Dr Diana Driscoll: Her Journey to Unveiling Invisible Illness and Advocacy

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world one story at a time. Hi, I'm Tony Mantor.
Welcome to whind Not Me? Embracing Autism and Mental Health Worldwide.
Joining us today is doctor Diana driscoll, an accomplished optometrist
and passionate patient advocate. She has emerged as a trailblazer
in the field of chronic illness research. Driven by her
own triumphant journey overcoming posterio OStatic tycartia syndrome, she has
dedicated her career offering groundbreaking insights that resonate globally. With
a unique blend of clinical expertise profound empathy. She bridges
the gap between cutting edge science and compassionate care, delivering
innovative solutions that empower patients to navigate invisible illnesses with
renewed hope and resilience. Her influential work as a researcher,
author and speaker continues to inspire and transform lives, redefining
what's possible for those facing chronic health challenges. She's here
to discuss her journey with us, So before we dive
into our episode, we'll be back with an uninterrupted show
right after a word from our sponsors. Thanks for coming on.
Well, I'm so happy to come on. Thank you for
the honor. Honestly, it really is an honor.
Oh it's my pleasure. If you would give us an
idea of how you started and why you started doing
what you do today.
Yeah, and that's easy because I was a patient. I
got sick, was ultimately diagnosed with Potts postural orthostatic tachy
cardio syndrome. Years later my kids were sick. I was
completely disabled over ten years, went everywhere for help, even
was in clinical trials, and no one could figure it out.
Well, can you give us an example of some of
the things that you went through.
Yeah, it was pretty brutal, honestly, because you're so incredibly sick,
and the symptoms are evolving over time tend to multiply.
Functionality continued to plunge, and it felt sometimes like these
waves would hit, almost like your body was on fire.
So nothing was working right. Your heart's racing, it's like
you're just flooded with adrenaline, but your digestion stops. I
had really severe or ultimately severe malabsorption nutrient problems. It
took a long time to figure out. I was hallucinating,
never could sleep. But it was just one symptom after another,
and I remember the doctor is saying, there's no way
that you could have something that affects every system of
the body. I was like, you figure it out. Because
I got a virus, and two weeks later I was
sick and I had to stop my practice right then.
I couldn't finish my last two patients. It wasn't a
subtle condition. So I was thrown into it because no
one could help. But my kids were sick. My son
was completely disabled. He developed ultimately severe osteoporosis. He broke
his arm throwing a ball just putting on pote. He
was so fragile he oftentimes couldn't even sit up without fainting,
and no one was jumping up and down trying to
help us and thinking this is an emergency. You know,
these otherwise healthy people are completely disabled and they try
to ultimately go to it must just be anxiety or
what the researchers said was we think you're just more
aware of your own body than other people. So those
were fighting words at that point, Tony, I knew if
I had any hope of getting back to life, I
had to try to figure this out.
Yeah, so it's called POTS. Now this isn't as mainstream
because you don't hear about it every day. So how
long has this been around?
It's a great question, right, Mayo came up with the
term POTS at late night, mid or late nineties, but
it has been around for forever. It was originally I think,
called soldiers hearts, and we see paintings, you know, back
in the day of women having a case of the
vapors yeh in fain. COVID brought it to the forefront,
a virus that can trigger an inflammatory response in some
patients like I had a virus. It wasn't COVID, but
I had that admiral response. My son had a series
of viruses that made him sick, and COVID being a
star as virus is known to trigger inflammation, so and
those genetically predisposed to this abnormal inflammatory response brought ten
to fourteen percent of patients who've had COVID go on
to develop pots. So more people hear about it, But
it's kind of unfortunate. The label works against us because
it postural orthostatic tachy cardio syndrome implies that it's a
heart problem because the heart rate is when people get vertical.
And I would tell the doctors that is the least
of my problem. If it was a heart thing, one
the cardiologist could figure it out and Martler gray, but
two I could just sit down. I should be fine.
I'm sick in every part of my body. Can we
instead ignore the heart and look at these other symptoms
and maybe have an idea of what happened? And they said, no,
we can't do it. It was an incredibly frustrating journey.
Nothing made sense to me.
Yeah, I can definitely understand why you're frustrated. So has
it been proven that it's not just heart related.
No, I think it's definitely proven as not. We've had
pots Carey open over ten years. We were aware of
inflammatory pods long before it opened. I think enough is
in literature now sort of thanks to COVID that explain it.
