Diagnosis

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Episode Transcript

(00:00):
Today we're going to talk abouthow I got to my POTS diagnosis
from my first symptoms back inmiddle school all the way up
until I got diagnosed in 2023,which was when I was 19 years
old.
This is the Quiet Mom POTSTalks.
I'm Robyn.
I'm Zoe.
And we are going to talk aboutPOTS.

(00:23):
I'm the mom.
I'm the daughter, the POTSie.
And we came to this diagnosisafter a long road of trying to
figure out what was wrong withyou.
I think that as a mom, I'vealways had a little bit of an
intuitive sense that whensomething's going on with my
kids, I know.

(00:45):
And so if you're a mom, this ismy Public service announcement
telling you to listen to yourgut that don't and don't stop
until you get answers but thefirst symptom that you had that
we Noticed that we startedtaking Note of was you had
shakiness and we thought that Ithought I was worried you had

(01:08):
diabetes But I knew that therewas something that we needed to
pay attention to what is goingon and Why is this shouldn't be
happening and you were like,this is always like this I'm
always I didn't even reallynotice it at first like until
you pointed it out one morningwhile we were like sitting
eating breakfast that I wasshaking, I had never really

(01:29):
noticed that I was doing that.
I never paid any attention toit.
Never thought anything of it.
It was just normal for me.
So that was the beginning and westarted, I don't remember if we
went to like yad had concussionsand stuff, but we started paying
attention.
We went to the doctors, did sometests, nothing came out.
We saw the neurologist.

(01:51):
Nothing came out of that.
They originally thought I wasanemic because my iron levels
were, like, a little bit low.
So they put me on to ironmedication, iron supplements,
and that Didn't do anything theshakiness didn't stop I don't
even really know if it likeincreased my iron levels at all
or if they even really checkedthat but it didn't help The

(02:12):
shaking at all.
I don't I do remember they didrecheck it But there was at one
point we went back in becauseyou also had dizziness.
And your doctor was like haveyou been taking the iron
medicine?
And you said, no.
So she said if you're not takingit and your symptoms haven't
changed, it probably didn'tmatter.
It probably wasn't anemia.

(02:33):
So they did recheck it.
And I don't think you were stillanemic or maybe you were, cause
I know that you have had somelow iron.
Low iron, but they decidedthat's not what it was.
So we, did we go to theneurologist first?
So after that, we went to theneurologist and he had said

(02:54):
that, which I never liked thatneurologist from the very first
time we saw him.
I was not a fan of his, I couldtell that you weren't.
And I remember him saying, Ithink you might have anxiety.
And you're like, I'm not, Idon't have anxiety.
I'm not anxious about anything.
And he said your body's tellingyou are telling you are and
there was a lot of reasons foryou to be anxious There's a lot

(03:17):
of reasons for you to be anxiousThere was a lot of stress in our
life and there was some randomthings that were going on And
I'm like we've got some stressat home But I never felt
anxious.
Like I never felt uneasy aboutanything.
I was never stressed that muchabout things.

(03:38):
Like I was a dancer.
I was very serious about school.
It wasn't always the easiestlife at home, but.
There weren't any major reasonsfor me to be like having these
crazy symptoms physically forthem to attribute it to anxiety.
And then it was like, Iremembered you had your, I think

(04:01):
this was your second concussion.
And then You had, not only hadyou had your second concussion,
you had taken an AP class thatyou had to study for, but during
that AP studying, you had yourconcussion, so it was like
between the concussion, then youwere studying for your AP class,

(04:21):
you were doing dance.
And this is already two yearsafter the initial shakiness
began.
Yeah.
So you were doing dance, andthen dance had.
Finished like you got done withdance because nationals that
happened and that was over soyou had gone from being Super
busy with dance super crazystudying for your AP tests and

(04:42):
things like that and concussedAnd then you were concussed and
dealing with a concussion andyou were like, I don't have any
I'm not anxious and I'm like Ican see why you would be anxious
Which obviously is probably whatthe doctor saw too.
Like you have all of thesethings.
when things in your life changedrastically, you end a sports
season, dance was over the, youwould test it and been planning

(05:06):
for this test.
So that happened, which afterFlorida.
Yeah.
And after the first concussion,I was like completely out of
school for two or three weeks.
I couldn't leave my room.
I had this.
Stay completely in the dark.
I was barely able to do much ofanything just because of how bad
my headaches were.
I was extremely sensitive tolight and sound and everything

