The Vagus Nerve, POTS, And MCAS

Christine Schaffner, ND

Welcome everyone to the Mast Cell Summit. I’m Dr. Christine Schaffner, and I’m thrilled to have my dear friend and colleague, Dr. Diana Driscoll on the summit with us. And we are gonna talk all thing POTS, all thing vagus nerve, and really the relationship of mast cell in this constellation of symptoms. So welcome Dr. Driscoll.

Diana Driscoll, OD

Thank you.

Christine Schaffner, ND

It’s really an honor to speak with you.

Diana Driscoll, OD

It’s an honor to be here Jin, it’s so great to catch up.

Christine Schaffner, ND

Yeah, it’s been a while. So I just am always, I always have learned so much from you and I’m excited to pick your brain and I always love starting these interviews with sharing your story I think, and many people who are listening out there, haven’t found answers, haven’t found the right treatment. And when you’re in the throes of this illness, it can be really a range of emotions and you don’t always see the light out of the end of the tunnel. So I would love for you to do your journey and look at you now. Obviously you’re thriving in life. And I just want people to have a moment of hope here.

Diana Driscoll, OD

Oh, excellent. I think that’s such a great message too. ‘Cause I remember the many years it was, oh gosh, 12 years or so of disability I went through that you do feel ultimately like it’s hopeless, and there is always an answer for illness. There’s always a reason for it. Just because doctors may not have found it yet or even the patients haven’t found it yet doesn’t mean it’s not out there. So it could just be right around the corner. So as everyone’s working hard to figure out some of these “invisible illnesses.” I think it’s really important to just remember to hold onto that, things can flip around quickly when you least expect it. Right? But as you know, I developed a pot secondary to a virus and it was on a mission trip in Costa Rica, but I can’t blame the virus. I can’t blame Costa Rica ’cause everybody else got the same virus and they did okay. But I was the one who started to develop these weird symptoms afterwards. 

Heart racing, I was tremoring, my blood pressure was going up and down and digestion was affected, horrible insomnia. It was so dramatic, but I was shocked that the doctors were not only unable to, but in some cases unwilling to try to dig deep to figure it out. And then my kids got sick and my son was disabled and it’s just a horrible, horrible journey. But a few years into it, I recognize that, “Okay, this is all new, they don’t get this we’re on our own here. So set up a research company, Genetic Disease Investigators. I thought maybe I’m in position to get answers. I’m an eye doctor, got the medical background, but maybe even more importantly, I’m in the body of a patient and I’m willing to donate that body to science to figure it out. And I had no idea it would take so long to get all the layers revealed, but ultimately was able to recover and my kids are recovered and now we’re helping others at POTS care.

Christine Schaffner, ND

It’s an incredible journey. And again, your story is, you’re not alone out there, right. There are people out there that it breaks my heart, a decade of just struggling until they really turn the corner and get back to life. And again, in your research, you had to be your own advocate in your own . And you know, you were really, these illnesses have been ahead of our time and our understanding, right? So the patient suffers, but you know, then we look back and put the pieces together and we’re seeing this more and more even with long COVID and things like this. But I would love for you to share kind of how did you connect the dots and really, how did you put your symptoms together in an understanding of what was going on?

Diana Driscoll, OD

Oh, I wish it was a straight line. Like disconnecting the dots and there you go, you know, it was all over the place.

Christine Schaffner, ND

It can be all over, yeah.

Diana Driscoll, OD

Took them and threw them up in the air. It was hard. And I remember one day though, oh, a couple years into it, I guess. And I was just writing down symptoms and they were always changing, which my doctor thought they were just like chasing, moving target. And that’s when they start to wonder if it’s maybe it’s up here in your brain, you know? But I thought I can’t have, like when I had 80 different symptoms, I can’t have 80 different disease processes going on. They’ve gotta tie together. At least some of them, you know, and started to look at different systems of the body. And for example, the digestive system, how many would tie in there or how many would tie into, oh, the brain, central nervous system, how many would be peripheral nervous system, and just started to cluster them and started to see some patterns. And the patterns were pointing to the autonomic nervous system to some degree, but there were so many sections I had of symptoms that just didn’t make any sense at all. I had no idea what those were and that took a while to peel back some of those. And then my kids, ’cause I was working on all three of us, they were different. We had some commonalities, but there were vast differences too. 