Doesn't all tie it together beautifully, but explained in some
patients there is an abnormal inflammatory response and that is
what's keeping people sick. And honestly, I think fairly early
on in COVID they recognize that some patients, if they
were put on ivy steroids, sometimes they had a chance
of survival and otherwise would die. It wasn't the virus
that was killing them. It was an inflammatory response. So yeah,
it's progression of figuring on it.
You mentioned anxiety. Anxiety can typically fall under that mental
health umbrella. Yes, so correct me if I'm wrong, But
I would expect that this could affect one's mental health
quite severely.
It does, but probably more importantly than that is one
we don't want to How do I say this minimize
the suffering patients are going through physically by assigning it
a mental health diagnosis. I was almost fifty years old.
I had a history of mental health and I got
a virus in two weeks later, You know I was.
I knew I didn't suddenly have a mental health problem.
The condition progress, the inflammation worsen, the cardiovasc hear system
was effected, the blood vessels started leaking, autonomic nervous system
started to be affected as the dominoes fell. Ultimately, absolutely
I had every psych symptom known to man, but I
knew it was medical. We could figure out what dominoes
are falling and why I would have a chance to
get not only physical health back, but the brain health back. So, yes,
patients go through quite a few mental problems going through this.
They're extraordinarily difficult patients because they're very high anxiety, almost paranoid.
And it isn't just the medical journey that's horrible that
they've been on that has done that. It's because of
the changes to the brain.
How do you attack this? How did you stop it?
Or how do you stop it? What did you come
up with?
Honestly, through my journey, it was layers at a time, right,
It wasn't like all of a sudden when we figured
it out. I wish it was a straightforward process. It
took ten years of every layer to figure it out.
And then ultimately I looked at my kids who were
also sick. We had some commonalities that we had differences too.
Ultimately went to, Okay, what else could bring patients to
this place? It's not all about me, it's not all
about them. You know, what else could cause a similar pattern,
and how can we test for it? Can we look
for it, and what can we do to approach it
as safely as possible, preferably with existing medications or supplements.
I didn't want to have to wait for a new drug.
You know, if we know the mechanism of action of
some things, we can utilize those today. Patients don't have
to wait for that. So the commonalities I put in
a book called the Driscoll Theory. It's oh gosh, it's
almost fifteen years old now. I think, especially for post
COVID and patients who are not in that invisible illness world,
all of that is new to them. Like there's a
pen city to develop high into crenial pressure, the cardiovascular
effects of the inflammation, how the inflammation affects autonomic nervous system,
what we can do about it is all in there,
so we can start with those commonalities when we look
at patients and then we keep our thinking caps on
to poke around and see what kind of differences there are,
and then how could we approach it? And then again
you're dealing with patients who are incredibly sick, disabled, frustrated,
almost paranoid, highly anxious, trying to hold their hands through
it is. It's really quite the talent. I have a
personal passion for it because I was there.
With what you just said. I find something to be interesting.
It's not a good interesting, but interesting nonetheless, And a
percentage of the people I speak with, whether it be
on autism, serious mental illness, it seems like that window
for them to find out and figure out what's going
on is ten years.
We've got to slop with that.
Yeah, that's just way too long.
Well, I look back on what I went through, what
I did to figure things out how I can help
other people, and I thought it should have never taken
an optometrist from Texas try to put all this together.
What are the researchers doing? And I realize, Okay, they
go home at five o'clock, you know, they're done with
their day, and I am living and breathing at twenty
four seven, did nothing, then think about it, read about it.
My brain was going so it take a lot of repetition,
use my body as a sample, you know, and then
I have my kids like laborats at home, so I
was in position to some degree maybe to figure it out.
Is there is absolutely no reason that should take ten years.
So what you're saying is this can affect so many
different areas of the body. One person can have one thing,
another person can have a totally different thing. Yet this
all falls under the same umbrella.
Well, what's interesting is although my journey started with pods,
it didn't end with pods. I go through that journey
and then look at some of the commonalities among patients,
and being on the autism spectrum is one of them.
It's almost across the board. So we look at that
and go, what kind of changes occur in something like autism,
or even in aging, inflammating and other chronic disorders that
cause low level inflammation like menopause for example, how is
that affecting the autonomic nervous system? But I know in autism,
it's been known for a couple of decades that the
autonomic nervous system is affected. The pupils tend to be larger.