(05:29):
else.
So it was just, it was a bigchange for me, but at that point
I had recognized the anxiety,recognized why I could be
anxious about things, but Istill, I knew that there was
something more going on becauseyes, I felt anxious.
And yes, I didn't feel supercomfortable with my life because

(05:51):
there was so much going on andso many things that I was
anxious about, but I knew thatit wasn't just that because at
that point I had been dealingwith the anxiety diagnosis for
two years and I had learned howto manage it, what I needed to
do when I'm in anxious momentsor having anxiety attacks or
anything like that.
And I think that when you're asSo that kind of the anxiety

(06:17):
diagnosis made sense.
Yeah, but once we got to thatsecond concussion I started
having chest pains, too I don'tknow if it was like directly
after the second concussion orwhen that started came up.
Yeah So you had the concussionthe second concussion we dealt
with that But I was stillcomfortable with the anxiety
diagnosis because I'm like, yeahIt's probably is and now she has

(06:41):
an anxiety diagnosis Aconcussion on top.
All of those things happened andyou had a second concussion, but
then you started having chestpains.
Yeah.
And then that's when you startedlike I was getting phone calls
from you like we had gone to theemergency room a couple times
for the chest pains.
Added on top of all of yourother symptoms and the
headaches, the dizziness, theshakiness, and then I was like,

(07:04):
Okay we're gonna go to theemergency room.
They're gonna tell us thatnothing is wrong because she's
not having a heart attack.
Just a teenage girl withanxiety.
Yeah, so what's gonna happen?
And I think that as thosesymptoms kept getting worse and
progressing we just like we keptgoing with the anxiety
diagnosis, but still, I think inthe back of your head, probably

(07:26):
in the back of my head, too.
It was like there's somethingthere's got to be something my
like, she's not yes, maybe it isanxiety.
And by that time, they had putme on anxiety medication to
right.
It's not like I was doingnothing about this anxiety that
I was told that I had.
Initially, when I just had theshakiness, they had put me on a

(07:47):
beta blocker at a very lowdosage to try and just control
the shakiness, which it did helpfor a short period of time.
But then, it was like, Itstarted getting worse again, and
especially after that secondconcussion, and then the chest
pain started, the dizziness, thelightheadedness.
I was a lot of the time standingup and then stopping for a

(08:10):
second before I went and didwhatever it is that I was doing
because I would get lightheaded.
And to me, I was like, oh, thatmight just be some of the anemia
sitting there or whatever.
One of the other things theytold me that I had, however many
years ago, but going to thecardiologist, I think, was what
really helped because theystarted doing more tests and

(08:31):
going to the ER helped becausethey did more tests and they did
so many EKGs.
I swear I've probably had ahundred EKGs in my lifetime.
We found out that you weren'tdying.
Yeah.
So that was the good part.
But it was like when we would gosometimes, I don't know if you
felt this, but I'm sure you did,but.
It was disappointing.
You feel like.
Not that you're disappointedthat you don't have okay, you're

(08:54):
not dying, darn.
Ut you have that thing likethere's something going on and
I'm nobody's figuring it out.
Yeah.
And I remember one day justsitting there and it just was so
so stressful for you.
And it was so much time for usthat we had spent in an
emergency room.
And it's not like I want to goand sit at the ER all day.

(09:17):
It's not like I want to go andget all these tests done and
feel like a literal lab rat.
I just wanted to know what waswrong with me.
I just wanted somebody to tellme, like, why this was all
happening.
Because I knew That it wasn't myanxiety because I had been
dealing with my anxiety and Iknew what that felt like.
And these symptoms my anxiety.

(09:41):
And I think that when you go,like we had gone, so we had done
the emergency room visits.
Then there was a couple otherconcussions on top of it.
You had I think it was aSuperbowl Sunday or something.
You guys were at the gym and yougot a ball hit in your head.
Then that was five.
That was number five.
You and Theron were walking downthe hall and ran into each other

(10:04):
in the dark, and that was one.
And then the last one that yougot, you had gone up to college,
and you bumped your head gettingout from under your bed.
Yeah, I was literally justpulling my phone charger out
from under my bed to come homefor the weekend.
Yeah.
Which, good thing I was cominghome because I ended up having
to go to the ER the next daybecause I was majorly concussed.

