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

In this episode of 'Why Not Me?', hosted by Tony Mantor from Nashville, Tennessee, special guest Dr. Diana Driscoll shares her powerful journey of overcoming Postural Orthostatic Tachycardia Syndrome (POTS).
An accomplished optometrist and patient advocate, Dr. Driscoll discusses her decade-long battle with chronic illness, the evolution of her research, and her groundbreaking insights into the systemic nature of POTS and related conditions.
She delves into the impact of inflammation on the autonomic nervous system, the challenges of obtaining proper diagnoses, and the development of her patented supplement blends designed to mitigate these health issues.
Dr. Driscoll also touches upon the intersections of POTS, autism, and mental health, offering hope and innovative solutions to those navigating similar struggles.
00:00 Introduction to Why Not Me

Meet Dr. Diana Driscoll
Dr. Driscoll's Personal Journey with POTS
Understanding POTS and Its Challenges
Innovative Approaches and Discoveries
Autism and Broader Implications
Future Goals and Proactive Health
Conclusion and Final Thoughts
IINTRO/OUTRO Music: T. Wild
Mantor Music BMI

The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. 

The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.

Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.

Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.

Reliance on this podcast's contents is at the listener's own risk. 

Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided.

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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)

Transcript

SPEAKER_01 0:06

Welcome to Why Not Me, embracing autism and mental health worldwide. Hosted by Tony Mirator. Broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guests share their wrong, powerful stories. Some will spark laughter, others will move you to tears. These real life journeys inspire, connect, and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance, and profound understanding of autism and mental health. Tune in, be inspired, and join us in transforming the world one story at a time. Hi, I'm Tony Mantor. Welcome to Why Not Me, Embracing Autism and Mental Health Worldwide. Joining us today is Dr. 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 posterior ostatic tycardia 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.

SPEAKER_00 2:13

Well, I'm so happy to come on. Thank you for the honor. Honestly, it really is an honor.

SPEAKER_01 2:18

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.

SPEAKER_00 2:28

Yeah, and that's easy because I was a patient. I got sick, was ultimately diagnosed with POTS, postural orthostatic tachycardia syndrome. Years later, my kids were sick. I was completely disabled over 10 years. Went everywhere for help. Even was in clinical trials, and no one could figure it out.

SPEAKER_01 2:48

Wow. Can you give us an example of some of the things that you went through?

SPEAKER_00 2:53

Yeah, it was pretty brutal, honestly, because you're so incredibly sick. The symptoms are evolving over time, tend to multiply, functionality continued to plunge. And it felt sometimes like these waves would have 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. It was just one symptom after another. And I remember the doctors 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. Um, it wasn't a subtle condition. So I was thrown into it because no one could help. And my kids were sick. My son was completely disabled. He developed ultimately severe osteoporosis. He broke his arm, throwing a ball, just putting on hope. 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 oh, it must just be anxiety. Or what the researchers said was, we think you 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.

SPEAKER_01 4:42

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?

SPEAKER_00 4:52

Mayo came up with the term pots, um, uh late nine, 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 in vain. COVID brought it to the forefront. A virus that can trigger an inflammatory response in some patients. Like I had a virus that wasn't COVID, but I had that abnormal response. My son had a series of viruses that made him sick. And COVID, being a SARS virus, is known to trigger inflammation. So in those genetically predisposed to this abnormal inflammatory response, about 10 to 14% 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 tachycardia syndrome implies that it's a heart problem. Because the heart raises when people get vertical. And I would tell the doctors, that is the least of my problems. If it was a heart thing, one, the cardiologist could figure it out, my heart looked great. 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 that. It was an incredibly frustrating journey. Nothing made sense to me.

SPEAKER_01 6:18

Yeah, I can definitely understand why you're frustrated. So has it been proven that it's not just heart related?

SPEAKER_00 6:26

No, I think it's definitely proven it's not. We've had pots carry open over 10 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 explains 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 recognized that some patients, if they were put on IV steroids, sometimes they had a chance of survival, and otherwise they would die. It wasn't the virus that was killing them, it was an inflammatory response. So yeah, it's progression of figuring all that.

SPEAKER_01 7:09

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.

SPEAKER_00 7:23

It does, but probably more importantly than that is one, we don't want to, how do I say this, minimize um the suffering patients are going through physically by assigning it a mental health diagnosis. I was almost 50 years old. I had a history of good mental health, and I got a virus, and two weeks later, you know, I was sick. I knew I didn't suddenly have a mental health problem. The condition progressed, the inflammation worsened, the cardiovascular system was affected, the blood vessels started leaking, autonomic nervous systems started to be affected. As the dominoes fell, ultimately, absolutely, I had every psych symptom known to man, but I knew it was medical. If 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.

