Episode 123. The Hidden Causes of POTS No one talks about with Dr. Dianna Driscoll

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"There is always a reason for illness. You may not have all your answers today, but that doesn't mean answers don't exist, never give up."

These are the words of today's guest, Dr. Diana Driscoll.

In this episode, I discuss postural orthostatic tachycardia syndrome with Dr. Driscoll. She shares her personal and professional journey with postural orthostatic Tachycardia syndrome, otherwise known as pots and its related illnesses.

After years of worsening health and little validation from the medical system, Dr. Driscoll took matters into her own hand combining expertise from her years working as an optometrist and applied them to her lived experience as a patient and caregiver. She developed what became known as the Driscoll Theory, [00:02:00] uncovering key mechanisms related to pots, including intracranial pressure, acetylcholine, vagus nerve dysfunction, and systemic vascular irregularities.

This conversation explores the emotional toll of navigating invisible illness, the gaps in conventional care and the framework Dr. Driscoll now uses at POTS Care and in her patient community Pots Rebels. Along the way, she highlights both practical interventions and hopeful perspectives for patients and practitioners alike.

I hope you enjoy this episode as much as I did. And please share this episode with your friends and anyone suffering with this condition, as it's very helpful to hear these perspectives. Thanks again for being here, and I hope you enjoy this week's episode.

Dr. Driscoll, welcome to the One Thing Podcast. It's [00:03:00] a delight to be here with you today.

Dr. Diana Driscoll: Thank you for having me, Dr. Rinde It's, it's really an honor to be here.

Adam Rinde, ND: Thank you. You're, you're very welcome and it's an honor for us to, to be able to speak with you. I've been following your work for a while, and, um, I'm excited to hear your approach firsthand.

It's, it's just very, uh, interesting work that you do. I know that you've had a long journey with this process personally and professionally, we're gonna be talking mainly about POTS and how it interweaves with chronic illness. So just curious as to get started– in your own process, professionally or maybe personally, when did you start questioning the medical system and kind of general approaches and saying like, you know, the, I need to start figuring out some of these conundrums or complexities myself, because the typical model wasn't working for you.

Dr. Diana Driscoll: Yeah, that's such a good [00:04:00] question. 'cause it was actually one day a decision I knew I had to make and it was just a terrible day, frankly. I was diagnosed with POTS as you mentioned, and went through about three, three and a half years of working with doctors. I assumed. They knew what was going on and I just needed to follow what they were recommending.

I participated in, uh, Mayo Clinic's clinical trials for three years, and I was getting worse every year, and I thought, they must know something, they're just not telling me. So I sat down with them that third year and said, okay, I am still completely disabled. My son is disabled. He was sick for three years, and I said.

What do you guys really think this is? I mean, where should I be looking? And they said, oh, well, we, we think POTS patients are perfectly normal. They're just more aware of their own bodies.

Adam Rinde, ND: Hmm.

Dr. Diana Driscoll: And that was the moment I thought, I'm on [00:05:00] my own. Yeah. They don't have any idea. I mean, I, I got a virus, um, that other people got this virus and I just didn't recover.

And it was two weeks later I was disabled. It wasn't subtle. It wasn't something I could push through. You know, I was a strong woman and my, my son was eight years old when he got sick. He sometimes couldn't even sit up without fainting. It was beyond discouraging. But I thought, okay, I'm an optometrist.

I'm in the medical field. I'm in the body of a patient. I have children who are sick. Let's give it everything we got. And see if we can get some answers. Yeah. And it was still 10 years and many layers of figuring it out, but there was that moment. I will never forget that moment.

Adam Rinde, ND: Yeah. Yeah. I mean, so the, the world of POTS really from a specialty standpoint comes down to, you know, having support from autonomic neurologists, sometimes cardiologists, and they're very rare, hard to [00:06:00] find people that really understand it.

So were you on your own just like pouring through research or what, what was the

Dr. Diana Driscoll: It was 24 7. Honestly. I had a cardiologist who ruled out heart problems. That's great. And I've gotta say that the vast majority of practitioners, I mean, including me, had I not gotten sick. Hear the word POTS and think postural orthostatic tachycardia syndrome.

That's a heart problem. Right? Well, after seeing thousands of patients, I'll have to tell you, we have literally never had a patient whose cause of POTS –was a heart problem a heart problem. . So that just, that label alone is a problem. But it was important. And we always make sure our patients, to see a cardiologist rule out things that are, you know, atrial fib or, uh, PVCs are common, or that sort of thing, rule out that sort of thing, but it's not the cause of POTS.

And then I had a neurologist whom I loved and. He didn't [00:07:00] understand any of that, just nothing. But he hung in there as I was very slowly working through the problem and he just hung out by my side and supported me. And to this day he's a huge source of support. So, and now he understands what happened, what we went through.

