173 - Diana Driscoll - Healing PoTS and Dysautonomia: From Patient to Pioneer

Dr. Diana Driscoll shares her remarkable journey from bedridden POTS patient to pioneering medical researcher developing treatments for autonomic dysfunction. Motivated by her own ten-year battle with post-viral dysautonomia and her children's similar struggles, she created patented solutions when conventional medicine offered no answers.

• POTS is not a disease but a presentation of symptoms related to inflammation affecting the cardiovascular system
• Dr. Driscoll's "Driscoll Theory" identifies high intracranial pressure as a common factor in POTS and dysautonomia
• Her research uncovered neurotransmitter deficiencies, particularly acetylcholine, leading to the development of Parasym Plus
• Inflammation creates oxidative damage, worsening symptoms and creating a vicious cycle that must be broken
• Many POTS patients show signs of blood vessel leakage and blood-brain barrier disruption
• Female patients often face additional challenges due to hormonal fluctuations increasing inflammatory responses
• Recovery requires consistency and understanding your personal inflammatory triggers
• Patients can maintain recovery by being proactive about their health and recognizing early warning signs
• Genetic factors influence inflammatory responses and understanding these can prevent relapse

Parasym Plus Info

www.drdianadriscoll.com

www.potscare.com

www.vagusnervesupport.com

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Chapters

• 1:50 Meeting Dr. Diana Driscoll
• 4:12 A Patient's Journey to Discovery
• 10:24 Understanding POTS and Dysautonomia
• 18:37 The Inflammation Connection
• 24:22 Developing a Revolutionary Treatment
• 36:31 The Path to Recovery and Maintenance
• 50:13 Final Thoughts and Future Research

Transcript

Jackie Baxter: 0:55

Hello and welcome to this episode of the Long Covid Podcast. I am absolutely delighted to be joined today by Dr Diana Driscoll, so she's going to introduce herself a bit more in a moment, but we're going to be diving into POTS and dysautonomia and how this relates to Long Covid, and Diana is going to share a bit about her own story as well. So a very, very warm welcome to the podcast today. I'm so excited to meet you.

Diana Driscoll: 1:23

Thank you for having me, Jackie. I'm excited to be here and I have enjoyed chatting with you too. Post-covid is a deep interest of mine and a personal experience of mine. We'll chat about that. So I'm so happy to help others through this beast of a condition.

Jackie Baxter: 1:41

There's always a way out of it yeah, yeah, that's what we want to hear. So, um, before we get kind of really stuck into this, can you just say a little bit about yourself and what you do?

Diana Driscoll: 1:56

such a I am an optometrist by education but I don't do routine optometry anymore. But I'm the clinical director of POTS Care at potscarecom and I'm president of Genetic Disease Investigators. It was a corporation I set up to look into the genetics of some of these conditions, so those keep me busy. I also started a supplement company where at VegasNerveSupportcom years ago when I started to write patents on some of this. So what I was discovering was new to everyone and I felt like I need to put this on paper somewhere if this is really new. So it's been. I've gotten my fifth patent now, which is amazing to me, but it's been quite the journey and, as you and I mentioned, I got thrown into this. I didn't want to get thrown into this.

Diana Driscoll: 2:55

I went kicking and screaming as a patient and I didn't have COVID, but I was a post-viral dysautonomia or POTS patient and there weren't any answers out there. I was disabled over 10 years and both of my kids ended up sick. My son got sick. He was eight years old and he missed over three years of school. We went everywhere for answers. I was even in clinical trials at our major research institution for three years and their conclusion was that POTS dysautonomia patients were perfectly normal. We were just more aware of our own bodies. I was so upset that I decided okay, I'm going to figure this out, if there's any hope in getting answers.

Diana Driscoll: 3:47

I have the advantage of being in the body of one. I have children affected. I'm certainly motivated. I have medical education. I can start with the eyes. We don't have to end there, but maybe there's a chance we can figure some of this out. And it took many years. Many layers, patients are different, and once I got answers for my case answers for my kids cases then it came to what research could we do to help others? What else could happen to pull people into a similar situation? Pots to sodomia and continue to tweak it and then opened up pot scare years later. So amazing.

Jackie Baxter: 4:33

I mean, we were joking kind of just before we started recording, weren't we, about the lived experience being the qualification that you can't buy. You know you and you know we were. We were kind of joking, but you know there's a lot of truth in that as well. You know that lived experience is so important.

