My Spoonie Sisters
Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.
Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a supportive space filled with understanding, laughter, and strength. Let’s journey through chronic illness together!
Tune in and join the sisterhood!
All guests featured or mentioned in this podcast will be listed for your convenience. Don't forget to rate and subscribe to My Spoonie Sisters and follow @MySpoonieSisters on Instagram for updates on new episodes and more. If you have a story to share or want to be featured on My Spoonie Sisters, please email MySpoonieSisters@gmail.com. We eagerly look forward to speaking and hearing from all our Spoonies!
Disclaimer: While we are not doctors or healthcare Practitioners, we want to assure you that this podcast is a credible source of information. It's based on our guests' personal experiences and the strategies we've found effective for ourselves. However, everyone's body is unique, and what works for one person may not work for another. If you have any health-related questions, it's always best to consult your Primary Doctor or Rheumatologist.
Remember, our goal at My Spoonie Sisters is to connect people and provide them with the support and tools they need to live better lives.
My Spoonie Sisters
Unmasking Autonomic Dysfunction
What happens when the medical establishment tells you your debilitating symptoms are "all in your head"? Dr. Diana Driscoll shares her journey from successful optometrist to disabled POTS patient and groundbreaking researcher. After a virus triggered debilitating autonomic dysfunction, she and her children faced severe health issues, prompting her to seek answers when traditional medicine failed them.
Dr. Driscoll developed the Driscoll Theory, identifying three critical factors in conditions like POTS: high intracranial pressure, cardiovascular inflammation, and vagus nerve dysfunction. Surprisingly, standard treatments often exacerbated patients' conditions.
Using her optometry skills, she identified subtle eye abnormalities indicating blood vessel damage, leading to the development of supplements like Parasym Plus that target the underlying issues affecting the autonomic nervous system. Now, her children live normal lives, proving recovery is possible.
Dr. Driscoll's message is one of hope for those facing invisible illnesses: "There's always a reason for illness." Through POTS Care and ongoing research, she continues to seek answers for patients worldwide, offering support for anyone fighting for validation and effective treatments.
Delivering Happy Mail around the world!
We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.
Join our mission to send 100,000 cards of support to patients with long-term illnesses.
About our organization | Cards2warriors
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
Let's Get Started - Rare Patient Voice
Keep your spoons close and support system closer.
Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website: https://myspooniesisters.com/
Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off
Welcome back to my Spoonie Sisters. Today we are honored to welcome Dr Diana Driscoll, a trailblazing optometrist, a researcher, inventor and patient advocate. With her doctorate from the University of Houston College of Optometry, dr Driscoll has devoted her career to unraveling the mysteries of the autonomic nervous system. Her groundbreaking works span of the autonomic nervous system Wow, her groundbreaking works span idiopathic autonomic dysfunction, vagus nerve health, vascular endothelial disease For you, intracranial pressure and connective tissue disorders. Wow, I'm in a room of greatness. She's the author of the Driscoll Theory and Ehlers-Danlos Syndrome, your Eyes and EDS, and the founder of multiple organizations, including POTS Care, tj, nutrition and Genetic Disease Investigators. With five patents and numerous publications, she's recognized internationally as a leader in advancing care for patients with complex conditions. I'm so excited. How are you doing today?
Speaker 2:Doing just great, thank you.
Speaker 1:I'm glad to be in this room and be able to sit down and talk to you.
Speaker 2:It's an honor to be here. It really is. I really appreciate the work you all do, because I'm only one voice and I was a spoony, you know, for over a decade. I love being able to reach others. There's always reasons for illness, and helping as many people as possible is really the goal.
Speaker 1:Do you mind giving us a bit of your background, your personal history and what drove you into this area?
Speaker 2:Yes, absolutely. I've always just put it all out online because I thought if I was going to get any answers as a patient it was going to have to be opening up to others. So I'm an open book. But I was thrown into this. Oh gosh what.
Speaker 2:20 years ago I had developed POTS postural orthostatic tachycardia syndrome. It took almost a year for that diagnosis, but before that I was a fully functioning human being. You know, I had multiple businesses and worked as a therapeutic optometrist, just fine, and then got a virus and like two weeks later things just seemed to break and I had to stop practice immediately. I was completely disabled, jan. It wasn't like I could just push through. You know, I was just tired or something. Oh no, nothing worked right. It was more than that. Completely. I thought I was just tired or something. Oh no, nothing worked right. It was more than that. Completely.