So those are the two doctors I think I kept for just mainly support, but it was. Basically on my own, which is not a good place to be.

Adam Rinde, ND: Yeah,

Dr. Diana Driscoll: frankly, I was running my own blood tests and et cetera, and trying things, but it had to make sense to me. I refused to believe that this was something that we couldn't recover from, and I didn't wanna treat it.

Symptomatically, I knew something happened, right? And whatever happened, could we undo it and I healthy again, you know? And then my kids were so sick, just nothing made any sense. Mm-hmm. High [00:08:00] salt or blood volume enhancement, or even beta blockers made more no sense. They use oftentimes beta blockers in the pots to slow the heart down, and my heart was racing, especially when I was vertical.

I had what Mayo called a flaming case of pots, and I said, okay, can you gimme a list of the things that would cause a racing heart like this? I said, no. We don't know that. I thought, well, why don't you know that cardiologist? Don't you like learn the things that would cause you know this? No, we don't really know that.

We just can slow it down. And that just didn't seem like the right approach because I was sick from head to toe. Mm-hmm. I said, can you ignore the heart rate? That's the least of my worries. Everything else that's making me disabled. You know, a fast heart rate isn't gonna make you disabled. I said, no, because you're labeled.

So we have to focus on the heart

very frustrating. Yeah. So had to go it alone. [00:09:00]

Adam Rinde, ND: Yeah. So it's, you know, it's interesting when something doesn't fit within those organ systems that conventional medicine has defined, you know, say cardiology, gastroenterology, neurology. You have a condition that overlaps multiple specialties and it's, you know, more of a functional, systemic, systems oriented problem, I should say.

Right. How did you. Go developing the framework, how did it start and, and obviously it ended up becoming, you know, sort of the Driscoll Theory and I'm just curious that process of Yes,

Dr. Diana Driscoll: The Driscoll Theory, which by the way, I will share that with. Anyone who wants it, that is absolutely no problem. Happy to do that.

I first put that out in, what was it, 2012. So we've moved far beyond that, but I think it's still at the forefront for, for most people. But one of the first things I figured out was, again, just. [00:10:00] Personal experience. One issue with, and that's the majority of patients, uh, diagnosed with POTS, is there's a propensity to develop high intracranial pressure that is treatable.

And as eye doctors, that was one area I was fairly comfortable with, but it doesn't exhibit as what we would typically see as eye doctors. We usually look for a swollen optic nerve. It doesn't exhibit called papilledema. It doesn't usually show MRIs. Sometimes will give hints of that, but not always. So idiopathic intracranial hypertension without papilledema is a thing, but as clinicians –we forget about it. And as patients, we go to doctors so incredibly ill and they're not necessarily tuned into those symptoms. And the number one symptom we see with that is more neck tightness, discomfort at the base of the skull. Not so much headache as we learn in school. [00:11:00] So, but figuring that out and treating it was like.

Thank God that helped. So that, that was hugely helpful. And IIH when it occurs, it's always a secondary problem. Okay. It's a significant one, but something's still driving it. And then as an eye doctor, I thought we can't all be having normal blood work. You know, everything looks good and be this sick.

Where could we look in the body to help figure this out? So my comfort spot, Adam was in the eyes, right? So one of the first studies I did. Was gathered a bunch of patients and a bunch of age match normals, and we did all these ocular tests on them. I was the blinded doctor, meaning I was presented with images of the back of their eyes, uh, patients or, or not patients.

And I wasn't told who is who, and I had to guess. Who's a patient who's not. I had [00:12:00] no idea what to look for, so I just considered everything. I thought, okay, well this is a little weird. I guess as an eye doctor, we wouldn't call it, I'd probably blow right past it, but I started to see patterns and those patterns were a huge clue into some of the problems.

The patterns included some irregular optic nerve margins. Perhaps suggesting mild idiopathic intracranial hypertension, that possibility. The other one was the vasculature and the eye, of course, is the only place in the body we can look directly at blood vessels. We don't have to look through tissue or anything, and I was looking very closely.

And there is a tendency in the patients to see the arteries. Were a little bit smaller. There is premature atherosclerosis, plaque formation, even like children with pots. And the veins tended to be larger. And importantly, the caliber wasn't always [00:13:00] smooth. It was irregular. And ultimately I was able to figure out that's mild fibrosis or scarring.

Could patients with POTS be subjected to chemicals throughout the, the bloodstream that's damaging the vascular endothelium? And if so, what? What the heck is that? And then what other problems is that causing, et cetera, et cetera. So. Quite the journey, but those were two very important things to figure out.

Adam Rinde, ND: Wow. That's such an amazing connection. And the fact that it, you know, landed in your area of specialty. Yeah. You know,

Dr. Diana Driscoll: would you call that luck?

