Strategies for POTS Relief with Dr. Satish Raj (Ep 125)

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Welcome back, Every Bendy Body,

to the Bendy Bodies podcast

 

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with your host and founder, Dr.

 

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Linda Bluestein, the hypermobility MD.

 

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This is going to be a really

exciting conversation.

 

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I know so many of you have had

questions about POTS and other

 

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forms of dysautonomia, and we

are going to be talking to Dr.

 

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Raj about this incredibly

important topic today.

 

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This has touched me personally.

 

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As I had dysautonomia in both of my

pregnancies, which I understand we're

 

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going to talk about is not a specific

diagnosis in and of itself, but literally

 

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that's what they put on my paperwork

was dysautonomia of pregnancy and both

 

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times I was started on beta blockers.

 

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I do want to give you

a brief little warning.

 

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That, uh, we recorded this

early in the morning and I must

 

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have still been half asleep.

 

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I forgot to turn on my good microphone.

 

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So the actual interview was recorded

using my computer microphone.

 

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So if you notice a difference

in sound quality, that's why.

 

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Okay, let's talk about Dr.

 

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Satish Raj.

 

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He is a heart rhythm cardiologist.

 

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He spent 12 years working at the

Vanderbilt Autonomic Dysfunction

 

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Center in Nashville, Tennessee.

 

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He then moved back to Canada and

founded the Calgary Autonomic

 

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Investigation and Management Clinic.

 

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His primary research interests

relate to the understanding and

 

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better treatment of POTS, vasovagal

syncope, and orthostatic hypotension.

 

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Dr.

 

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Raj is a former president of the American

Autonomic Society and he also serves as

 

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a medical advisor to many POTS patients

groups and he is a part of the EDS

 

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Comorbidity Coalition Working Group.

 

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I am so excited to have

this conversation with Dr.

 

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Raj because I know that so many of you

have had so many questions about POTS.

 

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As always, this information is

for educational purposes only

 

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and is not a substitute for

personalized medical advice.

 

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Be sure to stick around until the

very end so you don't miss any of

 

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our special hypermobility hacks.

 

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Let's get going.

 

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Well, I am here with Dr.

 

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Satish Raj and I'm so excited to

finally get to chat with you about

 

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POTS, Dysautonomia, Basal Vagal

Syncope, um, so many of the things that

 

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you treat and that are so important

for this population of people.

 

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We are doing this fairly

early in the morning, uh, at

 

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least where I, where I live.

 

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Um, hopefully you're a little bit

more awake than I am this morning.

 

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Well, um, I have an hour on you, I'm in

the, I'm in the mountain time zone, the

 

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forgotten time zone as I like to call it.

 

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So I didn't realize that

you were on mountain time.

 

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I'm on mountain time also.

 

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So there you go.

 

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Wonderful.

 

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Um, let's start out by talking about

what is dysautonomia, and if that's

 

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a good umbrella term to use, and why

is this topic so crucially important

 

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for people with bendy bodies?

 

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So, I think it's, it's a term

that's useful as a concept,

 

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but perhaps not as a diagnosis.

 

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So, dysautonomia is a shorthand Uh, way

of saying that there's a dysfunction

 

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in the autonomic nervous system.

 

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Right, so dis and auto from

the autonomic nervous system.

 

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And it's one of those things that's

actually at some level fairly common.

 

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Um, there's a spectrum obviously of things

that can be wrong and the spectrum of

 

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severity of how badly things can be wrong.

 

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But one of the challenges, uh, I

guess first is trying to understand

 

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what is the autonomic nervous system.

 

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And.

 

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One of my colleagues, uh, in Los Angeles,

actually, has described it as the human

 

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equivalent of the Internet of Things.

 

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Um, it's a term I heard a lot more a

few years ago than now, but the whole

 

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concept that your house, your life

will be wired, um, so that you can

 

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control everything from your room, the

lights downstairs, the garage, I mean,

 

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we're seeing some of this right now.

 

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Um, but it's the wiring.

 

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And that's what the

autonomic nervous system is.

 

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It does, it's the wiring that takes

care of the background life functions

 

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throughout, and so it, you know, I'm a

cardiologist by training, our focus is

 

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on cardiovascular manifestations, heart

rate and blood pressure regulation, but

 

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this Affects much more broadly, it affects

breathing, it affects gut function, it

 

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affects bladder function, it affects

sweating, you know, all the things that

 

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are really useful for living, like if

one of those things don't work, you know,

 

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life becomes very difficult and sometimes

unsustainable, but things you don't want

 

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to have to think about to do, right?

 

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I mean, there's certainly fables

in mythology where people have

 

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to think to breathe, for example,

and that doesn't go well.

 

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So that's what the Autonomic Nervous

System is, and Dysautonomia or

 

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Autonomic Dysfunction is saying

there's something wrong with it.

 

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Now the problem with Dysautonomia as

a label, or as a diagnosis, is that,

 

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A, it's hard to disprove, right?

 

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It's hard to say there's nothing wrong

with any of those things, because we

 

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can test for some of those things, and

many of the things don't have brilliant

 

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tests, ways to sort of say yay or nay.

 

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But the other is, things

can be true and unhelpful.

 

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So, for example, when I was at

Vanderbilt, And to some extent now,

 

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you know, but when I was at Vanderbilt,

my clinic, my autonomic clinic,

 

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was in a building that we call the

Vanderbilt Heart and Vascular Institute.

 

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And it's probably true that every

patient that was seen in that clinic

 

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could be said to have heart and

vascular or heart or vascular disease.

 

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We'll shorten it to heart disease.

 

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But if we gave that every

patient the diagnosis of heart

 

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disease while technically

correct, it's totally unhelpful.

 

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Because, you know, we know that, you

know, within the spectrum of heart

 

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disease, you could have a myocardial

infarction, or what's commonly called a

 

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heart attack, and that has its own set

of risks and treatments and prognosis.

 

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You could have heart rhythm problems, and

even heart rhythm problems isn't a thing.

 

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You have atrial rhythm problems,

ventricular rhythm problems, different

 

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types that have different prognoses.

 

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You could have valve problems, and these

all have different natural histories,

 

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different courses, different treatments.

 

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And so, just labeling, if someone just

comes with a label of I have heart

 

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disease, that doesn't really help

communicate what the issues are, what's

 

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likely to happen to them, or even what

treatments might be helpful to them.

 

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So, it means that

something's not quite right.

 

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You know, and I think we need

to get a bit more specific.

 

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So, certainly in the spectrum, we

have traditionally seen patients, um,

 

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with, say, late stage diabetes as a

complication, or with Parkinson's disease,

 

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for example, older patients that can

get profound orthostatic hypotension

 

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because some of these autonomic nerves, in

particular ones in the sympathetic nervous

 

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system, are shot, and so they're not able

to Squished vessels properly and they're

 

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not able to maintain their blood pressure.

 

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That's a, you know, sort of at one end of

the spectrum, but there can be problems

 

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with Regulation issues, problems with

the reflexes that help control the heart

 

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rate and blood pressure regulation in

response to different stresses, um,

 

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that, and those are more common, I think,

in certainly the younger populations,

 

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right, so patients under the age of 60

or 70 years old, and certainly in, in

 

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patients with, you know, Ehlers Danlos

Syndrome, uh, joint hypermobility,

 

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sort of things in the spectrum.

 

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One of the more common Specific

manifestations that I see is, is

 

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an overlap with POTS, or Postural

Orthostatic Tachycardia Syndrome.

 

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Certainly patients can be prone to,

um, issues of orthostatic intolerance

 

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where they feel unwell when they're

vertical, when they're upright.

 

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Um, and maybe not fully have the,

you know, the excessive tachycardia

 

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to meet the criteria for POTS.

 

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So that's the thing, it's not, you know,

we, we define criteria with, with, uh,

 

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you know, absolute, you have to, you

know, Meet A, B, and C, um, and that's

 

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helpful because if you want to try and

start understanding why things are, you

 

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need a group that is somewhat vaguely

homogenous, um, but that doesn't mean

 

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that everyone, you know, that just

falls short of the criteria doesn't

 

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have something along that spectrum

and and may still benefit from some

 

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of the treatments that we learn about.

 

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I'm really glad that you brought

up orthostatic intolerance and,

 

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and POTS, but we're going to

obviously talk about POTS a lot.

 

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If somebody has orthostatic intolerance,

but they don't meet the criteria for

 

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POTS, I honestly keep trying to figure out

what the correct ICD 10 code is for that.

 

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Do you happen to know offhand?

 

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So, I'll say two things, and the

short answer is that there's not

 

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a great answer, um, but the longer

answer is, uh, even outside of ICD

 

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10 codes, there actually wasn't a

term for it until a few years ago.

 

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And so one of the challenges is

that if someone, if a physician

 

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were being strict about the criteria

and someone came in and they Didn't

 

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quite meet the criteria for POTS.

 

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They would say, you don't meet the

criteria for POTS and what they might

 

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be saying is, you know, yes, you have

something, it's just doesn't meet these

 

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criteria, but I think a lot of times what

the patient hears is, it's another doctor

 

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telling me there's nothing wrong with me,

 

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right?

 

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And so there's a challenge between

what was said and what was heard,

 

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even if everything was correct.

 

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And so sometimes what would happen is

physicians would diagnose people with

 

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POTS anyway, and that gets confusing

because now the label is communicating

 

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something to other people, including

other physicians, that may not be

 

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correct and that adds confusion.

 

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And so a few years ago, um, the

Canadian Cardiovascular Society,

 

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you know, we had put out a statement

on orthostatic intolerance, and

 

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originally it was supposed to be

sort of a, you know, focused on POTS.

 

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And as we were sort of discussing

it and trying to figure out The

 

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what to do, what was clear is that

everyone on the writing committee had

 

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confronted this issue of, you know,

you know, people being misdiagnosed

 

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and and also the communication issue

of, you know, wanting to acknowledge

 

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that there was something even if it

wasn't meeting the criteria for POTS.

 

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And so we came up with, uh, you know, an

ecosystem, I guess, of other diagnoses

 

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to try and both, uh, address this

issue of don't quite meet the heart

 

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rate criteria, but have symptoms.

 

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And also address the issue of the people

that do meet the criteria or don't if

 

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they have significant other comorbidities

outside of orthostatic intolerance.

 

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Their prognosis in response

to treatments for orthostatic

 

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intolerance may be different, right?

 

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So, if you have major GI issues,

um, and we treat the orthostatic

 

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intolerance well, well, if you sort of

try and track quality of life and say,

 

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Hey, how well did my treatment work?

 

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The quality of life may not improve a

lot if their main problem is actually

 

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their gut, you know, and you've

treated the orthostatic intolerance.

 

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And so, we came up with a nomenclature

to try and convey that as well.

 

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But the term that we came up

with for patients with A lot of

 

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orthostatic intolerance symptoms,

but not enough heart rate is postural

 

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symptoms without tachycardia.

 

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Um, and I grant you, it, it really,

you know, needs marketing, right?

 

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We, that wasn't really a roll

off the tongue sort of phrase.

 

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And we acknowledged, actually, that

this was a first effort at trying to

 

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describe this group to acknowledge

that clearly something, right?

 

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It's not that we don't believe

the patients, but it's without the

 

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tachycardia criteria, and so we're

certainly open to better names.

 

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But, but I think that

concept is important that.

 

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There can be something there

without that tachycardia.

 

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Yeah, I think it's really important and

I think you hit the nail on the head.

 

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I have, I definitely have had patients

that have gone to some different places

 

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and I'm thinking of one particular

patient that was diagnosed with POTS

 

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and then went back to this center

and had the tilt table test again and

 

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they told her, you no longer have POTS

and her symptoms were no different.

 

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In fact, she was, you know, still really

miserable and, and I explained and tell

 

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me if I'm wrong about this, but I was

like, you know, that's a snapshot in time.

 

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That's.

 

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That's how your cardiovascular

and autonomic system was

 

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behaving on that particular day.

 

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So, you know, we, we also, I feel like

it can be challenging because people

 

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probably vary a lot day to day as well.

 

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Yeah, there's absolutely, there's,

there's day to day variability.

 

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There's time of day variability.

 

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I mean, there's, we published a

couple of papers, well, we published

 

208

00:12:24,469 --> 00:12:25,609

a paper and there's another.

 

209

00:12:25,900 --> 00:12:28,960

Abstract that's being presented next

week at the American Autonomic Society

 

210

00:12:28,960 --> 00:12:35,000

meeting with data from, um, our

autonomic lab where we've, we know that

 

211

00:12:35,000 --> 00:12:36,830

there's time of day variability, right?

 

212

00:12:36,830 --> 00:12:41,300

That in the morning, uh, first thing, the

standing heart rates are a bit higher.

 

213

00:12:41,740 --> 00:12:45,100

Um, the, the supine or the

lying heart rates are not.

 

214

00:12:45,190 --> 00:12:47,530

And so the orthostatic

tachycardia, the difference.

 

215

00:12:47,964 --> 00:12:51,425

Tends to be higher in the morning

and that decreases by late morning

 

216

00:12:51,545 --> 00:12:52,635

and certainly into the afternoon.

 

217

00:12:52,635 --> 00:12:56,125

So if you assess first thing in the

morning that, you know, that's worth

 

218

00:12:56,125 --> 00:12:59,345

a few beats a minute compared to

if your clinic's in the afternoon.

 

219

00:12:59,814 --> 00:13:03,254

Now what I would say about your,

your patient situation, one of

 

220

00:13:03,254 --> 00:13:07,685

the questions is Um, what was

the diagnosis of POTS based upon?

 

221

00:13:07,785 --> 00:13:11,964

Right, so if it was a we took your

history and we think this sounds

 

222

00:13:11,964 --> 00:13:15,604

like POTS and let's get the test,

the patient may not have met the

 

223

00:13:15,604 --> 00:13:17,555

criteria for POTS yet to begin with.

 

224

00:13:17,645 --> 00:13:20,524

It was more, you know, we think

that this should be looked into.

 

225

00:13:21,185 --> 00:13:26,285

Um, versus we did orthostatic vital

signs in clinic and, and I want to

 

226

00:13:26,295 --> 00:13:30,005

be clear, orthostatic, you know, a

tilt is not an absolute necessity

 

227

00:13:30,005 --> 00:13:31,465

for POTS diagnosis in everyone.

 

228

00:13:31,994 --> 00:13:38,400

A good lying and 10 minute standing test

You know, if you shoot over the, the, the

 

229

00:13:38,699 --> 00:13:43,829

bar of heart rate, if you will, that's

good enough, um, but one of the other

 

230

00:13:43,829 --> 00:13:48,529

abstracts we're presenting is a more

detailed comparison again of tilting

 

231

00:13:48,540 --> 00:13:53,109

versus standing in the same cohort of

patients, and it's worth a few beats a

 

232

00:13:53,109 --> 00:13:59,280

minute, right, so if someone, if someone

on a stand test, their heart rate goes

 

233

00:13:59,280 --> 00:14:04,530

up only, say, 10 or 15 beats a minute,

it's very unlikely that they're The next

 

234

00:14:04,530 --> 00:14:07,900

day, you know, they come back in a few

weeks for a tilt, that unless something

 

235

00:14:08,229 --> 00:14:11,329

fundamentally has changed in their

physiology, that they're suddenly going

 

236

00:14:11,329 --> 00:14:16,870

to have an increase of 35 or 40 beats a

minute, but if someone on a stand test

 

237

00:14:17,090 --> 00:14:22,870

is at 28 beats per minute increase,

or 29, it's quite possible that You

 

238

00:14:22,870 --> 00:14:26,280

know, uh, because of some day to day

variability, that on a different day,

 

239

00:14:26,280 --> 00:14:27,800

they may be just over that threshold.

 

240

00:14:28,140 --> 00:14:29,689

And obviously, lots of things affect this.

 

241

00:14:29,689 --> 00:14:31,180

Hydration status will affect it.

 

242

00:14:31,560 --> 00:14:36,810

Um, time for medications or, you know,

medications in general will affect this.

 

243

00:14:37,089 --> 00:14:38,949

So, I think we have to be

a bit flexible about it.

 

244

00:14:38,970 --> 00:14:42,240

I, I certainly think if someone meets

POTS criteria based on symptoms and

 

245

00:14:42,240 --> 00:14:46,170

heart rate and on a different day, on

a different assessment, Especially if

 

246

00:14:46,170 --> 00:14:50,030

they're, uh, they've been engaging in

some non pharmacological treatments,

 

247

00:14:50,030 --> 00:14:52,970

which we can get into, and their

heart rate is just below that, I

 

248

00:14:52,970 --> 00:14:54,650

don't think the diagnosis disappears.

 

249

00:14:54,990 --> 00:14:57,460

But it does depend on how the

diagnosis was made in the first place.

 

250

00:14:58,094 --> 00:15:01,745

Yeah, no, the diagnosis was definitely

made based on the clinical picture

 

251

00:15:01,745 --> 00:15:05,734

and then doing a tilt table test

and then upon return to the same

 

252

00:15:05,935 --> 00:15:09,954

center, still having the same clinical

picture and I wasn't there, you know,

 

253

00:15:09,954 --> 00:15:11,024

when they had this conversation.

 

254

00:15:11,024 --> 00:15:15,524

So, like you said, there's sometimes

things that we say that are said

 

255

00:15:15,524 --> 00:15:17,724

one way, but heard another way.

 

256

00:15:17,724 --> 00:15:20,114

So that's, that's definitely

another challenge that we face.

 

257

00:15:20,384 --> 00:15:22,334

I want to make sure that we

talk about like causes of

 

258

00:15:22,334 --> 00:15:25,274

POTS because I think that's.

 

259

00:15:25,970 --> 00:15:29,819

At least it's my understanding that there

are different ways that people can get

 

260

00:15:29,819 --> 00:15:34,510

to this final common pathway of postural

orthostatic tachycardia syndrome or POTS.

 

261

00:15:35,499 --> 00:15:38,130

Are there multiple

different causes of POTS?

 

262

00:15:39,089 --> 00:15:39,710

I think so.

 

263

00:15:39,879 --> 00:15:40,099

Right?

 

264

00:15:40,099 --> 00:15:43,200

I mean, one of the challenges is

that in most people, it's hard

 

265

00:15:43,200 --> 00:15:44,419

to determine the exact cause.

 

266

00:15:44,419 --> 00:15:45,919

We have sort of inferences.

 

267

00:15:46,429 --> 00:15:49,989

Um, but I think most people that

treat a lot of patients would

 

268

00:15:49,999 --> 00:15:54,380

argue that it's not one very

specific thing, but heterogeneous.

 

269

00:15:54,380 --> 00:15:54,399

Yes.

