July 8, 2025 • 46 mins
Dr. Ayla Wolf and Sophia Bouwens dive deep into the complexities of Postural Orthostatic Tachycardia Syndrome (POTS), explaining how this autonomic dysfunction manifests and why proper diagnosis is crucial for effective treatment. Dr. Wolf breaks down the different subtypes, testing methods, and treatment approaches while emphasizing the importance of looking beyond symptoms to find root causes.
• Different subtypes include hyperadrenergic POTS, hypovolemic POTS, and POTS with mast cell activation
• Approximately 70% of POTS cases occur in females between ages 15-45
• Many POTS patients have interoception issues, feeling disconnected from bodily sensations or experiencing heightened awareness
• Potential underlying causes include concussions, mold exposure, viral infections, autoimmune conditions, and cervical instability
• Exercise therapy is beneficial but must be customized to the patient's specific condition and symptoms
For more information about concussion recovery and autonomic dysfunction, check out Dr. Wolf's new book, "The Concussion Breakthrough: Discover the Missing Pieces to Recovery," now available on Amazon.
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Dr. Wolf's book Concussion Breakthrough: Discover the Missing Pieces of Concussion Recovery is now available on Amazon!
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
in the hyperadrenergic POTS, what you
typically see is that the heartrate goes up and blood pressure
goes up too when you're doingthe tilt testing.
Welcome to Life After Impactthe concussion recovery podcast.
I'm Dr Ayla Wolf, and I will behosting today's episode where
we help you navigate the oftenconfusing, frustrating and
(00:21):
overwhelming journey ofconcussion and brain injury
recovery.
This podcast is your go-toresource for actionable
information, whether you'redealing with a recent concussion
, struggling withpost-concussion syndrome or just
feeling stuck in your healingprocess.
In each episode, we dive deepinto the symptoms, testing,
treatments and neurologicalinsights that can help you move
(00:44):
forward with clarity andconfidence.
We bring you leading experts inthe world of brain health,
functional neurology andrehabilitation to share their
wisdom and strategies.
So if you're feeling lost,hopeless or like no one
understands what you're goingthrough, know that you are not
alone.
This podcast can be your guideand partner in recovery, helping
(01:04):
you build a better life afterimpact.
All right, welcome to LifeAfter Impact the concussion
recovery podcast.
I'm Dr Ayla Wolf and I am herewith the birthday girl, sophia
Bowens.
Hi, sophia.
Speaker 2 (01:20):
Hello Dr Wolf.
It's so exciting to be here.
Speaker 1 (01:24):
Are you having a great birthday weekend?
Speaker 2 (01:26):
I've had a great birthday weekend.
I'm officially in my late 30s.
Something about that feels likevery adult to me.
Speaker 1 (01:35):
Well, you're still young at heart.
Speaker 2 (01:37):
I am, I don't feel old.
My mom always told me lifebegins when you're 40.
And my mom told me that too,and I didn't believe her.
But let me tell you what thatis.
So waiting for life to begin,but it's been a really good
birthday, reconnecting with alot of old friends and just,
yeah, living life.
I'm excited to be here with youdoing this kind of stuff, and I
(01:58):
think our topic today is justreally a good one.
So do you want to describe whatwe're going to be talking about
today?
Speaker 1 (02:06):
Yeah, I thought it would be a good idea to dive
into some of the nuances of POTSpostural orthostatic
tachycardia syndrome because Iwould say that more frequently
I'm having women come into myclinic who tell me that they are
concerned that they have POTSand in some cases, when we go
(02:29):
through a lot of autonomictesting and we look at all the
data, it sure looks like they do.
And in other cases I've hadpeople come in and say I think I
have POTS and I've run themthrough all my tests and I say
there's absolutely zero sign ofyou having POTS.
But that's not to say that weneed to discount their symptoms.
You know, in one particularcase my concern was that she
(02:52):
maybe actually had cervicalinstability that was driving a
lot of her autonomic symptomsand so after going through all
of the testing, I felt prettyconfident in saying nothing that
I see here looks like POTS.
However, I want to refer youout for a DMX, a digital motion
x-ray, to get some better dataon what's going on with your
(03:13):
neck, because I'm concerned thatyou might have some cervical
instability going on.
Speaker 2 (03:18):
Yes, and the upper cervical and the autonomic
system are so intimately related, so that's huge.
Pots can be such a tricky thingto diagnose or to even start to
tease out and I love that youhave ways to assess whether or
not it's likely to get to havelike the POTS or some other type
(03:38):
of autonomic dysfunction.
Speaker 1 (03:40):
Yeah, so I have a big chapter in my book on
dysautonomia and autonomicdysfunction and I start out that
chapter with a very long listof possible symptoms, and so I
think for some people that mightbe eye-opening because it is
able to connect a lot of thedots for why they might be
having a lot of what we mightcall non-specific symptoms that
(04:03):
don't necessarily point to oneeasy, simple diagnosis.
Speaker 2 (04:09):
Right, so I'm sorry to interrupt you.
No, go ahead.
I was just.
This is such an interestingcomponent of this because I
haven't had a patient recently.
I think I may have mentionedthis patient before, but their
first original referral was forperipheral neuropathy, post
viral infection.
(04:29):
So they got, or no, postGuillain-Barre.
Um, they got Guillain-Barre andthen they had this neuropathy
that wouldn't go away after thisacute episode of it, and so I
tried, started treating them forthis neuropathy and just we
kept like teasing in.
Different symptoms would kindof come out, Some things would
(04:50):
get better, Some things wouldget worse or things would
exacerbate.
It just wasn't going the waythat I thought it would go.
So we were teasing in and Ireally started honing in on,
like actually there's autonomicdysfunction here that's
disrupting circulation to theextremities, causing neuropathy,
and eventually this heart ratecomponent started coming up
(05:13):
where they first were sayinganxiety and then their anxiety
would get better.
And it wasn't until like far toolong that I realized actually I
think you have POTS.
Like far too long and Irealized actually I think you
have POTS, I think that there's.
There's something like it wasthis aha moment.
So I reached out to thereferral provider and said like
(05:36):
could you put a referral in fora POTS assessment?
And I talked to some of themembers on our vestibular team
and they were like oh well, wedo have a tilt table here, but
you need to go to a cardiologistto get assessed for POTS, like
a specific neurologist, becausethey have to use like a 12-leaf
EKG to assess for this.
And I was kind of stumped bythat because I just thought, no,
yes, okay, maybe there's likethis one valid test, but there's
(05:57):
other ways we could assess thison the ground and make an
impact before they get in to seea cardiologist or a neurologist
for this test.
That like we could do here.
Speaker 1 (06:09):
Yeah, I think what you're, what you're getting into
, is kind of this murky area ofwho in terms of scope of
practice.
Speaker 2 (06:19):
And so.
Speaker 1 (06:20):
I think that perhaps the vestibular therapist was
saying well, we might be able towork with somebody that has a
diagnosis of POTS, but becauseof our scope of practice, we
need to actually get somebody toa cardiologist so the
cardiologist can give them theactual diagnosis.
And then they are then sent tous with the diagnosis and then
(06:41):
we can work with them.
Speaker 2 (06:43):
Oh, that's the inefficiencies of medicine.
Isn't that true?
Speaker 1 (06:47):
Well, it is very inefficient if those
cardiologists have a two to sixmonth waiting list for sure.
Meaning all this patientsuffering.
Speaker 2 (06:55):
So I wonder you talk about some different
considerations for diagnosingwhen you have these assessments.
Yeah, Can you share?
Speaker 1 (07:04):
with the.
So that is, yeah, I mean, forme in my practice I'm all about
observing, right?
I'm all about observation,collecting data, and then if I
collect enough data and I say,you know, hey, I think you
really do need to maybe go andhave a full autonomic reflex
testing panel done.
You know, I'll refer out forthat, but with the knowledge
(07:25):
that there's typically a sixmonth waiting list, at least
where we live, because there'sonly two major clinics that do
that.
But absolutely I wouldn't waitto collect the data on what
someone's autonomic nervoussystem is doing, because that's
super easy data to collect.
I mean, you know, having aheart rate monitor, a blood
pressure cuff, a tilt table,these things are pretty basic
(07:49):
and so and they're usually foundin a lot, of, a lot of clinics.
Speaker 2 (07:53):
Yeah, and maybe we wouldn't be the ones to diagnose
pots like the classical pots,but we could work with someone
with these pots like symptomsand make improvements if we're
understanding what's reallygoing on.
Speaker 1 (08:06):
Yeah, and so I think that it's important to recognize
there's a difference betweenpostural orthostatic tachycardia
and postural orthostatictachycardia syndrome, right?
So as soon as you add syndrometo the end of that, you've got a
legit diagnosis.
But certainly there's nothingwrong with saying, hey, we are
(08:27):
observing postural orthostatictachycardia in this moment,
let's keep monitoring it andthen let's make the appropriate
referrals, right?
Speaker 2 (08:35):
All right, yes, so what kind of assessments might
you look at?
Or do you talk about this inyour book?
How might you start to assessfor this?
You shared a little bit aboutthis exploration for your.
Actually, you don't have likePOTS, but you have maybe
cervical instability.
How would?
What are some of the things youdid to tease that out?
Speaker 1 (08:55):
For starters, there is an age difference.
So when we look at, say, likeyounger teenagers, age 12 to 19,
the diagnostic criteria forPOTS is actually seeing a heart
rate increase of greater than 40beats a minute on a tilt table
test, whereas for adults it's 30.