Speaker 2:I thought here I am completely disabled. I'm just not getting to the right doctor. You know I probably went to 50 doctors and then ended up in clinical trials for this. Their answer, after years of working in these clinical trials, when I said I'm not getting any better, my kids are sick now, throw me a bone here. You know, what do you think some of this could be? And they said well, we think patients are perfectly normal, they're just more aware of their own bodies. You've got to be kidding me. So I knew then we were all yeah, isn't that crazy. I'm completely disabled, I am bedridden. How could I just be aware of my own body? It just didn't make any sense to me at all. I knew then my kids and I, if we had any chance of recovering, we were going to have to be the ones to figure it out.
Speaker 1:Wow, did you end up going down the rabbit trail of genetic testing at all?
Speaker 2:Well, that's when I realized we're on our own. I thought both of my kids are sick and they got separately. We got sick, separated by years. It wasn't like we were both or all exposed to and got sick. My husband at the time was fine. I thought what are the chances this could happen? And there's no genetic influence. I thought something has got to be going on there. So I set up genetic disease investigators. I said if we are going to do research, let's house it in this corporation and look toward what are some of the commonalities and if we can get to the genetics of it, that would be really validating, and started going that route.
Speaker 1:Yeah, what did you end up finding out?
Speaker 2:Quite a bit and it wasn't like there was one thing you know, like oh, and this is one thing, and it was layers and layers. One thing was leading to something else was leading to something else, something else and then even more complex. My kids and I were not the same. They were not the same between themselves. So and we've come to see at Potscare, every case is individual. They are very complex, but the commonalities were a good place to start and the commonalities and these are in the Driscoll theory, the book, and it came out gosh 12 years ago. I think it might be new for a lot of people, but the commonalities included one a propensity to develop high intracranial pressure, and it was very easy to miss because patients didn't display as typical what we typically see.
Speaker 2:There's abnormal inflammation that ultimately would affect the cardiovascular system, vascular being important in PODs, because that tough forage you had, the vascular endothelium, the inner lining of the blood vessels was getting damaged, and then the inflammation of whatever type is involved and that's where everybody's different was also affecting the neurology and it was affecting the autonomic nervous system and that's the part of the nervous system it works all by itself. You shouldn't have to think about it. You know you don't have to make your eyes produce tears or make yourself have a bowel movement or your gallbladder. You know, to make it work it should work all by itself. And when that's not working properly, a lot of systems of the body fail, and certainly that happened to us. So it was one thing at a time just figuring out those layers and then at the end of that saying, okay, we got to the other side. What else could bring patients to a similar place? And then what else could make those situations worse? What kind of factors could make those situations worse? What kind of factors could be changing each individual case? And then could we help others with that? So that's ultimately where PODS care came from.
Speaker 2:So yeah, it wasn't a simple solution, but there was a solution and I think anybody listening I really want them to know there's always a reason for illness. This is not in your head, it is real. And just because doctors haven't necessarily figured it out, it doesn't mean there isn't a reason for it. And I was a doctor, I was almost 50 years old. I knew it wasn't a psychiatric condition. I knew I didn't suddenly have, you know, a case of anxiety or whatever. The autonomic nervous system was failing and other things were failing, so we set to work to figure out the answer. So there's always hope. It's hard, it's complex, but there's always hope.
Speaker 1:Now you've dedicated so much of your work to the often overlooked conditions, what keeps you passionate about uncovering answers for patients?
Speaker 2:Yes, it is a passion, I will say I can tell.
Speaker 2:Well, I look back on that journey and again, being basically disabled, it was over 12 years my son missed three years of school and then some. He developed severe osteoporosis. He broke his arm just throwing a ball, you know, putting on his coat. He was so fragile and no one was jumping up and down saying this is an emergency. These people are so sick, why aren't we helping them? You know, I just totally didn't get it, but the journey was horrible.