Adam Rinde, ND: I don't know what to call it.

Dr. Diana Driscoll: I don't need, I thought maybe Divine Intervention.

Adam Rinde, ND: Yeah. I always say, you know, sometimes we choose our specialty and sometimes it's chosen for us.

You know,

Dr. Diana Driscoll: isn't that the truth? I definitely.

Adam Rinde, ND: Yeah, so at that [00:14:00] point, that's such a big piece of this puzzle. Your work bridged into the vagus nerve from there. But before we go into that, I just curious like. You're not feeling well, you're trying to save yourself. You're also help trying to save patients and you know your son. And what's the emotional toll like at that point of your life?

Dr. Diana Driscoll: That is such a good question. I think one of the hardest things about this condition, frankly, is the lack of validation. Patients receive. I couldn't believe that I could be that sick and be told, oh, maybe it's your hormones, or maybe you need to meditate. You know? Or maybe you're just more aware of your own body .You've got too be kidding. It was so dismissive and to not have other people [00:15:00] understand why you can be so sick. Every system of the body, it would wax and wane at least initially a little bit, which really confounded people. But I didn't have someone I could lean on say, oh, I get it. You know, this was really bad. I tried to go on forums for pots.

Those are brutal. Um, because everybody was sick. Nobody was really getting answers. And then our brain starts to be affected. You have these short tempers and things would flare, and I thought, I think I'm just getting sicker being around this. That's not a good option. Mm-hmm. But I look back on that now, Adam and I see that.

I was probably necessary because if I had had someone I could have leaned on, I would've just leaned and I think someone could have been with me 24 7. It would not have been enough. Mm-hmm. [00:16:00] So instead I was forced to just basically buck up, suffer through it. Try to keep my wits about me, use my brain. To try to figure it out because I had no one else to lean on.

So again, one of those things, I may not have chosen to do that, but that was the situation I was in. And if it hadn't been just that situation, I don't know that I could have gotten there.

Adam Rinde, ND: Yeah. Also see if you agree with this, but I mean, when you have a child that's also going through something, there's some magical strength that you, you find it's like a different gear that you didn't know you had.

I don't know if you experienced that.

Dr. Diana Driscoll: Oh, absolutely. We can feel weak and scared, et cetera, but we can't present that to our kids. But my son came to me when he was about nine years old and he said, you don't understand, mom. I don't think I can go one more day. The [00:17:00] suffering could be so intense. Sometimes it would come in these waves.

I call 'em episodes, and I as an adult, could barely get through those child. But at that point, we had no answers at all, nothing. And all I could do is validate him and tell him, I know he is suffering, and this is really bad, but I'm gonna give it everything. I have to try to figure this out. Figure out what happened to us and what we need to do to get healthy again.

And that was enough for him to give him peace to just keep going, but a terrible position for patients. And I recently set up a Patreon account called Pots Rebels that. We meet every week or two on Google Meet so we can actually talk. And I want it to be as a source of support. It's a safe place. There's no wacko science in there.

And the patients can have that reassurance from, you know, a recovered patient too. I would've loved to have talked to someone who actually recovered from that beast. So it is [00:18:00] a, a terrible place to be. This should not be happening. There is no reason it would take an optometrist from Texas. You know, I figure some of this out, but it's very complex and every case is different, making it harder.

Adam Rinde, ND: Mm-hmm. So, well, thanks for sharing that. Obviously like the, you know, you wouldn't choose it for yourself at the same time, you know, I'm sure the reward that you've had for helping lots of people and helping people, uh, get through this and educate people, um, has been, you know. Substantial. So

Dr. Diana Driscoll: it is, it's a passion too now because as soon as I talk to someone going through it, those memories of how horrible it was, just come rushing back and you wanna do anything you can to help them outta that and it takes time.

It's difficult. So to be there to support while they work through it is, yeah, that's what I'm here for.

Adam Rinde, ND: Great. Well let's get into some [00:19:00] of more of the mechanisms of. What's going on with pots? I mean, from a high level view. Before I had mentioned I wanted to get into the vagus nerve connection. Mm-hmm. I think that's such an interesting topic, but from a high level view, just kind of diving into the mechanisms of pots, like what is it like and what, what's the initial push?

Dr. Diana Driscoll: Yes. And that's a big question, but I, I try not to, to miss out too many important points. First, I think POTS is a problem because it's not a heart problem. It kind of implies that it is. And I think disorders affecting the autonomic nervous system are bigger than just the people who meet this arbitrary criteria.

Pause, right? So. Right now, I think the criteria is like heart rate needs to go up 30 beats a minute on a real till table test over 10 minutes for a certain age group, blah, blah, blah. And someone just [00:20:00] chose that number out of the air, I guess, you know, which makes no sense to me. 'cause I think instead we should be thinking bigger and look for patients who tend to develop a fast heart rate upon standing and present.