SPEAKER_01 8:36

How do you attack this? How did you stop it, or how do you stop it? What did you come up with?

SPEAKER_00 8:42

Honestly, through my journey, it was layers at a time, right? It wasn't like all of a sudden, well, we figured it out. I wish it was, you know, straightforward process. It took 10 years of every layer to figure it out. And then ultimately, I looked at my kids who were also sick. We had some commonalities, but 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? How 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 15 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 density to develop high intracranial pressure, the cardiovascular effects of the inflammation, how the inflammation affects the 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. I have a personal passion for it because I was there.

SPEAKER_01 10:22

With what you just said, I find something to be interesting. It's not a good interesting, but interesting nonetheless.

SPEAKER_00 10:28

Yeah.

SPEAKER_01 10:28

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 10 years.

SPEAKER_00 10:42

We've got to stop that.

SPEAKER_01 10:43

Yeah, that's just way too long.

SPEAKER_00 10:46

Well, I look back on what I went through, what I did to figure things out, how I could help other people, and I thought it should have never taken an optometrist from Texas to try to put all this together. What are the researchers doing? And then I realized, okay, they go home at five o'clock, you know, they're done with their day, and I am living and breathing it 24-7, did nothing. Then think about it, read about it. My brain was going, so it'd take a lot of repetition. Use my body as a sample, you know, and then I have my kids like lab rats at home. So I was bit in position to some degree, um, maybe to figure it out. As there is absolutely no reason that should take 10 years.

SPEAKER_01 11:24

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.

SPEAKER_00 11:38

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, inflammation, um, 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 optometrist, be disabled by this illness for 10 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 autonomic system. They don't understand it. We don't really learn that much about it 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.

SPEAKER_01 13:13

So tell us a little bit about your patents. What does that involve?

SPEAKER_00 13:18

Yes. What started out was how do I describe this? When I'm looking at all of my symptoms, and at one point, Tony, I think I had 80 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 heart rate, digestion, allow slow breathing, and that would be the vagus nerve. Could this be a problem with that nerve? So I started to look at, well, is it a nerve problem? Is it a neurotransmitter problem? Is the nerve damage? Is it 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, of looking for some weird autoimmune condition that would shut down the receptors of the parasympathetic nervous system because that's how patients presented.

SPEAKER_01 14:20

With all this research, what did you find?

SPEAKER_00 14:23

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, POTS, fibromyalgia. And interestingly, PTSD, they tend to show autonomic symptoms. And in this long list of symptoms, I took symptoms of anticholinergic syndrome, where acetylcholine, 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 vagus 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 vagus nerve problem. And if we look at patients with autism or anybody else, and we say, oh, there's a vagus 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 patent, the first patent 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 vagus nerve to be stimulated. I wanted the pupil size to normalize. I had to have a wish list 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 anybody's ever done this before. I wonder if I could patent this. And fortunately, I didn't know at the time that you really can't get patents for supplement blends. But I was confident in the sign. No, we need to do this. And by golly, you know, I got it. And then I just kept expanding on it as I learned more. So autonomic 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 Parasymplus, 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.

SPEAKER_01 16:44

Yes. And then if you add to that some of the side effects that these drugs that are prescribed have.

SPEAKER_00 16:51

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 get. 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 good, I'll lick it. And they say, 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.

SPEAKER_01 17:27

Yes, safe is always the best way to go. You brought up autism. Did you get diagnosed?

SPEAKER_00 17:33

I never sought a diagnosis, but I had a doctor friend. She was actually a patient, and she said, Diana, I think you're on the spectrum. And I look at the description and 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 because they're very detail-oriented. They have a very high bar. They expect everybody else to have that high bar, which 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. Yeah. But we do, we see it all the time. Most of our patients who were checked at POTS care will say they falled in the spectrum. A couple of patients who were more dramatically autistic, like nonverbal, were able to do some help there. But it's more the spectrum patients that we see.

SPEAKER_01 18:44

Okay. How do I phrase this question? You said it took you 10 years to figure out your journey of POTS.

SPEAKER_00 18:51

Yes.

SPEAKER_01 18:52

Do you consider yourself cured now?

SPEAKER_00 18:55

Oh, absolutely. I I there is no possible way I would want to, nor would I be able to, 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 that, right? So if we can recognize that, we know what their underlying issue is, why did they re 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 basically recovered from POTS and then got COVID again. And I 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 that's a goal. But we always go for a complete resolution.

SPEAKER_01 19:42

That's really good. So where do your supplements fit in on this?

SPEAKER_00 19:46

It takes supplements. I I've maybe seen two patients out of a few thousand who could stage us with supplements.

SPEAKER_01 19:54

Okay, that makes sense. What does the medical association think of your supplements?