So it was years of just dealing with gazillion doctors, gazillion tests, trying to put this medical puzzle together. And it was very, very, very hard, but when answers started to come and I could start to peel it back, they were, oh years in between each layer. It wasn’t like, I was like, “Oh, I know what this is, blah, blah, blah.” You know, it wasn’t one thing. And each layer ended up being important. And then when I was ultimately on the other side of it, we looked at, okay, we’re all different to some degree, we have some commonalities, let’s start with those, but what are the differences and how could people end up in the same place or get worse or have secondary issues that could make them present differently, et cetera. And really tried to expand out or ’cause I thought might be in position to help a lot of people and not just me and my kids, you know, so that we spent a lot of time doing.

Christine Schaffner, ND

So yeah. Again, I hear you in that this is not often a linear experience. That was wise of you to just start seeing these patterns, and these clusters. And I guess when you look at that point where you started to feel like you were making progress in your health, do you feel like potentially started to click or shift within you? Any like understanding or any strategies you were starting to implement? Again, I know it’s not that black or white, but obviously.

Diana Driscoll, OD

Right, far from it, far from it.

Christine Schaffner, ND

When you feel like it’s gonna get, you know, get an understanding, more and more of an understanding, the deeper you went.

Diana Driscoll, OD

Yes.

Christine Schaffner, ND

Are these better now? So just walking us through that.

Diana Driscoll, OD

I will try. The first thing, and I cannot believe looking back now, it took me this long to figure it out. But the first thing I figured out and both my kids and I, was that we had high intracranial pressure and no one at that time, not a single solitary soul was looking at that in any of the invisible illnesses. And this is one thing I did get lucky on. Being an eye doctor, you were trained in that. We didn’t present as typical, so it was easy to miss that some of the symptoms were so persistent. And one time I remember I was looking down at my car radio and it looked like it was moving away from me. And I knew as an eye doctor, okay, it’s not moving. I could do a quick test on my eyes and realized which ocular muscle is not working right. And I thought what’s the number one cause of that? High cranial pressure. I thought, well, that’d be weird, you know? Oh no, that’s what it was. So figuring out something objective that gave us some immediate relief helped, but then trying to figure out, okay, that’s not the primary problem, that’s a secondary issue. What is that secondary to what happened? And then moving on to the next layer. But that was a significant step.

Christine Schaffner, ND

You know, there’s no accidents, right? I think in this position as an eye doctor, to be able to pick up on that sign, or you could have missed that easily.

Diana Driscoll, OD

Oh, I absolutely could have. I even like I used to play the flute when I was sick. That was like the only thing I had left. And after I played the flute, I was tremoring and I thought, “Okay, what could cause that?” Well, cranial pressure. It was subtle. And again, we didn’t present as like we would think of as typical patients, but indeed that was it. So absolutely I did get lucky. Yeah. My background was perfect for that.

Christine Schaffner, ND

And then you said that again, these are layers, right? And so what would you say was the next layer that really kind of started to make this, make a little bit more sense?

Diana Driscoll, OD

I remember it well. It was also as a process, right? Nothing simple. But clustering some of those symptoms I saw, they affected the central nervous system, peripheral and the autonomic and I sent out over 500 symptom checklists to patients with POTS, chronic fatigue syndrome, PTSD, interestingly. And looked at patterns in these symptoms. And in those symptoms, I tucked in 38 symptoms of anticholinergic syndrome. That’s a syndrome where if you ingest like a poison and it breaks down a neurotransmitter acetylcholine, it affects all those systems of the body. And I had a suspicion that was effective because of the patterns, again. And indeed the majority of those patients showed the majority of those symptoms. They would come and go and they wouldn’t be so bad. Like if you were poisoned, you go into a coma, seizures, and death, you know, not to that point. But there were symptoms that as chronically ill patients, we don’t go to the emergency room with saying, I’m light sensitive and constipated. 