Jackie Baxter: 4:53

I think maybe particularly in these kind of you know you call them maybe invisible illnesses or misunderstood illnesses. But you know a doctor or a person who doesn't understand what it feels like, finds it very difficult to understand sort of fatigue, for example, you know, not just tiredness, it's not just that you're feeling a bit knackered after a long day. It's sometimes for some people, that inability to even lift your head up and for someone who hasn't experienced that, that can be quite difficult to understand. And I think a lot of the sort of I know feeling of chaos in the body, that again is quite difficult to understand. So I don't know. It's, yeah, you know, maybe something of a silver lining or certainly something that you can't get any other way and, honestly, maybe it was helpful yes, no, absolutely.

Diana Driscoll: 5:47

I think I would not have understood this condition had I not lived it. So I looked at the lack of validation I got from the doctors I saw and I came to realize it's not like they were being mean or ignorant. They really. How would they know unless you have lived through it? You just can't know the misery and we don't really have good vocabulary to describe a lot of it. I was asked things like how much pain are you in? And initially pain wasn't the real problem and I'd I'd say, well, it's not like a matter of the pain being off the charts, it's the misery of it, and I don't know how to describe that. And it was just head to toe. There was nothing that was unaffected. And then they start to think there's no way all systems of the body could be affected. Then they give you that look, you know, oh, maybe you're one of those and you just lose validation and it was incredibly frustrating. So only by walking away from all the traditional treatment evaluation did I have a chance of even getting answers.

Jackie Baxter: 6:55

Yeah, which was tough yeah, and I think that's a really good point. The vocabulary isn't good or certainly doesn't help with the understanding of things that you haven't experienced. You know even something like brain fog, for example. You know almost sounds kind of funny, but you know people who have experienced brain fog. You know I don't think there's anything remotely funny about it. And even the long COVID label, I mean you know this is probably not's anything remotely funny about it. And even the long covid label, I mean you know this is probably not a debate we want to wade into, but you know long covid is so many different things that you know it's maybe not dismissive of the condition but it's certainly not particularly helpful in terms of the diagnosis. So yeah, you know it's a challenge, isn't it? You know the sort of vocabulary around different aspects of it, which is very, very interesting.

Diana Driscoll: 7:49

Yes, and I think it's when I see patients and I pick apart these extraordinarily complicated cases and present this long array of this happened, then this fell and this you know this flow chart, if you will and, ta-da, this is what happened. What I hear is I just can't believe I get to talk to somebody who recovered. So, yeah, being able to relate to them is significant, and I don't know that there's another practitioner out there who can do that, so it's, it's incredibly rewarding to be there for patients yeah, I mean, yeah, I get the same.

Jackie Baxter: 8:30

What you recovered, you know, and for me, like the first person that I spoke to had who had recovered, suddenly it was like you can recover, okay, you know. So it totally changed my perspective on the whole thing right it didn't happen quickly and it wasn't fun and it wasn't linear and you know it was all of that. But you know, it sort of made me think, okay, it's worth doing some of these things, it's worth committing to you know whatever it was searching for some of these things.

Jackie Baxter: 8:59

It's worth committing to you know whatever it was searching for some of these things and it helped me kind of mentally to pull myself out of some of the darkest points because I knew that, you know, other people were recovering, whereas up until that point I'd never even heard that someone could um, so I, yeah, I think that has a huge, huge value as well. So, speaking of language, pots, dysautonomia long COVID. Can we dive down into what is POTS, what is dysautonomia? Demystify that a little bit for people.