Speaker 2:I don't think anybody should have to go through that. And whenever I talk to patients now it takes me back immediately to where I was. That empathy never stops, so the desire to help goes forever. Yeah, I don't want anyone to have to go through what we went through and I hear people going through not dissimilar journeys and it just breaks my heart. Through not dissimilar journeys and it just breaks my heart. So poorly understood the lack of validation, the no answers, no hope, no prognosis, no treatment plan. Patients are draining their savings, looking for help and oftentimes just getting worse. That needs to stop. So it is. It's a personal passion.
Speaker 1:When you see it intersecting itself into your entire life, hitting now your family, that makes it a big deal. I think it's one thing when we're battling something ourselves, but when we start to worry about our loved ones, it's a next level.
Speaker 2:It is. And they say that once you've been a mom of sick children, you're a mom of every sick child. Right, and it does just break my heart. My son came to me when he was nine years old. He'd been sick for about a year. He got sick when he was eight and he said you have to understand, mom, I can't keep going like this. I don't think I can take another day. And I had no answers at that time. But it's miserable. It feels oftentimes like you get hit by these waves where your body's on fire and the brain is on fire. You can't control your own body. It's just a horrible thing, and for a child to go through it it was really bad. I didn't have any answers at that time, so I remember just getting on his eye level and saying I understand this is horrible. I understand you're really sick, as am I. What I will say is I'm going to do everything I can to help figure out what happened to us and how we can get our health back. And that was enough to give him some peace where he would just keep going. But thank goodness I didn't know it'd be many years in figuring that out, but in fact I just talked to him. He's doing great. My kids are great, Perfectly normal lives, active, athletic.
Speaker 2:I wish when I was going through that, somebody could have said it's going to be okay Ultimately, it's going to end up okay, and no one could tell us that. So it's certainly a word I want to spread to people. Is it will be okay? There are answers I want to spread to people. Is it will be okay? There are answers. It's hard to figure it out, but it all ends up being okay. Yeah, but you're right. The motivation when you're a parent or you're in a family and the kids are sick is a different motivation from your own self being sick right.
Speaker 2:If it had just been me, would I have given up at some point, maybe. But I couldn't say to them you'll be okay, somebody will figure out something. I'm just going to exit stage left here. I couldn't do that. I knew no one was getting anywhere with this. So yeah, hung in there, thank goodness.
Speaker 1:Absolutely Because your Driscoll theory. It's been described as groundbreaking. Could you walk us through its key findings and why it matters so much for patients? With connective tissue disorders and autonomic dysfunction.
Speaker 2:Yes, I am happy to, and there is a whole chapter in this book on where did we go wrong with these connective tissue disorders? Should we be using the label of Ehlers-Danlos or not? So I've got some of my own opinions on that. But very basically, there are three commonalities that we can start with with patients.
Speaker 2:Number one we want to figure out if intracranial pressure is high, and as doctors we learn that if someone has high intracranial pressure what's called idiopathic intracranial hypertension the number one symptom is headache. Clinically that's not what we see. We see more of this coat hanger tightness. There's discomfort at the base of the skull, oftentimes going down the neck to the tops of the shoulders, and the muscles get tight. We see dramatic insomnia. I remember I couldn't sleep. I was given sleeping pills Xanax. I was awake like four days straight. You cannot fall asleep when the intracranial pressure is high and then we get a lot more brain fog. There's less oxygen perfusion to the brain. A lot of other dominoes start falling from that. That needs to be figured out and it's treatable. You bring the pressure down and it's a huge relief. But high intracranial pressure is always a secondary problem. It's secondary to something inflammatory. So your work is not over yet, but again with the commonalities, if the inflammation is affecting the cardiovascular system, you can end up with POTS, or what we call inflammatory POTS. So we look to see what kind of chemicals are attacking the blood vessels, what is damaging that endothelium, what kind of receptors are on the heart that are getting activated to cause the heart to misbehave, if you will, to skip around and to cause tachycardia, fast heart rate.
Speaker 2:And then a really big piece was a lot of our digestive issues really came to a head. For a while I had horrible constipation punctuated by episodic diarrhea, and I remember being so excited to end up diarrhea because at least it would relieve the constipation right. And then my gallbladder failed. They tested it and they said you need to have that removed. I said, well, is it like an appendix, you know, is it infected or it's going to blow or something? And they said no, no, it's fine, okay, Is it filled with gallstones? That would be a reason to have to remove a gallbladder. I said no, there's no stones. Is the opening stuck where it can't eject the bile? They said no, the opening's fine, okay. Well, nothing you're saying is telling me I have to immediately remove this organ. But to me it sounds neurological. It sounds like the gallbladder is just sitting there going let me know when you need me. I'm right here, you know, and it's not getting a signal. And if I can figure this out, I would love to try to save that gallbladder.
