199: Listener Q&A with Dr. Tania Dempsey — Mast Cell Matters

Check out the original post here with The POTSCAST.

Dr. Dempsey answers questions about MCAS and depression/anxiety/fatigue/brain fog; physical triggers; Kounis Syndrome; whether it’s worth it to allow “small” flares in the name of pizza or other small joys; treatments such as stenting for venous compression; how long to try each antihistamine; and much more.

More information about Dr. Tania Dempsey can be found at https://drtaniadempsey.com/.

If you liked this episode, we hope you will click subscribe so that you don’t miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

 

Episode Transcript

[00:00:00] Jill Brook: Hello, Mast Cell Patients and lovely people who care about Mast Cell Patients. I’m Jill Brook and this is Mast Cell Matters, where we go deep on all things related to Mast Cell Activation Syndrome, or MCAS, with the help of our wonderful guest host, Jill. Dr. Tania Dempsey, world renowned mast cell expert, Cornell and Johns Hopkins trained physician, teacher to other MCAS experts, and researcher extraordinaire. Today she is going to be our guest to answer listener questions. So thanks to everybody who sent in questions and let’s get to it because Dr. Dempsey’s time is so valuable. Dr. Dempsey, thank you for being our guest expert today. Dr. Tania Dempsey: Oh, thank you for having me. I’m so excited. I love answering questions. Jill Brook: Oh my gosh, we love that you love answering questions, because we have a lot. I’ll just get to it because, like, one thing is that I’ve kind of shortened the questions down to just the essence of the

[00:01:00] question, but a lot of these come with longer messages about how people are struggling, and I’m sure you know all this stuff. So, so anyway, this will be great! Okay, so the the first one is, could you please do a podcast episode talking about MCAS and what we know about how it can affect depression, and what options are available to treat this, or is it just the normal MCAS treatment? Dr. Tania Dempsey: I would answer this similarly to a question about anxiety or about some other, you know, psychiatric or neuropsychiatric symptom. So, similar there, there may be some nuanced differences, but, you know, generally speaking, depression is really multifactorial. There may be a genetic basis, okay?

[00:02:00] So, and, and I don’t think we understand all the genetics of it, but, but, you know, there are patients who have family histories of mental illness and various kinds, and maybe it’s depression, right? So, we know that there’s the genetics of it. We know that there are environmental factors that might bring out the genetics. And we also understand that there’s a very important connection and interaction between the nervous system, the brain, and the immune system. So if we think about our, so, so I guess, well, let me, let me say one more thing, that I think that there is a predisposition to certain MCAS patients having more neuropsychiatric manifestations like depression versus other patients who might not have that vulnerability and maybe, so maybe that’s somewhat genetic, okay, because it’s interesting, right? I think people listening will,

[00:03:00] will relate to this, right? There are some patients who have more of the, the GI symptoms and some patients have more skin manifestations or respiratory manifestations. Often it’s multiple systems involved, but a common manifestation, but it certainly doesn’t involve all MCAS patients, is depression, or anxiety, or both, OK? And so I think there’s a, again, like a vulnerability and then there are environmental factors that our immune system interacts with, right? And so the mast cells are our front line for our immune system. They are registering everything that is potentially bad for us, right? They’re going to help defend us if there’s something bad in our environment. When I say environment, I mean it could be some kind of stressor. It could be a traumatic event. It could be an exposure

[00:04:00] to a chemical. It could be a, a allergen in the air. It could be something you’ve eaten. It could be an infection. It could be a virus or bacteria or a parasite, right? So the list goes on. But basically the mast cells are, again, there to defend us. And we have lots of mast cells in our nervous system and they line all the nerves in our, in our body, including the brain. So if you think of a nerve like a, like a wire and that’s sending an electrical signal and you imagine that wire is surrounded by these mast cells and the mast cells are reading something as foreign, bad, right, and they degranulate, they’re going to release these mediators that are going to talk to the nerve and various, there, there are nerves in the brain and there are other immune cells in the brain. There are these cells called astrocytes and there are