(10:26):
So between every concussion,especially that last one, your
concussion symptoms got worse.
The fatigue, like you had, notonly did you have the normal
things and the symptoms that youhad, but you also had extra
fatigue, confusion, like focusissues, my memory lost after,
Yeah.
Yeah.
Yeah.
After the last two concussions Igot, my memory loss was terrible

(10:47):
my short term memory wasn'tgood, I stopped remembering
things from when I was little,and to preface that, when I was
younger, I had an amazingmemory.
Everyone would be like, Hey Zoe,remind me to do this.
Zoe, remember this?
Zoe, do this.
And I would remember thosethings, and I wouldn't need any
reminder on my phone or anotepad to keep track of
everything, and now I do.

(11:09):
I remember it would be like, HeyZoe, do you remember seeing the,
Yep, I would find all your stufffor you.
I have ADD, which I've talkedabout before, and I'm, I have
short term memory issues and Iam forgetful and I lose things a
lot.
But Zoe would always know hey,do you remember where we were
when I used that?
Where did I put it?
Oh, it's in the Where Whateverroom on the second shelf on the

(11:32):
right, like she had in this spotof the counter.
Yeah And so after all of theseconcussions at a certain time
you'd lost those which maybethose are concussion things But
maybe they're pots things to youprobably a little bit.
So fast forward to about a yearago You were Yet again, going
into the emergency room andprobably like at least once a

(11:54):
month, once every other month,and it was getting to the point
where it was like, Oh my gosh,it was feeling excessive.
There's one time specifically, Iremember you took me to St.
Anthony's.
And I remember they were doingall these tests.
They did blood work, urinetests, EKG.
I think they even did anultrasound while we were there
that time of my heart.

(12:14):
And Everything came backcompletely normal and I remember
walking out of there and wehadn't even made it like Out of
the entrance to the hospital, wewere just about to be walking
into the parking lot and I juststarted bawling because I was
like, I just want to know what'swrong with me.
I know that it's not my anxiety,like there is something wrong

(12:35):
and no one is paying attentionto it.
Yeah, and I remember that daytoo because it was just, and as
a parent, like it's bad enoughwhen you have kids who have
issues, whether it's injuries orillness or anxiety.
Or something that you just don'tknow what it is, which I was

(12:56):
still pretty sure that youprobably had anxiety and I was
still pretty sure that theywere, but I was also pretty sure
that there's got she knows herbody.
Like I remember when I was yourage, I was pretty sure I knew my
body and I didn't, I wasn'tsuper confident in it.
at that time, but I rememberthinking, I have something going

(13:18):
on with me and nobody's going totell me that it's nothing until
I know for sure that it'snothing.
I needed to have that extra dothat test.
Yes, I want you, I, yes, give mea mammogram when I'm 22 because
I have a lump in my breast andI'm going to die.
I freaked out that I'm going todie.

(13:38):
And that was, I think it wasafter that time that we went to
the ER and they did all thosetests.
That my cardiologist finally waslike, Okay, here's another heart
monitor.
Because I had already done one.
And for some reason, I didn'tfinish the full 30 days of it or
whatever.
You were just tired of wearingit.
This is dumb.
It's not.
And the first week, or the firstcouple, Times that we, whatever,

(14:02):
they weren't finding anything.
Yeah.
Cause we had done like a 24 hourmonitor and then a week long
monitor.
And then I was on like to the 30day monitor.
And that was probably likefreshmen, maybe sophomore year,
right before COVID hit.
And so they didn't have asadvanced monitors as they do for

(14:22):
adults for me as a Aft trip tothe ER when I just walked out
crying, I went back to thecardiologist.
They were like, okay, we'regonna do an event monitor.
Every time you feel something,every time you feel your chest
hurt, or your heartpalpitations, or anything, push
the button and we'll record whathappens.

(14:42):
So that was probably Almostexactly a year ago.
And they also did a stress testwhere I was on a treadmill for
an extended period of time and Ifelt like I was literally dying
the whole time.
I've had one of those andthey're brutal and I don't have
POTS or SVT like you do.
And I remember while I wasgetting my stress test done, the

(15:04):
nurse was like, your bloodpressure is doing some really
weird things.
It's going in complete oppositedirections.
Which, if you know anythingabout blood pressure, it is
supposed to your systolic anddystolic blood pressures are
supposed to go in sync with eachother.
If one raises, the other onewill raise.
If one lowers, the other onewill lower.
Mine were doing the oppositedirection.