Speaker 2:And I remember that upset the doctors at the time. But things have to make sense. To me, right, it just didn't make sense. And I was considering the possibility that there was vagus nerve problems, because a lot of the symptoms, if I clustered them, revolved around that nerve the fast heart rate, fast breathing, bad gallbladder, bad digestion, bad bowel movements. I suspected the pancreas wasn't acting well, that we lost the ability to digest food properly, which meant we couldn't absorb the nutrients from it, right? So that's why my son was developing severe osteoporosis. I got to the point, jen, where I was hallucinating sometimes I was so low in some nutrients, but my doctors never even considered that I'm not an alcoholic or celiac or Crohn's or anything, so why would they need to consider malabsorption? It was just kind of a missing piece.
Speaker 2:But working through that, I sent out symptom checklists over five years to chronic fatigue patients, pots patients, fibromyalgia and, interestingly, ptsd. They show autonomic symptoms too, and in those checklists I tucked in about 30 symptoms of low acetylcholine, the neurotransmitter needed by the vagus nerve. But this neurotransmitter is needed by other systems too, and the majority of those patients showed the majority of symptoms. They would come and go a little bit, but the pattern was very clear. This wasn't a vagus nerve problem, this was a neurotransmitter problem. Then I set to work to try to figure out is there a way we can use existing supplements or medications to have it come together to trigger the receptors that are needed to restore that? And that was quite the journey, but I figured that out and that's where the patents came in. So what is now out as Paracin Plus is what returned that and allowed us to start digesting properly, gave us the ability to use that vagus nerve to help control the inflammation and then ultimately was a key piece of recovery.
Speaker 1:Wow, I'm here listening to you thinking okay, malabsorption, you're either purging or you're not able to purge what you need to.
Speaker 2:Yes.
Speaker 1:It's all like a firestorm.
Speaker 2:Yes.
Speaker 1:Why wasn't somebody taking this more seriously?
Speaker 2:Yeah.
Speaker 1:And is there a lack of communication between different physicians or specialists? I'm intrigued.
Speaker 2:It was so many reasons for things to fall down. And I look back on that and I know I'm not alone with this journey. No, but I had as many as like 80 symptoms at one point and they were always changing. So you're chasing moving target. You're sent to specialists, right Like I went to a GI doctor.
Speaker 2:Well, they're not really privy to the brain fog. Or big pupils, your dry eyes it probably would have told the story. Or big pupils, your dry eyes, it probably would have told the story. And their job is not to play researcher, you know, and try to play detective and figure out the pieces. They are there to label a condition and treat according to the label. So if there's constipation, you take something, move the bowels, if the gallbladder fails, you remove it. You know, and nobody was really in charge of the whole thing.
Speaker 2:So what we need ultimately are better labels. The label of POTS, for example, is terrible. That implies, with the term tachycardia in there, it implies it's a heart problem. It's not. We've seen thousands of patients at POTS care. We've seen heart irregularities. We've seen PVCs et cetera. That's okay, but we've never seen a structural problem with the heart as a cause of POTS. So as long as we have that label, doctors will tend to diminish the presentation of POTS that your heart goes too fast. Either let's slow it down, which is one of the worst things you can do, or sit down. You'll feel fine.
Speaker 2:And I was so sick, jen, in every position imaginable it would change, but it wasn't a heart problem. So one of the goals I have is to label these conditions properly, based on, for example, the inflammatory conditions that are driving them and preferably understanding the genes that set people up for that. And then, with a proper label, we can get proper treatment protocols, prognoses, et cetera, and patients can fully recover, or preferably not get sick, if they know what's kind of set them up to kind of take care of it. So labels aren't helping us to set them up to kind of take care of it. So labels aren't helping us, like chronic fatigue syndrome, useless, you know. I think most doctors think of that. Oh, these are the tired people. You know, everybody gets stressed out and tired. Or the anxious, depressed female.
Speaker 1:Or just anxiety, that's another good one. Or it's just anxiety, that's another good one. It kills me.