We go in with, “I feel like I’m dying.” So those are ones we just try to ignore. We push through as much as we can, but those turned out to be important. It looked like at first blush it was a vagus nerve because the organs of the vagus nerve were not working well. Like my gallbladder shut down, for example. And they said, well, your ejection fraction’s pitiful, let’s remove that organ. I remember saying, “Well, wait a minute, is it infected like an appendix or something’s gonna blow.” And so no, it looks okay. And it’s okay. Is the opening where the bio comes out? Is it like stuck closed or something? No. I thought, well, if it’s not urgent, to me this sounds neurological. It sounds like the organ’s just sitting there waiting and says, let me know when you need me and I’ll kick out some bio and it wasn’t doing it. And that turned out to be really important. So the organs could function again, it wasn’t a vagus nerve problem. It was a neurotransmitter problem. So it’s more of a global issue. But as you know, the vagus nerves are anti-inflammatory nerve of the body. So working through some of the illness, when that wasn’t working well, we got worse in many ways. Yeah. And getting that back, going among the other systems of the body was significant. Now, is that important second.

Christine Schaffner, ND

So for people who obviously aren’t medically minded, the symptoms that you were talking about are related to acetylcholine and then people potentially don’t have, they’re having basically not, that neurotransmitter is not able to communicate or work in the body and leading to all these symptoms that you were experiencing. Are we summarizing that correctly for people?

Diana Driscoll, OD

Yes. I really wanted to pick it apart carefully. Okay. To get this right. So, I wasn’t sure if something was breaking it down like a poison would, or I wasn’t sure if the receptors were starting to shut down. In fact, you probably know, I guess, for the people out there, not PhDs here, right? You have to get so deep into this. I understand it can be numbing to go into this. But when you stimulate a nerve that the transmission goes down the nerve and it releases the chemical, the neurotransmitter, and that jumps across a gap called the Synaps and lands on a receptor. And then the receptor triggers the organ to work. So I didn’t know, is something wrong with the receptor? or is something breaking down that neurotransmitter? And I was able to figure out how to test the receptor and all the research to date then was that POTS was an autoimmune condition affecting the receptors. 

And they’ve been looking for years for why can’t we figure this out? Why is all the testing negative? And what I did was use a replacement for the neurotransmitter to test the receptor. I used in the case of the vagus nerve, it was nicotine, worked great. So I knew then that it wasn’t an autoimmune condition affecting the receptors. The receptors were fine. It was the neurotransmitter. And I wasn’t getting anywhere with trying to figure out if something was breaking. I just kept banging my head against the wall on that. And then one day I thought, wait a minute, could something be blocking its release, could something prevent the release of the neurotransmitter when that nerve is stimulated? And whenever you have an idea like that, or new idea of any sort, you first wanna go to existing literature to see if somebody’s already figured it out. And sure enough, that’s already been done, okay, that’s the most likely scenario. And if that’s the case, if patients either have the inability to release that neurotransmitter effectively, or if the nerve is damaged for any reason, it’s very easy to damage the vagus nerve, it’s so long. Could we just use those recept? Yeah, but no one had ever tried to do that orally. We can’t use nicotine because it is so inflammatory. 

It releases chemicals like elastase and collagenase that we had new tissue and actually worsen inflammation. So it was a real double edge sword. It wasn’t a treatment, it was a good diagnostic test, but not a treatment. So I said to work, trying to come up with something orally that would come into place and create basically acetylcholine, any genetic issue with acetylcholine. I wanted to have a workaround for that. I used my ancient organic chemistry to try to figure some of this out. And then I looked at the pathway and tried to put together everything that if something were low and say a nutrient, for example, that would limit our ability to produce acetylcholine, put that in. I put everything in and then had to work on the dosing for about three and a half years. I didn’t want the receptors to become numb if you will. And if you’re too heavy handed with this, they start to shut down and you have to be careful with that. 