There's a link toward constipation. The brain chemistry is very
similar to what we see in pots, the high anxiety,
liking things a certain way, that sort of thing, and
being able to help people beyond pots is just a
wonderful thing dry eyes. For example, here I am an
eye doctor and to be able to start as an
octomegers be disabled by this illness for ten years and
end up kind of at the same spot where now
we have answers for other people who don't have POTS,
but their autonomic nervous system is affected, and doctors typically
hate the autoomic sense. They don't understand it. We don't
really learn that much about in school. It feels like
it's impractical to try to address it. We can't see it,
you know. But I had to go into such extraordinary
detail to pick this apart, and ended up with five
patents to date on this because I got I went
deeper than anyone had gone before.
So tell us a little bit about your patents. What
does that involve?
Yes, what started out was already describe this When I'm
looking at all of my symptoms, and at one point, Towny,
I think I had eighty symptoms, you know, and I'm
trying to cluster them in certain ways to try to
see what patterns I could find. I thought, Okay, some
of these sort of look like art rate digestion allows
slow breathing, and that would be the vagus nerve. Could
this be a problem with that nerve? So I started
to look at was it a nerve problem? Is it
a neurotransmitter problem. Is a nerve damage, is a genetic
issue with the production of the neurotransmitter? Or is it
a receptor? Is the receptor that would receive the chemical
that this nerve releases just sitting there quietly and it's
just not responding and trying to pick that apart. And
there was a ton of research, and actually there still is,
which kind of kills me. I'm looking for some weird
autoimmune condition that would shut down the receptors of the
parasympathetic nervous system, because that's how patients presented.
With all this research, what did you find.
No one to that date had thought to test the receptors.
I tested them. They were great, So this was not
a receptor problem. And then I stepped back and I
looked bigger. Over five years, I collected symptom checklists from
patients with chronic fatigue syndrome, PODS, fibromyalgia, and interestingly PTSD,
they tend to show autonomic symptoms. And in this long
list of symptoms, I talk symptoms of anticholinergake syndrome where
acetylcholine them the neurotransmitter needed by the vagus nerve and
other systems of the body. Was say if it was
broken down by a poison, what patients would display. And
although the symptoms would ebb and flow a bit, the
vast majority of patients showed that pattern. And I knew
this wasn't really a vegus nerve problem. It wasn't just
affecting this one nerve. This was also affecting the neurotransmitter
the brain needed. It affected pupil size, tear production also,
So it was a bigger problem than a vegas nerve problem.
And if we look at patients with autism or everybody
else and we say, oh, there's a vegas nerve problem,
I know that's a big discussion. We're missing it. We're
limiting their recovery by focusing on this one nerve. It
is unfortunately a bigger problem. So the patter in the
first pattern I wrote when I ultimately figured out a
way to cover for these genetic issues that I wanted
to cross the blood brain barrier. I wanted the vegus
nerve to be stimulated. I wanted pupil sized to normalize.
I had a wishless and I didn't want to wait
for a new drug. I created a supplement blend that
did it, and I thought, I don't think it makes
every doubts. I wonder if I could patten this. Unfortunately,
I didn't know at the time that you really can't
get patents for supplement blends. But I was confident in
the science. No, we need to do this, and by
all you know, I got it. And then I just
kept expanding on it as I learned more so automate
nervous system and to be able to give people something
over the counter they don't have to wait for their doctors.
It's out there now called parassim plus is a godsend because,
as you know, so many patients are having to flounder
to figure things out themselves. If they have to find
a doctor to prescribe a drug you know may or
might may not happen. But as patients were put in
the unfortunate position of having to go it alone half
the time.
Yes, and then if you add to that some of
the side effects that these drugs that are prescribed have.
Yes, And do not get me wrong, I think there
are some drugs that are gifts from God. But if
we can do things in a safer manner, patients we
see and you might see this too. The more inflamed
patients get, the more sensitive they can telling a doctor, Oh,
if you're going to give me a medicine, first, I'm
going to just tape it to my forehead. If that
goes okay, I might smell it and eventually if I'm
still gonna lick it. And they said, what are you
talking about. I don't know. I'm just really sensitive. And
the worse I got, the more sensitive I got. Yes,
we'd like to do always approach things in the safest manner.