And so that's important too isthat if you're working with a
(09:18):
younger individual, theyactually might have you know,
they have different criteria fordiagnosing POTS.
So that's one thing I want tomention.
The other thing is going backto this idea of, as a syndrome,
the symptoms.
If you're looking at reallystrict criteria for POTS,
there's even you know, I readall these research papers where
(09:40):
they're saying that the criteriafor POTS has kind of gotten
like broader and broader andbroader and so then all of a
sudden more and more people canbe included in it.
And there's POTS is rather anewer diagnosis and I think the
criteria is still in a senseevolving as we find that
different things are causing itand there's different
manifestations of it.
(10:01):
So the very first establisheddefinition was in 1982.
So that's not that long ago.
And so when we think about itas a syndrome, some of the
strictest criteria states thatit actually needs to be
persistent or present for sixmonths or more, and so that's
(10:21):
one thing.
The other thing is that this,you know, going back to that
same idea, is that this increasein heart rate for adults of
greater than 30 beats per minutewhen you go from you know
laying down to standing or on atilt table, that that's
reproducible.
It's not just happening once,no-transcript.
(11:00):
So that's one thing to kind ofkeep in mind.
The other is that this elevatedheart rate does occur within
three to 10 minutes.
So that's the other piece whereI have seen people stand up and
their heart rate doesn't doanything for, say like the first
five or six minutes.
Then all of a sudden you hit aseven minute mark and you see it
(11:21):
skyrocket.
And so that 10 minute window isimportant.
Speaker 2 (11:25):
That time window that you mentioned like, for example
, that patient who didn't havethe heart rate spike for seven
minutes is interesting because Idon't think if you're just
living your daily life, youwould connect that when I stand
up I get a rush in heart rate.
If it's happening seven minutesafter you stand up, you know
(11:46):
you like go about your life andthen all of a sudden you feel
like, oh, my heart rate is likeracing and get this sense of
anxiety.
If it's seven or 10 minutes oreight minutes after he stood up,
I don't know that I wouldconnect that.
Do you see patients that havethis like aha moment?
Speaker 1 (12:03):
What I've noticed is that some people are very aware
of their heart rate and theirtachycardia and other people are
not.
So there's definitely avariability in terms of
someone's own perception of whattheir heart rate is doing.
Some of my patients, when I'mwatching their heart rate, they
don't necessarily feel like it'sracing, even when it is, and
(12:24):
then other people are almosthyper aware.
So I'd say there's definitely abroad range of what the patient
is actually experiencing inthose moments.
Speaker 2 (12:35):
Yeah, I can see that, and that might be another
reason why it's hard to pin downthis diagnosis, which can be so
crucial.
Speaker 1 (12:45):
I think it comes back to the idea of interoception
and this idea that we have thispart of the brain called the
insular cortex which is where wehave our interoception, our
ability to be aware of what'shappening internally.
And when I was writing my book,I did come across a very
interesting and when I waswriting my book I did come
(13:05):
across a very interestingresearch paper that I referenced
that talked about this ideathat some people with
dysautonomia they can actuallysee some dysfunction within
these regions of the brain thatare involved in interoception
and that can lead to a lot ofpoor feedback between the brain
and the body, where maybe peopledon't recognize when they're
(13:26):
hungry, or maybe people don'trecognize when they're cold, or
maybe people aren't gettingproper signals from their body
to say that something is off,and so it's like this
dysfunctional feedback loopbetween the brain and the body.
Speaker 2 (13:40):
I see that all the time and you feel disconnected
from your body is one of theways people will say it to me
Like I just don't feel, like I'mlike fully in there, or I want
to be more connected to my body.
Yeah, it's, it's feeling likeyou're not fully, like
inhabiting, or you don't knowwhen you're hungry or you're
tired or thirsty, you can't tellif you're cold.
Yeah, it's a.
It's interesting that you saythat.
(14:02):
Do you see that connect andcorrelate with an autonomic
dysfunction?
Speaker 1 (14:08):
Again, I think it can go both ways.
In some cases people aren'treally paying attention to the
cues their body is giving them,and that can be problematic.
And then you can have the exactopposite, where people are too
in tuned and every single littlesensation is a cause for
anxiety and there's a bit of aalmost a hyper focus on every
(14:29):
single little ache and pain andtwitch and twinge.
And so I absolutely yeah, it's,it can go both ways really.
Speaker 2 (14:37):
Both of them.
But these testing opportunities.
That's why I think they're sohelpful, because patients we all
know they're not super reliablein their own just reporting,
because it can change so much orwhat they're even aware of
capturing.
Speaker 1 (14:52):
Yeah, and I exactly, and I think another good example
of that is when people havewhat I call increased heartbeat
awareness, where they feel liketheir heart is pounding.
And what I've come to reallyrecognize is that people's heart
can be pounding, but it doesn'tnecessarily mean that it's
pounding fast, although manytimes when people feel like
(15:13):
their heart is pounding, theythink that it actually is an
elevated heart rate andsometimes it is, but sometimes
it isn't.
And so, again, we have toreally get the data to say what
is your heart rate doing indifferent positions?
What is your heart rate doingwhen you're laying down, what is
your heart rate doing whenyou're standing, what is it
(15:34):
doing when you're sitting, andwhat is it doing when you're
exercising and what is it doingwhen you stop exercising?
Like, all of that data is superimportant to understand.
Yes, you may be feeling apounding heart, but is it
actually an increased heart rateas well?
Speaker 2 (15:50):
So if you don't have a cardiologist to refer to or to
work with in a timely manner,what are some of the ways?
Like, how do you startassessing for POTS in your
office?
Speaker 1 (16:01):
Really basic by having people first.
This Really basic by havingpeople first.
I just have them sit down rightand look at what is your blood
pressure, your heart rate, yourSpO2 numbers when you're sitting
.
And some people you know theyhave white coat syndrome, right,
and they have high bloodpressure when they're sitting.
And so if that's the case, it'salso important for people to
(16:22):
monitor their heart rate at homeand to sit for five minutes
without talking to anybody andthen take their blood pressure,
like you know, multiple timesjust to see is my blood pressure
consistently way lower at homeversus if I'mhoot the white coat
syndrome?
But then I have people lay downand, again, not talk.
Lots of people like to talk andoftentimes they're telling you
(16:51):
about all the stressful thingsgoing on in their life and
that's going to affect the data.
So the key is to not talk.
And so having people layingdown again, looking at blood
pressure, heart rate, oxygen andsymptoms and then when you tilt
them up and have them at a tiltfor 10 minutes, you're
monitoring everything Againblood pressure, heart rate,
(17:14):
symptoms and you're documentingall of that, and so through that
you can start to gather data onwhat their heart rate is doing
in relationship to whetherthey're laying down versus
whether they are upright, andthen what happens when they've
been upright for a whole 10minutes.
The other thing about POTS isthat part of the POTS diagnosis
is that it isn't occurring inthe presence of low blood
(17:38):
pressure.
So if you see that somebody hasorthostatic hypotension where
their blood pressure is dropping, that part of the POTS
diagnosis is that you'reactually seeing the tachycardia
in the presence of normal tohigh blood pressure.
Speaker 2 (17:55):
Okay, so that's an interesting tease.
In your book you talk aboutadditional diagnostic
considerations, maybe like thishigh blood pressure, low blood
pressure, yeah, when you'reassessing for POTS.
Could you talk about those?
Speaker 1 (18:09):
Yeah.
So to go through kind of a fewof these other nuances of the
diagnosis, typically, like whatyou should see is that the
symptoms that people get whenthey are upright whether it is
dizziness, nausea,lightheadedness, increased pain
those symptoms typically getbetter pretty quickly when you
bring them back down.
So that's kind of one piece.
(18:31):
The other piece is that ifsomebody is fainting, that alone
is not enough to say that youhave a POTS diagnosis.
Right, you got to collect theactual data on the heart rate.
So that's one thing.
And then you also need toexclude other causes.
Like I've had a patient who wasprescribed a certain medication
(18:52):
and as soon as she went on themedication she developed
basically postural orthostatictachycardia.
And so you have to kind ofunderstand too that you don't
want to give someone a POTSdiagnosis if you haven't ruled
out other causes, like whetherit's a medication or something
else.
So secondary causes oforthostatic tachycardia need to
(19:15):
be excluded.
So those are some of the kindof nuanced considerations, kind
of nuanced considerations.
But then if somebody does havea pretty clear postural
orthostatic tachycardiapresentation it's been there for
months, you know, and it'srepeatable then we have to also
understand that there'sdifferent categories of POTS.
(19:36):
And yes, next, yeah, pleasetalk about this.
So people can have multiplecategories all at the same time.
So I'm going to talk about thecategories as separate things,
but some people have, um, theycan have more than one.
Yeah, they can fall into morethan one criteria, but one.
Speaker 2 (19:55):
Welcome to neurology, not to make it more confusing.
There's never a clear cut, butthere are some considerations.
Speaker 1 (20:01):
Oh my gosh, biology is messy.
There's no less black and white.
Speaker 2 (20:07):
No, we wish there was , but it's nice to understand
some parameters so we can see aspectrum.
Let's talk about them.
You break it down into multiplesubtypes.
Speaker 1 (20:18):
So we have the hyperadrenergic POTS, which is
actually the most common subtypeof POTS.
However, I was listening to adifferent podcast and there was
a medical doctor actuallytalking about.