Diana Driscoll: 9:42

Yes, and I think when we're dealing with the long COVID population, we don't have to dig too deeply into the many different forms of dysautonomia, because that's not what's happening. You know, things like neurological disorders, like ALS or something that can present initially with dysautonomia. That's not what they're dealing with. But when I got sick, being post-viral, and we look back now and assume it was a SARS virus I was with a group of people in Costa Rica and we all got sick and all of us ended up at least in the emergency room. We just couldn't breathe. It was horrible, it was hard to pull out of it and we're very familiar with post-viral dysautonomia or POTS. And when COVID came along I said everybody, brace yourselves, we need to be prepared. This virus could be significant enough, like other SARS viruses, to trigger POTS or dysautonomia in those predisposed. And it was and we were ready and we went immediately to remote. But I think one of the problems with POTS I'm air quoting, you can't really see that is that it's POTS is not a disease, it is a presentation purely, that the heart rate goes fast when someone is vertical. So it's not done us any favors in trying to get help, because most every doctor out there who's not deep into an invisible illness will see POTS, see that label postural orthostatic tachycardia syndrome and say, oh, tachycardia, yeah, that's a heart problem. But in the patients we see and we've seen thousands we have literally never seen a patient with POTS due to a heart problem. We've seen an occasional atrial fib PVCs are very common that sort of thing but that wasn't the cause of POTS. So the label in and of itself is a problem and I think dysautonomia needs to be looked at as if it's not a neurological disease or driven by cancer. What have you? If it falls into the POTS realm it probably should be labeled more POTS.

Diana Driscoll: 12:10

But having said that, the commonalities between POTS, dysautonomia, long COVID are inflammatory and in patients dealing with long COVID need to know, or likely need to know, if their heart rate increases when they're vertical, because if it does, this inflammation could likely be affecting the cardiovascular system and it affects more than that. But that effect on the cardiovascular system somewhat narrows the surge for an answer. You don't have to look at every form of inflammation out there which helps. So those commonalities and eventually changes in labels, I think will be important. The labels won't end up being POTS or dysautonomia or what have you POTS or dysautonomia or what have you? It will be the tendency to develop whatever abnormal inflammatory response is occurring.

Diana Driscoll: 13:06

That's where the problem is. That should be the label, and patients need to know that label so that once they recover from this bout of whatever they're dealing with, they don't have to worry about getting it again. You know, would it be the next virus that comes along. You know, to start them over on that horrible journey, that would be awful, or even their kids. They probably need to know that and that's one reason I set up genetic disease investigators. But what are the chances I could be sick, my kids could develop PODs, my husband was fine, we were in the same house and there's no genetic involvement of it?

Diana Driscoll: 13:45

I don't think so. So once we have those objective labels, it changes the game. We're not dealing with this invisible illness. You know, we have a genetic propensity and a measurable response. That's abnormal and that's what needs to be treated before these other dominoes fall. That was a long answer to your question, but I am on a mission to change that, because I think the labels kind of work against us and I think you've probably experienced it too, where you say POTS or you say post-COVID, and 80% of the doctors go, yeah, well, your heart's okay, you know your lungs look okay.

Jackie Baxter: 14:28

They look at you like it's your fault and then they start to wonder if you just need counseling, which is so far from the truth, which it's really upsetting for patients, and I went through that yeah, and and there was someone that said something to me about labels um, you know that a diagnosis or a label is only useful if it leads you to a treatment pathway or you know a list of things that are actually useful to you. Otherwise, it's just a label. You're like, well, great, I got a label, what do I do with it? Stick it on my forehead? Um, you know, and you know, I mean, you know we're being silly, but you know, you know, and maybe that's validating for people and it helps them to find their tribe, or maybe not, because everyone's got a different label, whereas actually they're all talking about the same thing under different names.

Jackie Baxter: 15:17

Um, so it's this you know what's helpful and what isn't, um, but, um, yeah, it is fascinating. And, but, yeah, it is fascinating. And you know, it was fascinating what you were saying about genetics, but also about inflammation, because what we see is that I can't remember exactly what the statistic is, but it's something like 70 to 80% of people with long COVID and I think the stats are similar for ME-CFS and for other sort of similar conditions is that it's 70 to 80% are females, and females, by definition of biology, tend to have much higher levels of inflammation, don't they?

Diana Driscoll: 16:02

So that links quite neatly into what you were saying, I think yes, we do look at that and the way we can evaluate patients is we do start with the commonalities and then we look for the differences. And you're right, we see more females and males and we know estrogen, especially estrogen surges that trigger menstrual cycles, are fairly inflammatory, especially to the blood vessels. So if someone is already struggling with pods inflammatory pods, as I call it and they have that cardiovascular response, that surge of estrogen does make it worse. Now, my son didn't have a surge of estrogen right and he was completely disabled. Didn't have a surge of estrogen right and he was completely disabled. Um, but I do find most of the male patients have less of a mountain to climb than the female inflammatory patients.

Diana Driscoll: 17:38

Yes, so they can be struck with the same things, but I think not having to deal with those hormone changes is helpful.