Yes, Safe is always the best way to go. You
brought up autism. Did you get diagnosed?
I never sawt a diagnosis, but I had a doctor friend,
she was actually a patient, and she said, Dan, I
think you're on this background and I look at the description.
I go, yeah, probably, you know it doesn't limit me,
which is great, and I think in some ways it
can be somewhat of an advantage. The patients we see
with inflammatory pods tend to be extraordinarily smart. I guess
they're very detail orient and they have a very hot eybar.
They expect everybody else have oyebars.
They don't.
In our mind to some degree a form of the
anxiety that results from the change in brain chemistry, and
that can be moderated. One of the doctors who came
to me said, I really want to get rid of
the illness, but I want to retain my gifts. I said,
you know, I understand that you had these gifts before
and you weren't sick, so the brain is likely always
going to lean that direction down. But we do. We
see it all the time. Most of our patients who
were checked at potscare will say they followed in the spectrum.
Couple of patients who are more dramatically autistic, like nonverbal.
We ever leave you some there, but it's more of
the spectrum patients that we see.
Okay, how do I phrase this question? You said it
took you ten years to figure out your journey of POTS. Yes,
do you consider yourself cured now?
Oh? Absolutely, I EI, there is no possible way I
would want to nor would I be able to do. Frankly,
see POTS patients unless we are going for complete resolution.
But where patients oftentimes will need some more help is
something set them up for there, right, So if we
can recognize that, we know what their underlying issue is,
why did their body respond in that way? So to speak?
One do they need anything to maintain their health? Okay?
Or if they get triggered again, you know another COVID
or gosh, I just talked to a patient who by
basically recovered from POTS and then got COVID again and
he just can't pull out of it. But if that
happens again, to know what to do, jump on top
of it so they don't go down that path again.
And that's a goal. But we always go for a
complete resolution.
That's really good. So where do you supplements fit in
on this?
It takes munch. I've maybe seen two patients out of
a few thousand who could stage us with supplements.
Okay, that makes sense. What does the Medical Association thing
of your supplements?
I get it depends to you als. But when I
first came out with the term inflammatory pods, years ago.
Oh that was pooper tonny. I will tell you. I said,
that's fine, you have to have a thick skin on this.
I knew I was right. It's like, just give it time,
you'll see. And then COVID came along in that kind
of help. But everything in the DRISCO theory has been
proven by other people. It might be scattered, we know that.
So I think in ten to twenty years maybe the
labels will completely need to change. PODS is not going
to be a label, for example, that's just presentation. That
is not a disease. The heart is racing for a reason.
That reason is the true diagnosis. And one of my
goals is to be able to release something very objective
for the patients where they know their genetics what set
them up for it. They can see they have this
genetic tendency to develop fill in the blank or gazillion
things are going to be. Then if that happened, blood
work will usually show it, so they don't have some
invisible illness that has no rhyme or reason, and doctor's
eyes will have much from more objectivity, and then pots
will just be a sign. That's all. It will be.
Okay, So is there any blood work that can be
done to figure this out.
Pots isn't a disease, right, Okay, So we always look
at a ridiculous amount of blood work because we're playing
detective here to look for any sort of and it's
usually hidden air quota here, hidden information that could be
driving some of this, and then blood work things that
could make it worse. And then the patients we see
have generally been extraordinarily sift for a long time. We've
got to look for some of the dominoes that have fallen,
like the tendency to claw, for example. You may have
heard of that with COVID. That's from the vascular inflammation.
We look into that pretty deeply. We want to know
if they're dealing with high entopraneal pressure that has got
to be addressed, that's the case, and then we tendency
every vascular problem known to me because of the blood
vessels being affected. If their inflammation has taken off for
a while, I guarantee the pair sympathetic nervous system isn't
working right. And you can see it. The pupil's are big.
You see one to constipation rather dramatic gastroparesis. Like I
did my gallbladders shut down completely, for example. All that's neurological.
We can put that back.
Okay, with all these things happening that you just said,
I mean that's pretty serious stuff. Any one of those
things that you just brought up. If not treated properly,
it's a death sentence. How do you get it back
on track so it's not a death sentence? I mean,
that's a pretty big leap.
I wish I could say everybody's all the same, we
approach it the same, We don't we spend so much
time on each case because everybody gets different. When doctors
would say, oh, it sounds like you're just an anxious female,
you know, that's what I think. That was just so ridiculous.