He was expressing frustrationthat people kind of ignore this
hyperadrenergic component.
So I thought that was kind ofinteresting that even with this
(20:39):
being the most common subtype,that it's still maybe not quite
acknowledged to the degree thatit should be.
But in this subtype there'sactually too much norepinephrine
in the system and that could bebecause there's just excessive
production of it or there's anexcessive amount of release of
(20:59):
this neurotransmitter or there'sa failure of proper reuptake so
that there's just more of it inthe system.
Speaker 2 (21:07):
Can you talk about what norepinephrine is for
people who might not understandthat neurotransmitter?
Speaker 1 (21:13):
Sure, it's a neurotransmitter produced in the
lower brainstem and it's highlyinvolved in being alert.
And so you know, when we talkabout people that maybe feel
super kind of dopey or druggedup or tired.
Some people don't produceenough norepinephrine and they
can just feel very kind ofsleepy and out of it, but when
(21:36):
there's too much of it it'salmost, like you could say,
people maybe feel a little bitmore anxious and kind of hyper,
hyper alert.
Speaker 2 (21:48):
Kind of wired right Like I can't rest or I can't
fall asleep.
Do people with a high level ofnorepinephrine have difficulty
sleeping?
Speaker 1 (21:52):
Potentially, and in this population I mean, I would
say that, with dysautonomia ingeneral, people's sleep cycles
are often disrupted as part ofit, because the autonomic
nervous system controls ourcircadian rhythms and a lot of
our sleep rhythms, all thisdigestive and sleep and
reproductive.
Speaker 2 (22:12):
So if you have this hyperadrenergic type, which is
the most common, you have toomuch norepinephrine in your
system.
Is that what you're saying?
Speaker 1 (22:20):
Yeah, and that can actually be measured in plasma
levels of norepinephrine.
So this is something that canbe tested to say is there too
much, and we can actuallymeasure that.
So that's part of it.
But then the other part is thatthat leads to orthostatic
hypertension, and so in thehyperadrenergic POTS what you
typically see is that the heartrate goes up and blood pressure
(22:43):
goes up too when you're doingthe tilt testing.
And so that's important torecognize, because there are
some drugs like theantidepressants the Cymbalta,
effexor which are norepinephrineserotonin reuptake inhibitors,
that you wouldn't want to placesomebody on, because if they
(23:03):
already have too muchnorepinephrine, you certainly
don't want to give them a drugthat actually supports the
production of it and thepromotion of it.
Speaker 2 (23:12):
Yes, that's huge, but that's maybe another reason why
this physician was expressingthat there's not enough people
who really pay attention to thissubtype, even though it's the
most common.
There's so many considerationsa care team would have to have,
like you just mentioned, withmedications to treat other
components that might drive thisA lot of people that suffer
(23:34):
from migraines as part of theirpicture of having
hyperadrenergic POTS.
Speaker 1 (23:41):
Those two things seem to be linked and so when you do
have people with dysautonomia,they often have either headaches
or, you know increasedfrequency of migraines as part
of the clinical picture, and sothat seems to be more common
with the hyperadrenergic POTSand that might also indicate
that there's a hormonalimbalance as part of this
(24:01):
clinical picture, because manypeople with migraines seem to
have imbalances between you knowtoo much estrogen or not enough
progesterone or these kind ofestrogen progesterone imbalances
.
And that's where it also wouldindicate that it might be good
to really look at someone'shormones and do some hormone
testing to see what theirestrogen levels are at different
(24:22):
times throughout the cycle, tounderstand if that is part of
this picture too.
I think it's like 70% of POTScases is in females between the
age of, say, like 15 and 45.
It's like, well, what else ishappening in women between age
15 and 45?
Well, their hormones aresupposed to be cycling in a very
(24:43):
orchestrated manner, and somaybe we need to do a whole lot
more research on the hormonalcomponent and how much that
might be actually contributingto some of these POTS type
presentations.
Speaker 2 (24:56):
It's not so simple.
Again, we're getting into themessiness of biology, I know.
So we have the hyperionergicpots, but are there other types?
Speaker 1 (25:06):
The next one is the hypovolemic pots, and this
exists when we have thisdysfunction within the
renin-angiotensin-aldosteronesystem, which regulates fluid
balance and water metabolism inthe body.
So what this creates is a lowplasma volume and you can
actually measure that by doing a24 hour urine test and so
(25:26):
people basically have to peeinto a big container and collect
their urine for 24 hours andthen you can actually look at
the levels of sodium andpotassium and creatinine and you
can see that there is somedysfunction within these levels.
And basically a lot of thesehypovolemic POTS patients, they
feel very lightheaded, verydizzy, very weak when they're
(25:49):
standing because of this.
You know, decreased plasmavolume With this one.
This is where a lot of peopledo find some relief in doing the
things that help to retainwater.
You know, like salt, a lot ofpeople will find that by
increasing their salt intake ordoing salt tablets or doing
(26:10):
electrolytes to try to helpsupport the fluid retention and
kind of boost that plasma volume, that that can be helpful as
well as compression garments.
And so this is the type of potswhere, like those types of
therapies can can be helpfulmanagement strategies.
Speaker 2 (26:28):
Yeah, and is there another one?
Speaker 1 (26:31):
Yes, so then we have pots plus mass cell activation,
and so mass cell activationsyndrome, or is essentially a
situation where people haveincreased mast cell activity.
Mast cells release histamine.
Histamine causes vasodilation,and so this is where many people
will break out into hives orthey'll have the like splotchy
(26:55):
red skin.
A lot of times they have thesesymptoms come on after they eat
meals, and so there's certainkind of triggers for this as
well is that more of the immunesystem component?
Speaker 2 (27:08):
I mean, you think of mast cell activation.
They're usually, yeah, inresponse to some immune function
right.
Speaker 1 (27:16):
Essentially their mast cells are overactive and so
they have just this increasedresponse that is causing a lot
of these symptoms.
A lot of these people will haveshortness of breath, they'll
have increased headaches as well, excessive, excessive urination
, and a lot of them have a lotof nausea and even vomiting.
And so, again, this can bemeasured.
(27:38):
You can actually measure methylhistamine levels in the urine.
The other reason why on likewhy, catching the mast cell
activation component of it, isthat most people with POTS are
actually given beta blockers totry to lower their heart rate.
That's like the most commonlyprescribed medication when
(27:59):
somebody has posturalorthostatic tachycardia, but
when they have mast cellactivation, beta blockers are
actually kind of cautionedagainst.
So this is another reason whyunderstanding the different kind
of subtypes of POTS is soimportant is because they can
actually impact treatmentguidelines.
Speaker 2 (28:20):
Absolutely, and would you approach them with
treatment differently?
Speaker 1 (28:24):
From more of a holistic perspective, I pay a
lot of attention to liverfunction.
When people have mast cellactivation syndrome, there's
oftentimes a liver componentthat needs to be.
Of a holistic perspective, Ipay a lot of attention to liver
function.
When people have mast cellactivation syndrome, there's
oftentimes a liver componentthat needs to be supported and
there's herbal formulas thatwork really, really well to help
prevent the production ofhistamine and clear out excess
(28:44):
histamine.
So I think in this particularcase there's often a lot of gut
issues and kind of gut liverdysfunction that needs to be
addressed.
Speaker 2 (28:55):
And someone with a hypovolemic POTS would you
indicate as an approach?
Speaker 1 (29:01):
That is where you also need to well.
So I guess with all of the POTSpresentations, you also want to
pay attention to the concept ofwhere am I in space?
You have to ask that questionof okay, why am I having
symptoms when I go from layingdown to standing?
And there's different systemsin the like.
There's different systems.
(29:22):
We have redundancies within ournervous system, but one of the
systems is this barrelreceptorceptor system.
So we have these receptors inthe carotid arch and in the neck
, in the arteries in the neck,and so they're supposed to pick
up the fact that when you go tostand up, we need to have a
(29:43):
slight increase in bloodpressure so that, instead of
gravity taking our blood andbringing it down towards the
ground that our system is over,overcoming that by having blood
flow, enough of it get to thebrain so that we don't pass out
right.
And so part of that is this ideaof these baroreceptors saying
(30:04):
okay, we've just changed, youknow, we've just changed
position, and so now we need torespond by increasing blood
pressure a little position.
And so now we need to respondby increasing blood pressure a
little bit.
And so the baroreceptors are,you know, picking up on changes
within the system, changeswithin the pressure, and then
signaling to the brainstem, andthen the brainstem is responding
and then signaling to the heart.
And so this is this very finelytuned orchestra that, if it's
(30:27):
not happening appropriately andpeople lose what we call
baroreceptor sensitivity, thatthat can be part of the problem.
Speaker 2 (30:35):
Can we just take a second to like just to
appreciate how incredible ourbodies are, that they can like
adjust to gravity, how our bloodis flowing, so that we feel
normal and we are so quick wedon't even know what's happening
because our systems, whenthey're healthy, just do this so
(30:56):
naturally.
And then these littledisruptions, whether it's in the
liver or in the brainstem or ifit's in our adrenals, like they
can really affect thesensitivities of the receptors
or the abilities for these loopsof information to respond
appropriately to the changes inour position and gravity.
(31:17):
I mean, that's just.
I think that's pretty cool.
Speaker 1 (31:22):
I know I mean when things are working well.
We don't appreciate it right,we don't really appreciate what
our system is supposed to dountil it stops doing it.