[00:05:00] microglia and there, so there are all these other immune cells and then there are the nerves, the neurons. And the mast cells are talking to all of those cells, and they’re sending the signals, and they themselves, those various cells, also can release various mediators and cytokines, and, and send a signal back to the mast cell. So we can set up a vicious cycle of inflammation. First and foremost, that’s the way to think about it, that, that it causes inflammation in the, in the, in the brain, in the nervous system, and for some people, that inflammation is going to cause it, depression. For some people that inflammation is going to cause a different neurologic or neuropsychiatric event, so, or, or, or effect. So, so how do you address that, right? So number one, always, step one of everything, anything we talk about with MCAS is you have to look at your triggers and you have to be able to identify them and eliminate them. And this can be very

[00:06:00] difficult because sometimes there are triggers in our environment that we have not considered. But it’s important to, to work with somebody to start to think about these triggers. It could be an emotional trigger. It could be, again, something, something in the house you’re living in. It could be mold. It could be formaldehyde. But it could be a VOC, and it could be a chemical. Maybe you live next to a farm that’s spraying pesticides. Maybe it’s you caught, you got COVID, or you have Lyme disease. So again, lots of different triggers and you have to identify them and you have to work to eliminate those triggers because otherwise the mast cells will continue to react, right? And then, you know, as you’re, as you’re working on that piece of it, then you also have to be working on what, what can you do to calm the mast cells down, right? Either you’re doing things to block the mediators, like antihistamines, or, or the leukotriene

[00:07:00] inhibitors, or, you know, there are various things that we use that sort of block the things that mast cells produce, and, and by blocking those things, you can reduce inflammation. Or you’re, you’re going to use things that stabilize mast cells. So the answer is, you know, the person actually who asked that question said, you know, is it just treating the mast cell? And, and so, but I think it’s more than that, right? Because it’s because if we’re talking about depression directly, there may be other things that need to be done. Sometimes antidepressants need to be used. And it turns out that for some patients, antidepressants are also mast cell stabilizers. Certain classes of them have activity against the mast cell, but on the other hand, there are going to be patients where those drugs may not be right, may actually make MCAS worse. That’s, that’s the dichotomy in just about everything we do, right? We have these great tools and, and drugs and nutraceuticals and

[00:08:00] other things that could be great for one person, but really bad for another person. But antidepressants may play a role. And so I think there’s a lot of fear over those drugs in this community and just in general. But maybe we don’t have to be as fearful. Maybe it can be helpful. Maybe it needs to be used, along with the mast cell targeted therapy. Sometimes, if it’s, let’s say the depression is being driven by an infection like Bartonella. Right, that’s, that’s an interest of mine, vector borne infections. I have seen infections directly cause depression. I think it’s happening through the mast cell, but I can treat the mast cell and I can try, but I won’t get, I won’t get it under control until I deal with the infection. And so in some cases, I might be using herbs, or I might be using antibiotics, or there’s some other treatments we use, and that’s actually treating the depression, and then they’re getting better, and the, the

[00:09:00] symptoms either resolve or, or improve. So, I think about it again, it’s multi factorial, you need to look at all the different things that are, that are affecting you, it’s very personalized, everyone is different, and everyone’s triggers are different, everyone’s mast cells are different. Everyone’s mast cells are producing different chemicals. And so it is complicated, but I think if you start to think about it this way I think that first of all, I think it, it takes the stigma off of depression. I think we have to really work on that because I think mental illness is something that has tremendous stigma and and, and the problem with, with a lot of patients who are struggling with MCAS is that they are often sent to a mental health professional because they think it’s in their head, when it really is an inflammatory process that’s in their head. And we need to work on the inflammation however,

[00:10:00] however we can. So I think that this is really critical and I think that by starting to understand it in, in this way, I think, I’m hoping that, that we start to think about these symptoms differently. Jill Brook: Yeah, and it’s so interesting that you say that, how maybe for genetic reasons or other reasons one person’s inflammation might go one place in their brain, or head, and somebody else’s might go somewhere else. I’m actually kind of lucky because when I get my, I call it my anxiety hour at night sometimes, it never comes by itself. It comes with ringing ears and a really big face flush, but at least that’s kind of lucky because it is a little reminder to me that, yep, this is a mast cell thing. Think about your mast cells. You’re not, your life isn’t falling apart. You’re not, you know, you’re not needing to, you know, maybe make some huge life change. It’s not that that’s going on, it’s clearly just the mast cells having a moment. Dr. Tania Dempsey: Thank you for sharing your story because I think that’s

