Latest / The YMyHealth Podcast | Wellness and Healthcare Insights for Millennials / POTS Management: The Exercise Dilemma and Where Clinical Decision Making Came From
Transcript
- Melissa Schenkman (00:41) Today I am here with Dr. Sarah Diekman, who is joining us and is an expert in POTS and dysautonomia, as well as a POTS patient. So welcome, Dr. Diekman. Sarah Diekman (00:55) Thank you for having me. Melissa Schenkman (00:56) You're so welcome. And today we're going to talk about the latest in POTS research. I'm curious if there have been any changes on this that's kind of challenging to navigate with POTS is exercise. And it's been. Most people say to me the word controversial really is what comes to mind because for some people it can aggravate symptoms, for other people it can make symptoms better. So it's kind of hard, I would imagine, to provide very detailed guidance on how to go about it. So I was wondering if anything, now that we have more of a recognition that lots of people and lots of young people are living with POTS and lots of young people like to exercise, kind of Have you heard anything new in that area in terms of guidance, protocols, things like that? Sarah Diekman (01:45) Yeah, so I know a lot of institutions are working on better protocols, easier said than done. So we're still dealing with some of the same open access ones like the CHOP. Let me give you a little origin story so we can first, we can understand our past to understand where some of our baggage came from. Where did this whole exercise fixes POTS come from? It actually came long before POTS was even recognized as an illness. It was only named in 1990 at Mayo Clinic, somewhere in the 90s, which was an amalgamation of several previously named illnesses. So the name is very modern. Now, the origin of the exercise fixes everything came from the astronauts. These were super healthy humans because you weren't allowed to go up. You it's not the same as nowadays where if you have a billion dollars or whatever, they'll let anyone can go up there. It used to be you could not have, I mean, they're very worried about what's gonna happen to human life up in space. So you couldn't need eyeglasses. You couldn't have one physical ailment. Your chart had to be totally a nothing burger. So these perfectly healthy people will go up to outer space and they came back and they had what we now call POTS. And I believe it was Dr. Levine and this is where the Levine protocol came from, found that they could exercise it away. That, so since their POTSwas, but the difference is their POTS was 100 % induced by zero gravity environments. But tell my patients, For us, it comes from within. It's from within. So for each pot patient here on earth who didn't have it induced by zero G environments, and this is by the way, why they have astronauts work out now when they're in outer space. So they come back and they don't have pots anymore. Yeah. So they have protocols. So that was the birth of this. And for the astronauts iit was able to fix it all. But they didn't have autoimmune stuff or rheumatologic, whatever the true origin is for POTS patients. And it's probably multiple causes. You know, we're probably ultimately going to find that there's different subtypes of causes. But for all of us, it's a different cause and there is different exercise tolerance. Now, Sarah Diekman (04:30) Some people, so it really takes one of two paths. People either need to pace, which pacing is for the most severe exercise intolerance. This basically means that exercise is toxic to them. And in another important origin study, besides this origin of exercise, everything, that led to a study I believe it was called the PACE study that caused a lot of harm because this was a study of myalgic encephalomyelitis, formerly known as chronic fatigue syndrome. Also that said, like exercise fixes everything. But the problem was they really, I think they would have needed to do an intention to treat analysis and they didn't. So basically they disregarded the dropouts. Like people were getting so sick, they dropped out. And so what you're left with is survival bias. So survivors survive. And so the people who are well enough to survive the exercise survive to the end of the trial. And then you can erroneously conclude that exercise made them better. If you don't analyze, like why did people drop out? So the PACE trial, was published and was treated as the gold standard for ME-CSF for a long time. And that was really harmful to a lot of patients. And there's a lot of overlap between ME-CSF and POTS. Another controversy because it's like endless with POTS is are they two separate illnesses? If a POTS patient meets ME criteria. Do we name it differently? Is that part of the POTS? Because almost all POTS patients will meet some level of ME criteria. We usually don't really get into the weeds on it until someone is into the moderate to, or at least that's the way I practice clinically, because everyone has at least mild ME. so yeah, the past diverged in whether or not somebody Sarah Diekman (06:54) So yeah, the paths diverge in whether or not somebody really, really gets sick when they exercise or if they're exercise intolerant, but able to progress. So exercise intolerance is part of POTS, but for some people it can make them feel much better, myself included. So I'm one of those, but that is not everybody. So as a clinician, I have to carefully assess with each person. I take a history and start off with my best analysis of what is how they're going to tolerate exercise. And then we keep reevaluating, is this helping? Is this hurting? it can, the door swings both ways, but a lot of people have a lot of trauma from this history of exercise cures everything, being massively gaslit, harmed. Melissa Schenkman (07:54) Thank you so much. Thank you for taking the time to talk with me and to share with our community. We greatly appreciate it. Sarah Diekman (08:00) It is my pleasure. Thank you for everything that you do.