Speaker 2 (31:30):
And then it doesn't do it right and we're like whoa,
like oh my goodness, this isnuts.
It's so disorienting.
And then we have to have theability, as providers, to tease
out which part of this reallyintricate system is.
The disruption happening inthis miscalibration of the
system that might be driving allthese other symptoms can be
(31:52):
coming from cervicalproprioception.
It can be coming from adrenalfunction.
It can be coming from liverfunction.
It can be coming from a headinjury or autonomic function.
It can be like so manydifferent things, hormonal
changes, like there's so manydifferent things that we have to
be able to see, which is why Ithink it's really helpful to
have a specialist whounderstands these things very
(32:16):
cohesively and is teasing outmaybe these subtypes or what the
symptoms are that are reallypresenting.
Speaker 1 (32:25):
Yeah, and the other thing.
Well, I guess a couple ofthings that jump into my mind.
One I just want to go back realquick in the topic of the
baroreceptors, in that you canactually test the baroreceptor
sensitivity by doing a Valsalvamaneuver and so by bearing down,
you're changing yourinterthoracic pressure, which
increases blood pressure.
(32:46):
And so by doing a Valsalvamaneuver and looking at blood
pressure and heart rateresponses, you know a clinician
can actually see what the bodyis doing in response to this
increased pressure and then,when you let it off, what is the
reaction to that.
And so by looking at thesechanges in blood pressure and
heart rate, when somebody isdoing a Valsalva maneuver and
(33:08):
then releases, that gives ussome data to say are the
baroreceptors interpreting thatinformation correctly?
So I just wanted to throw outthat there are different ways to
actually test for baroreceptorsensitivity, which is great.
Even if we don't have a 12-leadEKG, or even if we don't have a
12-lead EKG, or even if wedon't have continuous blood
(33:29):
pressure cups monitoring, we canstill collect data on a tilt
table test and on a baroreceptorsensitivity test and on a
five-minute sustained hand griptest and pupillary light
reflexes.
So at the bedside, functionally.
We can still assess theautonomic nervous system to,
like I said earlier, observewhat's happening with the
(33:53):
patient's autonomic system andthen start to look at where is
this dysfunction, where areother areas of dysfunction that
might be contributing to theseerrors in the system, and how do
we restore more integrity tothe system?
Restore more integrity to thesystem, and so part of that is
doing additional troubleshooting.
For example, I have seen a lotof patients that have mold
(34:21):
exposure, have a lot oftachycardia and they have a lot
of the kind of pounding heartsensations as part of like a
mold exposure typesymptomatology.
So sometimes you've got to goreally deep and say are there,
you know, environmental issueshere?
Is there like Lyme disease aspart of this diagnosis?
Is there a virus?
Is there an autoimmunecomponent?
So there's a lot oftroubleshooting that has to
(34:41):
happen and then also payingattention to, like, the hormones
like we talked about.
So there's there's just a lotof diagnostics that have to go
into it to really try to figureout, you know, the big picture
of everything and not justlooking at POTS as, oh, this is
a situation of a rapid heartrate, like there's so much more
to it than just that onecomponent.
(35:04):
So so that's kind of bigpicture, and I think that that's
where a lot of people get lostin the system is when they just
go down the route of being givenmedications to artificially
control the autonomic nervoussystem.
So, like one of my patients thatwas diagnosed with POTS, if she
was laying on the floor herheart rate would go down to 50.
(35:27):
When she stood up, her heartrate would go down to 50.
When she stood up, her heartrate would jump up to 150.
So she was so symptomatic.
I remember when we did ourinitial 15-minute kind of
consultation over telemedicine,just so she could find out more
about the work that I do, hervideo popped up on the
telemedicine and she wasliterally just like spread eagle
(35:49):
on the floor, like she's.
Like I can't even sit up forthis conversation.
Yeah, and so you know.
If you can imagine your heartrate going, you know changing by
a hundred beats a minute whenyou go from laying down to
standing.
That's crazy, I mean, that'syeah, and so you know.
She was given one medication totry to lower her heart rate but
(36:11):
she was given anothermedication to increase her blood
pressure.
But if you're taking amedication that lowers your
heart rate, but your heart rateis 50 when you're laying down.
Well, it's like no wonder shefelt worse on that medication.
Nervous system is meant torespond in the moment and when
(36:33):
we artificially, you know, tryto control it with
pharmaceuticals.
It doesn't account for asituation where, yes, her heart
rate might be 150 when she'sstanding, but if she's on a
heart rate lowering medicationand then she goes to lay down
and then her heart rates now in50.
You know, it's just you'retaking away her body's own
ability to try to figure thatout.
Speaker 2 (36:51):
For sure, and that's an important part of
rehabilitation.
Recovery is like how do weactually help the system respond
better and like we get its ownintegrity?
There's so many nuances in careand difficulties and challenges
for patients who might getmisdiagnosed or miscategorized,
or or the providers might notfully understand what's going on
(37:12):
, so put them on the wrongmedication.
I wonder what kind of hope wecan give patients who are
struggling with these things tofeel like.
Okay, if I do want to findsomeone for help in assessing
this, what do I look for andwhat kind of provider do I need?
Speaker 1 (37:27):
I think, having a provider who's willing to
collect a lot of data and do alot of these functional tests
and then to also look at the bigpicture of you know, is there a
viral infection?
Is there an autoimmune diseasethat hasn't been discovered yet?
Is there a mold exposure?
(37:48):
Is there a concussion?
Is there long COVID?
Is there mitochondrialdysfunction?
Is there a baroreceptorsensitivity issue?
Is there a vestibular disorderthat's driving this?
They got to find a practitionerwho understands all these
different potential factors andis willing to look at all of
that and start to rule certainthings out or rule certain
(38:11):
things in and then continue togo down these rabbit holes of
you know, doing theinvestigative lab work and the
diagnostics and the testing andthen also, at the end of the day
, you know we keep coming backto the studies that show that
exercise is one of the best waysof helping the autonomic
(38:32):
nervous system.
Yes, and you have to figure outhow to do that in a way that is
obviously safe for the patient,especially if they're dizzy and
nauseous, and you knowunderstanding that it's not okay
.
Let's just immediately try toget you on a treadmill and
walking 15 minutes a day.
It's like.
No, like some people that's notpossible, right.
Speaker 2 (38:52):
Working with specialized providers who
understand how to taper yourexercise dose and your exercise
engagement to help your systemis huge.
That's really important yeah.
Speaker 1 (39:05):
And I think that's where, like, a recumbent bike
can be really helpful, becausepeople can actually be sitting
down and still getting someblood pumping and doing exercise
, but they're seated, whereas Ithink in a lot of cases
treadmills are not necessarilythe immediate starting point.
Yeah, depending on again justhow symptomatic they are.
Speaker 2 (39:29):
But I think we understand that everyone has to
have, like their ownprescription based on your
symptoms and other things, andyour book does a really nice job
of helping people understandthat.
And now our audience has someresources and maybe some better
understanding of like why and inwhat ways these complexities
can make a really big differencein how you approach treatment
(39:51):
and the outcomes you would see.
Speaker 1 (39:53):
Yeah, I mean, a lot of people will ask me.
They're like do you think Ishould go and get tested, or do
you think I should go see acardiologist?
And my answer is always yes,Like, go get as much testing and
as much diagnostic workup asyou possibly can, and then you
get to get the information, theright diagnosis, and then figure
out how to move forward fromthere.
(40:14):
So it's, you know, I'm not I'mnever against going to see
specialists and going to do moretesting.
You know, I'm always highlyrecommending that people do
those things.
And then, like I said, they getto get the information, get the
right diagnosis, and thenfigure out strategies for how do
I want to approach this fromhere.
Speaker 2 (40:33):
Yeah, and that's the thing is like sometimes, and I'm
all for the testing, butthere's a frustration like OK,
once you get the test.
Speaker 1 (40:41):
Oftentimes you just say OK, like this is what you
have and that's because a lot ofdoctors will actually tell
their patients there's no curefor this.
Speaker 2 (41:01):
Because a lot of doctors will actually tell their
patients there's no cure forthis, and I think that what they
this with the public and getthis information on this really
complex condition out there tostart to hopefully make a good
impact.
Speaker 1 (41:18):
Well, thank you so much.
I mean this is a reallydifficult and complex topic and
even for the people whounderstand it really well, it
doesn't always mean thatrecovery is necessarily quick,
fast or easy, and so I thinkit's also one of those things
where you know, helping peopleto understand expectations and
(41:38):
that they a lot of times it'sbaby steps and you know really
just trying to make sure thatwe're heading in the right
direction.
So it requires a lot ofpatience on the part of both the
patient and the provider toreally work through this and to
come up with treatment plansthat are helpful.
And so, again, it's not asimple topic and it's not a
(42:00):
simple treatment plan, and Ithink that part of the
difficulty in writing thischapter in my book is that I
couldn't just give people youknow, here is the treatment,
because the truth is iseverybody needs something
different.
But I hope that at least thisgives people some things to
think about and maybe someavenues to explore.
So thanks for diving into thiswith me.
(42:23):
Yes, for our listeners.
If there's any topics you'dlike us to cover, please send us
an email at lifeafterimpact atgmailcom, or you can click the
send us a text link in the shownotes.
My new book, the ConcussionBreakthrough Discover the
Missing Pieces to Recovery, isalso now available on Amazon and
(42:45):
you can link to that throughthe show notes or through our
website atlifeafterimpactatgmailcom.
