clinic, and The Stanford Autonomic Disorders Team are the research leaders within the U.S. on POTS and dysautonomia? Are there other research leaders of note? 

2.) Have any of these research leaders produced books or review articles on their understanding of what is going on with POTS? 

3.) Which professional medical organizations work on POTS and/or dysautonomia? Is there a research journal dedicated to autonomic disorders? 

4.) Who is working on POTS and/or dysautonomia in other countries? Can they talk to researchers in the U.S.? Would we even know  if they're out there? (i.e. if there are a bunch of Japanese scientists out there working on POTS, would we even know?) 

By way of explanation - for years I have thought of myself as having dysautonomia and POTS. I once even saw Dr. Julian Stewart's lab and they indicated that my condition falls more into the venuous-pooling-in-the-legs category (whichever that is). I want to double-check the research consensus on exercise being the basic standard for treating my subtype of POTS. I've noticed that there's research suggesting that exercise can make CFS worse, and I've wondered if that research might have more relevance for me than the research suggesting graded exercise helps.

On a personal note: I've been baffled with regards to exercise recently. I know my POTS was best years ago, during a period when I was doing no running, but recumbent bicycle riding. It seemed to get worse gradually during periods where I returned to running - first in college (for 8 years), then later in grad school (2 years of half-marathon training, with speeds in races >90% of the men in my age group, speeds suggestive of a HIGH degree of cardio-fitness). And, currently, I am doing just 30 minutes of recumbent bike riding daily at high resistance, and I seem to be doing A LOT better. 

It seems that I adapted to hard cardio - in the sense that I could run fast and long - but did not improve my POTS. At the moment, it seems that I am de-conditioning (as I get out of shape) from hard cardio - for I am getting slower and more easily winded - but my POTS is starting to get better again. And yet, there could also be some special relevance to the fact that I am engaging in heavy resistance on the recumbent bike.

Personal experience is my gold-standard: whatever works for me is what I will do. I don't care about the medical consensus. I will trust my own experience. And yet, I have to admit that there are always potential confounding factors obstructing straightforward assessment of my own personal experience. For example, the period during which I was doing better, I was also in California for some of that time, I had less stress, I was younger, I consumed a different diet and took different medicines. 

It is so hard to navigate having a long-term condition like POTS, for which the medical community has something to teach us, but the state of the research is still fuzzy and ill-formed.To illustrate: Compare the idea that there are multiple types of POTS to the idea that there are multiple types of HEPATITIS. There's real strong consensus on the existence of different forms of hepatitis - there are well-established diagnostic tools with high specificity and accuracy at identifying A,B, and C, and there are different vaccinations for each of A,B and C.   To my knowledge, this is exactly the opposite of the situation with regards to the different POTS subtypes. And why is this? 

Green

 

Edited May 31, 2018 by green
typos

[WinterSown]

1 hour ago, green said:

Hi all. I am confused or uncertain about issues related to the 'medical consensus' on dysautonomia. Can anyone answer:

1.) Who do you think are the consensus-shaping experts? Do most people think that Dr. Julian Stewart/Levine, The Mayo Clinic, and The Stanford Autonomic Disorders Team are the research leaders within the U.S. on POTS and dysautonomia? Are there other research leaders of note? 

You can look at DINET's homepage and see an assortment of current research studies. They are related to Dysautonomia, and all are unique. Some are still open and looking for participants/volunteers. 

2.) Have any of these research leaders produced books or review articles on their understanding of what is going on with POTS? 

Yes. There are many, you can go to google scholar  and type in the doctor's name to see if they have produced any whitepapers. 

3.) Which professional medical organizations work on POTS and/or dysautonomia? Is there a research journal dedicated to autonomic disorders?

Professional Medical Organizations, hmmm. An assortment of hospitals and universities have specialists and researchers.  There are non-profits also doing work to improve patient care and speed up diagnosis, like DINET. There are journals but they mostly require a member$hip to see the content.

4.) Who is working on POTS and/or dysautonomia in other countries? Can they talk to researchers in the U.S.? Would we even know  if they're out there? (i.e. if there are a bunch of Japanese scientists out there working on POTS, would we even know?)

It's best to search by country--here's Australia, as an example.

By way of explanation - for years I have thought of myself as having dysautonomia and POTS. I once even saw Dr. Julian Stewart's lab and they indicated that my condition falls more into the venuous-pooling-in-the-legs category (whichever that is). I want to double-check the research consensus on exercise being the basic standard for treating my subtype of POTS. I've noticed that there's research suggesting that exercise can make CFS worse, and I've wondered if that research might have more relevance for me than the research suggesting graded exercise helps.

Exercise, IMHO, is the best thing for circulation,  it has been a big positive change for me. I go to PT twice a week and it's kept me walking with less tripping and/or fainting. My DPT developed a program specifically for me rather than using any other doctor's preset because we are all so different, he had to build me up slowly starting with correcting my vertigo. We still work on gait and balance and a whole lot more than when I began PT over a year ago. 

On a personal note: I've been baffled with regards to exercise recently. I know my POTS was best years ago, during a period when I was doing no running, but recumbent bicycle riding. It seemed to get worse gradually during periods where I returned to running - first in college (for 8 years), then later in grad school (2 years of half-marathon training, with speeds in races >90% of the men in my age group, speeds suggestive of a HIGH degree of cardio-fitness). And, currently, I am doing just 30 minutes of recumbent bike riding daily at high resistance, and I seem to be doing A LOT better.  

So, don't run! Yet. Your body changes and so do your symptoms. What you could do then you can't do now or vice versa. You have to build up both slowly and wisely. If your body and head are both telling you this is not working out then do something different that will help you feel better until you are ready to give a go at something else. Keep moving is the best advice, mix up how you move is even better.

It seems that I adapted to hard cardio - in the sense that I could run fast and long - but did not improve my POTS. At the moment, it seems that I am de-conditioning (as I get out of shape) from hard cardio - for I am getting slower and more easily winded - but my POTS is starting to get better again. And yet, there could also be some special relevance to the fact that I am engaging in heavy resistance on the recumbent bike.

I ride the bike twice each session at PT. First time around with resistance forward and back, arms and legs. The next time around is about an hour later when I am done with all my PT exercise sets and my legs are fried. I get on the bike with the instructions to ride like the wind--no resistance. It is better cardio than the resistance and an awesome fat burner too. I think the two rides, with resistance and like a racer without it, have been excellent for improving my circulation. 

Personal experience is my gold-standard: whatever works for me is what I will do. I don't care about the medical consensus. I will trust my own experience. And yet, I have to admit that there are always potential confounding factors obstructing straightforward assessment of my own personal experience. For example, the period during which I was doing better, I was also in California for some of that time, I had less stress, I was younger, I consumed a different diet and took different medicines. 
 

Stress and environment can trigger symptoms. Youth rocks for a lot of reasons. Eat anything with an avocado or any of the other electrolyte rich foods.

It is so hard to navigate having a long-term condition like POTS, for which the medical community has something to teach us, but the state of the research is still fuzzy and ill-formed.To illustrate: Compare the idea that there are multiple types of POTS to the idea that there are multiple types of HEPATITIS. There's real strong consensus on the existence of different forms of hepatitis - there are well-established diagnostic tools with high specificity and accuracy at identifying A,B, and C, and there are different vaccinations for each of A,B and C.   To my knowledge, this is exactly the opposite of the situation with regards to the different POTS subtypes. And why is this? 

You are comparing apples and oranges. We're not infectious and just don't have the same mortality rate as hepatitis. Hep has been around a lot longer and has killed millions of people.

Green
 

WS