And I don't want to scare anybody that that's going
to be them, you know. But I was in stage
three kidney failure for three years. I was developing congestive
heart failure. I had just sleeping out because my lungs
would fill with fluid. I had dramatic amount absorption and osteoporosis.
I couldn't think were the darn getting brain lesions. This
wasn't some subtle condition I could just push through. But
even as sick as I was. We wanted to approach it,
or I wanted to approach it as conservatively as possible.
You didn't always recommend we do that.
So did you say that you had congestive heart failure.
I didn't have congestive heart failure. I had left ventricular
diastolic discussion that was added that way.
Oh okay, so you had that you had kidney failure
going on. How did the doctors approach this, because, as
you said earlier, it was a symptom of the pots.
Were they treating it that way or were they going
for one thing only each symptom, by each symptom?
Yeah, unfortunately, that's that's the challenge. If we have an
organ that's problem at it, we're set that specialist right,
and they have a list of drugs they can use.
They first label the condition and they use the drugs.
My mind, that was the wrong approach. I said, this
is just one aspect of a very severe systemic illness.
If we figure out what's hitting me systemically, maybe some
of these things will right themselves. Things like the cardiovascar
system being effected so dramatically affected. For example, we know
now with COVID COVID's really helped with this. That the endotherlium,
the inner lining of the blood vessels gets damaged.
When that happens, what other symptoms tend to arise.
So they tend to league, they dilate inappropriately. Blood brain
brrier can break down, which is horrible. Nations tend to
blow and they're more prone to stroke, cart attack, you know, clouting,
which then takes us to things like vascular dementia. So
it can be an ugly journey. But going to this
specialist just wasn't the answer.
So can you give me your reasoning behind that theory
of not going to the specialist.
Because I didn't want to cover up symptoms. I didn't
want to address it like by artificially sewing down the
part which they tried. It just didn't make any sense.
So we approach it just completely differently, and there is
a cookie cutter. Everybody needs to do this. I'm always
hesitant to say too many specifics because I see patients
just jump to that and that whatever it is might
be the wrong thing for them, but to keep their
thinking caps on. I do have a page on the
website at Podscare called inflammatory pods that might be a
good place for a lot of people to look.
Yes, let's do that right now, if you would give
the listeners your contact information and how they can follow you.
Yes, I'm at potscare dot com. The website does again
have inflammatory pods on there, and I'm putting as much
as i can into a Patreon account called pots Rebels.
There's a ton of information in there, and we meet regularly.
We have a meeting Thursday in fact, and I'll answer
a question as we bring up topics instead because we've
got to get other people up to speed.
Yeah, that's great. Where do you see yourself in three
to five years? What's your future goals?
The goals? I'm so glad you asked that, because I
never give up on goals. You know, I'm never to
the point of oh I'm done. There's always more. I
really want to redefine these conditions with proper labels, backed
by genetics, with blood tests that will prove it, where
then we can have labeled it works and a treatment
program and a prognosis, and patients will be validated for
the suffering they go through. If there's anything worse than
going through the suffering itself and watching our kids go
through it. It's for a doctor not to go this
could be serious. I'm so sorry you're going through this,
you know, but the lack of a was ridiculous. So
that's a goal. And then now I've shifted to some
degree to more why aren't we more proactive? Like as
we get older. I think I'm the most active person
I know, but I'm very proactive with my health, so
vasular health and certainly nutrition. I'd always been a fan
of nutrition and exercise in health is really important. I
don't know that we have to end up with these
old age illnesses like I think we can probably prevent
the best majority of those, and my mission to do that.
I feel like those ten years Tony I was sick,
I went through old age, your death. It was just
a horrible thing. I don't want to do that.
In yes, I totally understand that, and I totally get it.
This has been a great conversation, great information. I really
appreciate you taking the time to join us today.
Well I'm so happy to come home. Thank you for
the honor. Honestly, it really is an honor. There's so
many people suffering out there that really should not be suffering.
And as you know sometimes we just have to get
on our soapbox and share with the others. I appreciate
your efforts to expand the voice, and only one voice.
There's only so much I can do.
Well. The old saying is one step at a time, Well,
this can be one voice at a time. So with
that said, it's been a great conversation. Thanks again, Thanks
for taking time out of your busy schedule to listen
to our show today. We hope you enjoyed it as
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