 

270

00:15:54,750 --> 00:15:58,349

Mixture of different

pathophysiologic mechanisms, right?

 

271

00:15:58,349 --> 00:16:04,400

So in, you know, there are two

sisters, twin sisters that, um, have

 

272

00:16:04,400 --> 00:16:09,590

a genetic mutation in a norepinephrine

transporter gene that causes their POTS.

 

273

00:16:10,040 --> 00:16:13,349

Those are perhaps the only two people

where I can be 100 percent sure

 

274

00:16:13,349 --> 00:16:14,900

that we know what caused their POTS.

 

275

00:16:15,569 --> 00:16:19,339

Um, in most people it's, it's

tougher, but, you know, post viral

 

276

00:16:19,790 --> 00:16:23,219

seems to be a common, um, descriptor.

 

277

00:16:23,280 --> 00:16:24,619

So, you know, we've done.

 

278

00:16:25,064 --> 00:16:29,255

Uh, a study that we've often colloquially

referred to as the big pot survey, it's,

 

279

00:16:29,395 --> 00:16:34,215

it's a ethics approved study out of

Vanderbilt, something that I started, uh,

 

280

00:16:34,315 --> 00:16:37,764

shortly before I left there and it's still

ongoing, it's been done in partnership

 

281

00:16:37,765 --> 00:16:43,884

with Dysautonomy International, um,

and distributed largely through the

 

282

00:16:43,884 --> 00:16:47,985

social media platforms of Dysautonomy

International, and right now we've had,

 

283

00:16:48,515 --> 00:16:51,870

uh, well over 10, 000 patients Touch it.

 

284

00:16:52,260 --> 00:16:53,980

So, you know, it has challenges, right?

 

285

00:16:54,020 --> 00:16:55,899

We don't know who the

patients are necessarily.

 

286

00:16:57,000 --> 00:16:59,859

We're taking their word for everything

they tell us because it's not, you

 

287

00:16:59,859 --> 00:17:01,480

know, something we verified in clinic.

 

288

00:17:01,930 --> 00:17:03,479

But it has strengths as well.

 

289

00:17:03,490 --> 00:17:06,739

And the main strength is

it's much more democratic.

 

290

00:17:07,175 --> 00:17:11,954

Uh, in many ways then, you know, data

we collected at Vanderbilt or data that

 

291

00:17:11,965 --> 00:17:14,865

my colleagues at Mayo would collect at

Mayo, because obviously not everyone

 

292

00:17:14,865 --> 00:17:16,795

can get to Mayo or get to Vanderbilt.

 

293

00:17:16,805 --> 00:17:19,875

There are a lot of barriers and

challenges depending on where you live

 

294

00:17:19,885 --> 00:17:21,144

and your insurance and things like that.

 

295

00:17:22,554 --> 00:17:26,504

You know, so in that, when we looked,

and this was actually, we probably looked

 

296

00:17:26,505 --> 00:17:29,695

when there were about 5, 000 people, it

was a few, it was the first paper, we

 

297

00:17:29,695 --> 00:17:33,120

actually looked at sort of what people

said about, you know, What happened?

 

298

00:17:33,129 --> 00:17:36,090

So one of the questions was, in the

three months before the onset of

 

299

00:17:36,090 --> 00:17:38,740

your symptoms, did something happen?

 

300

00:17:38,750 --> 00:17:41,899

And we had a laundry list of

things that they could choose,

 

301

00:17:41,930 --> 00:17:43,770

and the most common answer was no.

 

302

00:17:44,199 --> 00:17:46,859

Which isn't to say nothing happened,

it's nothing that jumped out at

 

303

00:17:46,860 --> 00:17:48,710

them as being unusual happened.

 

304

00:17:49,460 --> 00:17:55,850

Um, but of the people that said yes,

40 percent reported a viral illness.

 

305

00:17:56,760 --> 00:17:58,350

In the three months before the onset.

 

306

00:17:58,400 --> 00:18:00,670

And, you know, I think some

more dramatic than others.

 

307

00:18:00,670 --> 00:18:05,080

I mean, I still remember one patient early

in my time at Vanderbilt that insisted

 

308

00:18:05,080 --> 00:18:08,460

she could tell me almost to the minute

when she developed her POTS because she

 

309

00:18:08,460 --> 00:18:12,140

was at a picnic and she was feeling well

and all of a sudden sort of just became

 

310

00:18:12,150 --> 00:18:16,350

really ill and was never the same since,

right, to the minute she'd say that.

 

311

00:18:16,920 --> 00:18:22,810

And so I suspect that even pre

COVID, this was a dominant cause

 

312

00:18:22,810 --> 00:18:25,940

of, of, of, of This type of illness.

 

313

00:18:26,379 --> 00:18:30,620

But certainly there are, you know,

other triggers, you know, people

 

314

00:18:30,620 --> 00:18:35,800

have found different bits of, um,

pathology in different cohorts, not

 

315

00:18:35,800 --> 00:18:40,510

necessarily everyone, so some people

have had issues with, um, peripheral

 

316

00:18:40,510 --> 00:18:47,540

neuropathies, um, so there was a very

elegant and hard to, you know, do study

 

317

00:18:47,570 --> 00:18:52,659

published in the late 90s, um, by Gersh

Jacob and colleagues, uh, you know,

 

318

00:18:52,669 --> 00:18:54,090

out of Vanderbilt before I was there.

 

319

00:18:54,415 --> 00:18:59,745

Where they actually used, uh, segmental

norepinephrine spillover techniques, so

 

320

00:19:00,004 --> 00:19:05,254

techniques to look at actually sympathetic

nerve release of norepinephrine and they

 

321

00:19:05,254 --> 00:19:08,084

actually looked at different parts of

the body as opposed to just the whole

 

322

00:19:08,084 --> 00:19:11,534

body and showed that in some of the

POTS patients there seemed to be less

 

323

00:19:12,125 --> 00:19:16,195

release Of this neurotransmitter from

the sympathetic nerves in the legs,

 

324

00:19:16,225 --> 00:19:20,655

suggesting that, you know, there may be

less sympathetic squish of the legs, and

 

325

00:19:20,655 --> 00:19:24,994

that may be part of the problem, um, and

so that, you know, I think is the basis

 

326

00:19:24,994 --> 00:19:30,815

of what's often referred to as neuropathic

pods, um, you know, there's some people

 

327

00:19:30,815 --> 00:19:35,775

that, uh, And I think it's a fairly small

group that they just release a lot of

 

328

00:19:35,775 --> 00:19:39,845

sympathetic, their sympathetic nerves

fire like crazy, like their brainstem

 

329

00:19:39,845 --> 00:19:41,385

is just causing it to fire, right?

 

330

00:19:41,385 --> 00:19:45,755

And there's obviously a reason

somewhere, but not sort of an obvious,

 

331

00:19:46,234 --> 00:19:47,944

you know, reason that we can pick up.

 

332

00:19:48,845 --> 00:19:52,255

Some of the work we did at Vanderbilt

was really focused on blood volume and

 

333

00:19:52,255 --> 00:19:56,565

blood volume regulation, and we found

that a majority of patients, when we

 

334

00:19:56,565 --> 00:20:00,685

formally assessed their blood volume,

seemed to have a low blood volume, right?

 

335

00:20:00,685 --> 00:20:02,575

And that's actually the basis

of some of the treatments.

 

336

00:20:03,104 --> 00:20:06,634

That we use, but one of the consequences

of that is that that actually secondarily

 

337

00:20:06,634 --> 00:20:12,125

increases sympathetic tone as a response

mechanism, um, and that can contribute.

 

338

00:20:12,474 --> 00:20:17,274

So there are different sort of physiologic

mechanisms or pathophysiologic mechanisms.

 

339

00:20:17,654 --> 00:20:24,719

I think the challenge is That it's tough

often, um, well, the challenge is some

 

340

00:20:24,719 --> 00:20:27,739

people want to say I have this type of

POTS or that type of POTS, but the truth

 

341

00:20:27,739 --> 00:20:32,399

is these mechanisms overlap in the same

individual, right, so I'm a big fan

 

342

00:20:32,399 --> 00:20:35,039

of Venn diagrams, right, people sort

of think of these as discrete things,

 

343

00:20:35,039 --> 00:20:38,540

they're actually a series of overlapping

Venn diagrams, but they're features,

 

344

00:20:38,550 --> 00:20:42,215

and, you know, these are features that

if you can sort of Figure out your

 

345

00:20:42,215 --> 00:20:43,705

patient has this feature or that feature.

 

346

00:20:43,705 --> 00:20:47,885

There may be treatments that you'd be

more likely to use that may be helpful.

 

347

00:20:48,245 --> 00:20:51,344

Although that's largely clinical

experience based and not, you

 

348

00:20:51,344 --> 00:20:54,324

know, we don't have trials on,

you know, you have this feature

 

349

00:20:54,324 --> 00:20:55,845

so we're going to test this drug.

 

350

00:20:56,014 --> 00:20:59,534

That may be where we want to go, but

we're a little, you know, we need

 

351

00:20:59,534 --> 00:21:02,795

some more basic trials on, you know,

we have drugs that'll help, right?

 

352

00:21:02,795 --> 00:21:03,705

We're starting to get there.

 

353

00:21:03,705 --> 00:21:07,475

We're starting to see some initial

treatment trials, but we're obviously

 

354

00:21:07,475 --> 00:21:11,020

way behind Things like myocardial

infarction or stroke in terms of

 

355

00:21:11,020 --> 00:21:15,790

hypertension, in terms of having big

trials, good data to say this works.

 

356

00:21:16,350 --> 00:21:18,260

And what about structural causes?

 

357

00:21:18,490 --> 00:21:22,119

When I was doing some reading, I came

across some conversations, a couple

 

358

00:21:22,120 --> 00:21:27,209

of papers about problems with pelvic

veins, upper cervical instability.

 

359

00:21:27,240 --> 00:21:29,620

Do you think there are

structural causes of POTS?

 

360

00:21:31,530 --> 00:21:32,100

Probably.

 

361

00:21:32,550 --> 00:21:32,800

Right.

 

362

00:21:32,820 --> 00:21:36,410

I mean, so I think there's increasing

interest in sort of venous structure.

 

363

00:21:36,410 --> 00:21:41,899

So, you know, I, one of the, the

person that put me on to that years

 

364

00:21:41,899 --> 00:21:46,189

ago was a guy named Peter Rowe, who's

a pediatrician at Johns Hopkins, who's

 

365

00:21:46,980 --> 00:21:50,819

been in the chronic fatigue syndrome

space, ME CFS space for a year.

 

366

00:21:51,699 --> 00:21:52,310

30 years.

 

367

00:21:52,770 --> 00:21:57,040

And he and his colleagues have sort

of found some patients with what he

 

368

00:21:57,040 --> 00:22:00,929

described as, you know, pelvic veins

that look like Medusa's, Medusa's head,

 

369

00:22:01,170 --> 00:22:01,569

right,

 

370

00:22:01,569 --> 00:22:04,030

they're just all over the place

and, and that certainly can lead

 

371

00:22:04,030 --> 00:22:06,309

to a lot more venous pooling there.

 

372

00:22:06,309 --> 00:22:11,090

And, and, you know, there's a small

case series that embolization where

 

373

00:22:11,090 --> 00:22:14,879

you get rid of some of these sort

of excess and ectatic veins helps.

 

374

00:22:15,530 --> 00:22:18,569

The truth is, I'm not entirely

sure how common that is.

 

375

00:22:19,379 --> 00:22:23,030

That is, I mean, I've, I've, I've done

this a few times and looked and we've

 

376

00:22:23,030 --> 00:22:26,979

actually embolized, you know, on a couple

of occasions and, you know, in, in the

 

377

00:22:26,979 --> 00:22:31,099

patient I remember the best, you know,

actually some of the pelvic pain that she

 

378

00:22:31,100 --> 00:22:35,685

had, Improved for orthostatic intolerance

didn't improve that much, right?

 

379

00:22:35,685 --> 00:22:40,975

But there's probably, again, a spectrum in

terms of, um, you know, uh, you know, what

 

380

00:22:40,975 --> 00:22:42,625

gets better and how much it gets better.

 

381

00:22:43,065 --> 00:22:44,404

Um, it's certainly worth

thinking about, right?

 

382

00:22:44,404 --> 00:22:47,815

It's worth noting that, you know, not

insignificant number of patients that

 

383

00:22:47,815 --> 00:22:53,155

I see, um, you know, have a diagnosis

of endometriosis and the possibilities

 

384

00:22:53,155 --> 00:22:55,145

are that's absolutely true, right?

 

385

00:22:55,205 --> 00:22:58,585

I mean, people, you know, these are

young women typically is our patient

 

386

00:22:58,585 --> 00:23:00,155

population and they certainly.

 

387

00:23:00,470 --> 00:23:01,650

Do you get endometriosis?

 

388

00:23:02,219 --> 00:23:07,020

Um, but the other possibility is

that the pain, you know, that's

 

389

00:23:07,020 --> 00:23:10,525

attributed to endometriosis could

be from pelvic congestion and You

 

390

00:23:10,525 --> 00:23:12,835

know, the importance is that there's

potentially a different treatment.

 

391

00:23:13,285 --> 00:23:16,995

Um, more recently, there's been more

interest in, in things like May Therner

 

392

00:23:17,005 --> 00:23:20,805

syndrome, um, where you can get sort

of venous compression on one side.

 

393

00:23:20,805 --> 00:23:25,424

And again, I'm not sure I fully

understand exactly what happens, right?

 

394

00:23:25,424 --> 00:23:28,044

So, I think when it was initially

presented to me, it was like, well, you

 

395

00:23:28,045 --> 00:23:31,215

know, you have not enough blood coming

back because you have venous obstruction,

 

396

00:23:31,215 --> 00:23:35,875

but, you know, I, uh, Heard a recent talk

from Peter Rowe and, you know, one of the

 

397

00:23:35,875 --> 00:23:39,074

other things that may contribute is that

may actually contribute to the ectatic

 

398

00:23:39,105 --> 00:23:42,764

veins because you develop collaterals

to deal with the venous obstruction

 

399

00:23:42,764 --> 00:23:44,044

and that may be part of the problem.

 

400

00:23:44,684 --> 00:23:50,464

Um, and then certainly in the pediatric

group, you know, you, uh, they, they will

 

401

00:23:50,464 --> 00:23:56,044

talk a lot about median arcuate ligament

syndrome or MALS, um, which involves,

 

402

00:23:56,055 --> 00:23:57,915

you know, sort of further up in the gut.

 

403

00:23:58,230 --> 00:24:02,000

Uh, sort of a compression, again, how

much that's a venous issue versus, uh,

 

404

00:24:02,000 --> 00:24:06,069

you know, a nerve, like a, the ganglia

itself is getting whacked by the vessels

 

405

00:24:06,069 --> 00:24:11,370

and nerve damage and, you know, it's less

clear, because obviously if it's a nerve

 

406

00:24:11,370 --> 00:24:16,260

damage whacked by the vessels, that's less

likely to be responsive to things that,

 

407

00:24:16,819 --> 00:24:18,600

you know, alter the flow issue, right?

 

408

00:24:18,600 --> 00:24:21,670

You can sort of decompress the vessel

part a little bit, but, you know,

 

409

00:24:21,680 --> 00:24:23,379

it's not clear that things get better.

 

410

00:24:23,740 --> 00:24:30,705

I will say that I've I've seen that a lot

less, and maybe I'm not looking for it

 

411

00:24:30,705 --> 00:24:34,725

properly, but I, just in general, in the

adult world, we don't seem to talk about

 

412

00:24:34,725 --> 00:24:39,025

that as much as in the pediatric autonomic

world, and I'm not sure if that's a, you

 

413

00:24:39,025 --> 00:24:42,305

know, growth issue, that these are more

critical issues, you know, at certain

 

414

00:24:42,305 --> 00:24:47,364

stages, um, you know, or they present

at an earlier stage, you know, than,

 

415

00:24:47,514 --> 00:24:49,404

than, uh, than when you're full grown.

 

416

00:24:49,894 --> 00:24:51,385

But, so, they're in the

structure of things like that.

 

417

00:24:51,794 --> 00:24:54,344

Craniocervical instability

is another interesting issue,

 

418

00:24:54,344 --> 00:24:57,699

and it's one that's obviously

important in the hypermobile world.

 

419

00:24:59,070 --> 00:25:02,210

And there's no doubt that,

you know, that some people can

 

420

00:25:02,220 --> 00:25:03,379

have bones that slide, right?

 

421

00:25:03,379 --> 00:25:06,040

I mean, I've certainly seen sort of,

you know, x ray images saying, well,

 

422

00:25:06,040 --> 00:25:07,409

it's bending more than it should.

 

423

00:25:08,139 --> 00:25:13,639

Where the data is less clear is

on exactly, you know, on is that

 

424

00:25:13,639 --> 00:25:16,669

contributing to, like, what, I

guess, taking a step back, what

 

425

00:25:16,669 --> 00:25:17,979

symptoms is that contributing to?

 

426

00:25:18,350 --> 00:25:21,120

Right, so, is that contributing

to autonomic symptoms?

 

427

00:25:21,130 --> 00:25:23,190

Should there be other nervous

symptoms if you're actually having

 

428

00:25:23,190 --> 00:25:25,580

significant compression issues?

 

429

00:25:25,580 --> 00:25:30,159

And the most important question is, if

you were to try and go in and stabilize

 

430

00:25:30,159 --> 00:25:31,639

it, does that improve the symptoms?

 

431

00:25:32,409 --> 00:25:36,220

Right, because obviously, you know,

fixing craniocervical instability, this

 

432

00:25:36,220 --> 00:25:37,749

is, now we're talking neurosurgery.

 

433

00:25:37,810 --> 00:25:40,120

We're not, uh, it's not a trivial matter.

 

434

00:25:41,139 --> 00:25:43,720

And that's where I think right

now, certainly the data is lacking.

 

435

00:25:43,720 --> 00:25:45,480

It's certainly an area of interest.

 

436

00:25:45,480 --> 00:25:48,760

I would argue that, you know,

people are certainly doing it.

 

437

00:25:49,730 --> 00:25:51,810

widespread, but there's

some neurosurgeons doing it.

 

438

00:25:51,810 --> 00:25:56,510

I think it's critical, uh, that, you know,

things like this are being done, that

 

439

00:25:56,510 --> 00:26:00,570

it be done in the context of research

studies or at minimum registries, if

 

440

00:26:00,570 --> 00:26:04,720

not something a little more enhanced

where we can get follow up information

 

441

00:26:05,470 --> 00:26:07,930

to try and figure out what gets better.