(15:25):
My dystolic would raise and mysystolic would lower.
That was not normal.
The nurse had never seen thatbefore, so that was
automatically something that Iwas like, Oh, great.
That's a red flag.
That's, at least there'ssomething that they can see
that's different or not normal.
But after we got all of thattesting done, when I went in for

(15:45):
the follow up after the heartmonitor, they were like, you had
some super ventriculartachycardia moments.
the SVT that we were saying.
So that is just literally anabnormally high heart rate, a
randomly high heart rate.
And that was before I got thePOTS diagnosis.
After that, I continued to havereally bad symptoms, continued

(16:07):
to get worse fatigue wise, chestpain, palpitations, weakness,
shakiness, everything else.
So I ended up in the ER again.
And After that trip to the ER, Iwent straight to my primary
doctor because I was luckyenough that they had an opening
literally right after I wasgoing to be getting back into
town.

(16:28):
And that was when I got the POTSdiagnosis, because they had
finally done enough testing andeverything had come back normal
for them to rule all of themajor conditions out and say,
Here's this chronic illness, youhave it.
Do some research on it, figureout what you relate with, if you
feel comfortable with thediagnosis, if you think this is

(16:49):
what's going on, and I did, andI related to basically
everything that I found.
And that's how we got here tohave this podcast, but so
basically the thing with POTSis, and this is similar to a lot
of other chronic illnesses, isthat there's not a test.

(17:12):
To test positive or negative forPOTS.
Yeah.
There is like the tilt tabletest, which my doctor, before
giving me the diagnosis, mydoctor had done like a.
Semi tilt table test becausethey don't have a tilt table at
their office but they had had melay down for a certain amount of
time and then stand up and Testmy blood pressure and heart rate

(17:33):
and see how it changed and theydid notice the like drastic
changes in that so Once I wentto the ER again, made sure
everything was normal, I wasn'tdying, whatever else, then they
felt comfortable enough to giveme that POTS diagnosis.
And so it's it's a combinationof elimination.

(17:54):
It's a what, in the medicalworld, it's what's called a
differential diagnosis.
Yeah.
Which is basically they rule outeverything else.
And then they're like, oh,here's this one thing, and
there's this one little testthat we can do that if you have
it, it does this.
But some people do that anyways,which is why they don't just go
straight to doing that.
But POTS is a rare condition.

(18:16):
It's It's common, but not POTSdiagnosis is rare.
That's what I've realized.
There are a lot of people whohave Almost 100 percent of the
POTS symptoms, they just don'thave a diagnosis because, like
in my case, it took me six yearsto get a diagnosis.
A lot of people, it can takemonths to years.
And it's getting more common nowbecause a lot of people will end

(18:40):
up with long COVID, whichEssentially causes POTS or
because of a illness they getPOTS, COVID being the illness.
My POTS just happen to come fromthe concussions because it can
be caused from physical trauma,illnesses like COVID and A ton
of other things really, butthose are like the two big ones

(19:01):
that stood out to me Justbecause that is what was
relevant in my life at the timemy concussions and covid Which
you had covid but you never hadcovid right when I had covid I
was completely fine I was justmiserable because I couldn't do
anything Stuck in the room.
Yeah, I think that so When itcomes to what we could have done

(19:26):
what we could have donedifferently or what like people
can do in their own journey,like one of the biggest things
that we've talked about a lot isbeing your own self advocate.
Yeah, really?
We were not good at that atfirst.
No.
And we, and I I hate to say thatand admit to that as a person
who feels like I'm a really goodself advocate and I take charge

(19:48):
of my own health and I takecharge of my own kids.
But it's hard to do that with adoctor especially when you're
talking about a child I wasstill a child, and I didn't
really know what was going on.
I was completely clueless in thesituation.
I just knew that I didn't feelgood, and I didn't feel right.
I went to the doctor, and Ilistened to what the doctor

(20:10):
said, because that's whateveryone always is telling me
listen to the doctors, do whatthe doctor says.
I was, and I was like, And danceas a kid, so I was always, not
always, but I was hurting myselfsometimes.
I would go to the doctor, they'dsay, ice, rest, this, whatever,
go to physical therapy, andthat's what I would do.
So I'd listen to my doctor.
Yeah, tough it out.
And I think that as a parent,Especially a parent of a teen

(20:34):
and during, now remember this isthis was in and out of COVID
time too.
So it was a little bit beforeCOVID, your diagnosis was after
COVID and your second concussionwas after COVID.
It was during COVID.
It was, but it was still, it waslike.
It was like right after the.
Not isolation, but right after alot of the restrictions had

(20:56):
finally lifted, like the maskmandate had just lifted and
things like that.
So it was, there was just, therewas a lot going on and there was
a lot going on in thattimeframe.
So there was a lot of reasonsfor us to think that it was,
Could have been anxiety, right?
And it was just like, okay, sheknew he was moving up to high
school.