With the patterns of illness that we see. Mm-hmm. And that's where the diagnosis comes in. So there are commonalities among patients and you know, the commonalities among POTS patients are. Kind of similar, if not the same to some of these commonalities. In the Me/CFS world, I studied fibromyalgia, PTSD, which is interesting, mild traumatic brain injury, autism spectrum.

We see this family of quote, invisible illness and they fit certain patterns. To me, that tells us this is where we need to start looking, and one commonality that I think is very important is the commonality of. Could the patient be having fast heart rate [00:21:00] or a tendency for fast heart rate because the heart is reacting properly to a stimulus, and the stimulus could be an inflammatory stimulus.

For example, if we get the flu, doctors know to look for tachycardia to help them diagnose the flu because it's a, it's a proper, if you will, response to the heart to some of that inflammation. So think of something like the flu. It doesn't really go away. The inflammation continues, the heart continues to react, and then what happens to the rest of the cardiovascular system, vascular being important, and then what other systems fall down from that?

So inflammation is a huge, huge problem. That it's very difficult to diagnose because the traditional markers for inflammation, CRP, SED rate are oftentimes perfectly fine. Mm-hmm. And as practitioners, we learn in school that if those [00:22:00] markers are fine, the patient doesn't have inflammation and that is wrong.

So again, one of our first studies was a complete panel of inflammatory cytokines. I just had a feeling that. Inflammation was going on, and I think this is kind of the patient feeling that you, sometimes you just have to listen to your intuition. Mm-hmm. When I was sick, I was taking ibuprofen a lot, and somebody asked me why I was doing that.

I said, I don't know, I just feel like I need it.

Adam Rinde, ND: Mm-hmm. I

Dr. Diana Driscoll: put a pillow behind me in the car and somebody said, why do you have that? It's like. I don't know that either, but I was a feeling I had and I looked at this panel result. For patients, and some of the markers were like crazy high. Mm-hmm. Like 20, 30,000 times normal.

Their CRP or Sed Rate was fine. And I thought you can have some forms of chronic [00:23:00] inflammation. Those markers aren't picking it up. So where do we start with that? Right. A huge, huge question that that is one commonality.

Adam Rinde, ND: Mm-hmm. Mm-hmm. So with the. The heart rate being more of an adaptive, maybe a regulatory shift in response to inflammation.

Right. So did you find anything peeling back further the drivers of that inflammation? Whether it's, I mean, I know that the viral etiology has been well explored. Um, is that where you landed?

Dr. Diana Driscoll: No, and I think we have to be real careful and we teach our, our people, you know, at POTS Care, our inclination is to look at the trigger, you know, be it viral or mold or Lyme or whatever.

But that's not the problem. The trigger's usually [00:24:00] gone, but instead look at the body's abnormal response to it. Mm-hmm. And that is what is persisting. So our work focused on everything from genetics to it to did it lose the neurological control. And that's where the biggest nerve came in. What receptors are on the heart for certain inflammatory chemicals.

So just starting with antihistamines, frankly helped to block that one chemical. Mm-hmm. Helped. 'cause we knew the vasculature was affected and the histamine one receptors are on the blood vessels, and then histamine, two receptors are in the gut and interestingly on the heart. So blocking that also helped.

But again, just kind of a start, the vagus nerve is the nerve that normally would control inflammation, and it was becoming obvious that something was up there. I, I certainly was not atypical in developing constipation. It went to full on gastroparesis. [00:25:00] I had intermittent diarrhea, which I was really excited about because at least it would relieve the constipation, and my gallbladder failed.

I mean, it just failed. They said the ejection fraction was almost nothing. They wanted to remove it, and I said, okay. Tell me about that. You know, is it infected? Like an appendix? Is it about to blow? You know? And I said, no, it looks okay. I said, is the opening stuck? Maybe something's blocking at a gallstone or something you can't eject.

And I said, no, the opening looks fine, but this sounds neurological to me. If it's neurological, if there's any way I can fix this, I'd like to keep that organ. I love cheese. Life is easier with a gallbladder, and I remember how upset the doctors were. It turned out to be a smart move. My gallbladder works great, but that was the neurology speaking.

Yeah.

Adam Rinde, ND: Yeah. I love how you point out that the trigger is long gone, [00:26:00] because I think that's often a confusion in people who. Think of this concept of treating the root cause, and yes, that term can get distorted and lead people down like an ureachable target. So I think that's really great. And you're looking at sort of the, the secondary aspect of the, whatever the initial shift was, and then also looking at points of leverage where you can actually shift and help the body restore balance, which I mean, that's very action oriented and, you know, give us, give us some tools to work with.