Or you develop what’s called tolerance. And then that was fair, especially proud of the work and the genetics of it. No one had ever figured out how to work around that. I didn’t want people to have to know what their genes were to get help. And then I wanted it to cross the blood brain. So at the time when I was sick, I got so bad. I couldn’t even stay awake. I was asleep all, but like three hours. And I couldn’t even do that consecutively. I’d be awake maybe an hour and a half in the morning, an hour and a half in the evening. And that was a struggle. So I don’t have to get as ill as I did to appreciate the benefits of that crossing the blood brain barrier, but being able to stay awake was one of them. So, yeah. So now Parasym Plus back when I was putting it together and giving it to my kids and taking it, I was patient zero, they were patient one and two, and they helped me work through this. I called it VNNRs. I found an old sheet of paper and stuck under the drawer with VNNRs written out for the kids, with the ingredients. It was vagus nerve, neurotransmitter replacements. It’s interesting history before I figured out it wasn’t a vagus nerve problem.

Christine Schaffner, ND

And when you started taking what is now today, Parasym Plus, and I love it. I use it a lot with my patients. You know, was that one of the turning points for you when you started using that? Did your really shift?

Diana Driscoll, OD

Yes, it did. I wasn’t totally done yet. There was no one magic bullet, but yes, absolutely. And importantly too, I was getting, again, these new symptoms would come on just getting sicker and sicker. And I got to the point I had neurological symptoms. I was hallucinating and my doctors couldn’t figure it out. A lot of that was the mal absorption. And when that vagus nerve’s not working well, we can’t break down our food properly to absorb the nutrients from it. And my son got so bad. He developed osteoporosis, he broke his arm just throwing a ball, just putting on his coat, broke his arm. He missed over three years of school. He was so sick. And some of those dramatic symptoms were from severe nutrient absorption. And it was something that was like this invisible problem, because without Crohn’s or celiac or being an alcoholic or something, doctors don’t really think of that. Even my neurologist, I had all these neurological symptoms and it never occurred to him that, oh, maybe you’re not absorbing nutrients, not even a chance because we have vitamins and everything. That just doesn’t happen unless you have some illness and I didn’t have any known illness. So that was important.

Christine Schaffner, ND

You created your own medicine. Yeah. No, I love that.

Diana Driscoll, OD

Basically.

Christine Schaffner, ND

And so, you know, so we established the role of the vagus nerve we’ve talked about and some of the symptoms, acetylcholine, obviously is a huge communication in the neurological system that helped to solve–

Diana Driscoll, OD

That’s right

Christine Schaffner, ND

Really illegal symptoms. And then I wanna, I wanna tie this into mast cell in a moment, but I wanna, you know, just stay on this something you said, ’cause I think it’s a great point to educate that POTS is not a vagus nerve issue. You know? So when we think about POTS, there’s a lot of still trying to figure out underlying causes, what people are challenged with and where to start. And so can you tell us what you mean by POTS is not a vagus nerve issue? ‘Cause I think sometimes that gets misunderstood.

Diana Driscoll, OD

Yeah. I think if it there’s patient out there, they’ll know what I’m saying. It’s so much worse than that. You can have vagus nerve problems, patients do, they have injury and things like that. They can develop constipation, sluggish digestion. I was sick from head to toe and it was so miserable. It’s hard to describe the suffering because it wasn’t just organ discipline. Sometimes it felt like I was on fire from the inside out and trying to tell a doctor, I felt like I’d been poisoned, electrocuted, and like my blood is on fire. They don’t know what that means. What are they gonna do with that? But it was just so much suffering if all it was a vagus nerve problem, I think it’d be easy. But it’s so much more than that. And that’s kind of what tied into the, is some aspect of inflammation interfering with this neurotransmitter? What type of inflammation is that? What cells are getting activated? and that’s where mast cells came up and mast cells are under control of the vagus nerve. A lot of inflammatory cells are under control of vagus nerve. So if we don’t keep that working, some chronic inflammation like that takes off running and it has very little ability to get rained in. And that’s where some of those chemicals released from inflammatory cells, from the mast cells and the inflammatory cells they attract was causing some of that on fire kind of failing .

Christine Schaffner, ND

Yeah. I think about, you know, like burning symptoms that can present in lots of different ways in our community. So extremities, the brain skin, these different symptoms. So would you say it’s the mast cells plus the recruitment of the other inflammatory cells?

Diana Driscoll, OD

Yes.