(21:17):
Yes.
Dealing with concussion.
And I remember going okay, shejust needs to learn how to be
like, you need to learn how tobe resilient.
Like when you are a, a daughterof, A mom who's their own, like
a stay at home mom, a businessowner, a dad who's really busy
doing things.
People we expect a lot from ourkids because we wanted you to be

(21:39):
independent, but not tooindependent.
And I know there were definitelya few times where I would call
you from school or text you fromschool and be like, I don't feel
good, things are going badagain, and you'd be like can't
you just tough it out?
Can't you just deal with it?
Like I, I remember talking toone of my clients who's an EMT

(22:00):
and he's she's probably notdying.
That happens a lot.
This happens with people whohave anxiety a lot.
And I remember I do remembersaying to you sometimes Zoe,
like you have anxiety.
Maybe you're going to need tolearn to just deal with it.
Just tough it out, like thepeople have to just do that.
And so I remember saying thingslike that and really believing

(22:22):
that you felt what you felt.
And I really wanted you to learnto be an adult about it, to be
resilient.
But also I.
Also, didn't want you to justpush aside your feelings either,
like as a, like a person whoreally cares about learning your

(22:43):
body and how to treat your bodyand listening to your body.
And something that's probablyimportant to mention about the
anxiety aspect of it is once wegot my anxiety diagnosis, that
was in August, I started seeinga counselor in January.
So yes, it took us quite a fewmonths to get me into a
counselor.
But it was a few months later,right?

(23:05):
And this had been years that I'dbeen dealing with this anxiety
and Yes, I had gotten better atdealing with it.
I had significantly decreased mypanic attacks and significantly,
not significantly, but I hadimproved my symptoms and learned
how to manage when I'm gettinganxious and recognize when I was
getting anxious and that stillwasn't taking care of the

(23:26):
symptoms.
I was still getting thedizziness, the chest pain,
everything else.
The shaking, the physicalsymptoms that you were feeling.
And as much as sometimes justsometimes people can have
anxiety that manifestsphysically.
Like I say this to my clientswhen I was doing massage all the
time, like sometimes the thingswe ignore our feelings and our

(23:50):
thoughts and what's going oninside of our body.
And sometimes even inside of ourhead, so much that it.
makes you like, it's okay,you're not paying attention to
the fact that I feel like crapand you're, I'm not okay.
I'm going to give you somephysical things to focus on so
that you can really payattention to that.
So there was part of that in mybrain was like, okay you've got

(24:12):
anxiety.
She's got to learn how tobreathe through it.
She's got to learn how she needsto learn some coping skills.
We even did biofeedback and allthese different things to try to
teach you coping skills to dealwith your anxiety.
When in, in the big picture,what it really was is this other
illness or chronic disease thatthere wasn't really you can't

(24:36):
just breathe it away.
Like you can like, yes.
And you can breathe it away, butbreathing it away.
Isn't going to make it go away.
It's just going to make you beable to deal with it.
Yes.
So when you are trying, if youare in his position that we were
in right now really focusing inon some things like get your

(24:58):
blood sugars tested, make surethat you do the heart things and
see the cardiologist and followthe trail of all the specialists
because sometimes that's what ittakes to find and a lot of those
specialists are like, nope, notme, not my, nope, not my
specialty.
Nope, not me.
And until you get to that one,And honestly, I think that pots,

(25:22):
maybe it's just cause we aredealing with pots now, but I
feel like even as things arechanging in the world, like Long
COVID is being investigated.
POTS is starting to be seen alittle bit more maybe.
And that might be because younow have a diagnosis and that's
why I think that.
It's like you buy a red car andall like everybody, there's so

(25:43):
many people with red cars now,but so that might be the case of
what's happening here, but I doalso believe that people are
starting to realize that thereare other things other than
COVID and anxiety.
And.
other than other medical things,so it's really important to do
your research and do the testingand the testing.