Jackie Baxter: 17:47

Yeah, yeah, and again, that does make sense because you know it's like if things are, things being hormones and everything that is kind of triggered by them, because they don't work in isolation, do they? Um, you know, are a little bit more stable, then you have, you know, there's less of a swing, whereas again, what we tend to see is that, you know, females, you know that luteal phase of the cycle you tend to get that's where you get your symptom exacerbation generally, it's where your resilience is lower, and again, you notice that in regular people that your resilience is lower, but, but obviously not to quite the same extent, um, so again, it does all make sense, and you know, and, and not to dismiss the experience of the guys who are struggling, um, because you know we, we don't want to dismiss anyone's experience, but yes, I think, I think those hormonal fluctuations definitely can add an extra level to it, and possibly, particularly for those women going into menopause and perimenopause, where things become sort of more chaotic, so to speak yeah, chaotic is probably a good word right.

Diana Driscoll: 19:06

It's interesting because some of the symptoms of menopause also are similar to some of the symptoms of inflammatory pots, like heat flashes. Um, in pots patients, we can get inflammatory episodes and they to the uninformed they appear like a hot flash. They're so much worse than that is you get tachycardia, I mean you feel hot, but then you feel extreme or fairly extreme panic and anxiety. It will take you to the emergency room. A regular hot flash, if you will, makes you hot. That's kind of the extent. But again, knowing patients intimately is really helpful to be able to pick apart some of that how much of that is true hormones and how much of that is an inflammatory reaction. It's important to do that. But females, as you know, oftentimes when we go to doctors, especially around perimenopause, you could be missing a leg and they're going to blame your hormone fluctuations. You know it's really just wrong and so unfair, but it does happen. I've seen it over and over.

Jackie Baxter: 20:16

Yeah, whereas the truth of it is that it's probably some of each. You know that nothing works in isolation in the body. It um so you know you have pots. It's probably not going to help the hormones and the hormones are probably, you know, going to influence the pots.

Jackie Baxter: 20:33

So we have this kind of, um, you know, horrible vicious cycle, um, but uh, but yes, oh, yeah, yeah, just just your hormones um so you know pots and dysautonomia, um, you know somebody diagnosed with one or the other in terms of treatment and what you would kind of look to do. Are you sort of treating them kind of largely the same or is your treatment protocol very different one versus the other?

Diana Driscoll: 21:07

yes, I think it has to be different. Even my kids and I ended up not the same. Like I never fainted, my blood pressure would surge sometimes when I stood up. My son fainted sometimes just trying to sit up and his blood pressure would plummet. He and I were both disabled. My daughter was able to stay in school. She was much more functional, but she had more of the flushing gut problems and she couldn't stand still for two minutes without having to sit on the ground. So I thought there's different things at play and there were.

Diana Driscoll: 21:43

But just like the patients we deal with, what we did was start with commonalities and I put this out it's been almost 10 years ago, jackie. I put out what's called the Driscoll theory and the cause of POTS and EDS and we started with there is a propensity to develop high intracranial pressure. We need to figure that out, treat it. If that's the case and that is always a secondary response to some sort of inflammation Then we start digging into that inflammation. When I was watching the research on COVID, it was like watching my life and research play out very slowly, where they were starting to put some of it together, and now it's in literature that, yes, there's a propensity for high intracranial pressure. But as you'll see in the Driscoll theory and I'll give that to anybody who has I had something to prove there because the MRIs oftentimes didn't show it, the optic nerve was typically not swollen, it was just so easy to miss. But it's disabling if it's not treated. And then I saw research was saying why do patients with COVID tend to do better if they smoke? What's up with the nicotine? Oh, no, that's. You know, pat did that almost 10 years ago. The use of nicotine stimulates a receptor on the vagus nerve but nicotine is very inflammatory. You can't stay on that.

Diana Driscoll: 23:13

And as it turned out, it was much more than a vagus nerve problem. It looked like it at first blush, but what I did over five years was I sent out symptom spreadsheets to chronic fatigue patients, pots, fibromyalgia and, interestingly, ptsd. They also tend to show autonomic symptoms and in this symptom checklist of about 150 symptoms I tucked 30 some symptoms of anticholinergic syndrome and the majority of patients had the majority of symptoms of that. So it wasn't just the vagus nerve. It involved other parasympathetic nerves, like pupils would tend to get big, eyes would eventually get dry. Some of the brain fog was low acetylcholine in the brain and I was on a mission to figure out how to replace that to the degree much like nicotine that it would stimulate the nerve but without the use of nicotine, and ended up with a supplement, paracin Plus, which went around the world and I remember days just sitting in my kitchen making this for my kids and I and it went through a few revisions but it wasn't a vagus nerve problem, it was a neurotransmitter problem. But use of the nicotine patch is what I used tested the receptors of those nerves and the receptors looked great. They worked fine.