[00:11:00] helpful, right, because that’s the whole point of what we’re saying is that, that, that depression may be a physiologic reaction, and have nothing to do with your life, or, or some event, or some, it may, it may have nothing to do with that. You know, and that’s what a lot of patients will say. You know, they’ll say, I’m depressed but I don’t know why. Know, because, because my life is fine. I don’t, I don’t see anything, like, troublesome, so why, why do I feel this way? And it’s because it’s, it’s a physiological reaction. Jill Brook: Right, right, that’s amazing. Okay, so you’ve mentioned that anxiety could also fall into that category. While we’re talking about this, I’m searching my mind, is there anything else that might fall into this category of same things like, I don’t know, panic attack, or fatigue, or… Dr. Tania Dempsey: Yeah OCD.

[00:12:00] Bipolar type 2 can be in this category, cognitive impairment, so memory issues, trouble concentrating. I would put that all actually in the, in the sort of the brain inflammation category. Jill Brook: Okay, wow, that’s really, really good to know. Okay, so you just answered a bunch of the questions because people had asked specifically about each one of those things. And what I’m hearing is that they all kind of have the same, similar explanations, similar approach. Dr. Tania Dempsey: Exactly. And I think, really, again, the question that I ask when I’m talking to patients is sort of like, you know, why, why are those symptoms manifesting this way in one person, and another

[00:13:00] way in another person, right? Why is somebody going to have anxiety versus the depression, or sometimes both, or the OCD, or the brain fog, or why? And I ask that question a lot. I don’t always have the answer. I think it is a vulnerability. It’s something about our body and how, how the mast cells in our bodies may be responding and reacting. How those mast cells, the, the actual mediators that the mast cells are making. I mean, in fact, you know, we, we now, we’ve, we’ve identified over 1, 200 mediators that mast cells can release. Now, a year ago, I was saying over 1, 000, and five years ago, I was saying over 200. So, so the reality is that I think we’re going to find more, but there’s a, there’s a encyclopedia of cytokines online. It’s called cells-talk. com or COPE, C O P E, the there’s a scientist who has put

[00:14:00] together this encyclopedia of cytokines and he, works with Dr. Afrin and I and, and he has scoured the literature, he’s putting together all the information, and he has now identified 1, 200 mediators that again, that, that have been found in the literature that can be released from mast cells. These mediators all have, the point of that is that they all have different functions. They all can bind different receptors. They, they can, they can send different signals, right? Because the receptors, when they bind a receptor, there’s a signal that they’re sending to the cell. And so if you imagine that those signals are going to be different in everybody, right, depending on these mediators, then you can see how downstream the symptoms are going to be different. Jill Brook: That’s amazing. So that explains why sometimes you hear somebody’s MCAS is causing them to have their blood be too thin and other people too thick. Dr. Tania Dempsey: Yes. Yes, Exactly. Exactly. Jill Brook: Is just amazing.

[00:15:00] Okay, and there’s still so much left to learn about this. So for the next question, this one’s maybe like a little bit lighter, but a lot of people ask this question that is, I think, related, which is, is it harmless to allow yourself to get acceptable, I’m putting that in air quotes, flares, for the sake of like enjoying a pizza? So if somebody says, well, okay, my face is going to turn red for a while and maybe I’m going to get some GI symptoms, but oh, it’s worth it because I love the pizza. I guess what is your reaction to that kind of thinking? Is there, is there any sort of like hidden downside to allowing extra flares? Dr. Tania Dempsey: My knee jerk reaction, okay, is, is, well, no, you don’t want to constantly, you know, be be susceptible to these flares or cause yourself to get a flare because every time you get into a flare, you have that potential for