 

442

00:26:08,899 --> 00:26:09,860

Does anything get better?

 

443

00:26:09,860 --> 00:26:11,010

And hopefully the answer is yes.

 

444

00:26:11,010 --> 00:26:12,889

But if the answer is

yes, what gets better?

 

445

00:26:12,889 --> 00:26:17,930

So if you have, um, you know,

paresthesias, does that get better?

 

446

00:26:17,950 --> 00:26:20,089

Does your heart rate

regulation get better?

 

447

00:26:20,100 --> 00:26:22,449

Does, you know, what is

it that is improving?

 

448

00:26:22,450 --> 00:26:27,599

And that's, for me, the challenge in

terms of saying, oh yes, you should go

 

449

00:26:27,600 --> 00:26:31,125

and try and get this You know, stabilized.

 

450

00:26:31,635 --> 00:26:32,615

It's fine to say that.

 

451

00:26:32,615 --> 00:26:35,835

Obviously, if it's so unstable that

someone's concerned that it's going

 

452

00:26:35,835 --> 00:26:38,484

to slide and transect your spine,

absolutely, then that's a clear

 

453

00:26:38,485 --> 00:26:39,824

neurosurgical indication, right?

 

454

00:26:39,824 --> 00:26:42,194

But the issues we're dealing

with are usually more subtle.

 

455

00:26:42,194 --> 00:26:45,875

It's not so much, it's, the patients

clearly have a lot of symptoms.

 

456

00:26:46,234 --> 00:26:49,115

They have a bit of slidey, a

bit of slideyness, you know,

 

457

00:26:49,145 --> 00:26:50,845

at the critical junction.

 

458

00:26:50,885 --> 00:26:52,575

The question is, is one causing the other?

 

459

00:26:52,695 --> 00:26:54,995

And if we fix the one,

will that help the other?

 

460

00:26:55,405 --> 00:26:56,245

Yeah, definitely.

 

461

00:26:56,245 --> 00:27:00,825

And I We've discussed upper cervical

instability a lot on the podcast, and

 

462

00:27:00,835 --> 00:27:05,265

I just, so people don't panic, there's

a lot of people that have mild upper

 

463

00:27:05,484 --> 00:27:09,085

cervical instability, right, that can

improve it through physical therapy and

 

464

00:27:09,285 --> 00:27:13,084

a variety of other techniques, but yes,

if you're on that end of the spectrum

 

465

00:27:13,084 --> 00:27:18,004

where, you know, you need a surgical

intervention, now exactly you're talking

 

466

00:27:18,004 --> 00:27:22,685

a much bigger procedure, and I agree

with you 100%, I think that it would

 

467

00:27:22,695 --> 00:27:27,875

be I think a lot of the people that are

doing those surgeries are tracking their

 

468

00:27:27,875 --> 00:27:32,445

outcomes, but something like a registry I

think would be so beneficial to really be

 

469

00:27:32,445 --> 00:27:38,475

able to tell how beneficial or not these

surgeries are and for individual symptoms

 

470

00:27:38,475 --> 00:27:41,874

because it is such a massive undertaking.

 

471

00:27:42,045 --> 00:27:44,585

So I think that would be

very, very, very helpful.

 

472

00:27:45,145 --> 00:27:47,284

What about hyperadrenergic POTS?

 

473

00:27:47,284 --> 00:27:49,045

You know, you hear people

talk about that a lot.

 

474

00:27:49,775 --> 00:27:52,930

I think there's maybe Different takes

on that, but of course, that would

 

475

00:27:52,930 --> 00:27:56,710

also change the treatment approach

if a person's blood pressure, for

 

476

00:27:56,710 --> 00:28:00,499

example, is high as compared to if

it's on the lower end of things.

 

477

00:28:02,170 --> 00:28:07,520

Yeah, um, so absolutely, so I

will take a step back and just

 

478

00:28:07,520 --> 00:28:09,420

say I hate subtyping, right?

 

479

00:28:09,460 --> 00:28:13,500

As I mentioned earlier, because, you

know, depending on how you define

 

480

00:28:13,500 --> 00:28:15,140

it, I think these can often overlap.

 

481

00:28:15,300 --> 00:28:20,220

So, I still remember one of my earlier

American Autonomic Society meetings, and

 

482

00:28:20,980 --> 00:28:25,220

there was a session on POTS, and Um, the

group out of Mayo and Rochester, which

 

483

00:28:25,220 --> 00:28:30,320

is a very highly productive research

group, um, had two abstracts back to back.

 

484

00:28:30,745 --> 00:28:31,425

on POTS.

 

485

00:28:31,885 --> 00:28:35,395

One was in hyperadrenergic POTS, and

the other was in neuropathic POTS,

 

486

00:28:35,395 --> 00:28:40,054

and when chatting with, you know, the,

the people that presented the abstract

 

487

00:28:40,054 --> 00:28:45,044

afterwards, there were some patients

that were in both studies, right?

 

488

00:28:45,044 --> 00:28:47,194

Because they were, I mean,

they were perfectly honest.

 

489

00:28:47,194 --> 00:28:50,655

What they, they, that may have been

the headline in hyperadrenergic POTS or

 

490

00:28:50,655 --> 00:28:54,850

neuropathic POTS as a shorthand, but, you

know, they described Who they studied,

 

491

00:28:54,850 --> 00:29:00,219

and the criteria were based on, you know,

certain specific test results, right?

 

492

00:29:00,219 --> 00:29:02,679

So they defined hyper adrenergic POTS,

however, they did it probably based

 

493

00:29:02,679 --> 00:29:05,959

on standing norepinephrine levels, and

maybe based on blood pressure response

 

494

00:29:05,969 --> 00:29:09,270

from lying to standing some orthostatic

hypertension, I forget the details.

 

495

00:29:09,610 --> 00:29:13,860

Neuropathic POTS was probably based

on abnormal sweat testing, you know,

 

496

00:29:13,860 --> 00:29:17,120

which is mediated by the sympathetic,

peripheral sympathetic nerves, right?

 

497

00:29:17,120 --> 00:29:21,600

So, you know, what they did was perfectly

honest, but when you look at the, what

 

498

00:29:21,600 --> 00:29:26,280

it points out though is, is that these

aren't Mutually exclusive terms, right?

 

499

00:29:26,280 --> 00:29:30,749

So, I, but I do think that, you

know, you know, the features are

 

500

00:29:30,749 --> 00:29:32,360

important and can guide treatment.

 

501

00:29:33,399 --> 00:29:37,139

But the challenge, again, with these

terms is that there's not a generally

 

502

00:29:37,139 --> 00:29:39,209

accepted definition of what that means.

 

503

00:29:39,870 --> 00:29:44,089

Right, so, for example, if we say

orthostatic hypotension, right, the

 

504

00:29:44,090 --> 00:29:48,689

definition of orthostatic hypotension is

a drop in your systolic, the top number of

 

505

00:29:48,689 --> 00:29:53,150

your blood pressure, by 20 mmHg, or a drop

in the diastolic, or bottom number, by 10.

 

506

00:29:53,590 --> 00:29:56,770

There is a caveat that if you have

a lot of baseline hypertension,

 

507

00:29:56,770 --> 00:30:01,435

that the threshold Rises to 30

over 15 millimeters of mercury.

 

508

00:30:03,035 --> 00:30:06,805

But in orthostatic hypertension, if

you were to look at different, no,

 

509

00:30:06,805 --> 00:30:11,075

sorry, in hyperadrenergic pods, for the

definition, if you look at different

 

510

00:30:11,075 --> 00:30:16,065

papers, everyone uses a slightly different

way of deciding that they're there.

 

511

00:30:16,685 --> 00:30:21,785

Um, so, some people will focus on plasma

norepinephrine levels on standing.

 

512

00:30:21,795 --> 00:30:25,225

So, norepinephrine is the neurotransmitter

in the sympathetic nervous system.

 

513

00:30:26,465 --> 00:30:33,100

If you make several assumptions, you

know, it's, A biochemical marker, right?

 

514

00:30:33,100 --> 00:30:36,320

You can actually, you know, you can

sort of infer that the increase in

 

515

00:30:36,500 --> 00:30:41,900

norepinephrine probably reflects

in some way the increase in the

 

516

00:30:42,050 --> 00:30:43,980

norepinephrine released into the synapses.

 

517

00:30:45,330 --> 00:30:48,850

There are assumptions about clearance,

and the most important assumption is that

 

518

00:30:49,150 --> 00:30:52,930

someone didn't have a vasovagal reaction

when they were standing up, because

 

519

00:30:52,930 --> 00:30:57,960

if you have a vasovagal reaction, then

your adrenal gland just sends out a pool

 

520

00:30:57,960 --> 00:31:04,700

of norepinephrine or noradrenaline and

epinephrine So, you're looking for, you

 

521

00:31:04,700 --> 00:31:07,810

know, ripples in the wave, and a tsunami

sort of comes through, and then you can't

 

522

00:31:07,810 --> 00:31:09,220

really interpret the ripples, right?

 

523

00:31:09,490 --> 00:31:14,440

But, assuming that doesn't happen, it's a

biochemical marker, and we can use that.

 

524

00:31:14,440 --> 00:31:15,290

So, some people use that.

 

525

00:31:15,290 --> 00:31:18,440

At Vanderbilt, we use that

a lot to find these groups.

 

526

00:31:18,970 --> 00:31:21,640

Um, other people say, well, focus

on the blood pressure, right?

 

527

00:31:21,640 --> 00:31:25,760

So, if the blood pressure goes up

more than 10 mmHg from lying to

 

528

00:31:25,760 --> 00:31:27,870

standing, so instead of the blood

pressure dropping when you stand

 

529

00:31:27,880 --> 00:31:30,720

up, it actually goes up when you

stand up, that that's a marker of.

 

530

00:31:31,710 --> 00:31:32,900

Hyperadrenergic state.

 

531

00:31:33,260 --> 00:31:35,010

Some people say it

should be 20 millimeters.

 

532

00:31:35,150 --> 00:31:37,630

So one of the challenges right

now is we don't actually have an

 

533

00:31:37,640 --> 00:31:40,190

accepted, widely accepted criteria.

 

534

00:31:40,190 --> 00:31:43,920

So when someone says this is

hyperadrenergic, we say this

 

535

00:31:43,930 --> 00:31:44,970

is exactly what it means.

 

536

00:31:45,570 --> 00:31:46,830

Um, and we may be getting to that.

 

537

00:31:47,580 --> 00:31:51,450

Having said that, in clinic,

there are some people

 

538

00:31:53,590 --> 00:31:58,120

I do think are very clearly

hyperadrenergic where it's severe

 

539

00:31:58,120 --> 00:32:02,360

enough that I would actually try and

treat that or target that directly

 

540

00:32:02,660 --> 00:32:04,280

with central sympatholytic drugs.

 

541

00:32:04,610 --> 00:32:08,690

So drugs that work at the brain or

brainstem level to decrease sympathetic

 

542

00:32:08,690 --> 00:32:14,030

outflow and I want to be clear, this

is a minority, this is a fairly small

 

543

00:32:14,030 --> 00:32:19,025

minority of my patients and the reason

it's a minority is that these drugs Have

 

544

00:32:19,025 --> 00:32:20,455

all been on the market forever, right?

 

545

00:32:20,455 --> 00:32:24,985

They all started life as antihypertensive

agents, and they're hardly used now.

 

546

00:32:26,295 --> 00:32:29,435

Mainly because they're much

better antihypertensive drugs.

 

547

00:32:29,435 --> 00:32:30,715

They're drugs that are better tolerated.

 

548

00:32:30,755 --> 00:32:34,435

These drugs all have some, you

know, they're clunky, right?

 

549

00:32:34,435 --> 00:32:36,435

They all, they're, they're

brute force instruments.

 

550

00:32:36,435 --> 00:32:39,605

They work mechanistically a specific

targeted way, which is why we want to

 

551

00:32:39,605 --> 00:32:41,605

use them, but they're clunky drugs.

 

552

00:32:41,605 --> 00:32:45,305

And if I give it to the wrong patient, or

if I give too much to the, you know, even

 

553

00:32:45,305 --> 00:32:47,275

the right patient, they'll feel miserable.

 

554

00:32:47,340 --> 00:32:48,809

Um,

 

555

00:32:48,990 --> 00:32:51,320

because they're central, they

work at the brainstem level,

 

556

00:32:51,320 --> 00:32:52,300

they're central to presence.

 

557

00:32:52,860 --> 00:32:56,190

I can flatten someone out like a pancake,

right, if I give too much, right?

 

558

00:32:56,190 --> 00:32:59,590

So, you have to be very

judicious or cautious in who

 

559

00:32:59,590 --> 00:33:00,650

you think you're giving it to.

 

560

00:33:01,450 --> 00:33:07,720

Um, what I've come up with, and this is

largely, actually entirely unpublished

 

561

00:33:07,730 --> 00:33:10,230

in terms of the approach that I used

for this, but we're actually trying

 

562

00:33:10,230 --> 00:33:15,650

to put together a small case series

now, is, um, there's some key features

 

563

00:33:15,650 --> 00:33:20,670

that I found will cluster together and

seems to identify people that Respond.

 

564

00:33:21,670 --> 00:33:25,450

And one of them is patients that wake up

at night with their heart racing, right?

 

565

00:33:25,450 --> 00:33:30,530

So fundamentally, the P and the O in

POTS is postural and orthostatic, right?

 

566

00:33:30,935 --> 00:33:34,685

These are people that usually have their

heart rates jump up when they're vertical,

 

567

00:33:35,065 --> 00:33:38,905

um, and certainly when they're exerting

themselves and doing things, right, but

 

568

00:33:39,135 --> 00:33:43,725

if they're asleep, none of those things

should really be true, um, but yet there

 

569

00:33:43,725 --> 00:33:46,495

are people, it's not the majority, but

there are people definitely that will

 

570

00:33:46,495 --> 00:33:49,575

say that, you know, they go to bed and

a few hours later they wake up and,

 

571

00:33:50,015 --> 00:33:54,710

and not that they wake up to go to the

bathroom and then They start thinking

 

572

00:33:54,710 --> 00:33:57,070

about things and their heart races, but

they wake up and their heart is racing.

 

573

00:33:57,230 --> 00:33:59,780

Like that, either that caused

it or that's coincident with it.

 

574

00:34:00,630 --> 00:34:01,990

Um, so that's one feature.

 

575

00:34:02,290 --> 00:34:05,510

The other feature that a lot of these

people will have is that they'll

 

576

00:34:05,510 --> 00:34:07,520

describe a hair trigger temper.

 

577

00:34:07,780 --> 00:34:08,010

Right?

 

578

00:34:08,010 --> 00:34:12,415

So they'll often couch it by saying,

No, I'm really a nice person, but You

 

579

00:34:12,415 --> 00:34:17,225

know, I, you know, things will just

set me off, um, and often their partner

 

580

00:34:17,235 --> 00:34:20,905

or, you know, other family member will

verify, yeah, you know, things, you

 

581

00:34:20,905 --> 00:34:22,285

know, they'll get set off fairly easily.

 

582

00:34:23,695 --> 00:34:27,865

Um, and then some of the people

will actually just describe feeling,

 

583

00:34:28,845 --> 00:34:30,185

feeling revved up all the time.

 

584

00:34:31,155 --> 00:34:36,305

Like, they just, you know, they just

can't seem to sort of get calm, um,

 

585

00:34:36,565 --> 00:34:39,455

and obviously many of these people,

not surprisingly, have been, you know,

 

586

00:34:39,455 --> 00:34:44,725

diagnosed or treated for anxiety, you

know, with or without success, but based

 

587

00:34:44,725 --> 00:34:49,335

on some of these symptoms, and so, all

of those, in my mind, are consistent

 

588

00:34:49,335 --> 00:34:55,250

with something You know, not peripheral,

like they're not doing stuff, right, but

 

589

00:34:55,250 --> 00:34:59,220

something that, you know, just, you know,

rapidly increases their sympathetic tone.

 

590

00:34:59,770 --> 00:35:04,670

And so, my go to drug for that, if I

hear that consolation after warning

 

591

00:35:04,670 --> 00:35:08,200

patients that this could make you

feel horrible, um, is methyldopa.

 

592

00:35:09,235 --> 00:35:12,175

Right, so this is a very old

school antihypertensive drug.

 

593

00:35:12,185 --> 00:35:18,165

It's still a correct internal medicine

board exam answer for drugs you

 

594

00:35:18,165 --> 00:35:22,895

can safely give pregnant women with

hypertension, but in most centers

 

595

00:35:22,895 --> 00:35:24,395

it's not very commonly used anymore.

 

596

00:35:24,410 --> 00:35:29,140

There are other kinder, gentler drugs,

and in fact, you know, many of my U.

 

597

00:35:29,140 --> 00:35:29,270

S.

 

598

00:35:29,290 --> 00:35:31,230

colleagues are telling me they're

having trouble getting it now,

 

599

00:35:31,230 --> 00:35:33,840

and so they've sort of switched

to other central sympatholytics.

 

600

00:35:34,390 --> 00:35:39,190

Um, you know, the key with methodopa is,

you know, it's, it's, it's blunt, and

 

601

00:35:39,190 --> 00:35:42,890

I started at a low dose, I started at

night, because fatigue is a main side

 

602

00:35:42,890 --> 00:35:45,985

effect, and if you're gonna Be tired

better at night than during the day.

 

603

00:35:46,625 --> 00:35:49,585

Um, and then, you know, we

start low and then we sometimes

 

604

00:35:49,585 --> 00:35:51,165

have to titrate up at night.

 

605

00:35:51,285 --> 00:35:53,035

And sometimes we only

need to use it at night.

 

606

00:35:53,235 --> 00:35:55,655

It just, by settling things down

at night and they sleep better,

 

607

00:35:55,655 --> 00:35:56,915

that helps enough during the day.

 

608

00:35:57,385 --> 00:36:00,055

But then I have other patients that

say, well, yeah, that's great, but,

 

609

00:36:00,125 --> 00:36:03,245

you know, at some point in the morning,

they'll tell me a very specific time.

 

610

00:36:04,495 --> 00:36:07,335

That my symptoms come back with

a vengeance, and that's usually a

 

611

00:36:07,335 --> 00:36:11,265

trigger that they need another daily

dose, right, it's a, it's a, but it's

 

612

00:36:11,415 --> 00:36:18,065

typically a BID drug, TID, um, but it's

a twice a day drug, so you don't expect

 

613

00:36:18,145 --> 00:36:23,125

the bedtime dose to work all day and

night, sometimes night's enough, but

 

614

00:36:23,145 --> 00:36:28,820

it's, you know, I, We'll always tell

people, this is the Marmite of drugs.