Right.

Dr. Diana Driscoll: Well, it made sense to me. Again, it's just the position I was in. My kids were sick and they didn't get the same virus I got. My son got two regular old viruses, you know, at school that everybody else got. Each one knocked him down further. [00:27:00] And my husband at the time was fine and he went through illnesses just like the rest of us.

So I thought we are responding differently. You know what? What is that about? So, yeah, it's very easy to focus on infection, and I think it's important to remember when inflammation goes up, the immune system tends to go down and dormant viruses show up. Like my Epstein bar was through the roof and I remember thinking, this is the cost of the illness.

And the doctors saw that result and remember them saying, I don't think so. I thought, why would it be so freakishly high? You know, if that wasn't the cause? No, they were right. That wasn't the cause. But we can see every dormant virus show itself. Again, we know from the research in chronic fatigue syndrome that if we approach it with just purely an antiviral approach, they don't recover.

Right? That's not the way to approach it. If we approach it from the inflammatory side, those dormant viruses take care of themselves. Without [00:28:00] any help from us.

Adam Rinde, ND: Great.

Dr. Diana Driscoll: Yeah, so the way the body's meant to take care of it.

Adam Rinde, ND: So with the vagus nerve being involved, it would be great to hear your take on the way the vagus nerve plays a role in inflammation balancing.

Dr. Diana Driscoll: Yes. Well, that wasn't my research on figuring out the inflammatory effects of the vagus nerve. Other people figured that out, which was great in the late nineties or so. But at the time I was thinking, could the vagus nerve be damaged? It's very easy to damage it. It's so long. You know, it goes from the brain on the neck.

I was thinking, was it compressed at the neck? I had abnormal blood vessels pushing against him. Maybe. It goes into the chest and into the abdomen anyway, along that route, it can become damaged. So what I did was I sent out symptom checklists and I did this over five years, and I sent them to chronic fatigue [00:29:00] patients, pots, fibromyalgia, and PTSD, and I put, oh, I think it's like 150 symptoms.

In those symptoms, I talked about 35 symptoms of anticholinergic poisoning or syndrome, and the majority of patients had the majority of those symptoms. They would wax and wane 'cause they hadn't been poisoned, right? But it clearly indicated the problem wasn't likely the vagus nerve itself. It was a bigger problem.

It was a neurotransmitter problem and it was affecting cognition. It got so bad for me. I couldn't stay awake. Even I went from severe insomnia for years to severe, basically narcolepsy.

Adam Rinde, ND: Mm-hmm. I

Dr. Diana Driscoll: was awake hour and a half, maybe in the morning, hour and a half at night, and I was struggling during that time.

And then you can see with patients, the pupils get bigger, they get much more light sensitive. Ultimately their eyes get dry and [00:30:00] that's not vagus nerve. That's acetylcholine. So we were dealing with something that was affecting the neurotransmitter, and then I had to kind of pick through that problem, right?

I thought, if we have a problem with that neurotransmitter, how can we help? You know? Or some people could have a damaged vagus nerve. For any reason, infection, trauma, whatever, you know, how could we help them too? And I was forced into having to figure it out because the gastroparesis I had went to 100%. I could not have a bowel movement.

And it had been almost two weeks I'd been to the emergency room. I went to a, a surgeon, every doctor that I thought could maybe help me, I tried everything over the counter. I was getting to the point where I say I was gonna blow up, you know? Oh, wow. And that was actually a necessary part of it, because ultimately I was forced into figuring it out myself.

And I thought, okay, if this [00:31:00] is. A problem with that nerve, do the receptors of the nerve still work? And I remembered in optometry school, learning these nerves and taking notes because that was a total key. Remembering there's two parts to that nerve. There's the long pre ganglion portion and there's a gap.

Or synapse. Now there's a tiny post ganglion nerve, and I remembered the instructor saying the post ganglionic nerve, it's so small, it's almost a part of the organ itself. I thought, as far as I know, even if I damaged my nerve, I should hopefully still have that post ganglionic nerve. Could I stimulate it?

So I remember the neurotransmitter is acetylcholine. I thought, okay, that's not a drug. I can't use that. The body breaks it down. What is the agonist or mimicker? We also learn agonist to all these neurotransmitters in school. You go, well, that's easy. The vagus nerve is the nicotinic nerve in the body. [00:32:00] The agonist is nicotine.

So I got a nicotine patch and I put it on my abdomen. Had a bowel movement. I was like, what? You know?

Adam Rinde, ND: Mm-hmm.

Dr. Diana Driscoll: Had one the next day and the next day, but in a few days, um, it was so inflammatory. It looked like I was being eaten a lot by fire ants. I couldn't continue that. And then learning that it was a bigger problem was the neurotransmitter problem.