Christine Schaffner, ND

That’s at the root of that symptom for you and–

Diana Driscoll, OD

That’s right. mast cells may or may not be primary. But they get caught up in most, any chronic inflammation. So when it starts to cause those symptoms via skin, or that feeling, they do have to be considered. And we do see it, POTS care, true mast cell patients and those patients, their trip taste is always, always, you can’t get a measurement that’s normal, but in the ones where the trip taste is normal, I think we have to keep our thinking caps on. We can still help those people, but we don’t wanna necessarily jump to mast cell’s the only problem where we could cut short, some of the help we can provide for them. So they’re horrible cells. When you talked about the burning, it was, I don’t even know that burning is quite the right word, but it felt like there was heat rising up in my body. 

And then it felt like my brain was on fire, which I do realize no one knows. And then the heart rate would take off. It was like a major, I would say panic attack, but it wasn’t a panic attack. I would tell the doctors, it’s like, my body’s panicking without me. And my body was just taken off racing and I couldn’t bring it in. And then when that, those horrible episodes occur just one after the other, after the other, there’s a suffering is so intense. Yeah. So it is, if you say it’s burning to a doctor, I think it limits, again how bad it is, but we don’t have good words for it, right? No, we don’t have a misery scale. We have a pain scale, which is great, you know, but it wasn’t that I was in so much pain. It was that I was so miserable.

Christine Schaffner, ND

Like a differentiator. And I wanna agree with you there to the language is limited and .

Diana Driscoll, OD

It is.

Christine Schaffner, ND

A lot of the symptomology with what people are going through. And I think that makes it challenging, especially still in the conventional world to really kind of honor and try to go as deep as probably they need to, when they hear these symptoms, they kind of, they go to these like, “Oh, anxiety.”

Diana Driscoll, OD

Exactly, exactly.

Christine Schaffner, ND

But I think the language limited to describe the suffering.

Diana Driscoll, OD

It is. 

Christine Schaffner, ND

So, then how did you approach that layer? I would love to get more of your thoughts on mast on the moment, but I would love to hear your thoughts on that layer of the illness. How did you have develop deeper understanding of that?

Diana Driscoll, OD

Right. Well, when I started to suspect it just from presentation, antihistamines are important and mast cells, and the cells they recruit spit out histamine as well as, I don’t know that we know 60, maybe other chemicals, a ton. But that’s a significant chemical, especially when we’re dealing with in a lot of POTS cases, not all, but in a lot, the fast heart rate and blood pooling, et cetera, is a cardiovascular consequence of some aspects of inflammation and histamine is bad on blood vessels. It causes them to leak, the cells separate, which is if there’s a point to it, because in an area of injury, like if you sprain your ankle, it sends those healing elements. Right outta the blood, right into the tissue to start the healing process. So it’s important, but it does cause pain and the other chemicals do it causes swelling. Of course, ’cause the fluid gets out redness because the vasodilation, but in a sprained ankle, there’s an ending. There’s healing and the vessels seal. And we’re good to go. But if you can imagine having a sprained ankle a little bit all over your body, all the time, you’re kind of getting a hint of what we’re dealing with with inflammatory. 

So histamine does need to be blocked for a while because there are histamine receptors right on the blood vessels. Let’s not have it go there. Okay? We’re trying to work on those blood vessels. And then we look at other histamine receptors and see, do we need to address that or not? And then of course there’s stabilizers, , chromalyn, depending on where we suspect these cells are getting activated. And that helps too. We always get the vagus nerve working. Otherwise you’re fighting an uphill battle and that’s usually a good start for most people. Usually when people get sick enough, they’re so sensitive, incredibly sensitive, I was one of those. And I remember telling a doctor, if you give me a medicine, okay, first I’m gonna tape it to my forehead. That goes, well, we smell it. And if we’re doing well, I might lick it. He said, “What do you mean?” I’m just so sensitive. And patients get sensitive to most, any food to chemicals, to 9 to, you know, stress, anything where is a ball of sensitivity and that’s an inflammatory reaction. So it’s great to just calm things down a little bit with a stabilizer, take a step back, let them take a chill pill if you will. And sometimes that takes the edge off too.