 

615

00:36:29,650 --> 00:36:33,009

Um, you know what Marmite is?

 

616

00:36:33,010 --> 00:36:37,620

My wife is British, and so this,

it's a yeast based, savoury spread.

 

617

00:36:38,300 --> 00:36:39,570

Um, that's popular in England.

 

618

00:36:39,570 --> 00:36:43,520

There's a cousin of it in Australia called

Vegemite that is a little bit different.

 

619

00:36:43,520 --> 00:36:44,580

Ah, yes, I have heard of it.

 

620

00:36:45,420 --> 00:36:50,210

Um, but Marmite, you know, it's actually

a very interesting, um, interesting thing.

 

621

00:36:50,230 --> 00:36:55,995

Their entire ad campaign for several

years Is entirely based on the fact

 

622

00:36:56,005 --> 00:36:58,475

that lots of people hate it, right?

 

623

00:36:58,735 --> 00:37:01,605

Like that it's a niche thing

and the punchline is you

 

624

00:37:01,605 --> 00:37:02,645

either love it or you hate it.

 

625

00:37:02,655 --> 00:37:07,415

So, for example, I was giving a talk last

week and I was trying to pull in a little,

 

626

00:37:07,475 --> 00:37:12,405

you know, ad, like a little video thing

into my talk and, you know, the one that

 

627

00:37:12,445 --> 00:37:17,355

my wife told me not to use was of a, A

woman who was breastfeeding a baby and,

 

628

00:37:17,665 --> 00:37:21,465

you know, a toast had popped up and she

pulled it on a plate and then she had a

 

629

00:37:21,465 --> 00:37:24,675

little squeezy marmite, so it was actually

advertising the squeezy bottles, you

 

630

00:37:24,675 --> 00:37:28,495

know, so with one hand she could put the

marmite on and she took a bite and all of

 

631

00:37:28,495 --> 00:37:32,385

a sudden the baby stopped feeding, pulled

away, looked at her and then projectile

 

632

00:37:32,395 --> 00:37:34,335

vomited at her for about 10 seconds.

 

633

00:37:34,425 --> 00:37:34,955

Oh no!

 

634

00:37:35,920 --> 00:37:38,350

And remember, these are the people

trying to sell you Marmite that

 

635

00:37:38,350 --> 00:37:39,400

are putting this ad on, right?

 

636

00:37:39,830 --> 00:37:43,540

But, but, the whole point is that I,

Methyl Dopamine, I think most of the

 

637

00:37:43,540 --> 00:37:45,740

central sympatholytic drugs are like this.

 

638

00:37:46,070 --> 00:37:51,380

The people that respond to this, I've had

more people tell me that this is the best

 

639

00:37:51,380 --> 00:37:53,040

drug they've ever been on for anything.

 

640

00:37:53,040 --> 00:37:55,009

Right?

 

641

00:37:56,170 --> 00:37:59,140

But, if you're not in that

right group, you will hate it.

 

642

00:38:00,180 --> 00:38:00,370

Right?

 

643

00:38:00,370 --> 00:38:03,930

So that's, that's the challenge, is you

have to, so this is where, you know,

 

644

00:38:04,915 --> 00:38:07,765

There's a lot of things we do generically

for POTS, but this is one of those

 

645

00:38:07,775 --> 00:38:12,005

more subtle, you know, personalized,

characteristic things, and it's not

 

646

00:38:12,005 --> 00:38:16,295

based on the label of hyperadrenergic

POTS or H POTS, but it's based on

 

647

00:38:16,295 --> 00:38:19,745

specific characteristics that do seem

to predict response to treatment.

 

648

00:38:19,975 --> 00:38:23,225

Now, let me say, everything

I've said over the last several

 

649

00:38:23,225 --> 00:38:25,954

minutes has no objective purpose.

 

650

00:38:26,215 --> 00:38:27,365

You know, trial data, right?

 

651

00:38:27,365 --> 00:38:31,845

This is a clinical experience thing and,

and at some point, you know, we probably

 

652

00:38:32,145 --> 00:38:36,265

would want to study this, but this gets

into sort of the difficulties of arranging

 

653

00:38:36,265 --> 00:38:41,815

studies in, you know, subtypes of, uh, you

know, disorders where the initial studies

 

654

00:38:41,815 --> 00:38:44,535

are difficult to begin with in the first

place, but, but hopefully we'll get there.

 

655

00:38:45,615 --> 00:38:47,515

Yeah, no, that absolutely makes sense.

 

656

00:38:47,645 --> 00:38:51,145

We are going to take a quick break

and when we come back, we are going

 

657

00:38:51,145 --> 00:38:54,085

to dig into, uh, one of the things

I've been really dying to ask you

 

658

00:38:54,085 --> 00:38:59,365

about is, I think I've heard you say

that people with POTS feel faint, but

 

659

00:38:59,365 --> 00:39:01,555

people with POTS usually don't faint.

 

660

00:39:02,175 --> 00:39:06,425

And uh, I, I want to ask you

about vasovagal syncope or

 

661

00:39:06,455 --> 00:39:07,815

neurocardiogenic syncope.

 

662

00:39:07,815 --> 00:39:10,795

I know they're not the same thing, but

I want to, we want to talk about that.

 

663

00:39:10,815 --> 00:39:12,945

And we're of course going to talk

more about treatment options.

 

664

00:39:12,955 --> 00:39:14,325

So we'll be right back.

 

665

00:39:17,830 --> 00:39:21,590

This episode of the Bendy Bodies

podcast is brought to you by EDS

 

666

00:39:21,590 --> 00:39:24,590

Guardians, paying it forward in the

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667

00:39:24,830 --> 00:39:26,620

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668

00:39:27,110 --> 00:39:29,500

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669

00:39:29,510 --> 00:39:32,830

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670

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Now seeking donors,

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671

00:39:36,550 --> 00:39:39,270

Patient advocacy and support

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672

00:39:39,520 --> 00:39:41,990

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673

00:39:42,380 --> 00:39:45,380

Learn more, shop for a cause

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674

00:39:45,380 --> 00:39:47,430

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675

00:39:47,450 --> 00:39:47,880

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676

00:39:49,660 --> 00:39:51,740

Thank you so much for

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677

00:39:51,770 --> 00:39:53,310

We really appreciate your support.

 

678

00:39:53,600 --> 00:39:56,810

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679

00:39:56,840 --> 00:40:00,820

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680

00:40:00,960 --> 00:40:04,810

This helps us reach so many more people

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681

00:40:05,060 --> 00:40:07,890

Thank you so much again and

enjoy the rest of the episode.

 

682

00:40:09,890 --> 00:40:13,460

This is your podcast, so I want

it to be as helpful as possible.

 

683

00:40:13,840 --> 00:40:17,380

In the description of this podcast is a

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684

00:40:17,830 --> 00:40:21,640

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685

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686

00:40:25,270 --> 00:40:27,820

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687

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688

00:40:33,200 --> 00:40:34,540

Okay, we are back with Dr.

 

689

00:40:34,540 --> 00:40:39,640

Raj talking about POTS and other forms

of dysautonomia and I believe that

 

690

00:40:39,640 --> 00:40:44,460

I've heard you say this at a conference

but I just want to clarify about if

 

691

00:40:44,460 --> 00:40:49,280

people with POTS feel faint or if

they do faint or if they can do both.

 

692

00:40:49,360 --> 00:40:50,460

What are your thoughts on that?

 

693

00:40:51,470 --> 00:40:56,800

So I think that the point that I've tried

to make at several meetings is that POTS

 

694

00:40:56,800 --> 00:40:59,290

is fundamentally not a fainting disorder.

 

695

00:40:59,960 --> 00:41:01,910

It's fundamentally a

feeling pain disorder.

 

696

00:41:01,910 --> 00:41:05,510

And so one of The things that really

drove this home is one of my first

 

697

00:41:05,510 --> 00:41:09,670

studies at Vanderbilt, we were looking

at blood volume regulation, but also

 

698

00:41:09,830 --> 00:41:13,480

like fluid shifting in response to

tilts, so we were doing 30 minute tilts,

 

699

00:41:13,480 --> 00:41:16,850

and we had a cohort of patients with

POTS, and we had healthy controls,

 

700

00:41:16,890 --> 00:41:22,060

you know, Vanderbilt grad students at

the time, um, and You know, the POTS

 

701

00:41:22,080 --> 00:41:23,450

patients, and we had a symptom rating.

 

702

00:41:23,450 --> 00:41:25,340

Every few minutes we'd

ask a series of symptoms.

 

703

00:41:26,050 --> 00:41:29,700

That was actually the very origin

of what eventually became the

 

704

00:41:29,700 --> 00:41:31,210

Vanderbilt Orthostatic Symptom Score.

 

705

00:41:31,680 --> 00:41:35,140

Um, to sort of track simply

orthostatic symptoms.

 

706

00:41:35,670 --> 00:41:39,870

And so, one of the things that was

interesting is that, you know, the

 

707

00:41:39,880 --> 00:41:43,555

healthy control subjects You know,

they were pretty much asymptomatic.

 

708

00:41:44,135 --> 00:41:46,615

Every once in a while, someone would

get a little bit symptomatic, then

 

709

00:41:46,615 --> 00:41:49,595

they'd faint, and then, you know, be

censored out of the data, and, and they'd

 

710

00:41:49,855 --> 00:41:51,345

who was largely asymptomatic again.

 

711

00:41:51,875 --> 00:41:56,025

In contrast, the POTS patients were

symptomatic almost from the beginning,

 

712

00:41:57,325 --> 00:41:58,845

and they would tell you they were

going to faint, and they kept

 

713

00:41:58,855 --> 00:42:00,725

telling you for almost 30 minutes.

 

714

00:42:00,955 --> 00:42:04,255

When we looked at the data, actually a

higher percentage of the healthy control

 

715

00:42:04,255 --> 00:42:09,915

subjects were lost, or did not survive

the 30 minute tilt than the POTS patients.

 

716

00:42:09,925 --> 00:42:12,135

So more POTS patients made it

through the 30 minute tilt,

 

717

00:42:12,135 --> 00:42:13,305

even though they felt miserable.

 

718

00:42:13,730 --> 00:42:14,390

That whole time.

 

719

00:42:14,960 --> 00:42:17,900

So that's the point I'm making

is that it's a mistake to think

 

720

00:42:17,950 --> 00:42:19,360

about POTS as a fainting disorder.

 

721

00:42:20,040 --> 00:42:24,360

Having said that, probably about 20,

20, 30, depending on the series you're

 

722

00:42:24,360 --> 00:42:27,460

looking at of POTS patients will

faint and the mechanism is usually

 

723

00:42:27,620 --> 00:42:29,960

a reflex faint or vasovagal syncope.

 

724

00:42:30,760 --> 00:42:33,910

So, you know, does fainting

mean you don't have POTS?

 

725

00:42:34,030 --> 00:42:38,050

Well, the fainting wasn't

from the POTS necessarily.

 

726

00:42:38,170 --> 00:42:41,180

It gets a little more complicated

because one can actually

 

727

00:42:41,630 --> 00:42:42,900

contribute to the other, I think.

 

728

00:42:44,010 --> 00:42:47,950

But some POTS patients

will faint, but most don't.

 

729

00:42:48,800 --> 00:42:53,690

And I want to clarify, what I, what I

think you were saying is that, that if the

 

730

00:42:53,690 --> 00:42:57,820

control subject fainted, then you remove

their data, when you say they didn't

 

731

00:42:57,820 --> 00:42:59,420

survive, you don't mean that they died.

 

732

00:43:00,300 --> 00:43:02,850

They didn't survive the tilt, so

they, you know, they didn't make it

 

733

00:43:02,850 --> 00:43:04,160

through the 30 minutes of tilt, right?

 

734

00:43:04,340 --> 00:43:06,239

Everyone, I promise you, everyone was

alive at the end of the 30 minutes.

 

735

00:43:06,400 --> 00:43:07,600

Yeah, at the end of the study,

 

736

00:43:08,120 --> 00:43:11,060

just in case there was one person

who heard that differently.

 

737

00:43:11,060 --> 00:43:12,550

I just wanted to make sure to clarify

 

738

00:43:13,430 --> 00:43:15,140

till table tests do not kill people.

 

739

00:43:15,270 --> 00:43:15,670

Yeah.

 

740

00:43:15,770 --> 00:43:16,010

Yeah.

 

741

00:43:16,220 --> 00:43:19,460

Although, although I, I, I imagine

that they're, they're pretty

 

742

00:43:19,460 --> 00:43:21,880

miserable, especially for 30 minutes,

if you feel like you're going to

 

743

00:43:21,880 --> 00:43:23,650

faint, you know, for, for that long.

 

744

00:43:23,930 --> 00:43:25,520

Yeah, that's definitely tough.

 

745

00:43:26,310 --> 00:43:29,640

I want to make sure that we spend

plenty of time on treatment options, so

 

746

00:43:29,640 --> 00:43:31,120

we're going to come down to that next.

 

747

00:43:31,940 --> 00:43:36,490

You mentioned Methyl Dopa, which I think

was really valuable, how you were sharing

 

748

00:43:36,490 --> 00:43:39,070

how you might start with QHS or evening.

 

749

00:43:39,375 --> 00:43:43,385

Dosing and that you may or may

not add in daytime dosing and

 

750

00:43:43,575 --> 00:43:46,745

you were mentioning specifically

that you, you know, start low.

 

751

00:43:47,215 --> 00:43:53,215

Um, are you able to share a number

for like the average size, you know,

 

752

00:43:53,615 --> 00:43:55,765

patient how low you would start usually?

 

753

00:43:56,305 --> 00:43:57,285

Methyldopa,

 

754

00:43:58,005 --> 00:44:02,065

every patient actually, um, that

I started on gets 125 milligrams.

 

755

00:44:02,415 --> 00:44:02,725

Okay,

 

756

00:44:02,795 --> 00:44:06,365

at bedtime, which is, you know, either

one pill or half a pill depending on,

 

757

00:44:06,555 --> 00:44:08,015

on how your pills are constructed.

 

758

00:44:08,255 --> 00:44:08,565

Mm hmm.

 

759

00:44:08,585 --> 00:44:12,975

Um, so it's a pretty low dose, uh,

and, you know, in theory, you can

 

760

00:44:12,975 --> 00:44:15,975

actually go down to half of that if

you don't tolerate it, but usually

 

761

00:44:15,975 --> 00:44:18,105

the problem is that that's not enough.

 

762

00:44:18,145 --> 00:44:21,905

But I'd rather start at the not

enough and go up than just whack

 

763

00:44:21,915 --> 00:44:24,295

people with so much that they feel

miserable for a different reason.

 

764

00:44:24,940 --> 00:44:29,460

Sure, and could that, uh, waking up

with the racing heart rate, could

 

765

00:44:29,460 --> 00:44:30,970

that be caused by sleep apnea?

 

766

00:44:32,000 --> 00:44:38,830

So, um, less likely sleep apnea, um,

in fact, you know, we have, when I

 

767

00:44:38,830 --> 00:44:42,390

was at Vanderbilt, we actually were,

did a series of studies trying to

 

768

00:44:42,390 --> 00:44:45,930

understand the sleep issues in POTS

and starting with questionnaires where

 

769

00:44:45,940 --> 00:44:49,200

lots of people describe sleep problems,

we did actigraphy based studies.

 

770

00:44:49,750 --> 00:44:53,950

Um, where, you know, clearly their sleep

wasn't as good, and, and in a cohort, I

 

771

00:44:53,960 --> 00:44:59,060

think it was 18 or 19 people, we actually

put them through formal sleep studies.

 

772

00:44:59,610 --> 00:45:03,050

And, I think one person had some apnea,

 

773

00:45:03,440 --> 00:45:03,930

right?

 

774

00:45:03,940 --> 00:45:07,810

Most of what we saw was insomnia,

and, and this is something that, uh,

 

775

00:45:07,810 --> 00:45:10,860

you know, not a sleep person, and I

hadn't thought about it, but there

 

776

00:45:10,860 --> 00:45:12,170

are actually two types of insomnia.

 

777

00:45:12,170 --> 00:45:16,000

There's the, I can't get to sleep, and

then there's the, I wake up after several

 

778

00:45:16,000 --> 00:45:17,320

hours and I can't get back to sleep.

 

779

00:45:17,845 --> 00:45:20,455

Um, and some patients have one or

the other and some have both, but

 

780

00:45:20,455 --> 00:45:21,735

that's actually the main problem.

 

781

00:45:22,255 --> 00:45:25,975

Um, there may be restless leg, you

know, syndrome that's seen in some of

 

782

00:45:25,975 --> 00:45:30,475

the folks as well, and that, you know,

has some treatment approaches, but the

 

783

00:45:30,475 --> 00:45:34,215

challenge is understanding, you know,

the, you know, the cause of this insomnia.

 

784

00:45:34,215 --> 00:45:38,295

So, to the sleep apnea point, right,

if you have obstructive sleep apnea,

 

785

00:45:38,355 --> 00:45:42,075

you know, absolutely, I recommend

using CPAP and other treatments for

 

786

00:45:42,075 --> 00:45:43,395

it, and if that helps, that's great.

 

787

00:45:43,955 --> 00:45:47,795

Um, I actually used to wonder whether

this was related to sort of a REM

 

788

00:45:47,795 --> 00:45:52,470

cycle and You know, certainly in older

patients, um, with some of the neurogenic

 

789

00:45:52,490 --> 00:45:56,930

disorders, so patients with multiple

system atrophy, very different demographic

 

790

00:45:56,930 --> 00:46:00,710

than, you know, the audience, I suspect,

you know, they can get something called

 

791

00:46:00,710 --> 00:46:04,700

a REM sleep behavioral disorder, where

they actually, you know, during REM

 

792

00:46:04,700 --> 00:46:09,530

sleep, where your brain is Going crazy,

but it's supposed to be paralyzed, and

 

793

00:46:09,560 --> 00:46:10,880

things are supposed to be quiescent.

 

794

00:46:10,890 --> 00:46:14,430

Sometimes, you know, there's

a breakdown in the quiescence.

 

795

00:46:14,740 --> 00:46:18,350

Um, and so some people can actually

sort of, you know, have very vivid

 

796

00:46:18,360 --> 00:46:23,000

dreams, act out in their dreams,

you know, sometimes physically hit.

 

797

00:46:23,470 --> 00:46:26,490

They're partners, not intentionally,

and they're like, they are asleep,

 

798

00:46:26,540 --> 00:46:31,160

but they're sort of just flailing

and doing things, and, um, but we

 

799

00:46:31,160 --> 00:46:34,180

also see, you know, sympathetic

tone can increase with that, right?