I said about trying to create a supplement 'cause I didn't wanna have to wait for a new drug. Mm-hmm. You know, that would come together in just the same way that nicotine would do and stimulate that post ganglionic nerve. Right. But it would also cross the blood-brain barriers for acetylcholine, for the brain.

It covers for every. Genetic defect in the acetylcholine pathway, and I'm very proud of that work. That that is my y speaking. It had to be already approved by the FDA as the ingredients had to be, uh, safe, and I [00:33:00] wanted to make sure that the eyes responded because the pupil size and the tear production is not a nicotinic response.

That's a muscarinic receptor – Nicotine won't help with that. Right. So came up with what's now ParaSym Plus, which has been a godsend for people. And I never wanted to get into this supplement industry. I never did. It makes it sound like you're snake oil salesman. I was just at home making up for my kids and I for years.

And the reason I decided to put it out there was there was, once I stopped it, I developed pancreatitis and that's potentially severe. Hmm. And it reversed it within days that we've gotta get word out. But again, a bigger problem than biggest nerve nicotine is a very poor choice for treatment. It was great for me for diagnosing the problem.

And looking to see if the receptors were still viable, but it's, it's a, it's more of a global issue. [00:34:00] So, and until I could figure out what the heck happened to the neurotransmitter, at least I could put it back. Was, and we could keep the neurology working and the organs responded, which is a miracle. You know, the gallbladder came back, my pupils got smaller.

We can show that to patients that in a couple days they can see their pupil size change, so they know they're on the right track, they're hitting the right receptors. It's just a matter of time. Interesting. Yeah.

Adam Rinde, ND: That brings up the genetic piece because. It seems to me, from the patients that I've cared for, there seems to be a body habitus.

You know, whether it's a hypermobile body or a body that, um, has collagen related issues. That's just from a. My view, I seem to see that thread. I'm curious where you've landed with your research genetic wise, and since you know this [00:35:00] also affected other family members, you know what, what you've learned about the connection.

Dr. Diana Driscoll: And I will say, um, having had POTS CARE now for like nine years, about 40% of our patients are hypermobile. Hmm. And the body habitus you talk about is, yeah. They kinda look like me, tend to be fair skin, fairly tall. Bones are a little thin. That's, we just have a certain look. And the Driscoll Theory initially was put out as, uh, what is the reason for pots in EDS.

Because when I was told I was hypermobilie, um, and it was at Mayo, they looked at that, they said, oh, well this is Ehlers Danlos Syndrome, or EDS it's a genetic disorder of connective tissue or collagen. I said, oh, okay. What Gene is that? You know? Oh, we don't know. I was like, what do you, what do you mean you don't know?

Yeah, we can't seem to find that. I'm like, okay, how do we know it's a genetic disorder of connective tissue? Then [00:36:00] should we be keeping our minds open to the possibility it's a genetic disorder of inflammation and that inflammation is weakening the tissue? Or could it be both? Could a patient have a gene setting themselves up for.

Slightly poor structure and poorly regulated inflammation. If so, what is the treatable aspect to it? It's not changing the gene, it's locating and treating the inflammation. So, um, although we've been deeply at work for picking out these genes, patients don't have to wait for that. Okay. They instead need to direct themselves toward what type of inflammation are they dealing with and treat it.

Adam Rinde, ND: Mm-hmm.

Dr. Diana Driscoll: Right. I'm still hypermobile, I'm not, I'm not sick. I certainly don't have POTS nor do I ever plan to have that again. My kids are not sick. I'm not quite as hypermobile though. What happened when I got sick, and I, I hear this [00:37:00] from other patients, I got looser. And what was happening is this inflammation surged and it was kind of eating away at the tissue, so it ultimately caused pain too.

So the perception for hypermobile patients by other practitioners is a horrible one. They see us as weak and whiny. You know, hypermobility itself shouldn't cause pain, and they're right. It shouldn't. Inflammation does and tissue when it's getting destroyed, absolutely should. So our focus should be on locating that, and that's where it is a little bit tricky because everybody is different.

But again, commonalities. So I'd say first, get the vagus nerve working. That's your anti-inflammatory nerve. That'll help, you know? Mm-hmm. And we encourage people to look at signs and symptoms of high intracranial pressure because treating that is. Oh my god. A godsend.

Adam Rinde, ND: What are those?

Dr. Diana Driscoll: Oh, it initially starts or [00:38:00] usually a starts as dizziness.

Okay. Which is pretty much across the board, but then you get like this discomfort at the base of the skull.

Adam Rinde, ND: Is that the coat hanger?

Dr. Diana Driscoll: Yes.