Christine Schaffner, ND

Has it been your experience that you’ve seen an increase in how sensitive people are that come to your office over the years?

Diana Driscoll, OD

They’ve always been sensitive, always, but what we did see was with COVID, more inflammatory. So no surprise there ’cause so many patients are triggered by viruses or certain bacteria, other things that can trigger like stress, injury, anesthesia. And sometimes we never can point to a trigger. We were pretty much prepared for that when COVID hit, I thought this virus could be significant enough to do it. The virus I got in Costa Rica, the doctors suspected, we all got some form of a SARS virus, ‘ cause it was so bad in the lungs. We all were in the hospital at some point ’cause we couldn’t breathe. And I thought this is a SARS virus and let’s see, and indeed that’s what’s happening. So it, as you know, in some patients they’re recognizing how it can kick off and abnormal inflammatory response in those predisposed. And it’s more the inflammation that gets people than it is the virus itself. So it did kind of open up more of an understanding of what patients with POTS deal with, which is oddly good, I guess. I mean, how do you say that? I mean it’s horrible, we’re going through a pandemic. It’s horrible, what’s happened, but it has validated quite a bit of that presentation.

Christine Schaffner, ND

Yeah. And your tools were ready right to handle.

Diana Driscoll, OD

We were already seeing the patients, right? It was just, it was seamless.

Christine Schaffner, ND

Yeah. Right. I think community has a lot of the framework and tools to really support patients who have long haulers, long COVID because essentially we all are looking at these post infectious syndromes and the inflammation that they, right. And so anything unique to long COVID that you see that’s different from what has walked in the door before?

Diana Driscoll, OD

You know, it’s interesting ’cause we’re all still learning about it and typical of, I guess, any virus, but there’s more attention to COVID you have to make sure the lungs are actually okay. And the heart is actually okay. I think post COVID patients get fair amount of attention initially, ’cause they feel like I can’t breathe, I have chest pain, my heart rate’s all over, my blood pressure’s . And the focus goes to is their structural damage. And that’s important to rule that out. So I’d encourage patients to go through that regular stuff, go through it, make sure everything’s okay. But typical of inflammatory, POTS patients, postviral usually, it’s fine. It’s like, it’s fine. And then they go to, okay, so let’s start antidepressants or something. It’s just the same horrible journey. Their validation goes out the way. And that’s exactly what my family went through. And it was beyond frustrating, it’s really just wrong. I wish I’d known then what I know now, there’s no way to do that. But I think the tendency is if we can’t recognize it and identify it, it doesn’t exist. 

And I knew that wasn’t true. There’s plenty of things we don’t measure yet, but we can’t identify things if we don’t measure them. And our ability to measure certain things is getting better. So much like the discovery of bacteria, for example, you know, before a microscope, usually don’t even wash your hands before surgery. They didn’t know it was important, you know, brush off the dirt. But when someone invented a microscope and they saw those little things crawling around, they said, this might be important. And then they started more sanitization and ultimately antibiotics, et cetera. It changed medicine ’cause they could see it. And that’s what needs to happen in invisible illness. We have to do better at measuring some of these things, and when we do there, won’t be “invisible illness.” It’s not gonna be invisible. You can point to it. And then ultimately my goal is to identify the genetics of it. So either we can change the genes, which I don’t even know what to do with that ethically, or patients can know from birth if they have some challenge there so that they have a way to attack that, so they don’t have to get sick. So it’s a lofty goal, but that’s my personal mission.

Christine Schaffner, ND

Well look at what you’ve accomplished so far. I have–

Diana Driscoll, OD

Well, thank you.

Christine Schaffner, ND

Yeah. You’re on your way. If anyone’s just–

Diana Driscoll, OD

Just recovery was great.

Christine Schaffner, ND

Oh my gosh.

Diana Driscoll, OD

I talked to one patient. She said, “Diana, if I had recovered from this, I think I’d be on a beach in Hawaii.” But as appealing as that sounds, this is my joy because that bond with patients is so special ’cause they won’t talk to someone else who’s gone through it and recovered. They won’t get there. And it brings me right back. Every patient brings me right back to how horrible it was and you wanna help, you know?