 

800

00:46:34,180 --> 00:46:38,450

So, the heart rates and the blood

pressures can, can change, and, you

 

801

00:46:38,450 --> 00:46:42,460

know, maybe that's still it, but I

used to think that that was the primary

 

802

00:46:42,460 --> 00:46:46,590

thing, and it was a sleep problem, and

it might be, but we've taken a more

 

803

00:46:46,600 --> 00:46:50,250

pragmatic approach of of trying to

target the sympathetic tone, and that

 

804

00:46:50,250 --> 00:46:51,630

seems to help other things as well.

 

805

00:46:52,870 --> 00:46:56,180

So let's talk about, uh,

some other treatment options.

 

806

00:46:56,180 --> 00:47:00,340

So let's say that, uh, there are some

physicians that listen to this podcast.

 

807

00:47:00,380 --> 00:47:04,090

And so let's say that an internal medicine

physician is listening to this podcast.

 

808

00:47:04,090 --> 00:47:07,270

And of course, with COVID, we know

that there are more people, uh, now

 

809

00:47:07,270 --> 00:47:09,400

with POTS than there have been before.

 

810

00:47:09,600 --> 00:47:12,020

And let's say that this internal

medicine physician wants to

 

811

00:47:12,020 --> 00:47:14,680

help treat this patient's POTS.

 

812

00:47:15,000 --> 00:47:18,750

Can you go through kind of like

the, Different steps of treatment

 

813

00:47:18,790 --> 00:47:21,990

options that you would approach

in that kind of a patient.

 

814

00:47:22,570 --> 00:47:30,540

So, the foundation of treatment is non

pharmacological and then we layer on

 

815

00:47:30,810 --> 00:47:32,590

pharmacological therapies on top of that.

 

816

00:47:32,630 --> 00:47:34,820

It's really a this or that situation.

 

817

00:47:34,830 --> 00:47:36,820

Usually it's a this and that situation.

 

818

00:47:37,520 --> 00:47:43,130

Our non pharmacological treatments

are largely based on on the, what

 

819

00:47:43,130 --> 00:47:45,050

we think is the underlying problem.

 

820

00:47:45,470 --> 00:47:47,830

And in most people, the

heart rate is a response.

 

821

00:47:48,430 --> 00:47:53,620

One of the common features that has

been seen by different groups, Mayo's

 

822

00:47:53,640 --> 00:47:57,300

reported it, UT Southwestern's reported

it, we've had data at Vanderbilt and now

 

823

00:47:57,300 --> 00:48:00,790

in Calgary, um, and it's been reported

in other disorders as well, the patients

 

824

00:48:00,790 --> 00:48:02,640

seem to have a low stroke volume, right?

 

825

00:48:02,640 --> 00:48:06,760

So, for the patients out there, basically,

a stroke volume is a way, a fancy way

 

826

00:48:06,760 --> 00:48:09,849

of saying, every time your heart beats,

a certain amount of blood circulates.

 

827

00:48:10,700 --> 00:48:11,720

Leaves, right?

 

828

00:48:11,720 --> 00:48:13,640

It, it pumps a certain amount

of blood with every beat.

 

829

00:48:14,140 --> 00:48:16,630

Um, and then if you add that

up for a whole minute, we call

 

830

00:48:16,630 --> 00:48:17,920

that cardiac output, right?

 

831

00:48:18,040 --> 00:48:22,550

But cardiac output is largely made

up of stroke, volume and heart rate.

 

832

00:48:22,910 --> 00:48:27,380

So if you need more blood, you're

trying to be more active, your muscles

 

833

00:48:27,590 --> 00:48:29,510

are requiring more blood in a minute.

 

834

00:48:30,085 --> 00:48:32,695

And your stroke volume is low

and you can't increase it,

 

835

00:48:32,705 --> 00:48:34,935

the only way to increase it is

by increasing the heart rate.

 

836

00:48:35,785 --> 00:48:37,665

And so that's how these

two things are related.

 

837

00:48:37,665 --> 00:48:41,175

And so we think that, uh, you know,

we found that the stroke volume is

 

838

00:48:41,175 --> 00:48:46,705

low, when measured, in a different,

many groups have found this

 

839

00:48:46,725 --> 00:48:48,855

repeatedly in POTS patient cohorts.

 

840

00:48:50,445 --> 00:48:53,455

And so the, part of the assumption

has been, well, maybe that's the

 

841

00:48:53,455 --> 00:48:55,555

underlying issue and the heart

rate is a response to that.

 

842

00:48:56,035 --> 00:48:57,725

Right, through the

sympathetic nervous system.

 

843

00:48:58,395 --> 00:49:01,945

And so, strategies have been

targeting, trying to improve that.

 

844

00:49:02,045 --> 00:49:05,255

One of them is to try and improve

the blood, increase the blood volume.

 

845

00:49:05,745 --> 00:49:08,605

Increase the amount of blood in the

volume, the liquid part in particular.

 

846

00:49:09,175 --> 00:49:12,675

This was, as I mentioned, one of the

interests that we had at Vanderbilt was

 

847

00:49:13,045 --> 00:49:16,844

actually blood volume in pots, and when we

looked objectively to measure it, about 70

 

848

00:49:16,845 --> 00:49:20,355

percent had a low blood volume, but this

is a hard thing to be very precise about

 

849

00:49:20,875 --> 00:49:25,850

and measure, and certainly, it involves

Generally speaking, nuclear medicine tests

 

850

00:49:25,850 --> 00:49:27,550

and it's not always easily accessible.

 

851

00:49:28,580 --> 00:49:31,070

It's common enough that we treat it.

 

852

00:49:31,100 --> 00:49:31,990

We try to treat it.

 

853

00:49:32,560 --> 00:49:36,960

Non pharmacologically in everyone and

we do that by trying to get people to

 

854

00:49:36,960 --> 00:49:41,860

hold on to more fluid So the first part

of the strategy is drink more water I

 

855

00:49:41,860 --> 00:49:44,900

try and get all my patients to drink

at least three liters of water per day

 

856

00:49:45,560 --> 00:49:49,990

Having said that almost all my patients

can do this the ones that can't are in

 

857

00:49:49,990 --> 00:49:53,640

a minority of patients that have major

gut issues that actually limits them.

 

858

00:49:53,730 --> 00:49:55,610

But most patients can do

it, but you have to try.

 

859

00:49:56,200 --> 00:49:58,270

If you're doing it, if you're

drinking when you're thirsty,

 

860

00:49:58,270 --> 00:49:59,560

you're not going to get there.

 

861

00:50:00,030 --> 00:50:03,960

And so the approach that I've taken

is to actually try and, is to get

 

862

00:50:03,960 --> 00:50:05,530

patients to have a water bottle.

 

863

00:50:06,370 --> 00:50:11,420

Um, and, by a water bottle, I, I

have, you know, I would analogize

 

864

00:50:11,460 --> 00:50:13,710

to NFL football teams, right?

 

865

00:50:13,710 --> 00:50:16,210

There's a saying in football that

if you have three quarterbacks,

 

866

00:50:16,210 --> 00:50:17,410

you don't have a quarterback.

 

867

00:50:17,830 --> 00:50:20,330

I don't want people to have a drawer

full of water bottles and they can

 

868

00:50:20,330 --> 00:50:22,450

grab, like, you know, one each day.

 

869

00:50:22,450 --> 00:50:25,340

I want them to have a dedicated

water bottle that they love.

 

870

00:50:26,090 --> 00:50:29,330

When there's a family portrait, I

want, I want them in the picture, I

 

871

00:50:29,330 --> 00:50:31,370

want their family in the picture, and

I want the water bottle in the picture

 

872

00:50:31,400 --> 00:50:32,580

because I want it to be a part of them.

 

873

00:50:32,680 --> 00:50:37,070

I want people to think that I have

surgically sutured the bottle onto

 

874

00:50:37,070 --> 00:50:38,590

their hand because it's always there.

 

875

00:50:39,450 --> 00:50:42,680

In fact, if they come to clinic and I ask

them if they have a water bottle and they

 

876

00:50:42,680 --> 00:50:44,620

say yes, my next question is where is it?

 

877

00:50:44,630 --> 00:50:46,620

And if they say they left it

in the car, that's a fail.

 

878

00:50:46,900 --> 00:50:50,200

Because I want that water bottle

literally to be so important to them

 

879

00:50:50,200 --> 00:50:51,450

that they keep it with them all the time.

 

880

00:50:51,650 --> 00:50:54,500

If I go to see my doctor, I don't

leave my glasses in the car, right?

 

881

00:50:54,500 --> 00:50:55,430

The glasses come with me.

 

882

00:50:55,430 --> 00:51:00,985

I want the water bottle to have that same

status, and with that, honestly, most

 

883

00:51:00,985 --> 00:51:04,185

of our patients can do it, and that's a

floor, that's not an aspirational target.

 

884

00:51:04,525 --> 00:51:08,095

So, in the summer, when it's

hot, when their requirements go

 

885

00:51:08,095 --> 00:51:09,265

up, that might go up from there.

 

886

00:51:09,605 --> 00:51:11,165

Right, but 3 litres is what I've said.

 

887

00:51:11,595 --> 00:51:14,685

And the other advantage of having

one water bottle is, it has one size.

 

888

00:51:15,120 --> 00:51:18,980

And so you can figure out how much it

takes, you can do the math once, use

 

889

00:51:18,980 --> 00:51:21,720

a calculator if needed, figure out

how many of those bottles you need to

 

890

00:51:21,720 --> 00:51:24,350

get in through the day, and then you

don't have to sit there and add up a

 

891

00:51:24,350 --> 00:51:27,000

little bit of this, and well this cup

was a little smaller, and that must

 

892

00:51:27,000 --> 00:51:29,220

count for this, and it's, it's easier.

 

893

00:51:30,470 --> 00:51:33,580

So, that's fine, you're going to

pee out most of that water, but the

 

894

00:51:33,580 --> 00:51:36,080

idea is it's probably good for you,

it flushes out the kidneys a bit,

 

895

00:51:36,460 --> 00:51:38,950

it allows your kidneys to hold on

to whatever it wants to hold on to.

 

896

00:51:39,920 --> 00:51:43,980

One of the big predictors of what the

kidney will hold on to is the sodium load.

 

897

00:51:44,570 --> 00:51:48,975

And so we want People to take in more

sodium, so their kidneys hold on to

 

898

00:51:48,975 --> 00:51:52,245

more of the sodium, and the water will

follow, and they'll retain the fluid.

 

899

00:51:53,645 --> 00:51:59,585

You know, the truth is, until fairly

recently, there wasn't good data that

 

900

00:51:59,585 --> 00:52:00,905

it worked, even though this was sort of

 

901

00:52:01,465 --> 00:52:01,545

the

 

902

00:52:01,545 --> 00:52:03,195

advice doctors had given for a long time.

 

903

00:52:04,075 --> 00:52:07,335

But we actually did a study at

Vanderbilt, this was sort of the

 

904

00:52:07,335 --> 00:52:08,875

last big study before I left.

 

905

00:52:09,330 --> 00:52:11,990

That was NIH funded, where we

actually brought patients in with

 

906

00:52:11,990 --> 00:52:13,970

POTS and healthy control subjects.

 

907

00:52:14,030 --> 00:52:19,070

These were all women of childbearing age,

both, in both groups, into the research

 

908

00:52:19,070 --> 00:52:22,830

unit at Vanderbilt for seven days, twice.

 

909

00:52:23,420 --> 00:52:28,080

During one of the phases, we fed

them a really low sodium diet.

 

910

00:52:28,780 --> 00:52:30,620

This was as little sodium

as we could get in.

 

911

00:52:30,620 --> 00:52:32,290

We wanted to target 10 mL equivalents.

 

912

00:52:32,710 --> 00:52:35,440

It turns out we can't guarantee

that because that's so low that

 

913

00:52:35,440 --> 00:52:38,160

our assays for detection were

a little bit higher than that.

 

914

00:52:38,530 --> 00:52:40,160

Right, but really, really low levels.

 

915

00:52:40,390 --> 00:52:43,560

And during the other phase, we put them

on a high sodium, really high sodium diet.

 

916

00:52:43,680 --> 00:52:47,300

And for the better part of

the 7 days, for 6 days, we did

 

917

00:52:47,300 --> 00:52:48,900

nothing besides let them eat.

 

918

00:52:49,340 --> 00:52:51,410

Because we wanted to get

them into sodium balance.

 

919

00:52:52,260 --> 00:52:55,150

And then, at the end, we

analyzed a bunch of things.

 

920

00:52:55,190 --> 00:52:57,250

We looked at their blood volume.

 

921

00:52:57,320 --> 00:52:59,620

We formally measured blood

volume in both phases.

 

922

00:52:59,640 --> 00:53:03,740

We looked at, um, we did the

standing test, and we looked at the

 

923

00:53:03,740 --> 00:53:05,160

norepinephrine levels on standing.

 

924

00:53:05,350 --> 00:53:08,580

And of course, we looked at the heart rate

response, the orthostatic tachycardia,

 

925

00:53:08,580 --> 00:53:10,510

and we tried to, you know, track symptoms.

 

926

00:53:11,160 --> 00:53:17,185

And, what we found is that, Increasing

the dietary salt intake did what we

 

927

00:53:17,185 --> 00:53:21,175

thought it would do, increase the

plasma volume, the liquid part of blood.

 

928

00:53:21,955 --> 00:53:25,725

Now, we only did this for a week,

the red cell volume didn't change,

 

929

00:53:26,055 --> 00:53:29,555

not surprisingly, but the blood

volume increase was all because

 

930

00:53:29,555 --> 00:53:30,395

of the liquid part of blood.

 

931

00:53:31,385 --> 00:53:36,905

We noted that the norepinephrine level

on standing, it decreased, it went

 

932

00:53:36,905 --> 00:53:38,465

from ridiculously high to just high.

 

933

00:53:38,645 --> 00:53:41,915

Right, it didn't normalize fully, it

didn't look like the control subjects

 

934

00:53:41,915 --> 00:53:43,625

afterwards, but it improved a lot.

 

935

00:53:44,310 --> 00:53:48,500

And one of the important things about

that is that I sometimes get told that

 

936

00:53:48,530 --> 00:53:51,580

oh, I don't think I should be doing that

because I have hyperadrenergic POTS.

 

937

00:53:51,710 --> 00:53:51,990

Right?

 

938

00:53:51,990 --> 00:53:54,940

I don't love the labels, but these

norepinephrine levels were high

 

939

00:53:54,940 --> 00:53:57,580

enough that, you know, in some

studies, these people would be

 

940

00:53:57,580 --> 00:53:59,110

considered hyperadrenergic POTS.

 

941

00:53:59,930 --> 00:54:01,290

And they improved.

 

942

00:54:01,655 --> 00:54:04,565

Right, their norepinephrine went down

when we gave them salt, it didn't go up.

 

943

00:54:05,175 --> 00:54:06,855

Right, so, that happened.

 

944

00:54:07,115 --> 00:54:10,775

And the orthostatic tachycardia, the

heart rate increase, it decreased as

 

945

00:54:10,775 --> 00:54:12,605

well, so it didn't go up quite as much.

 

946

00:54:13,115 --> 00:54:16,715

Again, we didn't normalize people,

there's more to it than blood volume and

 

947

00:54:16,715 --> 00:54:18,865

salts, right, but we made them better.

 

948

00:54:19,585 --> 00:54:21,545

And the symptoms seemed

to improve as well.

 

949

00:54:22,195 --> 00:54:23,845

Right, so, it seemed to work.

 

950

00:54:23,865 --> 00:54:27,145

So, from a practical point of

view, if you use a combination of

 

951

00:54:27,145 --> 00:54:31,015

the heart rhythm society, Position

statement on POTS from 2015 and the

 

952

00:54:31,025 --> 00:54:32,425

Canadian Cardiovascular Society.

 

953

00:54:33,105 --> 00:54:34,705

About 10 grams is recommended.

 

954

00:54:34,785 --> 00:54:37,145

The truth is, we don't have great

data on the exact amount, but

 

955

00:54:37,145 --> 00:54:41,045

10 grams sort of is in the range

of what people are recommending.

 

956

00:54:41,905 --> 00:54:46,755

And so, the challenge for us is, is how

do you figure out what 10 grams is, right?

 

957

00:54:46,775 --> 00:54:50,485

I I can't figure out myself how to sit

there and add up all the little bits

 

958

00:54:50,485 --> 00:54:54,355

of sodium and salt that, you know,

that I'm eating and saying, okay,

 

959

00:54:54,355 --> 00:54:58,695

this is how much you're taking in, and

so, I can't teach my patients to do

 

960

00:54:58,695 --> 00:55:00,455

it if I can't do it, and so I don't.

 

961

00:55:00,875 --> 00:55:03,565

The approach I take is to

say, okay, a teaspoon of salt.

 

962

00:55:03,940 --> 00:55:05,110

is about 5 grams.

 

963

00:55:05,520 --> 00:55:08,120

And so, basically what we're

trying to get you to do is take an

 

964

00:55:08,120 --> 00:55:09,730

extra 2 teaspoons of salt a day.

 

965

00:55:10,840 --> 00:55:13,660

And so, you could take it all at

once and just chomp on it, but

 

966

00:55:13,660 --> 00:55:14,970

that's really the hard way to do it.

 

967

00:55:15,410 --> 00:55:16,850

So don't typically recommend that.

 

968

00:55:16,990 --> 00:55:20,090

What I ask people to do is to take

a couple of teaspoons of salt and

 

969

00:55:20,090 --> 00:55:25,250

put it into a container, a Ziploc

bag, Glad bag, Ziploc won't give me

 

970

00:55:25,250 --> 00:55:26,900

any sponsorship, so use a Glad bag.

 

971

00:55:27,250 --> 00:55:30,580

In some container, doesn't matter

what it is, and then Instead of

 

972

00:55:30,580 --> 00:55:34,460

shaking salt on from whatever random

source you have, add it from the bag.

 

973

00:55:34,810 --> 00:55:35,240

And that

 

974

00:55:35,240 --> 00:55:38,000

way, you know, you roughly know

how much you're getting in.

 

975

00:55:39,200 --> 00:55:42,640

Someone could argue, well, you know, how

big a teaspoon, because while a teaspoon

 

976

00:55:42,650 --> 00:55:45,130

is a formal measurement, most of us

use whatever we have in the kitchen.

 

977

00:55:46,110 --> 00:55:47,640

And the truth is, it

doesn't really matter.

 

978

00:55:47,640 --> 00:55:49,830

I think this is a horseshoes

and hand grenades sort of thing.