Speaker 2:My heart rate. My base heart rate when I was sick at one point was 123. And I remember I was relaxing in the doctor's office and I said do I look stressed? Do I look anxious? She said no. So would you put that on the record Because I know where you guys are going to go with this right? And it's not an anxiety problem.
Speaker 2:What really confused them, though, is, over time, our brain chemistry starts to change, and as that brain chemistry changes, we get more anxiety type symptoms, in fact, across the board. What we see in our patients, which is kind of a mixed blessing, is we see the anxiety can manifest as very high achievement. See, the anxiety can manifest as very high achievement, very smart, detail-oriented, almost an OCD need for things to be done right, and as it gets worse we can become difficult to live with. We want everybody else to have the same high bar. We do, you know, and they don't always so very high achieving, smart group of people, very high achieving smart group of people. But when it leans more the anxiety route, it misleads the doctors where they can think you know, you're just anxious, and I understand that.
Speaker 2:I was in the body of one and I knew the anxiety was secondary. I didn't just suddenly have an anxiety problem. I got this virus and two weeks later I'm sick. So I knew it was medical and I could blow right past that. But if my kids had gotten sick before I did and the doctors weren't finding anything, I wonder, would I have also looked at that and started to think maybe my kids are just crazy? I don't know, I like to think no, that I would have. Oh, this is a medical condition, that's figured out. But praise God I got sick first. So I knew with my kids also, it wasn't a psychiatric condition and we need to figure out the medical cause and correct some of that brain chemistry, correct the cardiovascular system we all dealt with intracranial pressure problems correct that neurotransmitter and we have a fighting chance to recover. And we did.
Speaker 1:Well, something you said a minute ago reminded me of something. Yeah, so the American College of Rheumatology. They have this event every year called ACR, which stands for American College of Rheumatology, and they bring in rheumatologists and researchers and PhDs and there's studies that are being presented and projects that are being talked about. And I went to a post-ACR event here close to me in Portland, oregon, and one of the researchers that presented was about POTS Interesting. I was so excited to hear about this.
Speaker 2:And what?
Speaker 1:struck me the most was when they called out all the people in the room and they said if you are not diagnosing more POTS patients, what are you doing? It is not just up to the cardiologist. You need to be looking into this more, because we're so much more at play and they dove into so many different aspects aspects. But I was fascinated that they were calling them out and saying look, don't make it somebody else's problem, Do the work, Dive in there. We need to do this together because there's more of these people than we can even realize.
Speaker 2:There are. There's a ton of people who are misdiagnosed, locked up in institutions or what have you, but very rarely as practitioners do we ask a patient to stand up, right, we're checking them sitting down, checking their heart rate or whatever. If we did that we would probably find them more often. The problem is, once you are slapped with that label of POTS, then the traditional treatment of POTS usually either keeps patients sick or makes them worse. They're giving high salt to patients.
Speaker 2:I did that for three years and that damages the vascular endothelium. That lining more increases intracranial pressure. That's beta blockers to abnormally slow the heart. That's horrible. The heart rate picks up for a reason. You can't circulate your blood, so you slow it down and your blood is down south and you're kind of in a world of hurt. Then beta blockers encourage dramatically encourage more depression. Patients who are inflammatory lean toward depression when the brain is affected anyway and that puts them right in the dumper. They'll oftentimes give flora enough, which increases blood volume. But that also worsens intracranial pressure. So these poor patients are given things traditionally, once they have that label, that are making them sicker or keeping them sick.
Speaker 2:So it's a mixed blessing to diagnose pods right, because then they're put in traditional treatment and they're made worse. So we've got to change those labels and then doctors can get the objectivity they need, or they can measure something in the blood, or they can know the genetic setup and they confirm it in the blood and go oh yeah, we know what this is. It's blah, blah, blah. And this is what our treatment protocol is. You're going to be fine. So, yeah, it's hard to encourage the diagnosis of POTS when the treatment is horrible. It's kind of like Ehlers-Danlos syndrome or hypermobility. We don't encourage that diagnosis unless it's a life-threatening form, like vascular EDS, marfan's, because it's a dead end, right. It doesn't help the patient. We have to have diagnoses that will help the patient. So that's the goal. That's the goal.