Christine Schaffner, ND

Yeah, with the knowledge you have, it’s like how can you not, right?

Diana Driscoll, OD

Exactly, exactly. Can’t exit stage left and just release the information, “You guys are gonna be good to go.” ‘Cause that’s probably not the case. It takes a long time for diagnostic and treatment protocols to shift, long time. And the patients, like me, were caught in that in between where research is moved beyond where practitioners are and it takes a long time for that to all catch up. So what do we do in the meantime? And it’s hard.

Christine Schaffner, ND

I know some people might be curious, you’ve alluded to that there are a few different types of POTS in your framework and you mentioned inflammatory POTS. And would you be able to kind of walk us through your, you know, is there a way, I know you do a lot of thorough workup with patients and you really get a deep understanding of their biochemistry and their physical exam and all of that. But there, patterns that you kind of put people in, like pattern or patterns or buckets?

Diana Driscoll, OD

We’re very careful with this. So, I don’t know.

Christine Schaffner, ND

I don’t know.

Diana Driscoll, OD

What’s that?

Christine Schaffner, ND

I don’t wanna put you on the spot there, but does anything that you feel comfortable sharing, you know, around that?

Diana Driscoll, OD

I do. I think it’s real easy to see a POTS patient and lump them into the same group as everybody. I’m so, so, so much a control freak for each case. And we really wanna be very careful we don’t miss something important. So for example, you don’t wanna miss a heart problem. That would just be silly. Right? So cardiologists need to rule that out. There’s some neurological diseases that initially present with POTS, like ALS or Parkinson’s, Lou Gehrig’s disease. You don’t wanna miss those. And the treatment for that would be completely different. Nothing that we could handle at POTS, but they need to see a neurologist and work through that. We had an interesting case. Metastatic conditions sometimes can present with POTS, that’s kind of important. But we had a case of someone who was told she had POTS and she was on treatment for cancer. I thought, okay, we need to slow down and let’s evaluate this carefully and went through some symptoms as we did with all the patients to requalify them, to see, did she have symptoms like a high cranial pressure, vagus nerve problems or acetylcholine issues or what have you, that flushing on fire feeling? You know, anything that suggested a hint of abnormal inflammation. 

She had none of it, but her orthostatic tolerance, ridiculously horrible and looked at that and said, I don’t think this is it. There is a very rare autoimmune condition that affects autonomic receptors. And interestingly, some cancer medications can trigger that autoimmunity. And indeed that’s what it was. And the way it was figured out was she developed encephalitis and was in the hospital. They called her husband and said that she’s going nuts. And she was going nuts for five days before someone recognized it. That it was affecting the brain and they were get able to get her on IVIG this is a horrible case, ’cause then she has to go off the cancer mat and is dealing with that. But I thought had we just taken her in ” like, yes, it looks like POT. We would’ve done her such a disservice. So we really are very careful about making sure we’re seeing the patients we should be seeing. And usually patients come very fully evaluated. They’ve gone everywhere, what they see us everywhere. So we look at all those records and just make sure nothing’s getting missed, I think that’s one of the biggest fears that I had as a patient I’ve seen in many of our patients that it feels like there’s something, it feels like you’re being eaten alive by some and we have to make sure we’re not. 

Christine Schaffner, ND

Yeah, no, I always appreciate how thorough you are and how yeah.

Diana Driscoll, OD

Very kind, makes people crazy.

Christine Schaffner, ND

But I mean, it’s, it’s great to be that really thorough investigator and detective for people and you know, that you can trust too your, your approach and your treatments because you, you know that you’ve uncovered all the stones you, you need to. So I am no, I think that is, that’s really great that you guys are dedicated so thoroughly. So.

Diana Driscoll, OD

I have a great team. Yeah. A great team.

Christine Schaffner, ND

Yeah. It doesn’t happen without that.

Diana Driscoll, OD

That’s the truth.

Christine Schaffner, ND

So, this is, I always learned so much from you, Diana, and kind of, as we kind of wrap our conversation, just bringing in it back to the mast cell community tuning in, you know, any other pearls that you wanna share in your experience around mast cell and POTS that you wanna make sure those out there might not have put together, might not have thought about in helping to approach their, road to recovery.