 

979

00:55:49,840 --> 00:55:52,010

Like, if you're close, we

want to get you close, right?

 

980

00:55:52,010 --> 00:55:54,190

You don't have to be really,

really precise about this.

 

981

00:55:54,770 --> 00:55:59,640

And the whole idea is, get the

sodium in, pull in the fluid.

 

982

00:55:59,890 --> 00:56:02,980

You know, this amount of sodium,

it doesn't typically affect

 

983

00:56:03,210 --> 00:56:04,540

the plasma sodium that much.

 

984

00:56:04,540 --> 00:56:07,820

It may go up by a point or two,

but I've never seen someone get

 

985

00:56:07,820 --> 00:56:11,410

hypernatremia from this, because the

whole idea is that you're trying to

 

986

00:56:11,420 --> 00:56:14,790

bring the fluid in with it, so the

concentration shouldn't change too much.

 

987

00:56:14,850 --> 00:56:15,500

That's the goal.

 

988

00:56:16,100 --> 00:56:20,173

And if someone does this properly, and

they were on a low sodium diet to begin

 

989

00:56:20,173 --> 00:56:25,430

with, Then, they will retain fluid, and we

want that in the bloodstream, but it's not

 

990

00:56:25,450 --> 00:56:28,550

just in the bloodstream, it's throughout

their body, so they may actually feel

 

991

00:56:28,560 --> 00:56:32,050

a little bit of tissue edema, and

that's actually, you know, may not be a

 

992

00:56:32,050 --> 00:56:35,380

pleasant thing, but it's a good thing,

and they may gain a little weight, and

 

993

00:56:35,380 --> 00:56:38,540

by a little weight, I mean a few pounds,

not 20 pounds, right, but water, if you

 

994

00:56:38,560 --> 00:56:41,650

retain a liter of water, that's That's

a kilogram, that's a couple of pounds.

 

995

00:56:41,660 --> 00:56:45,780

So all that is sort of par for what

we're trying to get done here, right?

 

996

00:56:45,780 --> 00:56:50,370

And the truth is I'm very prescriptive

about how I get people to take

 

997

00:56:50,380 --> 00:56:53,970

their salt and water in, but I've

had many patients come back and

 

998

00:56:53,970 --> 00:56:58,690

tell me with sometimes surprise how

noticeable they feel better with that.

 

999

00:56:59,510 --> 00:57:04,870

And the thing is, everyone I see has

probably been told to take salt and water,

 

1000

00:57:05,030 --> 00:57:10,120

more salt and water, but then when I

tell it to them in this more prescriptive

 

1001

00:57:10,130 --> 00:57:12,400

way, they still notice a benefit, right?

 

1002

00:57:12,400 --> 00:57:17,440

So how you do it And the practical do it

this way actually can make a difference

 

1003

00:57:17,440 --> 00:57:18,930

as opposed to just try and do better.

 

1004

00:57:19,420 --> 00:57:21,810

Right, telling people to do better,

people aren't trying to do badly, just

 

1005

00:57:21,810 --> 00:57:24,810

saying do better doesn't help unless

you give them a practical strategy.

 

1006

00:57:25,440 --> 00:57:28,440

So that's all about increasing the blood

volume, filling up the tank more and

 

1007

00:57:28,450 --> 00:57:29,990

hoping more blood gets back to the heart.

 

1008

00:57:30,350 --> 00:57:34,300

But the next part of the issue is

that our patients typically, with the

 

1009

00:57:34,300 --> 00:57:36,910

exception of those with tachycardia

at night, typically aren't that

 

1010

00:57:36,910 --> 00:57:40,180

symptomatic with their lightheadedness

or palpitation when they're lying

 

1011

00:57:40,180 --> 00:57:41,350

down, it's when they're standing up.

 

1012

00:57:42,430 --> 00:57:44,690

Right, so what happens when we

stand up is the fluid shifts.

 

1013

00:57:45,350 --> 00:57:45,680

Right?

 

1014

00:57:45,820 --> 00:57:49,460

Fluid that sits in the chest where your

heart is, some of it shifts down to

 

1015

00:57:49,460 --> 00:57:50,830

below your chest where your heart isn't.

 

1016

00:57:51,480 --> 00:57:54,920

That's, you know, probably a big

contributor to the low stroke volume.

 

1017

00:57:55,140 --> 00:57:57,340

Or certainly the drops in stroke volume,

because obviously the heart can't

 

1018

00:57:57,370 --> 00:57:58,900

pump out blood that doesn't come in.

 

1019

00:57:59,500 --> 00:58:02,400

So, the strategy is to get more

of that blood, less of that

 

1020

00:58:02,400 --> 00:58:03,460

blood shifting, if you will.

 

1021

00:58:04,120 --> 00:58:05,919

And that's where compression

garments come in.

 

1022

00:58:06,410 --> 00:58:10,870

And I've had a graduate student who's

now graduated, she's now a medical

 

1023

00:58:10,870 --> 00:58:14,640

student, named Kate Bourne, who's

done some excellent studies looking at

 

1024

00:58:14,640 --> 00:58:19,290

compression in POTS and her first set

of studies published a few years ago now

 

1025

00:58:19,290 --> 00:58:22,760

in the Journal of the American College

of Cardiology was in our research lab

 

1026

00:58:22,760 --> 00:58:27,910

where we got this neoprene and Velcro

segmental compression suit and we brought

 

1027

00:58:27,910 --> 00:58:32,050

in patients and we tilted them four times

in one morning, four ten minute tilts.

 

1028

00:58:32,490 --> 00:58:35,300

So these were heroic patients to put

up with that over and over again.

 

1029

00:58:35,650 --> 00:58:38,590

And in each one, we had a different

compression configuration.

 

1030

00:58:38,600 --> 00:58:42,940

So the extremes were no compression

versus full lower body compression.

 

1031

00:58:42,970 --> 00:58:45,110

Abdomen, thighs, legs.

 

1032

00:58:46,550 --> 00:58:50,395

And what we found was that there

was a Beautiful dose response.

 

1033

00:58:50,645 --> 00:58:53,755

Full compression actually blunted

the heart rate increase on tilt,

 

1034

00:58:53,905 --> 00:58:57,645

10 minute tilt, and improved

symptoms, compared to no compression.

 

1035

00:58:57,945 --> 00:59:00,605

And abdominal compression was

almost as good as full compression,

 

1036

00:59:00,605 --> 00:59:03,325

and calf compression was almost

as useless as no compression.

 

1037

00:59:03,985 --> 00:59:08,520

Right, so when people say get compression

garments, the mistake The gap is, I think

 

1038

00:59:08,520 --> 00:59:13,530

the doctors say, compression garments,

and patients go and get DBT socks, and

 

1039

00:59:13,580 --> 00:59:16,660

they say, well, you know, I've had a few

patients say they think it helps, most say

 

1040

00:59:16,660 --> 00:59:20,870

it did nothing, but that's because that's

not where the fluid goes, so there's

 

1041

00:59:20,870 --> 00:59:25,110

some very elegant studies using segmental

bioelectrical impedance to look at fluid

 

1042

00:59:25,110 --> 00:59:30,500

shifts based on changes in resistance

Tilt people up or stand them up and, um,

 

1043

00:59:31,030 --> 00:59:33,910

probably about 70 percent of the fluid

actually is in your abdomen and pelvis.

 

1044

00:59:34,190 --> 00:59:36,420

In those with pelvic congestion,

probably more, right?

 

1045

00:59:36,450 --> 00:59:38,900

That's because that's the whole

issue is the fluid all sits there.

 

1046

00:59:39,360 --> 00:59:44,610

In about, you know, little under

20 percent actually is probably

 

1047

00:59:44,610 --> 00:59:47,410

in your thighs and a little under

10 percent is in your calves.

 

1048

00:59:47,800 --> 00:59:51,100

So, the problem is you're

squishing in the wrong place.

 

1049

00:59:51,775 --> 00:59:54,335

Right, it's the old story about,

you know, the bank robber asked, why

 

1050

00:59:54,335 --> 00:59:55,755

do you rob, why do you rob banks?

 

1051

00:59:55,915 --> 00:59:56,915

That's where the money is, right?

 

1052

00:59:56,915 --> 00:59:59,835

If you're squishing, the squishing

may be effective, but if there's

 

1053

00:59:59,835 --> 01:00:02,635

nothing to squish out of there,

it's not going to ultimately help.

 

1054

01:00:03,165 --> 01:00:09,505

And so, we actually recommend ideally

full on tights, high waisted tights.

 

1055

01:00:09,645 --> 01:00:11,775

So you want to get that

whole area compressed.

 

1056

01:00:12,475 --> 01:00:15,335

Now, I used to prescribe a lot

of tights, compression tights.

 

1057

01:00:15,680 --> 01:00:16,760

Medical grade tights.

 

1058

01:00:17,090 --> 01:00:21,580

What I tell people to do is to go to

a sporting goods store and purchase

 

1059

01:00:21,580 --> 01:00:24,890

high end athletic wear like triathlon

tights or high end runner stockings.

 

1060

01:00:25,610 --> 01:00:27,270

So the con is that it's not as tight.

 

1061

01:00:27,510 --> 01:00:31,560

So maybe not as effective as it

could be if we squished more.

 

1062

01:00:32,020 --> 01:00:36,120

But the trade off of that is that they're

also more comfortable for that reason.

 

1063

01:00:37,435 --> 01:00:41,565

And, you know, the added thing that I

never considered earlier in my career

 

1064

01:00:41,565 --> 01:00:44,005

is that they're more fashionable, right?

 

1065

01:00:44,005 --> 01:00:48,665

So I am of a generation where when

growing up tights were underwear, right?

 

1066

01:00:49,085 --> 01:00:51,505

My daughter disagrees, right?

 

1067

01:00:51,685 --> 01:00:54,835

My daughter, you know, that's

what she will wear is tights.

 

1068

01:00:55,035 --> 01:00:55,305

Right.

 

1069

01:00:55,305 --> 01:00:57,760

And so if you're going to wear

tights, You might as well wear

 

1070

01:00:57,760 --> 01:00:58,860

something that's not butt ugly.

 

1071

01:00:59,010 --> 01:01:02,010

And, and the truth is that my

daughter is closer to the demographic

 

1072

01:01:02,010 --> 01:01:03,300

of my POTS patients than I am.

 

1073

01:01:03,470 --> 01:01:03,700

Right?

 

1074

01:01:03,700 --> 01:01:07,590

A lot of the POTS patients I see are,

you know, teenagers, early 20s, early

 

1075

01:01:07,630 --> 01:01:09,690

30s, people that grew up wearing tights.

 

1076

01:01:09,690 --> 01:01:13,230

And so, the best tights in the world

don't work if you don't wear them.

 

1077

01:01:13,640 --> 01:01:18,330

Now, the challenge is that even in

Calgary, where we're known for cold

 

1078

01:01:18,330 --> 01:01:21,680

weather, my patients complain that

in the summer they overheat, and

 

1079

01:01:21,680 --> 01:01:24,690

they don't tolerate heat well, and

so they have trouble with the tights.

 

1080

01:01:25,180 --> 01:01:30,670

And so our backup plan, which

until very recently is based on no

 

1081

01:01:30,670 --> 01:01:35,090

evidence, has been to use body shaping

garments like Spanx, or compression

 

1082

01:01:35,090 --> 01:01:37,000

bicycle shorts, something like that.

 

1083

01:01:37,000 --> 01:01:40,920

So again, if you're going to compress,

you know, and you can't compress fully,

 

1084

01:01:41,020 --> 01:01:44,550

target it to the area that's of most

benefit, which is the abdomen and pelvis,

 

1085

01:01:44,560 --> 01:01:48,900

and leave the legs, so you leave more

skin exposed, so you can, you know,

 

1086

01:01:48,980 --> 01:01:52,840

regulate your temperature better, and

not overheat as much, but you still get

 

1087

01:01:52,840 --> 01:01:54,080

some of the benefits of compression.

 

1088

01:01:55,660 --> 01:01:59,230

Now, as I said, the

data hasn't been there.

 

1089

01:02:00,210 --> 01:02:01,920

Kate had done follow up studies.

 

1090

01:02:02,245 --> 01:02:05,075

During COVID actually, looking at

commercial compression garments,

 

1091

01:02:05,085 --> 01:02:07,765

so we designed a study where we

actually sent monitors to people's

 

1092

01:02:07,765 --> 01:02:11,275

homes with instructions on how to do

orthostatic vital signs themselves

 

1093

01:02:11,285 --> 01:02:12,465

at home and send us the data.

 

1094

01:02:12,965 --> 01:02:16,575

And we did put the garments on in the

morning, we did it before and after the

 

1095

01:02:16,575 --> 01:02:19,745

garment in the morning, and before and

after they took it off in the afternoon.

 

1096

01:02:20,255 --> 01:02:21,965

And what we've shown is two things.

 

1097

01:02:21,975 --> 01:02:27,445

One, that commercial tights,

Lower the heart rate.

 

1098

01:02:27,465 --> 01:02:30,575

The upright heart rate is worse in the

morning, but there's a significant effect,

 

1099

01:02:30,585 --> 01:02:33,625

and it not only is it a significant

effect, but it persists for hours.

 

1100

01:02:33,645 --> 01:02:34,815

It works into the afternoon.

 

1101

01:02:35,095 --> 01:02:37,395

And that paper has just been

accepted for publication, actually,

 

1102

01:02:37,395 --> 01:02:40,625

so that's going to be coming out in

the next few weeks, that commercial

 

1103

01:02:40,625 --> 01:02:43,765

garments work, not just the butt ugly

garments that we used in the lab.

 

1104

01:02:44,375 --> 01:02:44,925

Um,

 

1105

01:02:46,940 --> 01:02:51,910

Maybe more exciting is that we actually

have a study that is just been submitted

 

1106

01:02:51,910 --> 01:02:58,110

for publication looking at abdominal focus

compression, so body shaping garments,

 

1107

01:02:58,180 --> 01:03:01,830

um, you know, bicycle shorts, things

like that, and that works too, not as

 

1108

01:03:01,830 --> 01:03:04,420

effectively, the tights are a little

better, right, but if you just look

 

1109

01:03:04,420 --> 01:03:08,560

at does it work compared to, you know,

when you take it off, the answer is yes,

 

1110

01:03:08,590 --> 01:03:14,010

right, so, I mean, we actually have data

now that these practical commercial wear

 

1111

01:03:14,010 --> 01:03:19,080

is type garments can be helpful for our

patients with POTS, in terms of heart

 

1112

01:03:19,080 --> 01:03:20,680

rate response and in terms of symptoms.

 

1113

01:03:21,250 --> 01:03:25,100

So, non pharmacological, we talked about

salt, we talked about water, we talked

 

1114

01:03:25,100 --> 01:03:28,240

about compression garments, and then

the fourth non pharmacological issue

 

1115

01:03:28,240 --> 01:03:29,790

is the toughest, and that's exercise.

 

1116

01:03:30,445 --> 01:03:35,845

You know, there is reasonably good

data, right, not perfectly randomized

 

1117

01:03:35,895 --> 01:03:40,065

controlled data, but data, and the

best data is probably out of Dallas,

 

1118

01:03:40,655 --> 01:03:44,765

that was published about 15 years

ago, where they did a fairly large

 

1119

01:03:44,765 --> 01:03:49,440

before and after study of patients

With a three to six month exercise

 

1120

01:03:49,440 --> 01:03:51,450

program in between for POTS patients.

 

1121

01:03:51,910 --> 01:03:53,880

They measured almost

everything before and after.

 

1122

01:03:53,880 --> 01:03:55,820

It was a physiologically heroic study.

 

1123

01:03:56,200 --> 01:03:58,850

And what they showed was that patients

that went through the program, so

 

1124

01:03:58,850 --> 01:04:01,450

everyone that completed the program,

which in fairness is not the same as

 

1125

01:04:01,450 --> 01:04:04,750

everyone that started it, but everyone

that completed the program improved.

 

1126

01:04:05,115 --> 01:04:08,045

Right, so they improved you, like

they put in, they did cardiac

 

1127

01:04:08,055 --> 01:04:11,925

MRIs, they put central venous

catheters in to measure pressures.

 

1128

01:04:12,505 --> 01:04:15,725

They did micro neurography for nerve

recordings of sympathetic traffic.

 

1129

01:04:16,145 --> 01:04:20,215

You know, as a human physiology

person, it was great, right, they

 

1130

01:04:20,275 --> 01:04:21,555

measured all these great things.

 

1131

01:04:21,775 --> 01:04:23,205

Most patients don't

care about any of that.

 

1132

01:04:23,835 --> 01:04:26,615

Right, but they did measure the

orthostatic heart rate change,

 

1133

01:04:26,665 --> 01:04:28,175

right, and that decreased.

 

1134

01:04:28,185 --> 01:04:30,345

Patients care somewhat about

that because that, they can

 

1135

01:04:30,345 --> 01:04:31,535

sometimes measure themselves.

 

1136

01:04:32,065 --> 01:04:36,605

And they looked at The SF36, a generic

quality of life scale, showed that,

 

1137

01:04:37,165 --> 01:04:40,865

you know, everyone improved, now some

a tiny bit and some a lot, right, so I

 

1138

01:04:40,865 --> 01:04:43,685

don't want to make it sound like this

is the cure all, right, but there was

 

1139

01:04:43,685 --> 01:04:47,355

improvement, and the improvement largely

related to the fact that the cardiac mass

 

1140

01:04:47,375 --> 01:04:51,245

increased, so the stroke volume went up,

right, so coming back to sort of what we

 

1141

01:04:51,245 --> 01:04:52,585

think is part of the underlying problem.

 

1142

01:04:54,345 --> 01:04:56,865

So, that's an important consideration.

 

1143

01:04:56,865 --> 01:05:02,205

Now, one of the things that they did

that was really clever, um, and I'm

 

1144

01:05:02,215 --> 01:05:04,755

still a little bitter that I thought

I didn't think of it before they did,

 

1145

01:05:05,285 --> 01:05:08,565

is that they said, you know, when we

say people, you know, before we'd tell

 

1146

01:05:08,565 --> 01:05:10,905

people to go and exercise and they'd

come back and say they couldn't, right?

 

1147

01:05:10,935 --> 01:05:11,185

Right.

 

1148

01:05:11,565 --> 01:05:13,855

We never told them how, and

one of the things they said is,

 

1149

01:05:13,855 --> 01:05:17,415

okay, well, these patients feel

miserable when they're standing up.