Diana Driscoll: 24:42

So all of the research at that point or most of it in dysautonomia or POTS, was put toward looking for an autoimmune condition that was shutting down these receptors. And I understand why patients exhibited like autoimmune patients. We tend to wax and wane. We're very inflamed. There's more autoimmunity in the population, but no one, which shocks me. To this day, no one thought well, let's test the receptors, because if the receptors work, it's not an autoimmune condition tearing down receptors. Receptors were great. So it's an essential part of figuring things out and it probably should have been done many years ago and we could throw out all that research involving autoimmunity as the cause of the problem and go ahead and correct it which was awesome with again paracin plus, and then dig a little bit deeper into what was that causing? How could we turn that around? What was going on with the cardiovascular system?

Jackie Baxter: 25:44

we just pick it all apart, yeah so this paracin plus now I'm not asking you to give away your, your recipe, um, but can you say a little bit about like you know what, what's sort of in it and what, what it does?

Diana Driscoll: 25:58

yes, no, absolutely. Once I did the studies with nicotine and realized those receptors were working, what? What I looked for in the studies was a bowel movement. Even in those with complete gastroparesis, I leaned toward pretty chronic constipation punctuated with episodic diarrhea. The diarrhea was thrilling because at least it would release the constipation, but I got to the point where then it was complete gastroparesis. I couldn't move my bowels at all, no matter what medicine they gave me, and my gallbladder wasn't working. And they wanted me to remove that. And I said you know, if it's looks like it's a healthy organ, they said I wasn't damaged in any way. I asked if it was infected, like an appendix or something is going to blow, and I said no, it looks fine. I said is the opening maybe stuck closed where it can't eject? And I said no, the opening is fine. I said this sounds neurological. I would like an opportunity to try to figure this out, because life is easier with a gallbladder if you can, and indeed that's what it was.

Diana Driscoll: 27:10

So initially my goals when I sat down to try to create a supplement to do this was it had to trigger the vagus nerve. We had to have a bowel movement within about 45 minutes or so is what we looked for. It had to cross the blood-brain barrier. Or so is what we looked for. It had to cross the blood-brain barrier. Part of the problem that my fatigue and again you said it's not even fatigue I couldn't move and then ultimately it got so bad I couldn't stay awake, what turned from severe insomnia to severe like narcolepsy. That was part of the problem. It had to cross the blood-brain barrier.

Diana Driscoll: 27:53

And then something I'm very proud of is I looked into all the genetic issues, why you could have problems creating enough of this neurotransmitter and I thought if we're already challenged genetically, could this just be enough to push us over the edge? And if so, for each one of these conditions, how can I work around it? And then ultimately, patients who are not digesting properly, have vagus nerve problems, end up with some sort of malabsorption, malnutrition, and some nutrients are needed to create acetylcholine. So I researched that too and decided to put it all together so patients didn't have to know their genes right and it would work, no matter what the issue was, and it was years in the making, but I'm very proud of that. So I got to use my ancient organic chemistry knowledge which was, believe me, that was ancient.

Diana Driscoll: 28:44

But I was a total geek in school. I overstudied all the time, and there's a reason for that, so I just sat down and figured it out. And then I had my lab rats at home, you know, my kids and myself and fortunately or I guess that was fortunate had gotten into the position where nothing else was working. I had to figure out something. So I was pushed into that very high motivation. I had to figure out something, so I was pushed into that very high motivation. And whereas the researchers I spoke to would go home at the end of their day at five o'clock and not think about it, I was in the body of one, 24-7, and dealing with this every single day, every single minute, and had kids dealing with it, and so it was a different motivation to look for answers to yeah. So that was the first breakthrough honestly figuring that out. I'm pretty proud of that.