Speaker 1:That sounds like a really good goal to have, because, at the end of the day, you want people to feel better, not worse.
Speaker 2:Yes, absolutely. And doctors overall. I think doctors really want their patients to feel better. And these poor cardiologists, oh my gosh, they're giving POTS patients. They can't help. And I talked to so many cardiologists, talked to a big group just last month. I said, oh, we've agreed, our entire cardiology group of this entire hospital we are not seeing POTS patients. One, the heart isn't the problem. Two, they think POTS patients are crazy because we kind of exhibit that way, you know, and we have a gazillion symptoms. They're cardiologists, they're there for the heart and when the heart structurally is okay, all they can really help us with is slowing it down and that makes it sicker and they kind of see that. So POTS patients fall into this group where nobody wants to see them. You know doctors will see on their schedule. Oh, I have POTS patients. They know it's like oh horrible, because they don't know what to do with that. You know what do you do with 80 symptoms when someone walks in? How do you even start to approach that? It's a really, really tough situation for patients. I think rheumatologists they're so smart. And if this inflammation affects the connective tissue or affects other things, I'd love for rheumatologists to be able to figure this out. The problem is, without a label, they can't help us. Pots is a horrible label.
Speaker 2:I had at one point like this horrible pain in my upper body and they had given me an antibiotic that ignited the very inflammation that made me sick, and the doctor at the time said so. I was in the hospital. He said I'm going to put you down as a chronic pain patient. I said no, you're not. So one, I know what you think of those people. You know. Two this is inflammatory pain. I can tell the difference. If you could do an MRI of the connective tissue you might show it. And they did it and they could see the inflammation. The radiologist said exactly where it was, where it, you know, rotated around.
Speaker 2:And I took it to a really smart rheumatologist. I said help me, you can see very clearly this is damaging me and it's so painful. And she said, no, I can't, not without a label. Can you just give it a whirl? You know you can see the inflammation, I'm dying. And she said, nope, can't do it. So these very smart people need more help with figuring out what to do. Right, we've got to have better labels for them. But I left that office just crying. I thought that was my last hope and she couldn't help. So that was really, really tough. I wouldn't wish these cases on rheumatologists if they don't have any guidelines on what to do. Terrible position to be in.
Speaker 1:I'm going to shift a little bit what role? And the eyes?
Speaker 2:are kind of a unique way of looking at the blood vessels. It's the only place in the body you can look directly at blood vessels and it's the only place in the body you can look directly at a cranial nerve. I thought it's often indicative of something systemic going on when we can look at the back of the eye. Let's take a look. So we had 30 patients with POTS come in and they brought an aged, matched, normal person, someone who didn't?
Speaker 2:have POTS. We did every ocular test we could think of and one of the tests was a picture of the back of the eye, very close picture that showed vasculature, showed the optic nerve, and I was the blinded doctor, meaning I was given the images. One was normal, one was a patient, but I didn't know who was who. And I was told try to guess who's who. Like what am I supposed to look for? I have no idea what I'm doing, so I would just look and if I found anything, I go. I don't know, this isn't something we would flag as abnormal, but this is a little bit different. Maybe I would call this one. I was correct just under 90% of the time and what I found guided the next layer of research. One thing I found was that someone was up with.
Speaker 2:The blood vessels, like the veins, are supposed to be very smooth. The caliber is very smooth and caliber is very smooth. And they weren't always smooth. They were a little bit irregular and that can be that vascular endothelium starting to scar, get damaged. The ratio of the arteries to veins was sometimes off. The ratio should be two to three and it was oftentimes not. Either the veins were too big or the arteries were too small or both. And then, oddly, in the arteries we saw this premature plaque formation, even in, like my nine-year-old son, I thought why would a child have atherosclerosis forming in the vessels? Well, if the vessels were chronically inflamed, it encourages that. And so we walked away saying okay, whatever is going on here could be partly a chemical attack on the blood vessels. And so we walked away saying okay, whatever is going on here could be partly a chemical attack on the blood vessels, and if it is, maybe we can fight back chemically.