 

1150

01:05:18,425 --> 01:05:21,605

You know, we probably shouldn't have

them stand up and exercising, but, you

 

1151

01:05:21,605 --> 01:05:26,155

know, it's worth trying this in clinic if

you're a physician, you know, out there,

 

1152

01:05:26,165 --> 01:05:29,685

that, you know, when you tell people

to exercise, ask what they heard, what

 

1153

01:05:29,685 --> 01:05:33,395

they, what they think that means, and

most people will say something along the

 

1154

01:05:33,405 --> 01:05:37,570

lines of walking, running, treadmills,

those evil elliptical things, Right?

 

1155

01:05:37,640 --> 01:05:39,670

I mean, it's all vertical exercise, right?

 

1156

01:05:39,670 --> 01:05:41,330

People think of exercise as vertical,

 

1157

01:05:41,570 --> 01:05:41,930

right?

 

1158

01:05:42,490 --> 01:05:44,560

So these guys said, no,

not in the beginning.

 

1159

01:05:44,620 --> 01:05:47,600

And so they recommended, they wanted

people to use a rowing machine

 

1160

01:05:48,440 --> 01:05:49,790

for different reasons, right?

 

1161

01:05:49,970 --> 01:05:52,090

Besides the gravity issue,

but gravity was one of them.

 

1162

01:05:52,130 --> 01:05:55,090

They're sort of sitting and squatted

down and, you know, you're small

 

1163

01:05:55,090 --> 01:05:56,120

from a gravity point of view.

 

1164

01:05:56,580 --> 01:05:59,160

If you couldn't use a rowing

machine, and this is an issue, right?

 

1165

01:05:59,190 --> 01:06:00,880

Especially with the hypermobile.

 

1166

01:06:01,050 --> 01:06:04,160

Folks, if your hips are involved, your

shoulders are involved, I certainly

 

1167

01:06:04,160 --> 01:06:08,080

recommend testing it out in a gym

before you buy equipment, because a

 

1168

01:06:08,080 --> 01:06:11,060

few people can't tolerate it, but I

would say most of my patients can.

 

1169

01:06:11,320 --> 01:06:14,400

Just because you have hypermobile

joints that sometimes sublux,

 

1170

01:06:14,400 --> 01:06:15,260

that doesn't mean it will.

 

1171

01:06:15,635 --> 01:06:18,225

But if it does every time,

that's not the exercise for you.

 

1172

01:06:19,005 --> 01:06:21,780

The backup plans are things like recumbent

 

1173

01:06:21,780 --> 01:06:22,654

cycles.

 

1174

01:06:22,655 --> 01:06:24,885

Make sure that the motion

doesn't cause too much problems.

 

1175

01:06:25,215 --> 01:06:25,835

Or swimming.

 

1176

01:06:26,475 --> 01:06:28,665

Now, they live in Texas, right?

 

1177

01:06:28,665 --> 01:06:31,255

Every other person has a pool in

their backyard and they can use it.

 

1178

01:06:31,295 --> 01:06:32,255

I live in Calgary.

 

1179

01:06:32,685 --> 01:06:34,465

We call outdoor pools ice rinks.

 

1180

01:06:35,065 --> 01:06:37,795

So that doesn't really exist and

there aren't enough indoor pools.

 

1181

01:06:37,795 --> 01:06:40,945

So for most of my patients, we're

really talking about recumbent

 

1182

01:06:40,945 --> 01:06:42,194

cycles or recumbent cycles.

 

1183

01:06:42,395 --> 01:06:43,215

Rowing machines.

 

1184

01:06:43,675 --> 01:06:47,585

What I tell people from a practical point

of view is time and duration matter.

 

1185

01:06:47,585 --> 01:06:51,685

So everyone has modified what

they did in the Dallas protocol.

 

1186

01:06:51,685 --> 01:06:54,335

They call it a modified Levine

protocol after Ben Levine, who

 

1187

01:06:54,755 --> 01:06:58,235

was the senior scientist and

cardiologist that ran that study.

 

1188

01:06:59,085 --> 01:07:00,445

And everyone modifies it differently.

 

1189

01:07:00,445 --> 01:07:04,765

So, There's a CHOP protocol that's

out there on different websites

 

1190

01:07:04,775 --> 01:07:07,195

from the Children's Hospital of

Pennsylvania, and they recommend

 

1191

01:07:07,195 --> 01:07:09,805

starting with like 2 minutes and

going to 3 minutes and 4 minutes.

 

1192

01:07:10,235 --> 01:07:13,165

The approach we've taken is to say,

get to 30 minutes, which is what

 

1193

01:07:13,465 --> 01:07:17,685

they recommend, but keep the load

low and build up the load over time.

 

1194

01:07:18,435 --> 01:07:20,165

So, frequency and duration matter.

 

1195

01:07:20,205 --> 01:07:23,265

They make a big point of They need to

exercise every other day to get into

 

1196

01:07:23,265 --> 01:07:27,145

this aerobic training mode, to really

get that heart, you know, getting bigger,

 

1197

01:07:27,145 --> 01:07:30,945

so I actually ask people to try for

5 or 6 days a week, not because they

 

1198

01:07:30,945 --> 01:07:34,285

absolutely need 5 or 6 days a week,

but, you know, people's lives are busy,

 

1199

01:07:34,425 --> 01:07:37,715

right, you know, people want to get

better, people want to do this, but

 

1200

01:07:37,715 --> 01:07:39,395

it's, you know, life will get in the way.

 

1201

01:07:39,845 --> 01:07:40,075

Right?

 

1202

01:07:40,075 --> 01:07:41,345

A lot of people have kids.

 

1203

01:07:41,345 --> 01:07:44,365

But even if you don't have kids,

something happens that conspires against

 

1204

01:07:44,365 --> 01:07:45,965

your ability to try and exercise.

 

1205

01:07:45,965 --> 01:07:49,675

And so if you try for, you know, 4 and you

miss a couple of days, you're down to 2.

 

1206

01:07:49,685 --> 01:07:52,295

If you try for 5 or 6, you're

still sort of around that 4 mark

 

1207

01:07:52,855 --> 01:07:53,125

to get

 

1208

01:07:53,125 --> 01:07:54,335

that into training mode.

 

1209

01:07:55,095 --> 01:07:57,045

Like I said, fairly quickly

you should get to 30 minutes.

 

1210

01:07:57,055 --> 01:08:00,995

Now, I've had people come back to me

and say, you know, I can do 12 minutes

 

1211

01:08:00,995 --> 01:08:02,155

and then I feel like I'm about to die.

 

1212

01:08:03,025 --> 01:08:05,105

You know, if you feel like

you're about to die, you should

 

1213

01:08:05,105 --> 01:08:06,485

stop that day for sure, right?

 

1214

01:08:06,485 --> 01:08:09,304

It's not a matter of going on and

saying, you know, I gotta keep, I

 

1215

01:08:09,305 --> 01:08:11,165

gotta rush, I gotta keep going, right?

 

1216

01:08:11,205 --> 01:08:14,725

If you're done, you're done

for the day, but you messed up.

 

1217

01:08:15,285 --> 01:08:20,040

And what I mean by that is, With the

rowing machines and the recumbent

 

1218

01:08:20,040 --> 01:08:22,940

cycles, there's a resistance

dial to make it harder or easier.

 

1219

01:08:22,940 --> 01:08:26,180

And I tell everyone to turn it all the

way down, make it as easy as possible.

 

1220

01:08:26,630 --> 01:08:28,900

If there was a self rowing mode, you'd

turn it on, but they don't have that.

 

1221

01:08:28,900 --> 01:08:31,670

But it's, you know, you turn it all

the way down, so it's easy, easy, easy.

 

1222

01:08:33,050 --> 01:08:34,640

And then the only other input is speed.

 

1223

01:08:35,060 --> 01:08:37,630

At 12 minutes, if you're burned

out, if you turn the resistance

 

1224

01:08:37,630 --> 01:08:39,740

down and you're burned out at 12

minutes, that means you went out too

 

1225

01:08:39,740 --> 01:08:41,140

quickly for what you're able to do.

 

1226

01:08:41,790 --> 01:08:43,300

So next time, go out more slowly.

 

1227

01:08:43,995 --> 01:08:47,495

Right, and the challenge is that

a lot of patients are competing.

 

1228

01:08:47,795 --> 01:08:49,635

They're competing against their partner.

 

1229

01:08:49,755 --> 01:08:51,105

They're competing against their kids.

 

1230

01:08:51,165 --> 01:08:53,885

They're competing against

They're former selves, right?

 

1231

01:08:53,935 --> 01:08:58,375

I used to be able to do this, I need to be

able to do this, and I tell them to stop.

 

1232

01:08:58,415 --> 01:09:01,615

It's not about, get to 30 minutes,

don't worry about how slow you are,

 

1233

01:09:02,455 --> 01:09:06,925

and then over time, as they keep doing

this, they may want to add resistance

 

1234

01:09:06,925 --> 01:09:09,615

to make it, because that, you know,

sometimes if there's no resistance, it's,

 

1235

01:09:09,775 --> 01:09:12,845

it's almost painfully too easy, right?

 

1236

01:09:12,845 --> 01:09:16,195

Where it's not as comfortable, and

they may want to add duration to it.

 

1237

01:09:16,435 --> 01:09:17,335

But that's all for later.

 

1238

01:09:17,335 --> 01:09:18,745

I won't worry about that in the beginning.

 

1239

01:09:19,225 --> 01:09:22,315

In the beginning, the focus is

really on no resistance, get to

 

1240

01:09:22,315 --> 01:09:23,795

30 minutes, get in that habit.

 

1241

01:09:25,255 --> 01:09:28,135

And then the, the challenge is

that it doesn't, the benefits

 

1242

01:09:28,135 --> 01:09:29,065

don't happen right away.

 

1243

01:09:29,075 --> 01:09:32,835

When I started doing this after the paper

first came out about 15 years ago, you

 

1244

01:09:32,835 --> 01:09:36,625

know, I'd recommend this and we had data

now and patients would come back to me.

 

1245

01:09:36,915 --> 01:09:39,445

You know, for a follow up visit, and

say, yeah, you know, the exercise,

 

1246

01:09:39,445 --> 01:09:41,905

I don't think that, that wasn't

for me, that didn't apply to me,

 

1247

01:09:41,905 --> 01:09:43,055

I didn't start to get any better.

 

1248

01:09:43,685 --> 01:09:45,495

And, I had to actually call up Dr.

 

1249

01:09:45,495 --> 01:09:48,505

Chi Fu, who was leading the study,

and say, what am I doing wrong?

 

1250

01:09:48,555 --> 01:09:50,265

She said, well, we said

everyone got better, we didn't

 

1251

01:09:50,265 --> 01:09:51,295

say it happened right away.

 

1252

01:09:51,955 --> 01:09:54,325

And, you know, it's a three to six

month study and she said it can take a

 

1253

01:09:54,325 --> 01:09:56,465

while and, and, you know, she's right.

 

1254

01:09:56,915 --> 01:09:59,965

If you told me to go exercise

and you'll feel better, I'd

 

1255

01:09:59,965 --> 01:10:00,895

give it a couple of weeks.

 

1256

01:10:01,335 --> 01:10:01,575

Right?

 

1257

01:10:01,575 --> 01:10:03,605

But the truth is, it can take

up to six weeks before our

 

1258

01:10:03,605 --> 01:10:04,945

patients notice any improvement.

 

1259

01:10:05,625 --> 01:10:07,325

And in that time, they

may well feel worse.

 

1260

01:10:07,585 --> 01:10:11,285

I do believe that a lot of our POTS

patients have post exertional malaise

 

1261

01:10:11,285 --> 01:10:13,615

and I believe a lot of them have

trained out of it, but not right away.

 

1262

01:10:13,785 --> 01:10:15,855

And so, you have to warn patients.

 

1263

01:10:16,770 --> 01:10:18,020

That it's going to take six weeks.

 

1264

01:10:18,050 --> 01:10:19,530

If they're going to do

it, this is an investment.

 

1265

01:10:19,530 --> 01:10:21,700

And part of that is also

thinking about when to do it,

 

1266

01:10:22,270 --> 01:10:22,520

right?

 

1267

01:10:22,520 --> 01:10:25,440

So if you're a student, for

example, you don't want to start

 

1268

01:10:25,440 --> 01:10:28,130

at the beginning of December,

because you're about to hit finals.

 

1269

01:10:28,150 --> 01:10:30,940

You want to start, you know, maybe

after finals where, you know, if you're

 

1270

01:10:30,940 --> 01:10:34,060

feeling a bit miserable for extra

miserable for a few weeks, it's not

 

1271

01:10:34,520 --> 01:10:35,910

the worst time for that to happen.

 

1272

01:10:37,170 --> 01:10:39,400

So exercise is sort of the fourth pillar.

 

1273

01:10:39,400 --> 01:10:41,180

And it's the one that takes the most time.

 

1274

01:10:41,180 --> 01:10:43,090

But in terms of

sustainability, it's important.

 

1275

01:10:43,590 --> 01:10:47,405

And the interesting thing, Is that

in the beginning when people start

 

1276

01:10:47,405 --> 01:10:50,245

this, we're asking them to do

things that make them feel horrible.

 

1277

01:10:50,245 --> 01:10:52,825

They feel worse when they

exercise in the first few weeks.

 

1278

01:10:53,955 --> 01:10:57,315

Around that point between four

and six weeks when they start

 

1279

01:10:57,315 --> 01:11:00,405

to notice improvement, I've had

patients tell me they feel worse

 

1280

01:11:00,435 --> 01:11:02,085

when they miss a day of exercise.

 

1281

01:11:02,985 --> 01:11:03,145

Right,

 

1282

01:11:03,145 --> 01:11:07,805

so, like, something switches, but it's,

you know, I say there's light at the

 

1283

01:11:07,805 --> 01:11:10,565

end of the tunnel, but it's a long

tunnel to get there, and that's the

 

1284

01:11:10,565 --> 01:11:14,415

challenge, right, we're asking you to

sort of do stuff without reward right

 

1285

01:11:14,415 --> 01:11:18,145

away, and there are lots of patients

that would swear by that approach,

 

1286

01:11:18,675 --> 01:11:21,015

but it's the toughest, obviously, of

all the things we've talked about.

 

1287

01:11:22,080 --> 01:11:24,830

So that's the non pharmacological

foundation for everyone.

 

1288

01:11:25,560 --> 01:11:28,760

And not, obviously, some people have

specific challenges, we're not able

 

1289

01:11:28,760 --> 01:11:31,960

to tolerate all of those things, but

those are the things we would suggest.

 

1290

01:11:31,960 --> 01:11:35,620

Some people, for example, have so

much pain sensitivity in the abdomen,

 

1291

01:11:35,620 --> 01:11:37,060

they can't wear compression garments.

 

1292

01:11:37,170 --> 01:11:38,660

You know, they can't have

anything touching their

 

1293

01:11:38,660 --> 01:11:39,770

belly, it's hard to squish it.

 

1294

01:11:40,150 --> 01:11:41,670

But you work with what you can work with.

 

1295

01:11:42,120 --> 01:11:44,750

Most people, as I said, can get

the salt and water in, some can't.

 

1296

01:11:45,130 --> 01:11:48,000

The salt, you know, generally

best tolerated with food.

 

1297

01:11:48,605 --> 01:11:50,885

Some people hate the taste of salt

in food, they won't eat it, in

 

1298

01:11:50,885 --> 01:11:53,335

which case they have to come up with

different approaches, and there are

 

1299

01:11:53,335 --> 01:11:56,085

certainly buffered salt tablets that

can help, but I don't tend to use them

 

1300

01:11:56,085 --> 01:12:01,125

as much because of cost, people can

sometimes add salt water to their water

 

1301

01:12:01,125 --> 01:12:04,335

bottles and drink it or add it To hot

water and lemon juice and drink it.

 

1302

01:12:04,895 --> 01:12:06,865

Some young patients even

do salt water shots.

 

1303

01:12:07,025 --> 01:12:09,655

Right, that's sort of like a margarita

without the really good stuff.

 

1304

01:12:10,265 --> 01:12:13,225

The point is, there's not a right

way to do it or a wrong way to do it.

 

1305

01:12:13,645 --> 01:12:13,855

But

 

1306

01:12:13,855 --> 01:12:16,715

what we're asking patients to do is not

to do this once, but to do this daily.

 

1307

01:12:16,715 --> 01:12:18,955

So they need to find the

way that works for them.

 

1308

01:12:19,470 --> 01:12:22,580

Right, so we can make some suggestions

of things that work for others, but

 

1309

01:12:22,590 --> 01:12:26,030

people really need to individualize

this so it fits in with their life.

 

1310

01:12:27,580 --> 01:12:31,230

And then the final layer of treatment

is then, you know, do they need drugs?

 

1311

01:12:31,260 --> 01:12:34,440

And depending on how severe the symptoms

were and how high the heart rates

 

1312

01:12:34,440 --> 01:12:38,270

were, some people want to try the non

pharmacological approach for a while and

 

1313

01:12:38,270 --> 01:12:42,780

see how they do before deciding if they

want to take drugs, and others are, you

 

1314

01:12:42,780 --> 01:12:48,595

know, I feel miserable, I think we should

Do both at the same time, um, and then,

 

1315

01:12:48,605 --> 01:12:51,845

you know, if we're using drugs, then

it's a question of what, when, and why.

 

1316

01:12:52,335 --> 01:12:55,295

If their heart rates are really, really

high, so let's say on standing the heart

 

1317

01:12:55,295 --> 01:12:59,465

rates are getting into the 130, 140 beat

per minute range, I found that lowering

 

1318

01:12:59,465 --> 01:13:03,880

the heart rate a little bit, taking the

edge off the heart rate increase, Usually

 

1319

01:13:03,890 --> 01:13:05,850

has significant symptomatic benefits.

 

1320

01:13:06,020 --> 01:13:10,850

So, historically, I've been a big

proponent of low doses of propranolol.

 

1321

01:13:10,890 --> 01:13:12,600

Each pill works for

about 4 hours at a time.

 

1322

01:13:12,600 --> 01:13:14,850

It's a non selective beta

blocker, short acting.

 

1323

01:13:15,560 --> 01:13:18,450

And our typical starting dose

would be 10mg 4 times a day.

 

1324

01:13:19,670 --> 01:13:22,860

If someone needs more, we can

go higher, but I rarely would go

 

1325

01:13:22,860 --> 01:13:24,590

higher than 20mg 4 times a day.

 

1326

01:13:25,330 --> 01:13:27,070

Right, because the goal is

not to fix the heart rate.

 

1327

01:13:27,070 --> 01:13:30,210

It's not to normalize it, it's

to prevent it from going as high.