Thanks for listening.
We'll see you next time.
Medical disclaimer.
This video or podcast is forgeneral informational purposes
only and does not constitute thepractice of medicine or other
(43:08):
professional healthcare services, including the giving of
medical advice.
No doctor-patient relationshipis formed.
The use of this information andmaterials included is at the
user's own risk.
The content of this video orpodcast is not intended to be a
substitute for medical advice,diagnosis or treatment, and
(43:31):
consumers of this informationshould seek the advice of a
medical professional for any andall health-related issues.
A link to our full medicaldisclaimer is available in the
notes.
in the hyperadrenergic POTS, what you
typically see is that the heartrate goes up and blood pressure
goes up too when you're doingthe tilt testing.
Welcome to Life After Impactthe concussion recovery podcast.
I'm Dr Ayla Wolf, and I will behosting today's episode where
we help you navigate the oftenconfusing, frustrating and
(00:21):
overwhelming journey ofconcussion and brain injury
recovery.
This podcast is your go-toresource for actionable
information, whether you'redealing with a recent concussion
, struggling withpost-concussion syndrome or just
feeling stuck in your healingprocess.
In each episode, we dive deepinto the symptoms, testing,
treatments and neurologicalinsights that can help you move
(00:44):
forward with clarity andconfidence.
We bring you leading experts inthe world of brain health,
functional neurology andrehabilitation to share their
wisdom and strategies.
So if you're feeling lost,hopeless or like no one
understands what you're goingthrough, know that you are not
alone.
This podcast can be your guideand partner in recovery, helping
(01:04):
you build a better life afterimpact.
All right, welcome to LifeAfter Impact the concussion
recovery podcast.
I'm Dr Ayla Wolf and I am herewith the birthday girl, sophia
Bowens.
Hi, sophia.
Speaker 2 (01:20):
Hello Dr Wolf.
It's so exciting to be here.
Speaker 1 (01:24):
Are you having a great birthday weekend?
Speaker 2 (01:26):
I've had a great birthday weekend.
I'm officially in my late 30s.
Something about that feels likevery adult to me.
Speaker 1 (01:35):
Well, you're still young at heart.
Speaker 2 (01:37):
I am, I don't feel old.
My mom always told me lifebegins when you're 40.
And my mom told me that too,and I didn't believe her.
But let me tell you what thatis.
So waiting for life to begin,but it's been a really good
birthday, reconnecting with alot of old friends and just,
yeah, living life.
I'm excited to be here with youdoing this kind of stuff, and I
(01:58):
think our topic today is justreally a good one.
So do you want to describe whatwe're going to be talking about
today?
Speaker 1 (02:06):
Yeah, I thought it would be a good idea to dive
into some of the nuances of POTSpostural orthostatic
tachycardia syndrome because Iwould say that more frequently
I'm having women come into myclinic who tell me that they are
concerned that they have POTSand in some cases, when we go
(02:29):
through a lot of autonomictesting and we look at all the
data, it sure looks like they do.
And in other cases I've hadpeople come in and say I think I
have POTS and I've run themthrough all my tests and I say
there's absolutely zero sign ofyou having POTS.
But that's not to say that weneed to discount their symptoms.
You know, in one particularcase my concern was that she
(02:52):
maybe actually had cervicalinstability that was driving a
lot of her autonomic symptomsand so after going through all
of the testing, I felt prettyconfident in saying nothing that
I see here looks like POTS.
However, I want to refer youout for a DMX, a digital motion
x-ray, to get some better dataon what's going on with your
(03:13):
neck, because I'm concerned thatyou might have some cervical
instability going on.
Speaker 2 (03:18):
Yes, and the upper cervical and the autonomic
system are so intimately related, so that's huge.
Pots can be such a tricky thingto diagnose or to even start to
tease out and I love that youhave ways to assess whether or
not it's likely to get to havelike the POTS or some other type
(03:38):
of autonomic dysfunction.
Speaker 1 (03:40):
Yeah, so I have a big chapter in my book on
dysautonomia and autonomicdysfunction and I start out that
chapter with a very long listof possible symptoms, and so I
think for some people that mightbe eye-opening because it is
able to connect a lot of thedots for why they might be
having a lot of what we mightcall non-specific symptoms that
(04:03):
don't necessarily point to oneeasy, simple diagnosis.
Speaker 2 (04:09):
Right, so I'm sorry to interrupt you.
No, go ahead.
I was just.
This is such an interestingcomponent of this because I
haven't had a patient recently.
I think I may have mentionedthis patient before, but their
first original referral was forperipheral neuropathy, post
viral infection.
(04:29):
So they got, or no, postGuillain-Barre.
Um, they got Guillain-Barre andthen they had this neuropathy
that wouldn't go away after thisacute episode of it, and so I
tried, started treating them forthis neuropathy and just we
kept like teasing in.
Different symptoms would kindof come out, Some things would
(04:50):
get better, Some things wouldget worse or things would
exacerbate.
It just wasn't going the waythat I thought it would go.
So we were teasing in and Ireally started honing in on,
like actually there's autonomicdysfunction here that's
disrupting circulation to theextremities, causing neuropathy,
and eventually this heart ratecomponent started coming up
(05:13):
where they first were sayinganxiety and then their anxiety
would get better.
And it wasn't until like far toolong that I realized actually I
think you have POTS.
Like far too long and Irealized actually I think you
have POTS, I think that there's.
There's something like it wasthis aha moment.
So I reached out to thereferral provider and said like
(05:36):
could you put a referral in fora POTS assessment?
And I talked to some of themembers on our vestibular team
and they were like oh well, wedo have a tilt table here, but
you need to go to a cardiologistto get assessed for POTS, like
a specific neurologist, becausethey have to use like a 12-leaf
EKG to assess for this.
And I was kind of stumped bythat because I just thought, no,
yes, okay, maybe there's likethis one valid test, but there's
(05:57):
other ways we could assess thison the ground and make an
impact before they get in to seea cardiologist or a neurologist
for this test.
That like we could do here.
Speaker 1 (06:09):
Yeah, I think what you're, what you're getting into
, is kind of this murky area ofwho in terms of scope of
practice.
Speaker 2 (06:19):
And so.
Speaker 1 (06:20):
I think that perhaps the vestibular therapist was
saying well, we might be able towork with somebody that has a
diagnosis of POTS, but becauseof our scope of practice, we
need to actually get somebody toa cardiologist so the
cardiologist can give them theactual diagnosis.
And then they are then sent tous with the diagnosis and then
(06:41):
we can work with them.
Speaker 2 (06:43):
Oh, that's the inefficiencies of medicine.
Isn't that true?
Speaker 1 (06:47):
Well, it is very inefficient if those
cardiologists have a two to sixmonth waiting list for sure.
Meaning all this patientsuffering.
Speaker 2 (06:55):
So I wonder you talk about some different
considerations for diagnosingwhen you have these assessments.
Yeah, Can you share?
Speaker 1 (07:04):
with the.
So that is, yeah, I mean, forme in my practice I'm all about
observing, right?
I'm all about observation,collecting data, and then if I
collect enough data and I say,you know, hey, I think you
really do need to maybe go andhave a full autonomic reflex
testing panel done.
You know, I'll refer out forthat, but with the knowledge
(07:25):
that there's typically a sixmonth waiting list, at least
where we live, because there'sonly two major clinics that do
that.
But absolutely I wouldn't waitto collect the data on what
someone's autonomic nervoussystem is doing, because that's
super easy data to collect.
I mean, you know, having aheart rate monitor, a blood
pressure cuff, a tilt table,these things are pretty basic
(07:49):
and so and they're usually foundin a lot, of, a lot of clinics.
Speaker 2 (07:53):
Yeah, and maybe we wouldn't be the ones to diagnose
pots like the classical pots,but we could work with someone
with these pots like symptomsand make improvements if we're
understanding what's reallygoing on.
Speaker 1 (08:06):
Yeah, and so I think that it's important to recognize
there's a difference betweenpostural orthostatic tachycardia
and postural orthostatictachycardia syndrome, right?
So as soon as you add syndrometo the end of that, you've got a
legit diagnosis.
But certainly there's nothingwrong with saying, hey, we are
(08:27):
observing postural orthostatictachycardia in this moment,
let's keep monitoring it andthen let's make the appropriate
referrals, right?
Speaker 2 (08:35):
All right, yes, so what kind of assessments might
you look at?
Or do you talk about this inyour book?
How might you start to assessfor this?
You shared a little bit aboutthis exploration for your.
Actually, you don't have likePOTS, but you have maybe
cervical instability.
How would?
What are some of the things youdid to tease that out?
Speaker 1 (08:55):
For starters, there is an age difference.
So when we look at, say, likeyounger teenagers, age 12 to 19,
the diagnostic criteria forPOTS is actually seeing a heart
rate increase of greater than 40beats a minute on a tilt table
test, whereas for adults it's 30.
And so that's important too isthat if you're working with a
(09:18):
younger individual, theyactually might have you know,
they have different criteria fordiagnosing POTS.
So that's one thing I want tomention.
The other thing is going backto this idea of, as a syndrome,
the symptoms.
If you're looking at reallystrict criteria for POTS,
there's even you know, I readall these research papers where
(09:40):
they're saying that the criteriafor POTS has kind of gotten
like broader and broader andbroader and so then all of a
sudden more and more people canbe included in it.
And there's POTS is rather anewer diagnosis and I think the
criteria is still in a senseevolving as we find that
different things are causing itand there's different
manifestations of it.