(26:04):
It's hard to sit there and to belike, okay, I'll wear a heart
monitor, okay, I'll do a stresstest, okay, I'll do this blood
work, okay, I'll do this, okay,I'll try this medication, okay,
I'll switch medications, I'lltry a different dosage, I'll do
this, I'll do that.
It's really hard when youseriously feel like there's
something wrong with you to sitthere and just accept all of the

(26:28):
testing and the questions andthe procedural things that you
have to go through to get there.
But it's also important whileyou're doing that to make sure
you're being informative to yourdoctors.
I know there were a lot of timesthat we probably didn't say as
much to a specific doctor as weshould have because like when we
would go to the neurologist wewould think, oh it's for my

(26:49):
head, it's for my headaches,it's for that stuff.
and not acknowledge all of theother symptoms I was going
through.
And if we did do that if wetalked to the neurologist about
my chest pain or my heartpalpitations or everything else,
or we talked to the cardiologistabout my headaches or the
shakiness or everything that wasgoing on neurologically, maybe

(27:10):
that would have helped get to adiagnosis sooner.
But, Really just say everything.
Make sure you are being superover informative about what
you're going through and whatyour body is dealing with and
how you're feeling, because themore information that you can
give them, as much as you mightfeel like you're being annoying,

(27:30):
the better they're going to beable to understand what you're
going through.
And everything is connected.
A good doctor.
Yep.
A good doctor will know that andthey will take the time to
listen to that.
And that's really the hardestpart right now in our day and
age is that there's so many ofthe specialists that are so

(27:52):
focused on their specialty.
And sometimes that's why I feellike that the reason why we got
her diagnosis from a primarydoctor is because sometimes the
primary doctors or the moregeneral practitioner doctors,
they're looking for the bigger,the kind of the bigger picture.

(28:12):
In like everything in your bodyis connected, like all of the
symptoms have some sort of playon each other.
And I've had doctors tell me formyself and for my kids, Oh,
those two things aren't related.
And I'll be like, I think thatthey are like personally, like I
was a massage therapist.
And so I knew enough aboutmedical stuff to know that a

(28:35):
little bit about medical stuffand know the names of things and
not really know I came from it,from a different point of view
than a doctor.
I'm not sitting there listeningto you to tell me what's going
on, thinking about the medicinesthat I can treat you with to fix
that problem or that symptom.
I'm coming from it from a pointof view of what's causing this
and that's how I've alwaystreated myself.

(28:57):
like I can deal with this painor this symptom if I know what's
causing it and then you know,we're doing something to fix
that.
Yes, whether it's a diet changeor.
Positional change or whatever itis.
I want to fix the problem, notthe symptom.
And I think that's reallyimportant when you're going to

(29:20):
looking for a diagnosis is totell your doctors your
intention, right?
Some people go to the doctorsjust to find a magic pill.
pill that will fix their problemand they don't care what's
causing it.
If you can give me necessarilyanything wrong with that's what
you want.
Like I remember talking to afriend of mine and she takes, or

(29:41):
she used to take Tylenol PMevery single night.
Cause she had pain.
I don't even remember what herpain was, but I was like, don't
you want to figure out what'scausing that and fix that?
She's Nope, I'm totally finedrinking my red wine and
sloshing down my Tylenol everynight.
And I'm like, I don't know.
I would figure out what'scausing the headache and not
have a headache every night andnot have to take the Tylenol and

(30:03):
wine, but that's just me, butsome people, they don't want
their life interrupted.
They don't want to think abouttaking care of themselves or
what it takes to be healthier ordo those things on.
They want to keep moving on,which is why our pharmaceutical
industry is so so.
Overpopulated.
Yes, and so and makes so muchmoney because honestly a lot of
people are looking for that YeahAnd but it does take that

(30:25):
persistence to really like youneed to know you need to know
what your goals are Righttreatment.
Like why are you and I rememberI said this to you a couple
times like what's the goal in?
Going to the emergency room andI would always say to figure out
what's wrong with me, right?
and it's like I You know, sothere was some, there was a
couple of times that we talkedyou out of going to the, or

(30:49):
maybe talk to each other out ofgoing to the emergency room.
It's what's our goal?
Okay.
What are the goal in anemergency room is to make sure
you're not dying.
Like they're there to make surethat you don't die.
And so once they realize thatyou're not having a heart
attack, they're done with you.
And not that they don't want tobe done with you, but they're
done with you.
And there were some doctors.
figure out that we're like, okaymaybe if you go, that's when we

(31:12):
got a lot of referrals to thecardiologist and to different
neurologists and stuff likethese people might be able to
help you and but it's reallyimportant that you know why
you're going like, what am Igetting?
Get out of it.
One thing too, about getting thereferrals and going to the
specialist is finding someonewho has that same viewpoint as
you is finding what's wrong withyou.