Jackie Baxter: 29:38

Yeah, rightly so, and I think you know I mean you know, you make a really, really valid point that, again, someone who hasn't experienced an illness like this again probably won't appreciate, because how could they? Um is that you don't get a break from your illness. You know, and I used to make the distinction between myself and my partner, you know, and life wasn't easy for him, you know, because he was having to look after me a lot. He was, you know, having to do a job as well as make meals, as well as deal with the emotional side of it, and it wasn't easy to handle.

Diana Driscoll: 30:17

You know certainly some of the time.

Jackie Baxter: 30:20

Um, you know, plus probably watching someone he loved going through something horrendous and not knowing if she was going to come out the other side. So I don't think he had an easy time of it. Um, but what he was able to do was get away from it. Um, you know, if he he could go out for the day and enjoy himself, and he was still coming back to it in the evening.

Jackie Baxter: 30:39

But he could get away, whereas I couldn't because I was in that body all the time and you know I, I think you know they. They sometimes say, don't you, that you have to hit rock bottom. And that is where we become desperate enough to look outside the box or to consider things that maybe we wouldn't have considered before. Or, to, you know, design your own supplement, um, you know. Dig out your test tubes, um know, and literally make it, because you, you do, you have that motivation and it's like well, nothing else I've tried has worked. So what have I got to lose? And it sounds like that's kind of where you got to. I like all right, okay, I'm gonna, I'm gonna accept it.

Diana Driscoll: 31:27

Yes, you have no other choice. I mean mean, for the first three and a half years of the illness I leaned on all the experts, assuming they probably sort of knew what was going on and they would work me through this. And that just didn't happen and I probably went to oh I don't know 50 doctors the first three years. That was so discouraging. But you can get to the point where you have to figure something else out, and online was not good. It was just a horrible place to be. Everybody was sick, everybody's mad, and then the mood disorders you know would kick in. I was certainly one of those. So I couldn't get help online. I just had to go where I was comfortable and that was studying and in my own mind and pick it apart.

Jackie Baxter: 32:44

So yeah, not something I'd want anyone to have to go through.

Diana Driscoll: 32:49

But I feel like there is some degree of reason for everything, and even my son's illness, which was the hardest thing, I think, to see. My own suffering is one thing, but his suffering was severe, but that kept me motivated. He came to me when he was oh gosh nine years old and he said, mom, you need to know, I can't keep going like this, I can't even go one more day. And I had no answers at that point. And, boy, that was a tough time. All I could do is validate what he was feeling and tell him I understood and that I was going to work through this problem and help us figure out what happened to us, and I would never give up. And that just gave him enough peace to go on. So the kids were hugely motivating for me too. Yeah, yeah.

Jackie Baxter: 33:46

And that must have been a very difficult thing, I imagine, as a parent, to have to watch. You know somebody that you care deeply for and that you know are charged with their care, and you're like. I don't know what to do. You know, I can't imagine that was easy either no, it wasn't easy on anyone.

Diana Driscoll: 34:08

I wouldn't wish that journey on anyone and my husband at the time, like you said, he at least he could leave, he could go somewhere and he would take business trips and stuff. But it was so hard to be left because I was so sick and the kids were sick, um, and I was not in really good position to take care of anybody. So it's just a dynamic that no family should have to go through, right?

Diana Driscoll: 34:33

Yeah, at least without validation without somebody saying, oh, kind of like having cancer or something. Oh well, we understand that, we know how sick you are. All your friends come and help. It's the chronic illness like what we went through. We tend to lose our friends, we lose that support. They don't understand it, and even our spouses or family can get to the point where they don't understand it either and start to wonder if maybe we really are just mental, which is so far from the truth. Yeah, tough to admit yeah, absolutely.

Jackie Baxter: 35:07

Um. So you said that the I'm forgetting the name, paracin, plus I wrote it down. Um was kind of step one. Um, can we talk a bit about what? What happened next? Um you know what helped you? What is now helping your patients? That's a very big question uh do do with it what you are.

Diana Driscoll: 35:31

Yes, no, it's it's pretty much across the board in our inflammatory patients that they need that support from paracin plus. And not only does that digestion normalize which is awesome the heart rate has an opportunity at least to slow down and breathing slow down. And then we can usually see the pupils of the eyes get smaller within about two days, and it's not like they're abnormally getting small, it's they're normalizing. As patients we tend to see get big pupils because of that abnormality in the autonomic nervous system. So when they can see something objective and they can usually just look in the mirror in the bathroom, like in the morning or something, and see that they know it's working, it's in place, it's just a matter of time. And you want to keep that going. And then high intracranial pressure treating that there's medicine to do that um was huge for us. I remember telling the neurologist okay, the rest of this I can handle, I at least have an opportunity to survive. Now, you know, and two or three years later it was getting worse. I just couldn't. But it bought me some time. I will say we want to figure that out as quickly as we can.