Speaker 2:And then the optic nerve although it wasn't swollen what we looked for is eye doctors but oftentimes the margins of the optic nerve weren't flat. Part of the margin was a little bit elevated and what we usually look for for a swollen optic nerve is elevation of the margins all the way around. They didn't have that, what we call papilledema, but I could tell again who was a patient and who wasn't, because sometimes the margins weren't perfectly flat and we optometrists or eye doctors or I guess all doctors would call that a tilted disc. We look at that and say that's, the patients are born that way. The optic nerve just comes in at an angle, we blow it off.
Speaker 2:But why did I just see that in the patients but not in the normals? I thought this could be a sign of high intracranial pressure and we're dismissing it too easily. So that was another avenue we went down. But I look back on that and I think the eyes are a great window to so much in the body. But with POTS, why did no one think to look in the eye? I guess I was an eye doctor, so that's just a natural inclination and I thought that's my comfort zone and maybe that will give us some guidelines. And it did so. To this day we still like to look in the eyes.
Speaker 2:It's not an ending, but it's part of a very complex picture in most cases, if I was a podiatrist or something I don't know that I could have figured this out right. There were some other ocular symptoms, like once I saw I looked down at my car radio and it looked like it was moving away from me and that turned out to be a significant symptom and that also guided me. But again, if I wasn't an optometrist, would I have put those pieces together? I'm not convinced I would have, so in some ways I see how I was set up an optometrist, very curious person, always asking why love detail. I got sick and then later my children. Was I just perfectly set up to try to figure this out, you know, maybe? Yeah, I wouldn't wish it on anybody, absolutely.
Speaker 2:We bloom where we're planted right.
Speaker 1:Yes, Now many in our community. They face delayed or even missed diagnoses. So what advice do you have for patients trying to advocate for themselves in these situations?
Speaker 2:Yes, it's extraordinarily difficult. I think one. If you can find one doctor who's just willing to try to be there for you, that's great. None of my doctors understood what was happening, but I had a couple of doctors who just hung in there with me and as I started to peel things back, they were there to support and that was hugely helpful. If you have just one friend who's willing to validate what you're going through psychologically, we can tend to get through that journey more. If anyone's suspecting POTS, that's not terribly difficult to diagnose. Stand up, you'll find out right. The problem is, once you have that diagnosis, you don't want to do traditional things. Instead search for an inflammatory cause. That's where the answers are.
Speaker 1:Do you mind telling us what the POTS care package is?
Speaker 2:Yes, this was an attempt to reach more people. What I did was what we discussed about some of these commonalities among patients. I created an app and we educate patients over about three months about what's happening and then talk about what they can do naturally or without a doctor's help. I include supplements, including the patented supplement Paracin Plus For oxidation. This warrants I mentioned. Oxidation is a consequence of inflammation. The two are always combined and oxidation worsens the inflammation, it damages blood vessels, ultimately organs, and that's what shifts our brain chemistry more in that anxiety type stuff that needs to be corrected. So, in addition to Paracin Plus, we recommend NACMAX created that for that reason. We combine some of these supplements to help people through the recovery. There's a heart rate variability tester in there so they can monitor the autonomic nervous system and some other miscellaneous things. But the package is an attempt to teach people what is inflammatory pods what do I need to do to start and gives them the background education.
Speaker 1:That's great, and I think this kind of takes us into my next question. Now you've received five patents related to the autonomic nervous system, including dry eye disease. Can you share what your favorite innovation or discovery is that you feel has made the biggest impact?
Speaker 2:All of them are kind of exciting. I will say this is one part of the journey that was very validating. I mean, I'm talking to doctors all over the country and they think you're crazy, right. And then you start putting together the science. You figure things out and a patent is like the ultimate validation. Patent attorneys are extraordinarily smart, patent boards are very smart. They don't like patents for supplement blends, but I thought this is truly new science. Figuring this out is brand new. No one has ever put this together. I think it is patentable, so it was very validating.
Speaker 2:What really moved the needle, I think, for most, and has been the biggest change for the majority of patients, is Paracin Plus, and that was the first patent because it restored the digestion. It crossed the blood-brain barrier for cognition. The pupils got a little smaller. These patients tend to be very light sensitive and tear production went up and that went around the world and I'm so proud of that. What was exciting for me was ultimately in this last patent was about something we never considered as eye doctors was supporting the neurology of tear production.