 

1328

01:13:30,210 --> 01:13:33,600

So if instead of peaking at one

30, if it peaks at one 15, still

 

1329

01:13:33,600 --> 01:13:35,580

high, still abnormal, right?

 

1330

01:13:35,580 --> 01:13:39,820

Patients could feel a lot better if

their heart rates aren't as high.

 

1331

01:13:40,090 --> 01:13:43,510

The other option, the newer,

shinier option is of Aberdeen.

 

1332

01:13:44,150 --> 01:13:45,650

You know, some people prefer that.

 

1333

01:13:45,650 --> 01:13:48,860

We're actually doing a study comparing

the two right now to see if as a

 

1334

01:13:48,860 --> 01:13:50,390

group, if one is better than the other.

 

1335

01:13:51,230 --> 01:13:54,110

Ivabradine has some insurance

and cost challenges.

 

1336

01:13:55,285 --> 01:13:58,645

Both in Canada and the US, it's a bit

more expensive, but it's certainly

 

1337

01:13:58,645 --> 01:14:01,935

available, and it's an off label use, but

a reasonable thing to use, and there's

 

1338

01:14:01,945 --> 01:14:06,745

some data out of UC San Diego that it

actually is helpful in POTS compared

 

1339

01:14:06,745 --> 01:14:09,395

to placebo, just like there's some data

that propranolol is helpful compared to

 

1340

01:14:09,395 --> 01:14:11,275

placebo, but just to know which is better.

 

1341

01:14:12,105 --> 01:14:14,485

If the blood pressure is really

low, you alluded to some people

 

1342

01:14:14,485 --> 01:14:15,845

have low blood pressures.

 

1343

01:14:16,315 --> 01:14:19,315

You know, with POTS and vasovagal

syncope and stuff, if the blood, say

 

1344

01:14:19,315 --> 01:14:22,424

the blood, sitting, resting blood

pressure is in the 90s, you know,

 

1345

01:14:22,605 --> 01:14:25,385

propranolol and ibuprofen, if you take

the edge off the heart rate, it can

 

1346

01:14:26,175 --> 01:14:27,415

make the blood pressure a bit worse.

 

1347

01:14:27,435 --> 01:14:31,285

And so, in those patients, we may

use a drug that squishes the vessels

 

1348

01:14:31,285 --> 01:14:32,505

a little bit, like mitadrine.

 

1349

01:14:33,285 --> 01:14:35,375

Uh, so this is a short

acting presser drug.

 

1350

01:14:35,375 --> 01:14:37,335

It squishes arteries and squishes veins.

 

1351

01:14:37,955 --> 01:14:41,525

And it too works for about four hours

at a time, but we'd only dose that three

 

1352

01:14:41,525 --> 01:14:44,555

times a day because we don't really

want that patients to take it at bedtime

 

1353

01:14:44,575 --> 01:14:46,835

because they're supposed to be lying

down at bedtime, right, we want them

 

1354

01:14:46,835 --> 01:14:48,815

to take it when they're up and about.

 

1355

01:14:49,625 --> 01:14:53,565

So we may individualize the drugs a

little based on their characteristics.

 

1356

01:14:54,510 --> 01:14:57,530

But the non pharmacological

foundation is pretty universal.

 

1357

01:14:57,860 --> 01:15:00,280

And what about drugs like parotastigmine?

 

1358

01:15:00,330 --> 01:15:02,960

I know that's something that's

more commonly prescribed

 

1359

01:15:02,970 --> 01:15:04,140

these days, it seems like.

 

1360

01:15:04,940 --> 01:15:09,190

Yeah, so we, when we were at Vanderbilt,

we actually looked at this in pots

 

1361

01:15:09,190 --> 01:15:12,870

and we had an acute 4 hour study model

where patients on a research unit, we'd

 

1362

01:15:12,870 --> 01:15:15,835

give them a drug in the morning and

The studies go from 9 to 11 and we look

 

1363

01:15:15,835 --> 01:15:19,855

at heart rate response and, you know,

it's, it's, Pyridostigmine is a drug

 

1364

01:15:19,855 --> 01:15:23,265

that's on the market for a neurologic

disorder called Myasthenia Gravis.

 

1365

01:15:23,265 --> 01:15:28,745

And what it does is it actually,

um, slows down the breakdown of

 

1366

01:15:28,805 --> 01:15:30,475

the neurotransmitter acetylcholine.

 

1367

01:15:30,485 --> 01:15:33,075

So, effectively, you get more

acetylcholine in the nerve

 

1368

01:15:33,135 --> 01:15:34,375

terminals throughout the body.

 

1369

01:15:34,895 --> 01:15:39,505

So, we showed that it, you know, in a,

you know, lab controlled setting can lower

 

1370

01:15:39,505 --> 01:15:42,655

the heart rate a little bit, right, so it

does, it's going in the right direction.

 

1371

01:15:43,145 --> 01:15:46,855

The truth is it's not a very potent drug,

so, you know, a drug like a Vabradine

 

1372

01:15:46,855 --> 01:15:50,165

or a propranolol will have much more

potent heart rate lowering effects.

 

1373

01:15:50,785 --> 01:15:54,575

A colleague in Toledo, a doctor named

Blair Grubb, you know, actually started

 

1374

01:15:54,575 --> 01:16:00,085

using it fairly aggressively in his clinic

and then published a Data dump, where I

 

1375

01:16:00,215 --> 01:16:04,515

think he had 300 patients, you know, and

it wasn't a detailed study, but, you know,

 

1376

01:16:04,525 --> 01:16:07,915

had a general sense of liked it or not,

and I think about 60 percent liked it.

 

1377

01:16:08,645 --> 01:16:12,045

Right, we don't have a lot of detail

about exactly why and can't ask further

 

1378

01:16:12,045 --> 01:16:14,335

questions, but, but, positive response.

 

1379

01:16:15,265 --> 01:16:16,555

About 20 percent had to stop.

 

1380

01:16:17,220 --> 01:16:18,470

The drug couldn't tolerate it.

 

1381

01:16:19,100 --> 01:16:23,600

And almost all of that were people that

had diarrhea or abdominal cramping,

 

1382

01:16:23,910 --> 01:16:24,290

right,

 

1383

01:16:24,290 --> 01:16:26,990

because one of the things acetylcholine

does is it increases gut motility.

 

1384

01:16:27,920 --> 01:16:31,310

So, right now, if someone actually comes

into clinic and tells me they have a

 

1385

01:16:31,310 --> 01:16:36,850

lot of, they're prone to diarrhea, or

they're prone to, you know, back and

 

1386

01:16:36,850 --> 01:16:38,679

forth with diarrhea or constipation,

but diarrhea is a common thing.

 

1387

01:16:38,990 --> 01:16:42,930

Big part of it, I stay away from it,

but if someone tells me they're prone to

 

1388

01:16:42,930 --> 01:16:45,800

constipation, they have bowel movements

every, you know, three days if they're

 

1389

01:16:45,800 --> 01:16:49,100

lucky, this is sometimes the best

drug they've had for the constipation.

 

1390

01:16:49,100 --> 01:16:52,140

It's not a laxative, it's actually

working at the nerve terminals

 

1391

01:16:52,140 --> 01:16:55,430

to, you know, increase the, you

know, the, you know, signals to the

 

1392

01:16:55,430 --> 01:16:57,340

gut, and it can be very effective.

 

1393

01:16:57,790 --> 01:17:00,650

Generally speaking, it's a really

well tolerated drug, so it's, you

 

1394

01:17:00,650 --> 01:17:05,230

know, you know, if you try it and you

get the cramp in your diarrhea, stop

 

1395

01:17:05,230 --> 01:17:07,780

it, it'll go away, it's not going

to do any long term harm to you.

 

1396

01:17:08,675 --> 01:17:09,285

Okay.

 

1397

01:17:09,615 --> 01:17:12,125

Well, that is a lot of

really great information.

 

1398

01:17:12,125 --> 01:17:14,495

I want to ask one last question

before we get on to our

 

1399

01:17:14,495 --> 01:17:16,185

hypermobility hack and wrap up.

 

1400

01:17:16,915 --> 01:17:20,215

In your experience, in your clinical

experience, or maybe there's a

 

1401

01:17:20,215 --> 01:17:26,675

study that also can inform this

question, what percentage of people

 

1402

01:17:27,125 --> 01:17:31,705

Are able to improve their quality

of life sufficiently through the non

 

1403

01:17:31,705 --> 01:17:36,285

pharmacologic methods so they don't need

medication versus the percentage that

 

1404

01:17:36,305 --> 01:17:39,895

actually do end up needing medication

on top of the non pharmacologic.

 

1405

01:17:41,245 --> 01:17:46,015

It's a difficult question because

obviously my clinic is perhaps

 

1406

01:17:46,015 --> 01:17:48,955

not a representative sample of

the larger population, right?

 

1407

01:17:48,955 --> 01:17:52,335

I mean, the people by the time there's

a long wait to get in here and people

 

1408

01:17:52,335 --> 01:17:54,935

that put up with all that probably feel

a bit more miserable than the average.

 

1409

01:17:55,480 --> 01:17:57,880

patient that may not

want to put up with that.

 

1410

01:18:01,445 --> 01:18:05,525

The vast majority that are on drugs

as well, um, you know, it's probably

 

1411

01:18:05,525 --> 01:18:11,305

somewhere 70 80 percent maybe north

of that, um, having said that, there's

 

1412

01:18:11,305 --> 01:18:16,445

also people that you start on drugs and

then as they really get into the non

 

1413

01:18:16,445 --> 01:18:19,475

pharmacological thing and their exercise

routine, because the exercise doesn't

 

1414

01:18:19,475 --> 01:18:24,185

work right away, it takes several months,

um, and longer, I certainly have had

 

1415

01:18:24,185 --> 01:18:28,515

some patients that are able to wean off

drugs and their exercise Still doing

 

1416

01:18:28,515 --> 01:18:30,095

the non pharmacological treatment alone,

 

1417

01:18:30,555 --> 01:18:30,785

um,

 

1418

01:18:30,785 --> 01:18:35,225

and that does happen, but I'd say the

more common, I'm always intrigued when

 

1419

01:18:35,225 --> 01:18:37,965

people come to me and one of the first

things they say is, I don't want to be on

 

1420

01:18:37,965 --> 01:18:41,755

drugs, and I actually think that that's

actually the wrong way to look at it, I

 

1421

01:18:41,755 --> 01:18:45,655

think what they should be saying is, I

want to function better, right, and if I

 

1422

01:18:45,655 --> 01:18:50,970

can do that without drugs, great, and if

I need drugs, And in the end, I am better

 

1423

01:18:51,060 --> 01:18:57,540

for it than great, um, and I'd say most

of my patients, um, that I see do the non

 

1424

01:18:57,540 --> 01:19:01,130

pharmacological things, but still need

some drugs to help them function better.

 

1425

01:19:02,210 --> 01:19:06,280

Alright, um, so last question,

uh, do you have a hypermobility

 

1426

01:19:06,290 --> 01:19:07,420

hack to share with us?

 

1427

01:19:07,420 --> 01:19:10,504

So some kind of, uh, quick win for people.

 

1428

01:19:11,285 --> 01:19:14,985

So, one of the things that, uh, I

was concerned about actually when,

 

1429

01:19:15,005 --> 01:19:19,015

when starting to see patients with

hypermobile Ehlers Danlos Syndrome or

 

1430

01:19:19,015 --> 01:19:24,625

joint hypermobility syndrome in that

spectrum was that, uh, the compression

 

1431

01:19:24,625 --> 01:19:27,785

garments may be tough to, the tights

may be tough to get on and off.

 

1432

01:19:28,420 --> 01:19:29,700

Um, and they're not easy for anyone.

 

1433

01:19:30,170 --> 01:19:33,700

But what I've had some patients tell

me is that they actually found that

 

1434

01:19:33,700 --> 01:19:35,230

it helped stabilize their joints.

 

1435

01:19:35,260 --> 01:19:39,600

Once they got it on, their joints, their

hip joints and sometimes their knee joints

 

1436

01:19:39,600 --> 01:19:42,710

actually felt a little more stable with

the support from the compression garments.

 

1437

01:19:43,120 --> 01:19:46,080

So that's not usually why I'm prescribing

it, but that might be an added benefit.

 

1438

01:19:47,050 --> 01:19:47,630

Okay.

 

1439

01:19:47,720 --> 01:19:48,350

Very good.

 

1440

01:19:48,690 --> 01:19:53,370

And, uh, before you go, can you let us

know where we can learn more about you?

 

1441

01:19:54,675 --> 01:19:59,395

Uh, well, I, I fear to ask, I avoid

searching myself on the internet because

 

1442

01:19:59,395 --> 01:20:00,425

I never know what people are going to say.

 

1443

01:20:01,055 --> 01:20:04,255

And you gave us a link that we

can share in the show notes too.

 

1444

01:20:04,705 --> 01:20:08,295

So we have, we have, our lab

has set up a website, um, you

 

1445

01:20:08,295 --> 01:20:11,025

know, through the University of

Calgary, uh, our autonomic lab.

 

1446

01:20:11,520 --> 01:20:17,900

It lists, you know, has, you know, bios

and, and, uh, lists some of our, uh, we

 

1447

01:20:17,900 --> 01:20:21,590

have some patient information brochures

that we've created that we link to on the

 

1448

01:20:21,590 --> 01:20:28,150

site, um, and we have hopes and visions

of trying to, um, feed back to both

 

1449

01:20:28,220 --> 01:20:32,550

our patient participants, our patient

partners, as well as patients at large,

 

1450

01:20:32,550 --> 01:20:36,590

some of the results from our studies as

abstracts get published and, and, and

 

1451

01:20:36,590 --> 01:20:40,570

papers get published, we want to be able

to sort of put links to those there so

 

1452

01:20:40,570 --> 01:20:44,720

that, you know, it can serve as a, um,

Broader patient education forum as well.

 

1453

01:20:46,080 --> 01:20:46,790

That's great.

 

1454

01:20:46,860 --> 01:20:50,480

So we will have the link in the show

notes so that people can go there and

 

1455

01:20:50,510 --> 01:20:52,970

are there abstracts and papers there now?

 

1456

01:20:53,110 --> 01:20:55,090

Or is this something

that's being worked on?

 

1457

01:20:55,090 --> 01:20:55,470

If there are,

 

1458

01:20:55,470 --> 01:20:55,960

not enough.

 

1459

01:20:55,970 --> 01:20:59,040

This is in the work in

progress section at the moment.

 

1460

01:20:59,850 --> 01:21:02,730

I will harass our students

to try and rush that.

 

1461

01:21:03,010 --> 01:21:03,500

Okay.

 

1462

01:21:03,540 --> 01:21:04,240

No problem.

 

1463

01:21:04,280 --> 01:21:04,820

No problem.

 

1464

01:21:05,400 --> 01:21:06,060

Um, okay.

 

1465

01:21:06,060 --> 01:21:06,570

Well, Dr.

 

1466

01:21:06,570 --> 01:21:10,750

Raj, thank you again so very much for

coming and chatting with me today.

 

1467

01:21:10,790 --> 01:21:14,940

I know that your schedule is very,

very busy, and I just really appreciate

 

1468

01:21:14,940 --> 01:21:19,089

you taking the time to share your

incredible knowledge and wisdom with us.

 

1469

01:21:19,840 --> 01:21:20,740

Well, thank you for having me.

 

1470

01:21:24,240 --> 01:21:26,420

Well, I am so glad we got to chat with Dr.

 

1471

01:21:26,420 --> 01:21:32,100

Raj and learn so much about POTS and

specifically how he instructs his patients

 

1472

01:21:32,130 --> 01:21:34,510

with those non pharmacologic methods.

 

1473

01:21:34,790 --> 01:21:39,280

I feel like those very, very specific

portions of those instructions are

 

1474

01:21:39,280 --> 01:21:42,570

going to help a lot of people because

while a lot of people have heard, you

 

1475

01:21:42,570 --> 01:21:46,240

know, increase your salt, increase

your water, increase your exercise.

 

1476

01:21:46,605 --> 01:21:48,625

The devil is definitely in the details.

 

1477

01:21:48,655 --> 01:21:51,315

So I hope a lot of you found

that really beneficial.

 

1478

01:21:51,735 --> 01:21:54,395

And I want to thank you so very

much for listening to this week's

 

1479

01:21:54,415 --> 01:21:57,955

episode of the Bendy Bodies with

the Hypermobility MD podcast.

 

1480

01:21:58,375 --> 01:22:02,515

Help us spread the word about joint

hypermobility and related disorders by

 

1481

01:22:02,585 --> 01:22:04,814

leaving a review and sharing the podcast.

 

1482

01:22:05,105 --> 01:22:08,325

This really helps raise awareness

about these complex conditions.

 

1483

01:22:08,945 --> 01:22:12,135

If you would like to dig deeper,

you can meet with me one on one.

 

1484

01:22:12,445 --> 01:22:15,505

Please check out the available

options on the services page on

 

1485

01:22:15,505 --> 01:22:17,595

my website at hypermobilitymd.

 

1486

01:22:17,915 --> 01:22:18,245

com.

 

1487

01:22:18,705 --> 01:22:20,235

You can also find me, Dr.

 

1488

01:22:20,235 --> 01:22:24,315

Linda Bluestein, on Instagram,

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1489

01:22:24,315 --> 01:22:25,935

LinkedIn at hypermobilitymd.

 

1490

01:22:27,045 --> 01:22:29,605

You can find Human Content, my

producing team, at humancontentpods

 

1491

01:22:29,605 --> 01:22:31,945

on TikTok and Instagram.

 

1492

01:22:32,735 --> 01:22:35,914

You can also find full video

episodes up every week on YouTube.

 

1493

01:22:35,915 --> 01:22:37,825

On YouTube at Vendee Bodies Podcast.

 

1494

01:22:38,495 --> 01:22:41,615

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1495

01:22:41,765 --> 01:22:45,225

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1496

01:22:45,225 --> 01:22:48,715

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1497

01:22:48,715 --> 01:22:48,985

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1498

01:22:49,725 --> 01:22:52,155

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1499

01:22:52,515 --> 01:22:54,985

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1500

01:22:54,985 --> 01:22:56,825

time on the Vendee Bodies Podcast.

 

1501

01:23:04,605 --> 01:23:05,825

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1502

01:23:06,095 --> 01:23:08,965

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1503

01:23:09,105 --> 01:23:10,295

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1504

01:23:10,590 --> 01:23:12,810

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1505

01:23:12,810 --> 01:23:13,870

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1506

01:23:14,190 --> 01:23:17,180

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1507

01:23:17,180 --> 01:23:20,080

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1508

01:23:20,310 --> 01:23:22,610

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