(10:01):
So the very first establisheddefinition was in 1982.
So that's not that long ago.
And so when we think about itas a syndrome, some of the
strictest criteria states thatit actually needs to be
persistent or present for sixmonths or more, and so that's
(10:21):
one thing.
The other thing is that this,you know, going back to that
same idea, is that this increasein heart rate for adults of
greater than 30 beats per minutewhen you go from you know
laying down to standing or on atilt table, that that's
reproducible.
It's not just happening once,no-transcript.
(11:00):
So that's one thing to kind ofkeep in mind.
The other is that this elevatedheart rate does occur within
three to 10 minutes.
So that's the other piece whereI have seen people stand up and
their heart rate doesn't doanything for, say like the first
five or six minutes.
Then all of a sudden you hit aseven minute mark and you see it
(11:21):
skyrocket.
And so that 10 minute window isimportant.
Speaker 2 (11:25):
That time window that you mentioned like, for example
, that patient who didn't havethe heart rate spike for seven
minutes is interesting because Idon't think if you're just
living your daily life, youwould connect that when I stand
up I get a rush in heart rate.
If it's happening seven minutesafter you stand up, you know
(11:46):
you like go about your life andthen all of a sudden you feel
like, oh, my heart rate is likeracing and get this sense of
anxiety.
If it's seven or 10 minutes oreight minutes after he stood up,
I don't know that I wouldconnect that.
Do you see patients that havethis like aha moment?
Speaker 1 (12:03):
What I've noticed is that some people are very aware
of their heart rate and theirtachycardia and other people are
not.
So there's definitely avariability in terms of
someone's own perception of whattheir heart rate is doing.
Some of my patients, when I'mwatching their heart rate, they
don't necessarily feel like it'sracing, even when it is, and
(12:24):
then other people are almosthyper aware.
So I'd say there's definitely abroad range of what the patient
is actually experiencing inthose moments.
Speaker 2 (12:35):
Yeah, I can see that, and that might be another
reason why it's hard to pin downthis diagnosis, which can be so
crucial.
Speaker 1 (12:45):
I think it comes back to the idea of interoception
and this idea that we have thispart of the brain called the
insular cortex which is where wehave our interoception, our
ability to be aware of what'shappening internally.
And when I was writing my book,I did come across a very
interesting and when I waswriting my book I did come
(13:05):
across a very interestingresearch paper that I referenced
that talked about this ideathat some people with
dysautonomia they can actuallysee some dysfunction within
these regions of the brain thatare involved in interoception
and that can lead to a lot ofpoor feedback between the brain
and the body, where maybe peopledon't recognize when they're
(13:26):
hungry, or maybe people don'trecognize when they're cold, or
maybe people aren't gettingproper signals from their body
to say that something is off,and so it's like this
dysfunctional feedback loopbetween the brain and the body.
Speaker 2 (13:40):
I see that all the time and you feel disconnected
from your body is one of theways people will say it to me
Like I just don't feel, like I'mlike fully in there, or I want
to be more connected to my body.
Yeah, it's, it's feeling likeyou're not fully, like
inhabiting, or you don't knowwhen you're hungry or you're
tired or thirsty, you can't tellif you're cold.
Yeah, it's a.
It's interesting that you saythat.
(14:02):
Do you see that connect andcorrelate with an autonomic
dysfunction?
Speaker 1 (14:08):
Again, I think it can go both ways.
In some cases people aren'treally paying attention to the
cues their body is giving them,and that can be problematic.
And then you can have the exactopposite, where people are too
in tuned and every single littlesensation is a cause for
anxiety and there's a bit of aalmost a hyper focus on every
(14:29):
single little ache and pain andtwitch and twinge.
And so I absolutely yeah, it's,it can go both ways really.
Speaker 2 (14:37):
Both of them.
But these testing opportunities.
That's why I think they're sohelpful, because patients we all
know they're not super reliablein their own just reporting,
because it can change so much orwhat they're even aware of
capturing.
Speaker 1 (14:52):
Yeah, and I exactly, and I think another good example
of that is when people havewhat I call increased heartbeat
awareness, where they feel liketheir heart is pounding.
And what I've come to reallyrecognize is that people's heart
can be pounding, but it doesn'tnecessarily mean that it's
pounding fast, although manytimes when people feel like
(15:13):
their heart is pounding, theythink that it actually is an
elevated heart rate andsometimes it is, but sometimes
it isn't.
And so, again, we have toreally get the data to say what
is your heart rate doing indifferent positions?
What is your heart rate doingwhen you're laying down, what is
your heart rate doing whenyou're standing, what is it
(15:34):
doing when you're sitting, andwhat is it doing when you're
exercising and what is it doingwhen you stop exercising?
Like, all of that data is superimportant to understand.
Yes, you may be feeling apounding heart, but is it
actually an increased heart rateas well?
Speaker 2 (15:50):
So if you don't have a cardiologist to refer to or to
work with in a timely manner,what are some of the ways?
Like, how do you startassessing for POTS in your
office?
Speaker 1 (16:01):
Really basic by having people first.
This Really basic by havingpeople first.
I just have them sit down rightand look at what is your blood
pressure, your heart rate, yourSpO2 numbers when you're sitting
.
And some people you know theyhave white coat syndrome, right,
and they have high bloodpressure when they're sitting.
And so if that's the case, it'salso important for people to
(16:22):
monitor their heart rate at homeand to sit for five minutes
without talking to anybody andthen take their blood pressure,
like you know, multiple timesjust to see is my blood pressure
consistently way lower at homeversus if I'mhoot the white coat
syndrome?
But then I have people lay downand, again, not talk.
Lots of people like to talk andoftentimes they're telling you
(16:51):
about all the stressful thingsgoing on in their life and
that's going to affect the data.
So the key is to not talk.
And so having people layingdown again, looking at blood
pressure, heart rate, oxygen andsymptoms and then when you tilt
them up and have them at a tiltfor 10 minutes, you're
monitoring everything Againblood pressure, heart rate,
(17:14):
symptoms and you're documentingall of that, and so through that
you can start to gather data onwhat their heart rate is doing
in relationship to whetherthey're laying down versus
whether they are upright, andthen what happens when they've
been upright for a whole 10minutes.
The other thing about POTS isthat part of the POTS diagnosis
is that it isn't occurring inthe presence of low blood
(17:38):
pressure.
So if you see that somebody hasorthostatic hypotension where
their blood pressure is dropping, that part of the POTS
diagnosis is that you'reactually seeing the tachycardia
in the presence of normal tohigh blood pressure.
Speaker 2 (17:55):
Okay, so that's an interesting tease.
In your book you talk aboutadditional diagnostic
considerations, maybe like thishigh blood pressure, low blood
pressure, yeah, when you'reassessing for POTS.
Could you talk about those?
Speaker 1 (18:09):
Yeah.
So to go through kind of a fewof these other nuances of the
diagnosis, typically, like whatyou should see is that the
symptoms that people get whenthey are upright whether it is
dizziness, nausea,lightheadedness, increased pain
those symptoms typically getbetter pretty quickly when you
bring them back down.
So that's kind of one piece.
(18:31):
The other piece is that ifsomebody is fainting, that alone
is not enough to say that youhave a POTS diagnosis.
Right, you got to collect theactual data on the heart rate.
So that's one thing.
And then you also need toexclude other causes.
Like I've had a patient who wasprescribed a certain medication
(18:52):
and as soon as she went on themedication she developed
basically postural orthostatictachycardia.
And so you have to kind ofunderstand too that you don't
want to give someone a POTSdiagnosis if you haven't ruled
out other causes, like whetherit's a medication or something
else.
So secondary causes oforthostatic tachycardia need to
(19:15):
be excluded.
So those are some of the kindof nuanced considerations, kind
of nuanced considerations.
But then if somebody does havea pretty clear postural
orthostatic tachycardiapresentation it's been there for
months, you know, and it'srepeatable then we have to also
understand that there'sdifferent categories of POTS.
(19:36):
And yes, next, yeah, pleasetalk about this.
So people can have multiplecategories all at the same time.
So I'm going to talk about thecategories as separate things,
but some people have, um, theycan have more than one.
Yeah, they can fall into morethan one criteria, but one.
Speaker 2 (19:55):
Welcome to neurology, not to make it more confusing.
There's never a clear cut, butthere are some considerations.
Speaker 1 (20:01):
Oh my gosh, biology is messy.
There's no less black and white.
Speaker 2 (20:07):
No, we wish there was , but it's nice to understand
some parameters so we can see aspectrum.
Let's talk about them.
You break it down into multiplesubtypes.
Speaker 1 (20:18):
So we have the hyperadrenergic POTS, which is
actually the most common subtypeof POTS.
However, I was listening to adifferent podcast and there was
a medical doctor actuallytalking about.
He was expressing frustrationthat people kind of ignore this
hyperadrenergic component.
So I thought that was kind ofinteresting that even with this
(20:39):
being the most common subtype,that it's still maybe not quite
acknowledged to the degree thatit should be.
But in this subtype there'sactually too much norepinephrine
in the system and that could bebecause there's just excessive
production of it or there's anexcessive amount of release of
(20:59):
this neurotransmitter or there'sa failure of proper reuptake so
that there's just more of it inthe system.
Speaker 2 (21:07):
Can you talk about what norepinephrine is for
people who might not understandthat neurotransmitter?