Diana Driscoll, OD

Right. I think just staying in the science is important in any invisible illness. So if the testing from is negative, keep your mind open to the possibility at something that’s mimicking. And there are lots of inflammatory conditions that mimic, and I see that heartache of patients stopping with that diagnosis when maybe something else is getting missed. But in many forms of chronic inflammation, histamine is an enemy. So antihistamines are usually your friend, And if you respond very positively to that, there’s something going on, involving likely some chronic inflammation. You wanna make sure the neurology is as good as it can get the supporting the acetylcholine levels for not just the vagus nerve, but even the lacrimal nerves that produced tears. We found those were affected and patients were going on to chronic dry eye, dry now. Now they presented much like a Sjogren syndrome patient. And indeed that wasn’t what it was and then the brain, the cognition. So when we’re dealing with inflammatory POTS and a cardiovascular response, it’s a lot about the blood vessels. We wanna take good care of them. 

And as patients start to recover, ultimately getting back to exercise or movement, you know, just increased blood flow can be really helpful and teaching people, whatever is going on in their body, to try to notice if there’s a trigger for worsening and you know, with mast cell, that’s very common. And it doesn’t mean they’ll never be able to go back to whatever that trigger is. But as the inflammation improves, they oftentimes can. But during recovery, it’s great to be able to identify those and set those aside to improve the outlook there and calming inflammation like Keto Tiffin, or even Cromolyn, for example, will help calm mast cells, also calms eosinophils, basophils. You don’t necessarily have to know your strict diagnosis to get some help with some of those things. ‘Cause I know many of us flounder with the lack of a specific diagnosis, we might know it’s inflammatory. 

There’s some things we can do right then, we don’t have to have a label to start treatment. So I remember it’s an eye doctor in training learning, okay, it’s great to get a label on a condition of eye. Absolutely. But before you figure that out, treat what you see. If you see an infection, treat an infection, if you see inflammation, treat inflammation and then just keep going after the label. I think in so many invisible illnesses, we don’t have good labels, but we can treat what we see. So control that inflammation, vagus nerve’s really important and Parasym Plus helps with that. But it’s hitting some of those chemicals can help too. And patients can start to improve and recover.

Christine Schaffner, ND

Yeah. Really great points. And no, I love that. Now as eye doctors, you treat what you see.

Diana Driscoll, OD

That’s right. I know it’s such a concept. I met a doctor, they could see inflammation on MRI. And I said, “Can you treat that?” She goes, “No, not without a label.” I go, “What? You can see it.” It just didn’t make any sense to me that someone could suffer that much. And they weren’t even willing to give it a whirl, you know? So we can be safe, cautious, and yet proactive. Even without a label, there’s a way to walk that line. And unless we make that effort for our patients, they’re gonna suffer much more than they need to. So, yeah.

Christine Schaffner, ND

Great advice. And I’d love for people to know where they can find more about POTS care and Parasym Plus and whatever information you wanna share. So people can go deeper with some of the nudge that you just touched on, your knowledge is so deep. You cast a lot of broad strokes and sharing of some things for people to think about. So where can people find out more about you and your work?

Diana Driscoll, OD

Parasym Plus, and New Parasym Plus Eyes is at vagusnervesupport.com. It’s the company TJ Nutrition, that works off of the patents I’ve gotten for that. ‘Cause that was all new. And then I’m at potscare.com. I’m other places too. But those are probably the best place is to find some of that. And that’ll take you other places, but you just can’t be deeply into this for 15 years plus without a lot of information getting discovered. And it’s been quite the. So I try to release everything I learned to help as many people as possible.

Christine Schaffner, ND

You’re doing an incredible job.

Diana Driscoll, OD

You are too kind. You are too kind. You were doing the job of getting the word out. So in helping your patients, of course. So it does take a village, doesn’t it?

Christine Schaffner, ND

Yeah. No, I feel like we’re team effort. All of us, both, but no, I, again, just appreciate your passion and dedication and all the knowledge that you’ve uncovered for us. So thank for being part of the summit, it’s always such a joy to connect with you.

Diana Driscoll, OD

It was delightful. Thank you Christine.