Adam Rinde, ND: Pattern coat hanger pattern

Dr. Diana Driscoll: a hundred percent. The muscles get tight. I was fine and it wasn't pain for me. I felt like I just had a bad pillow. I went through. 30 pillows.

I'm not exaggerating. I had a girlfriend who was just determined to help me. She just brought over pillows every day and I just kept trying them out. And then if it gets bad enough, you can develop headache or vision changes. I had persistent nausea and it wasn't like I was tossing my cookies. Praise God I wasn't.

It felt almost like I was pregnant. Just this low underlying nausea that most doctors would see that as gi, 80% of it was the high pressure, and then other things were basically invisible. It was starting to flatten my pituitary gland a little bit, and the pituitary glands, the master hormone [00:39:00] gland. So then some of that gets wonky, right?

Dramatic insomnia is very common. When intracranial pressure goes up, it activates that sympathetic nervous system. It wants to wake you up. Something's horrible is going on. I can't breathe. You know, the brain is suffocating The. You can't sleep with that. At least I couldn't. I could. I could be awake literally for days.

Even with sleeping medication, they had trouble anesthetizing me and every time we hear of a patient who doesn't do well with anesthesia, like they can't be put under easily, I think about that and wonder could they have high intracranial pressure? Mm-hmm. They wanted to put me under for a procedure and the nurse came up to me and she said.

Diana, I could put the entire wing of this hospital under with what I have given you and you are sitting up talking, you know, what the heck? And she said it like it was my fault. I, I told her, well, you're the expert here. You know, you [00:40:00] figure it out. I can't tell you why I can't be put under. That was part of it.

Said that sympathetic overdrive is is tough.

Adam Rinde, ND: Wow. That is a podcast in itself. You know, it's, uh, really fascinating and the nuance of picking that up clinically is, you know, requires a, a lot of skill, I'm sure.

Dr. Diana Driscoll: It wasn't easy for me, and I'm an eye doctor. We're trained to recognize it, but what we learn is not what we see clinically.

Adam Rinde, ND: Mm-hmm. We

Dr. Diana Driscoll: learn to look for headache, do a lumbar puncture. Don't do that. You know, patients are more prone to spinal leaks or Chiari or you're just asking for trouble. Um, there's pap edema. We don't see that. So what we learn in school is not what we see in clinic. Mm-hmm. In clinic, we look for that Coat Hanger

Mild nausea, insomnia.

Adam Rinde, ND: Yeah. So with the just called protocol, just briefly, I'd love to just hear the overview of the [00:41:00] pillars of the, the approach and, and where people can kinda learn more about your framework.

Dr. Diana Driscoll: Yes, and I'm so happy to share that. And thank you for asking about that, Adam. I'm at pots care.com in the Patreon account where we started, pots Rebels.

I'm putting everything I can find in there and then we need, and that's rewarding for me and I think for them too, but I don't have a protocol per se, for treatment. Mm-hmm. In fact, I don't even like those words. Yeah. When I hear a protocol for some invisible illness, I go, okay, that can't be right. Yeah.

Everybody is so different, and even my kids and I were different, and they were different from each other. Having said that, everyone's different, but the commonalities are a decent place to start, and most of those are in the Driscoll Theory. Like the propensity developed, high intracranial pressure, the vagus nerve problem, which is actually a neurotransmitter problem, [00:42:00] and the vascular irregularities, which is like a systemic attack, and that'll usually get people started.

So ParaSym Plus is hugely helpful. The inflammation, no matter what type of inflammation people are dealing with, they don't have to know the type yet to get some help. Mm-hmm. If it's affecting the cardiovascular system, it likely involves histamine and it's not a histamine problem. It's an inflammatory problem.

Mm-hmm. But inflammatory cells of many types kick out histamine. And if you have inflammatory pots, you wanna block that while you work through that, at least with Zyrtec is great for the blood vessels. You don't wanna stay on Pepcid AC for a long time. Mm-hmm. Because that can be problematic. But that's a good start.

ParaSym Plus I mentioned, and then all inflammatory patients deal with oxidation. And the oxidation worsens the inflammation. It affects the blood vessels, ultimately the organs. And it [00:43:00] changes our brain chemistry. Mm-hmm. Where we get more anxiety type symptoms and it can exhibit like anxiety. Or it can exhibit like this almost OCD, attention to detail.

We're high achievers, we're at the top percent of everything we do, but it can get to the point where we can't function with other people. You know, we expect people to have the same level, you know, of, of detail orientation we do. And that's just not realistic. Or patients will end up trapped in their homes or.

Unable to make a phone call or whatever. You just can't do that. I got to the point where I remember thinking I was a successful doctor with many offices. You know, I handled stress out my wazoo. I couldn't order a pizza, you know, that was just stressful, and the inability to handle that was dramatic. So one of the supplements on TJ Nutrition is NAC Max, which I figured out how to increase glutathione on the brain [00:44:00] and throughout the system.