Speaker 2:And patients who have chronic dry eyes tend to have other signs of systemic illness. They lean toward depression, they lean toward brain fog, sluggish digestion, fatigue or mental fatigue. It's much like the presentation we'd see in a POTS patient turned way down and was able to put together to figure out. Patients have chronic dry eye need to support that part of the autonomic nervous system. They're likely inflammatory patients who just don't have POTS. And for me that was kind of like going a full circle as an eye doctor to a patient being disabled, getting answers and then coming back to some answers for a chronic eye condition that tried to treat for years. So that was kind of exciting to me.
Speaker 1:Where do you see the future of research heading in autonomic dysfunction and what breakthroughs give you the most hope? I'm so excited, I think.
Speaker 2:I could live three lives and still be releasing new information. There's so much more coming I'm really excited about, again, I think, this hypermobility Ehlers-Danlos syndrome. We've got to get to the genetics of that. And then chronic inflammation is such a big topic where I didn't know I was inflamed. You know, how am I supposed to know? The ability to measure for chronic inflammation is so limited. And as doctors we learn to look at CRP and Cedrate blood tests and if those are normal, patients don't have inflammation, and that's wrong. The vast majority of inflammatory patients we see those two markers are just fine.
Speaker 2:So we've got to do a better job at picking up chronic inflammation and then spreading it beyond pods where we look at the bigger picture, like as we get older, for example, we get more inflammation. It's what we call inflammaging. If we do a better job with that, can we avoid these old age illnesses. Do we have to go down? You know? Depression, heart attack, stroke, whatever, fatigue, getting lazy? I think we can be proactive and be healthy until the bitter end. I'm certainly the most active person I know and I'm very proactive about my health. For that reason I don't ever want to go back to where I was before. So, taking what we've learned about chronic inflammation, autonomic nervous system and thinking bigger for patients and normal aging or normal conditions where patients don't feel as good as they could and they think, oh, I'm distressed or I should be eating better, maybe I'm not exercising enough. They're missing this and it's really easy to miss. So better labels, better treatment protocols for beyond invisible illness.
Speaker 1:For listeners who may feel overwhelmed by complex diagnoses. What message of encouragement would you want to share with them?
Speaker 2:Boy. I have been there where, like those 80 symptoms or so it was, it was so overwhelming and trying to think through the science, it just seems so contradictory. Trying to pick that apart was extraordinarily difficult. But again, there's always a reason for illness and as we release more and change labels it will get easier and easier. But the take-home message is never give up right.
Speaker 2:I did learn, and from the thousands of patients we see at POTS Care, if you can get answers with the least invasive procedures and medications possible, we come out better in the end. As inflammatory patients we tend to be very sensitive. For that reason, sometimes during the illness is more when I was sick, I didn't care what they had to do. I was so sick. I remember saying you could cut my head off, that's okay, whatever you need to do. But the reason I didn't do that is I'd look at my young son and say, well, let's do him too, and it was for multiple surgeries. We're not going to be doing that, we're missing something and we benefited from that. So the least invasive approach, the least risky medications or supplements as you approach it, the better chance you have of getting to the other side as a healthy, fully functioning human being.
Speaker 1:Is there anything that we've forgotten to or that you'd like to share?
Speaker 2:I have so many resources out there. I want people to be able to find help when they need it. I have a Patreon account called Pots Rebels and I'm putting a bunch of information there and we meet every couple of weeks. I answer questions, we talk about topics. That's been very fulfilling to me. I offer consults around the world to try to help guide people. That helps. There's a page on the POTS Care website called Inflammatory POTS that takes people through some of these chronic inflammatory conditions that we see that can drive POTS and if you're trying to figure things out yourself, that can be a good place to start to see. What has my doctor ruled out? You know, what do we maybe need to look into? Yeah, to help have a place to start.
Speaker 1:That's wonderful. I will make sure to have all the links available in the show notes to help them get in touch with you, and I'm thankful to be able to sit down and speak with you and to know that you are a real person that genuinely cares and you want to help others.
Speaker 2:I do. My heart bleeds for anybody going through one of these invisible illnesses. For all the spoonies out there I have been there there's ways out. We have never, literally never, seen a case of POTS where we look at and go boy, no idea what's going on here. That's just not a thing. There's always a reason for it. So, no matter how complex, don't ever give up.
Speaker 1:It's great wisdom to leave listeners with All right listeners. Until next time, don't forget your spoon.