[00:16:00] changing the, the threshold for what’s required to sort of go into a flare. So what I, what I wonder about, and this is something that we’re studying, is, you know, over time we know that MCAS can escalate and get worse with age, kind of, okay depending on the patient, doesn’t always happen, but, but, you know, if it’s sort of like untreated over time, the, the mast cells establish a new baseline of reactivity, so they start out maybe a little bit, you know, more reactive, maybe they’re seeping out some of their mediators, but generally you feel okay, and then, then there’s an event that happens that makes them a little bit more reactive, and then over time, that, that, they, they’re now at a new baseline of more reactivity. So I guess when I think about, you know, if you force yourself essentially to have a reaction, are you now establishing a new baseline and maybe you’re gonna the next time you have a pizza it’s gonna be even worse potentially, right? So that’s the one side of it. The other side of it is, I guess if you know

[00:17:00] that the reaction is short lived, you know how to deal with the reaction, it’s not scary, you’re not anaphylactic, and, and you feel like it’s about a balance between your quality of life also, or, you know, and that’s something that you, you really, really enjoy and would miss not having, right, so as long as you’re prepared for what that’s going to, you know, lead to, I guess, I guess it’s okay. But I, but I think that, I think the hard part is for people to sort of deal with the sense of, I’m never going to be able to do that again, and so they want to make sure that they, they can, and I think that’s, I think that’s hard. I, I’m, I’m mixed on this because I don’t know if anybody should be having pizza, you know? Like, I’m just going to be honest, you know. My patients know that I’m, I’m really a stickler for, for diet and healthy living and I really

[00:18:00] just want people to maximize their health. I want them to live as healthy as possible for the rest of their lives, even beyond the MCAS part, right? Just, we just, you know, we have so many things to combat all day long. We’re breathing in toxins and, and particulates in the air. And it’s a whole other topic, actually, that I’m really interested in. But you know, I’m sort of like, well, do we then have to add fuel to the fire and eat things that are really just not good for us. Again, I think maybe there are some people that can do that and get away with it and you have really no major ramifications, but I think for the most part, I think I think most people are not as healthy as they can be or should be. And and so I think that if you can avoid things that potentially are bringing your health down, probably is gonna be best for you long term, but again, if it, it’s about that sort of balance in, in your life and what’s more important to you, you know. Jill Brook: Yeah, oh, I think that’s

[00:19:00] so smart, and I think you know your patients well. Yeah. I always try to also figure out what’s the difference between true joy and, you know, basically a food addiction and I know that for myself, as a former big time sugar addict, what I learned was, once you get over that, you don’t miss it. And now, you know, healthy things make you just as happy as unhealthy things used to make you. So I wish I had just, you know, switched over many years earlier, because it’s real easy to convince yourself that you’re getting joy when really you’re just feeding an addiction. Dr. Tania Dempsey: But you bring up, a very good point and I think that, I think there is maybe a little higher this is, this is anecdotal, but maybe a higher incidence of MCAS patients who do have, I’ll call it disordered eating, maybe that’s the term I’ll use. Not true eating disorders necessarily, although that can be the case, but, but, you know, I think

[00:20:00] that, that there’s this disordered eating food addictions, I think that that actually can very much be like a, like a manifestation of MCAS. Jill Brook: Oh. Dr. Tania Dempsey: And I, and, and as we talked about, you know, earlier about brain inflammation, I wonder about how much of this sort of feeling of the cravings and needing certain foods, how much of that is being driven by inflammation in the brain. What I’m finding, which is really interesting, is that, I mean, there’s lots of connections, when you look at the literature, there’s lots of connections between mast cells and the metabolic, the endocrine system and metabolic system. So, we know that there’s an interaction between insulin and mast cells and sugar. You know, kind of, we know that the mast cells are involved in the metabolic process. And, and in fact, not to, not to get too sidetracked, but, you know, they’ve done studies where they used, and this was a