Diana Driscoll: 36:45

And then the other commonality we see and it is across the board is that the type of inflammation we deal with in this condition affects the cardiovascular system, vascular being important, and the blood vessels end up leaking. They're not healthy. Think about the blood-brain barrier, which is vascular. When that's not very healthy, things can get into the brain. The inflammation can spread and cause some fairly dramatic symptoms. It doesn't always show up on an MRI, which is important, but oxidation is always a consequence of inflammation.

Diana Driscoll: 37:25

When you have inflammation you always have oxidation. There is no exception to that and the oxidation further damages the blood vessels. It can ultimately damage organs and it changes the brain chemistry to more anxiety-type symptoms. Sometimes it exhibits like anxiety okay and sometimes it exhibits more like this almost OCD attention to detail, liking things a certain way. We're high achievers, we're usually at the top percent of everything we do, as long as we're not too sick, and some of that is okay. I kind of admire a little bit of OCD. But it can get to the point where that anxiety type stuff and OCD type stuff becomes crippling and we're impossible to live with for one. We expect other people to have the same ideas that we do and they don't, and we want to be able to control that If we don't get it.

Diana Driscoll: 38:23

On top of the oxidation it ignites more inflammation and you get caught in this really bad cycle. And I had the opportunity to go through that, which again great right. I was in the hospital. They gave me an antibiotic that it almost killed me, jackie. It ignites inflammatory cells and I went through probably six or seven blood transfusions because the oxidation was destroying my red blood cells. And they started me on vitamin C. Understanding the oxidation was bad, I didn't touch it. So when I got home again opportunity to try to figure it out, I came out with what's called NAC-MAX and it increases glutathione and it also recycles the glutathione we produce. So it starts to immediately hit some of that oxidation and when I was going through recovery I just carried that bottle around with me.

Diana Driscoll: 39:25

And every time I felt this kind of buzzy how do you describe this? Like hyper-adrenergic fear. I had a short fuse. I oddly developed a fear of heights that was dramatic. I couldn't even look at a picture of someone on a high height. I couldn't handle any stress whatsoever, nothing, not even the thought of stress, and that's what pulled me out of that. So we always look for that presentation too, and it can be crippling for some patients just crippling, and the longer they have inflammation and that's not addressed, the worse it gets. One of the saddest things that can happen is and we've seen it a few times where the anxiety can become so bad it's almost paranoia, where they become afraid of the very medicine or whatever that could pull them out of it. And that's horrifying to see where you know what's going on, you know what medicine will pull them out of it and they just can't do it. So that was a huge, important discovery also.

Jackie Baxter: 40:38

Yeah, and the combination of all of those things you're seeing recoveries, improvement, a bit of both.

Diana Driscoll: 40:56

Our aim is always for recovery, always, and what happens with patients um is that with consistency and it takes a while because we're usually working towards some sort or against some sort of genetic tendency for some of this inflammation. You have to be extraordinarily consistent. Keep some of this working properly, stay on top of it and then the body has the opportunity to heal. When it heals and POTS goes away, okay, pots will go away. That's just a presentation. Pots goes away, then the patients need to know how. How did they get to that place and what is the least amount that they could do to maintain their health so it doesn't happen again.

Diana Driscoll: 41:38

I know one fear I had once I had recovered was I felt so fragile in my recovery I felt like if the cold virus came along I would just, you know, down to go, and it took a couple of years really to feel stable with that recovery. And now I don't have fears of that. But I would be ready for some things if I did get COVID or what have you, or other viruses or even high stress surgeries, things like that can cause that. An accident, car accident, trauma of most any sort can trigger such abnormal inflammation. You don't want that inflammation to run away. So it's important that patients leave that journey knowing what happened, what type of inflammation they deal with.