Speaker 1 (21:13):
Sure, it's a neurotransmitter produced in the
lower brainstem and it's highlyinvolved in being alert.
And so you know, when we talkabout people that maybe feel
super kind of dopey or druggedup or tired.
Some people don't produceenough norepinephrine and they
can just feel very kind ofsleepy and out of it, but when
(21:36):
there's too much of it it'salmost, like you could say,
people maybe feel a little bitmore anxious and kind of hyper,
hyper alert.
Speaker 2 (21:48):
Kind of wired right Like I can't rest or I can't
fall asleep.
Do people with a high level ofnorepinephrine have difficulty
sleeping?
Speaker 1 (21:52):
Potentially, and in this population I mean, I would
say that, with dysautonomia ingeneral, people's sleep cycles
are often disrupted as part ofit, because the autonomic
nervous system controls ourcircadian rhythms and a lot of
our sleep rhythms, all thisdigestive and sleep and
reproductive.
Speaker 2 (22:12):
So if you have this hyperadrenergic type, which is
the most common, you have toomuch norepinephrine in your
system.
Is that what you're saying?
Speaker 1 (22:20):
Yeah, and that can actually be measured in plasma
levels of norepinephrine.
So this is something that canbe tested to say is there too
much, and we can actuallymeasure that.
So that's part of it.
But then the other part is thatthat leads to orthostatic
hypertension, and so in thehyperadrenergic POTS what you
typically see is that the heartrate goes up and blood pressure
(22:43):
goes up too when you're doingthe tilt testing.
And so that's important torecognize, because there are
some drugs like theantidepressants the Cymbalta,
effexor which are norepinephrineserotonin reuptake inhibitors,
that you wouldn't want to placesomebody on, because if they
(23:03):
already have too muchnorepinephrine, you certainly
don't want to give them a drugthat actually supports the
production of it and thepromotion of it.
Speaker 2 (23:12):
Yes, that's huge, but that's maybe another reason why
this physician was expressingthat there's not enough people
who really pay attention to thissubtype, even though it's the
most common.
There's so many considerationsa care team would have to have,
like you just mentioned, withmedications to treat other
components that might drive thisA lot of people that suffer
(23:34):
from migraines as part of theirpicture of having
hyperadrenergic POTS.
Speaker 1 (23:41):
Those two things seem to be linked and so when you do
have people with dysautonomia,they often have either headaches
or, you know increasedfrequency of migraines as part
of the clinical picture, and sothat seems to be more common
with the hyperadrenergic POTSand that might also indicate
that there's a hormonalimbalance as part of this
(24:01):
clinical picture, because manypeople with migraines seem to
have imbalances between you knowtoo much estrogen or not enough
progesterone or these kind ofestrogen progesterone imbalances
.
And that's where it also wouldindicate that it might be good
to really look at someone'shormones and do some hormone
testing to see what theirestrogen levels are at different
(24:22):
times throughout the cycle, tounderstand if that is part of
this picture too.
I think it's like 70% of POTScases is in females between the
age of, say, like 15 and 45.
It's like, well, what else ishappening in women between age
15 and 45?
Well, their hormones aresupposed to be cycling in a very
(24:43):
orchestrated manner, and somaybe we need to do a whole lot
more research on the hormonalcomponent and how much that
might be actually contributingto some of these POTS type
presentations.
Speaker 2 (24:56):
It's not so simple.
Again, we're getting into themessiness of biology, I know.
So we have the hyperionergicpots, but are there other types?
Speaker 1 (25:06):
The next one is the hypovolemic pots, and this
exists when we have thisdysfunction within the
renin-angiotensin-aldosteronesystem, which regulates fluid
balance and water metabolism inthe body.
So what this creates is a lowplasma volume and you can
actually measure that by doing a24 hour urine test and so
(25:26):
people basically have to peeinto a big container and collect
their urine for 24 hours andthen you can actually look at
the levels of sodium andpotassium and creatinine and you
can see that there is somedysfunction within these levels.
And basically a lot of thesehypovolemic POTS patients, they
feel very lightheaded, verydizzy, very weak when they're
(25:49):
standing because of this.
You know, decreased plasmavolume With this one.
This is where a lot of peopledo find some relief in doing the
things that help to retainwater.
You know, like salt, a lot ofpeople will find that by
increasing their salt intake ordoing salt tablets or doing
(26:10):
electrolytes to try to helpsupport the fluid retention and
kind of boost that plasma volume, that that can be helpful as
well as compression garments.
And so this is the type of potswhere, like those types of
therapies can can be helpfulmanagement strategies.
Speaker 2 (26:28):
Yeah, and is there another one?
Speaker 1 (26:31):
Yes, so then we have pots plus mass cell activation,
and so mass cell activationsyndrome, or is essentially a
situation where people haveincreased mast cell activity.
Mast cells release histamine.
Histamine causes vasodilation,and so this is where many people
will break out into hives orthey'll have the like splotchy
(26:55):
red skin.
A lot of times they have thesesymptoms come on after they eat
meals, and so there's certainkind of triggers for this as
well is that more of the immunesystem component?
Speaker 2 (27:08):
I mean, you think of mast cell activation.
They're usually, yeah, inresponse to some immune function
right.
Speaker 1 (27:16):
Essentially their mast cells are overactive and so
they have just this increasedresponse that is causing a lot
of these symptoms.
A lot of these people will haveshortness of breath, they'll
have increased headaches as well, excessive, excessive urination
, and a lot of them have a lotof nausea and even vomiting.
And so, again, this can bemeasured.
(27:38):
You can actually measure methylhistamine levels in the urine.
The other reason why on likewhy, catching the mast cell
activation component of it, isthat most people with POTS are
actually given beta blockers totry to lower their heart rate.
That's like the most commonlyprescribed medication when
(27:59):
somebody has posturalorthostatic tachycardia, but
when they have mast cellactivation, beta blockers are
actually kind of cautionedagainst.
So this is another reason whyunderstanding the different kind
of subtypes of POTS is soimportant is because they can
actually impact treatmentguidelines.
Speaker 2 (28:20):
Absolutely, and would you approach them with
treatment differently?
Speaker 1 (28:24):
From more of a holistic perspective, I pay a
lot of attention to liverfunction.
When people have mast cellactivation syndrome, there's
oftentimes a liver componentthat needs to be.
Of a holistic perspective, Ipay a lot of attention to liver
function.
When people have mast cellactivation syndrome, there's
oftentimes a liver componentthat needs to be supported and
there's herbal formulas thatwork really, really well to help
prevent the production ofhistamine and clear out excess
(28:44):
histamine.
So I think in this particularcase there's often a lot of gut
issues and kind of gut liverdysfunction that needs to be
addressed.
Speaker 2 (28:55):
And someone with a hypovolemic POTS would you
indicate as an approach?
Speaker 1 (29:01):
That is where you also need to well.
So I guess with all of the POTSpresentations, you also want to
pay attention to the concept ofwhere am I in space?
You have to ask that questionof okay, why am I having
symptoms when I go from layingdown to standing?
And there's different systemsin the like.
There's different systems.
(29:22):
We have redundancies within ournervous system, but one of the
systems is this barrelreceptorceptor system.
So we have these receptors inthe carotid arch and in the neck
, in the arteries in the neck,and so they're supposed to pick
up the fact that when you go tostand up, we need to have a
(29:43):
slight increase in bloodpressure so that, instead of
gravity taking our blood andbringing it down towards the
ground that our system is over,overcoming that by having blood
flow, enough of it get to thebrain so that we don't pass out
right.
And so part of that is this ideaof these baroreceptors saying
(30:04):
okay, we've just changed, youknow, we've just changed
position, and so now we need torespond by increasing blood
pressure a little position.
And so now we need to respondby increasing blood pressure a
little bit.
And so the baroreceptors are,you know, picking up on changes
within the system, changeswithin the pressure, and then
signaling to the brainstem, andthen the brainstem is responding
and then signaling to the heart.
And so this is this very finelytuned orchestra that, if it's
(30:27):
not happening appropriately andpeople lose what we call
baroreceptor sensitivity, thatthat can be part of the problem.
Speaker 2 (30:35):
Can we just take a second to like just to
appreciate how incredible ourbodies are, that they can like
adjust to gravity, how our bloodis flowing, so that we feel
normal and we are so quick wedon't even know what's happening
because our systems, whenthey're healthy, just do this so
(30:56):
naturally.
And then these littledisruptions, whether it's in the
liver or in the brainstem or ifit's in our adrenals, like they
can really affect thesensitivities of the receptors
or the abilities for these loopsof information to respond
appropriately to the changes inour position and gravity.
(31:17):
I mean, that's just.
I think that's pretty cool.
Speaker 1 (31:22):
I know I mean when things are working well.
We don't appreciate it right,we don't really appreciate what
our system is supposed to dountil it stops doing it.
Speaker 2 (31:30):
And then it doesn't do it right and we're like whoa,
like oh my goodness, this isnuts.
It's so disorienting.
And then we have to have theability, as providers, to tease
out which part of this reallyintricate system is.
The disruption happening inthis miscalibration of the
system that might be driving allthese other symptoms can be
(31:52):
coming from cervicalproprioception.
It can be coming from adrenalfunction.
It can be coming from liverfunction.
It can be coming from a headinjury or autonomic function.
It can be like so manydifferent things, hormonal
changes, like there's so manydifferent things that we have to
be able to see, which is why Ithink it's really helpful to
have a specialist whounderstands these things very
(32:16):
cohesively and is teasing outmaybe these subtypes or what the
symptoms are that are reallypresenting.