SPEAKER_00 20:01

I guess it depends who you ask. But when I first came out with the term inflammatory pots years ago. Oh, that was poo-poo, Tony. 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 and that kind of helped. But everything in the Driscoll theory has been proven by other people. It might be scattered.

unknown 20:24

Yeah.

SPEAKER_00 20:25

We know that. So I think in 10 to 20 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 they know their genetics, what set them up for it. They can see they have this genetic tendency to develop, fill in the blank, there are gazillion things it can be. Then if that happens, blood work will usually show it. So they don't have some invisible illness that has no, you know, rhyme or reason to doctor's eyes. We'll have much more objectivity. And then POTS will just be a sign.

SPEAKER_01 21:11

That's all it will be. Okay. So is there any blood work that can be done to figure this out?

SPEAKER_00 21:17

POTS isn't a disease, right?

SPEAKER_01 21:19

Okay.

SPEAKER_00 21:20

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 quoting here, hidden inflammation 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 sick 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 intracranial pressure. That has got to be addressed if that's the case. And then we tend to see. Every vascular problem known to man because of the blood vessels being affected. If their inflammation um has taken off for a while, I guarantee you the parasympathetic nervous system isn't working right. And you can see it, people's revealing. You can say, I want a constipation, rather dramatic gastroparesis like I did, my gallbladder shut down completely, for example. All that's neurological. We can put that back.

SPEAKER_01 22:25

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.

SPEAKER_00 22:47

I wish I could say that everybody's all the same. We approach it the same. We don't. Uh we spend so much time on each case because everybody is different. When doctors would say, Oh, it sounds like you're just an anxious female, you know, that sort of thing. That was just so ridiculous. And I don't want to scare anybody that that's gonna be them, you know. But I was in stage three kidney failure for three years. I was developing congestive heart failure. I had to sleeping up because my lungs would fill with fluid. I had dramatic malabsorption, osteoporosis. I couldn't think worth 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, or I wanted to approach it as conservatively as possible. And 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 dysfunction that was headed that way.

SPEAKER_01 23:43

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 pods. Were they treating it that way, or were they going for one thing only, each symptom by each symptom?

SPEAKER_00 24:00

Yeah, unfortunately, that's that's the challenge. If we have an organ that's problematic, we're sent to that specialist, right? And they have a list of drugs they can use. They first label the condition and they use the drugs. In 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 write themselves. Things like the cardiovascular system being affected, so dramatically affected. For example, we know now with COVID, COVID's really helped with this, that the endothelium, the inner lining of the blood vessels gets damaged.

SPEAKER_01 24:40

When that happens, what other symptoms tend to arise?

SPEAKER_00 24:44

So they tend to leak, they dilate inappropriately, blood-brain barrier can break down, which is horrible. Patients tend to bloat, and they're more prone to stroke, heart attack, you know, clotting, which then takes us to things like vascular dementia. So it can be an ugly journey, but going to the specialist just wasn't the answer.

SPEAKER_01 25:04

So can you give me your reasoning behind that theory of not going to the specialist?

SPEAKER_00 25:10

Because I didn't want to cover up symptoms. I didn't want to just address it like by artificially slowing down the heart, which they tried. It just didn't make any sense. So we approach it just completely differently. And there is no 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.

SPEAKER_01 25:42

Yes, let's do that right now. If you would give the listeners your contact information and how they can follow you.

SPEAKER_00 25:49

Yes, I'm at potscare.com. The website does again have inflammatory pods on there. And I'm putting as much as I can into a Patreon account called Potts Rebels. There's a ton of information there, and we meet regularly. We have a meeting Thursday, in fact, and I'll answer questions, we bring up topics and stuff because we've got to get other people up to speed.

SPEAKER_01 26:14

Yeah, that's great. Where do you see yourself in three to five years? What's your future goals?

SPEAKER_00 26:21

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 went to redefine these conditions with proper labels, backed by genetics with blood tests that will prove it, where then we can have a label that 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 your 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 validation 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 vascular health, you know, certainly nutrition. I've always been a fan of nutrition and exercise. I don't know that we have to end up with these old age illnesses. Like, I think we can probably prevent the vast majority of those. And I have a mission to do that. I feel like those 10 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 again.

SPEAKER_01 27:42

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.

SPEAKER_00 27:53

Well, I'm so happy to come on. 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 and shake with others. I appreciate your efforts to expand the voice. I'm only one voice. There's only so much I can do.

SPEAKER_01 28:14

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 much as we enjoyed bringing it to you. If you know someone who has a story to share, tell them to contact us at why notme.world. One last thing spread the word about why not me. Our conversations, our inspiring guests that show. You are not alone in this world.