Diana Driscoll: 42:24

My goal is to release the genetics of this and I'm excited to do a lot of that and started a group on patreon called potts rebels, where we meet every week, we talk I just put everything in there. Um, we've got to get out information for the masses, so that's a way to do that. But there's genetic components to some of our inability to handle some forms of inflammation. We need to know that as patients so we don't become sick again. I look at it like and I think typically for other patients too I'm always going to be an inflammatory patient.

Diana Driscoll: 43:05

I know what I'm up against, but I'm not sick, nor do I plan to be sick, and I'm probably the most active person I know of basically any age and I'd like to keep that too. So to walk away from a journey like this, being very proactive in my health, my vascular health, my brain health, et cetera, heart health, the whole bit. I think, having gone through this journey, I will be healthier than my peers as I go into old age, and we can all be proactive. I think we should be. But had I not gotten POTS, I wouldn't have been nearly as proactive, right. So, yeah, again, silver lining, silver lining. But that's our goal with patients is full recovery, with the knowledge of what happened and, ultimately, with them in charge of it, so that they can stay on top of things they ever get triggered again or what have you and not slide backwards again.

Jackie Baxter: 44:05

Yeah, yeah, I love that Cause I because I can relate to a lot of what you're saying. You know, when I did say yes, I am now fully recovered, it did feel fragile as well. You know I thought, oh, this could so easily backslide and I was really scared of that. You know it took a bit of time to have more confidence in my recovery. You know it's like I know I'm good. Okay, now I really know I'm good and now, almost two years on, you know I'm completely confident in that. But it did take a little bit of time and you know, I love what you're saying as well about maintaining health.

Jackie Baxter: 44:42

You know, when something like this happens whether it's long covid or mcfs or POTS or dysautonomia, and obviously all of these have a lot of crossovers you know, we get put into this position where we have to do everything we can to regain our health and our wellness, you know, to get our lives back.

Jackie Baxter: 45:02

And we have this greater appreciation, don't we, for what it means to be well and to be able to function and enjoy life, and, you know, just to be able to do boring, normal things. I remember being really excited about chores. Um, it's like.

Diana Driscoll: 45:17

I can do chores now and then I very quickly decided, chores were boring um but you know, yeah, you know, and I think.

Jackie Baxter: 45:23

I think it's so empowering, um, you know, to have some of those tools. You know we learn them out of necessity, but they're tools for life and you know going forward. You know we've gained our health back and that's wonderful, so it's about maintaining our health.

Diana Driscoll: 45:39

What can I?

Jackie Baxter: 45:40

do to make sure that I keep myself well. So for me, it's my morning breath, work practice. It's getting outside every day, it's continuing the cold water. It's some of those things that I did to get better. It's keeping going with them, you know it's. It's being aware of the impact of stress on the body. You know you can't avoid stress, but you can mitigate it. So all of these things, you know what is it that's going to keep you well, so you're able to deal with what life throws at you. And I think you know, you know we do we gain this appreciation. But, yeah, you know, health isn't free. You know we do have to maintain it and in whatever way that that means for you. So, yeah, I love that. That. You know the journey doesn't end with recovery. You know I think it keeps going. So, yeah, that's super awesome. Um, I feel like we'd love to dive into research, but, um, maybe we need to leave it there and would you be willing to come back and talk research?

Diana Driscoll: 46:39

I would love that. I would love that. One thing that happened to me, jackie, and I think it's probably happened to you. Um, my journey was so long 12 years or so that the empathy I feel toward patients never goes away. So it's my life's mission to help other people out of this. I love talking to patients, I love answering questions, I do consultations around the world, and it isn't something I personally can walk away from. So, until the treatment and evaluation paradigms change for these conditions and the labels, frankly, it's my life's work. So I'm always happy to talk, I will tell you. And there's just so many layers to these conditions and patients struggle with that lack of validation which just kills me. So, yeah, absolutely, I would love that. I would love that Research is always ongoing.

Jackie Baxter: 47:44

Yeah, Thank you. I'm so pleased you said that because, yes, I think it would be wonderful to dive into it and to do it justice. So I will make sure that I drop all the things that you've mentioned a link to your website, a link to your supplement that you've mentioned. Anything else you want me to put in into the show notes so people can follow up any of that if they're interested. Oh, thank you, people can follow up any of that if they're interested. And yeah, I just want to say thank you so much for coming along and sharing your wisdom, sharing your story, and we'll do this again.

Diana Driscoll: 48:19

I've enjoyed it so much, so it was so nice to share time with you, jackie. Thank you.