Recycle the glutathione that you produce and I just carried that bottle around with me while I was recovering.

Adam Rinde, ND: Mm-hmm.

Dr. Diana Driscoll: I felt kind of buzzy, adrenergic. I just took more and that helps break that cycle of inflammation. Keeping the vagus nerve working, address the, the oxidation control, at least the histamine a decent start.

Adam Rinde, ND: Well, that's a really good foundation. I'm sure there's many offshoots and personalization from there.

Dr. Diana Driscoll: Doggone, I think as doctors we would love to just have a label bill and we don't have that.

Adam Rinde, ND: Yeah. I, I feel like, you know, the benefit of, you know, sort of the framework or the protocol for some people is at least gets them into the right area of thinking, but they definitely need to work with someone who understands the nuances.

'cause you know. People generally, it's not a straight line, and you need someone who's seen [00:45:00] things go awry and helped support you. So yeah, I figure we could finish up our conversation by just hearing more about, you know, what people are experiencing, you know, in your Patreon group. And then also just a take home message for people.

Um, you know, if they're, if they're home and needing, you know, needing a little inspiration,

Dr. Diana Driscoll: uh, absolutely understand that. And I think. Hope is such a powerful thing, right? But hope without reason for it is meaningless. In my book, it's kind of like getting a label of POTS. Oh, yay. No, that was meaningless, you know?

So, but hope for a reason is very important. And at Patreon we're releasing the information we're talking about and tox some patients through it. But I want everybody to know there's always a reason for illness.

Adam Rinde, ND: Hmm,

Dr. Diana Driscoll: right, and then you may not have all [00:46:00] your answers at once. Most people don't. You certainly might not have them all today, but it doesn't mean there aren't answers, so never give up.

I don't know that anybody got sicker than I did, and I probably should have died five times over. Honestly, I was just figuring things out just in time. So never give up hope. There's always another side to it. And stay in the science. I do see a fair number of patients, as you mentioned, kind of going down tangents, which we all have to go through 'em, but if you go down a tangent, it's not the answer.

Don't stay on that tangent, exit it, and move on to something else. Mm-hmm. Because you're not there yet. It shouldn't be that hard. Right. But yeah, there's always a reason for illness and even if the doctors don't understand it, doesn't mean there isn't a reason for it.

Adam Rinde, ND: Mm-hmm.

Dr. Diana Driscoll: I feel very fortunate in that I see research facilities [00:47:00] moving forward, and COVID has kind of helped with that.

Some of the inflammatory thing, the vagus nerve thing, which really isn't the vagus nerve thing, the vascular problems, et cetera, but it is still. So slow. It's painfully slow and patients can't wait for that. I was lucky I could move very fast because I was independent. Mm-hmm. I didn't have to work by committee, you know, I didn't have to wait for grants or whatever.

I just used my disability, uh, income. But patients who were waiting for the major institutions to come out with it, I think are gonna be sorely disappointing. We have to move faster than that. So I'm doing everything in my power to push things along. Quickly 'cause patients need it today.

Adam Rinde, ND: Well, thank you so much for being here.

This was really interesting and such a well thought through understanding of, you know, every, everything you've learned and pieces of what you've learned. And it was just great to hear how [00:48:00] your mind works. And it's really refreshing to see how clearly you think through processes and really gaining an understanding of mechanisms as much as you can.

'cause you know, those are the things that feel solid. You know, when we're thinking through these complexities is mechanisms right? We, we understand mechanisms and pathophysiology. It's like things open up. Answers open up.

Dr. Diana Driscoll: Yes. And things have to make sense, right?

Adam Rinde, ND: Yeah.

Dr. Diana Driscoll: I just wasn't willing to leapfrog the making sense part.

Adam Rinde, ND: Exactly.

Dr. Diana Driscoll: Yeah. So that is how my mind works.

Adam Rinde, ND: Well, I really appreciate that and thank you so much for being here.

Dr. Diana Driscoll: Thank you for having me now. It's hugely important that we spread word and help so many people are sick needlessly. It's really, really needs to change, so thank you for your work in doing that.

Adam Rinde, ND: Thank you so much for tuning into this week's episode of The One Thing Podcast. Please share these episodes with your friends, [00:49:00] loved ones, colleagues, patients, healthcare providers, anyone who you feel might benefit from hearing these informative interviews. We tend to learn best from people sharing things with us.

That's often the first time it's introduced, so don't hesitate if the content of these episodes reminded you of someone that might benefit from it. Forward the episode to them, and I'm sure they'll either appreciate it or be appreciative that you've thought of them. So once again, we'll look forward to seeing you next episode on The One Thing Podcast.

And again, much appreciation for you being here with me.