(31:33):
Treating what's wrong with yourather than medicating for
symptoms because when I wasgoing to my original primary or
not primary, when I was going tomy pediatric neurologist, he
just wanted to give me themedication and get me the hell
out of his office.
And I did not like that.
I didn't like him to start with.
And I didn't like that.

(31:54):
We would go in and we would sitthere and we would talk to him.
And.
He would barely even ask anyquestions.
He would basically just ask foran update on everything that we
had talked to him about before.
And not ask anything else.
Barely even give us a chance tosay anything.
And then he'd sit me on hisexamination table, he would test
my reflexes, look at my eyes,look at my ears, and that was

(32:14):
it.
That was all he asked.
ever did.
And I remember saying to him Idon't want to put her on
medication.
I don't want to treat my kid.
I never wanted to do too much inthe form of anxiety or
depressive medication for eitherone of you, because I know some
of the it's being, I didn't wantto be on medications either.
Being a massage therapist.

(32:35):
You tend to be a little bit moreanti medication anyways, you're
a little bit more natural.
We tend to be, we're accused ofbeing a little granola.
sometimes, but a little oo, butI'm like, I don't want to give
her, when he started in on themedication, I'm like, okay, we
got to figure something elseout.

(32:55):
We got to figure out what'sgoing on.
We got to figure out how totreat this because I don't want
to do this with her.
So moral of the story when itcomes to diagnosis, let's wrap
it up and put it in a nicelittle pretty package.
Make sure that you areexplaining all of your symptoms.
Everything that you're goingthrough if you need to keep a
log and be honest Yeah, likethat honest If you're feeling

(33:21):
like you're out of breath whenyou take two steps, say that.
Don't be like, I could walkacross the room and I'd be okay.
Don't try and make yourself seemstronger than you are.
Don't try and make yourself seemweaker than you are.
Be honest about your symptoms.
Be complete with your symptoms.
And, Don't I don't want to saydon't take no for an answer, but

(33:42):
don't take no for an answerbecause if you know Obviously I
knew something was wrong withme.
I knew there was more than justmy anxiety Make sure you push
that push the issue if you wantsomething to happen You have to
make it happen.
Absolutely, and that doesn'thave to that's not just with a
diagnosis or with chronicillness That's with literally

(34:02):
everything If you know what yourgoals are and your intentions
and make sure that yourintentions and your goals match
your action steps and whatyou're actually moving forward
to.
And if you think you may havePOTS or if you think you may
have some other chronic illness,do your research about it.

(34:25):
Maybe even Print up a website oran article or something bring it
with you to the doctor and belike Here's this article that
explains what this is.
Here's a list of my symptomsthat match exactly with this
article Can we look into thisand maybe do some testing
specifically for this diagnosis?
And you might need to find adifferent doctor and right some

(34:47):
people are gonna say no areputable doctor will be like
You know what?
I'm not really very familiarwith this condition I will
either do some research, I willask some colleagues or maybe you
should go see this guy acrosstown because he knows it better.
So really make sure that you'regoing, that you're going to the
right, you're going to somebodywho knows and somebody who will
listen to you and listen tothem.

(35:09):
The other thing too is that alot of times we do a lot of
research, you find a lot ofinformation, but it might not
all be credible.
It might not, it's either notcredible or it's Or there's a
reason why it's really notconnected to you.
So you have to also be open tohear from your doctor what
they're saying.
Cause if it is I was certain shehad diabetes and I'm like, she

(35:34):
has that.
There's nothing left.
There's some I just had all thisthis is what I think it is.
And and I don't know, I don't,how many times I've I have.
Cancer.
My kids have this disease andthe doctors like over their
lifespan.
I remember my, our firstpediatrician, Dr.
Heron, he said, who was amazing.