Speaker 1 (32:25):
Yeah, and the other thing.
Well, I guess a couple ofthings that jump into my mind.
One I just want to go back realquick in the topic of the
baroreceptors, in that you canactually test the baroreceptor
sensitivity by doing a Valsalvamaneuver and so by bearing down,
you're changing yourinterthoracic pressure, which
increases blood pressure.
(32:46):
And so by doing a Valsalvamaneuver and looking at blood
pressure and heart rateresponses, you know a clinician
can actually see what the bodyis doing in response to this
increased pressure and then,when you let it off, what is the
reaction to that.
And so by looking at thesechanges in blood pressure and
heart rate, when somebody isdoing a Valsalva maneuver and
(33:08):
then releases, that gives ussome data to say are the
baroreceptors interpreting thatinformation correctly?
So I just wanted to throw outthat there are different ways to
actually test for baroreceptorsensitivity, which is great.
Even if we don't have a 12-leadEKG, or even if we don't have a
12-lead EKG, or even if wedon't have continuous blood
(33:29):
pressure cups monitoring, we canstill collect data on a tilt
table test and on a baroreceptorsensitivity test and on a
five-minute sustained hand griptest and pupillary light
reflexes.
So at the bedside, functionally.
We can still assess theautonomic nervous system to,
like I said earlier, observewhat's happening with the
(33:53):
patient's autonomic system andthen start to look at where is
this dysfunction, where areother areas of dysfunction that
might be contributing to theseerrors in the system, and how do
we restore more integrity tothe system?
Restore more integrity to thesystem, and so part of that is
doing additional troubleshooting.
For example, I have seen a lotof patients that have mold
(34:21):
exposure, have a lot oftachycardia and they have a lot
of the kind of pounding heartsensations as part of like a
mold exposure typesymptomatology.
So sometimes you've got to goreally deep and say are there,
you know, environmental issueshere?
Is there like Lyme disease aspart of this diagnosis?
Is there a virus?
Is there an autoimmunecomponent?
So there's a lot oftroubleshooting that has to
(34:41):
happen and then also payingattention to, like, the hormones
like we talked about.
So there's there's just a lotof diagnostics that have to go
into it to really try to figureout, you know, the big picture
of everything and not justlooking at POTS as, oh, this is
a situation of a rapid heartrate, like there's so much more
to it than just that onecomponent.
(35:04):
So so that's kind of bigpicture, and I think that that's
where a lot of people get lostin the system is when they just
go down the route of being givenmedications to artificially
control the autonomic nervoussystem.
So, like one of my patients thatwas diagnosed with POTS, if she
was laying on the floor herheart rate would go down to 50.
(35:27):
When she stood up, her heartrate would go down to 50.
When she stood up, her heartrate would jump up to 150.
So she was so symptomatic.
I remember when we did ourinitial 15-minute kind of
consultation over telemedicine,just so she could find out more
about the work that I do, hervideo popped up on the
telemedicine and she wasliterally just like spread eagle
(35:49):
on the floor, like she's.
Like I can't even sit up forthis conversation.
Yeah, and so you know.
If you can imagine your heartrate going, you know changing by
a hundred beats a minute whenyou go from laying down to
standing.
That's crazy, I mean, that'syeah, and so you know.
She was given one medication totry to lower her heart rate but
(36:11):
she was given anothermedication to increase her blood
pressure.
But if you're taking amedication that lowers your
heart rate, but your heart rateis 50 when you're laying down.
Well, it's like no wonder shefelt worse on that medication.
Nervous system is meant torespond in the moment and when
(36:33):
we artificially, you know, tryto control it with
pharmaceuticals.
It doesn't account for asituation where, yes, her heart
rate might be 150 when she'sstanding, but if she's on a
heart rate lowering medicationand then she goes to lay down
and then her heart rates now in50.
You know, it's just you'retaking away her body's own
ability to try to figure thatout.
Speaker 2 (36:51):
For sure, and that's an important part of
rehabilitation.
Recovery is like how do weactually help the system respond
better and like we get its ownintegrity?
There's so many nuances in careand difficulties and challenges
for patients who might getmisdiagnosed or miscategorized,
or or the providers might notfully understand what's going on
(37:12):
, so put them on the wrongmedication.
I wonder what kind of hope wecan give patients who are
struggling with these things tofeel like.
Okay, if I do want to findsomeone for help in assessing
this, what do I look for andwhat kind of provider do I need?
Speaker 1 (37:27):
I think, having a provider who's willing to
collect a lot of data and do alot of these functional tests
and then to also look at the bigpicture of you know, is there a
viral infection?
Is there an autoimmune diseasethat hasn't been discovered yet?
Is there a mold exposure?
(37:48):
Is there a concussion?
Is there long COVID?
Is there mitochondrialdysfunction?
Is there a baroreceptorsensitivity issue?
Is there a vestibular disorderthat's driving this?
They got to find a practitionerwho understands all these
different potential factors andis willing to look at all of
that and start to rule certainthings out or rule certain
(38:11):
things in and then continue togo down these rabbit holes of
you know, doing theinvestigative lab work and the
diagnostics and the testing andthen also, at the end of the day
, you know we keep coming backto the studies that show that
exercise is one of the best waysof helping the autonomic
(38:32):
nervous system.
Yes, and you have to figure outhow to do that in a way that is
obviously safe for the patient,especially if they're dizzy and
nauseous, and you knowunderstanding that it's not okay
.
Let's just immediately try toget you on a treadmill and
walking 15 minutes a day.
It's like.
No, like some people that's notpossible, right.
Speaker 2 (38:52):
Working with specialized providers who
understand how to taper yourexercise dose and your exercise
engagement to help your systemis huge.
That's really important yeah.
Speaker 1 (39:05):
And I think that's where, like, a recumbent bike
can be really helpful, becausepeople can actually be sitting
down and still getting someblood pumping and doing exercise
, but they're seated, whereas Ithink in a lot of cases
treadmills are not necessarilythe immediate starting point.
Yeah, depending on again justhow symptomatic they are.
Speaker 2 (39:29):
But I think we understand that everyone has to
have, like their ownprescription based on your
symptoms and other things, andyour book does a really nice job
of helping people understandthat.
And now our audience has someresources and maybe some better
understanding of like why and inwhat ways these complexities
can make a really big differencein how you approach treatment
(39:51):
and the outcomes you would see.
Speaker 1 (39:53):
Yeah, I mean, a lot of people will ask me.
They're like do you think Ishould go and get tested, or do
you think I should go see acardiologist?
And my answer is always yes,Like, go get as much testing and
as much diagnostic workup asyou possibly can, and then you
get to get the information, theright diagnosis, and then figure
out how to move forward fromthere.
(40:14):
So it's, you know, I'm not I'mnever against going to see
specialists and going to do moretesting.
You know, I'm always highlyrecommending that people do
those things.
And then, like I said, they getto get the information, get the
right diagnosis, and thenfigure out strategies for how do
I want to approach this fromhere.
Speaker 2 (40:33):
Yeah, and that's the thing is like sometimes, and I'm
all for the testing, butthere's a frustration like OK,
once you get the test.
Speaker 1 (40:41):
Oftentimes you just say OK, like this is what you
have and that's because a lot ofdoctors will actually tell
their patients there's no curefor this.
Speaker 2 (41:01):
Because a lot of doctors will actually tell their
patients there's no cure forthis, and I think that what they
this with the public and getthis information on this really
complex condition out there tostart to hopefully make a good
impact.
Speaker 1 (41:18):
Well, thank you so much.
I mean this is a reallydifficult and complex topic and
even for the people whounderstand it really well, it
doesn't always mean thatrecovery is necessarily quick,
fast or easy, and so I thinkit's also one of those things
where you know, helping peopleto understand expectations and
(41:38):
that they a lot of times it'sbaby steps and you know really
just trying to make sure thatwe're heading in the right
direction.
So it requires a lot ofpatience on the part of both the
patient and the provider toreally work through this and to
come up with treatment plansthat are helpful.
And so, again, it's not asimple topic and it's not a
(42:00):
simple treatment plan, and Ithink that part of the
difficulty in writing thischapter in my book is that I
couldn't just give people youknow, here is the treatment,
because the truth is iseverybody needs something
different.
But I hope that at least thisgives people some things to
think about and maybe someavenues to explore.
So thanks for diving into thiswith me.
(42:23):
Yes, for our listeners.
If there's any topics you'dlike us to cover, please send us
an email at lifeafterimpact atgmailcom, or you can click the
send us a text link in the shownotes.
My new book, the ConcussionBreakthrough Discover the
Missing Pieces to Recovery, isalso now available on Amazon and
(42:45):
you can link to that throughthe show notes or through our
website atlifeafterimpactatgmailcom.
Thanks for listening.
We'll see you next time.
Medical disclaimer.
This video or podcast is forgeneral informational purposes
only and does not constitute thepractice of medicine or other
(43:08):
professional healthcare services, including the giving of
medical advice.
No doctor-patient relationshipis formed.
The use of this information andmaterials included is at the
user's own risk.
The content of this video orpodcast is not intended to be a
substitute for medical advice,diagnosis or treatment, and
(43:31):
consumers of this informationshould seek the advice of a
medical professional for any andall health-related issues.
A link to our full medicaldisclaimer is available in the
notes.
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If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
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The latest news in 4 minutes updated every hour, every day.
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.