(35:55):
He said he like even would flipback into their talk you off the
ledge.
He would flip back through theirchart and say, see when you were
here, this happened when youwere here, this happened, you
were here, this happened.
So he would say, you were here alot of times for a lot of
different reasons.
And a lot of like there, youwere never here for no reason is

(36:16):
what he would say.
First of all, you know whatyou're talking about.
You have the mom intuition andthird, this is why I don't think
she has this condition thatshe's going to die in six
months.
And if they're a good doctor,they're gonna explain that to
you, and they'll answerquestions, and if you have
questions, if you're confusedabout a certain symptom you're
having, or a certain thing thatthey're saying, ask the

(36:38):
questions, because then, one,you're gonna know more about
what it is that you're goingthrough, and two, you're gonna
get their point of view, andtheir reasoning for what they're
saying.
Yes.
So be open, but do your ownresearch, be your own self
advocate, and don't stop untilyou get the answers that you
really want.

(36:59):
And not necessarily want, butget the answers that are true.
So you get the Until you get thequestion that you want answered,
I guess is what I should say.
So make sure that you know whatthat question is and sometimes
it takes time to develop that.
Like, why am I doing this?
Why am I continuing?
They're just going to tell me,it's just all in my head.

(37:20):
Cause sometimes when you hearthe diagnosis of anxiety,
although anxiety is a realcondition and some people do
just have anxiety, and that is,they have to, you have to learn
how to deal with it.
You might need to takemedications to manage it.
You might need to learnstrategies of managing your
anxiety, and it is a realcondition and it is something

(37:40):
that really affects you.
However, sometimes when youhear.
Anxiety, you hear it's all in myhead, and it's not.
Even if you just have anxiety, Iwant to say that it's not all in
your head.
There are still very realsymptoms of anxiety.
I still, to this day, have veryreal symptoms.
I'll be driving down the road,and some stupid person will cut

(38:02):
me off, or try and get in frontof me or something, driving
stupidly.
And my heart rate spikes, and Ifeel tingly in my hands and
there are still very realphysical symptoms of anxiety,
but if you were in the positionthat I was, and you're feeling
like, this is not just myanxiety, this is something more,

(38:24):
Be persistent with it, ask thequestions, do the research, go
to the doctors, do the testing,and then you will end up getting
the answers that you need.
Yes, be your own self advocate.
And then, when you learn what itis, do the things that will make
you healthier.
Yes, do more research, talk todifferent, not necessarily talk
to, but Look for people who havethe same condition as you do

(38:48):
learn watch the tick tock videoswatch the Instagram reels See
the Facebook groups watch thedifferent things that people
have to say about theirexperience use your own
Strategies, but use your owndiscernment.
If you're like that's not gonnawork for me Some of those things
you should try, because maybe itwill.
A lot of it is trial and error.
But if you, if it's not, if itdoesn't work for you, that

(39:10):
doesn't work for you, and that'sokay too.
Anything else that we need tocover about diagnosis?
I think we covered it all.
Yeah.
I feel like one of the biggestthings that I want people to
understand and hear is just tobe their own self advocate.
And don't give up.
Don't just think I'm just, it'sall in my head.
There's nothing wrong with me.
Yeah.
Don't get tired of looking forthe answer.

(39:30):
Because there were definitely afew points where I would be like
sitting there in a ton of pain,curled up in a ball on the
couch.
And this was like after I hadmoved out.
So I'd be sitting with myboyfriend on the couch and I'd
be just like holding my chest orlike something would hurt or I
would be really weak or reallyshaky.
And he'd be like, are you okay?

(39:51):
And I'm just like, no, do youneed to go to the hospital?
I don't want to, but I probablyshould.
So do your research, be yourself advocate.
Take care of yourself.
Take the time to take care ofyourself.
Yeah, you are your firstpriority, always and forever.
You're the one that's alwaysgonna be there.

(40:12):
My dad used to say, you gottatake care of number one.
That's an old school saying,mom.
It's not just your dad.
But that's one thing that Iremember my dad saying.
Yeah.
Anyways.
We'll see you guys next time.
Thank you for coming in.
So thank you for coming in.
Thanks for listening to us.
Talk over here at Quiet Mom PotsTalk.
if you enjoyed our podcast,please share this with somebody

(40:34):
who you think might beinterested in it.
That is downloading and sharingand listening is what really
helps us and it helps us get ourword out.
So thanks for being here.
Go take care of yourself and askthe questions and don't stop
until you get the answers.
We'll see you next time.