[00:21:00] mice model, where they had two sets of mice. I, I, I tell my patients this story all the time, but they, and I don’t know how they did this, but they raised a set of mice without mast cells. I’m not sure how you do that exactly, okay? But one set of mice had no mast cells, one set of mice had regular mast cells. They fed them a, the equivalent of a western diet, you know, a standard American diet, right? A SAD diet. And the mice without mast cells did not gain weight. They could not gain weight, regardless of how much they were fed. And the mice with mast cells could gain weight. And they could sort of mitigate some of that by using mast cell stabilizers, like Cromolyn. So, this isn’t mice, okay, and this is not and this is like a limited study, but I’d like to think about it that way because when we have patients who say they gain weight very quickly, they lose weight very quickly, they, they know that there’s a metabolic part of their, their, their, their symptoms and their condition,

[00:22:00] you know, I know that it is, it’s, the mast cells are driving that on some level. So I know that there’s a metabolic piece to it. I do think there’s a brain inflammation piece. And so what I’m finding, and again, this is anecdotal, but I think there’s some support for this in the literature. And I, I hope that I’ll be able to publish on this. I have patients that I’m using GLP 1 agonists, so these are Ozempic, Mounjaro, Semaglutide, Trazepatide. Now I’m not saying that, that, that everyone should use this, this is, you know, this has to be done very, very, very carefully, there’s lots of downsides, but the upside is that in this small subset of patients that have disordered eating, food cravings, and that, and, and that sort of obsession about, about food or not eating the food, not being able to eat, that’s really affecting their life on a daily basis and probably affecting their mast cells on a daily basis. We, by using

[00:23:00] low dosages of these drugs, we’re able to basically reverse that, that, feeling and that condition. So their eating disorders go away. Their, their cravings, their obsessions, their, go away. Jill Brook: Wow! This is using the weight loss drug? Dr. Tania Dempsey: Yeah. Yes. Yeah, Mounjaro. And in some patients, I’m using dosages where they’re not really losing a lot of weight. Some of these patients, I want to be very clear, like, I have one patient in particular who maybe she’s lost 5 or 10 pounds, and she probably has 50 or 60 pounds to lose, let’s say, okay? So, and she doesn’t even care that she hasn’t lost that much weight, but what it has done for her brain, and in this case, actually, it wasn’t even a disordered eating situation, this was more brain fog and cognitive dysfunction. The drug

[00:24:00] literally lights up her brain so that it works differently. And and she basically says she’s got her brain back. Okay, so I have cases like that. I have cases of patients who don’t have a lot of weight to lose at all but the obsessions over the food and the constant, the constant cravings really is impacting their, impacting their life. Tiny dosages off label, right, tiny dosages really can sort of stabilize them. And they, they are now, they, they’re totally different. The inflammation in the brain, this is how I look at it, I’m using it for inflammation in the brain. The inflammation in the brain comes down, they don’t think about food the same way, their eating disorder, their disordered eating, however you want to look at it, gets better. I’m not saying that this should be a treatment necessarily for that and I’m not saying that people should do it, but the point I want to make is that there is this connection with this, the brain inflammation and the, the cravings. And some of these other symptoms that people

[00:25:00] are dealing with, so. Jill Brook: Wow, that is such great information, and I thank you for talking about it, because it probably takes a few years for that to come out in the peer reviewed literature. Dr. Tania Dempsey: Yeah, well it’s, you know, they’re starting to come out, they’re starting to show, the, the effects on the, on the neuroinflammation. There’s a study looking at Parkinson’s disease and GLP 1 agonists. There’s, they’re looking at Alzheimer’s. So, so we already know that there’s, there’s going to be a place for these drugs potentially but I’m saying that these, in my, you know, practice, in a small number of patients who don’t have those conditions but have MCAS and they have some of these brain, you know, sort of neuroinflammatory symptoms, right, that’s been a tool. You’re sure I’m treating these patients with MCAS targeted therapy and, and the like, but sometimes those things don’t

[00:26:00] work. And so now I have another tool. Jill Brook: The next question is, can you talk about the physical MCAS triggers like cold or pressure or vibration? Like what others are there and how the heck do those set off mast cells? Dr. Tania Dempsey: It’s really interesting. So, again, your mast cells are really in the interfaces in your body, you know, to the environment. You have lots of mast cells in the vasculature, so they’re in the lining the arteries and the veins. Again, they’re, they’re everywhere and so they’re, again, perceiving changes, different, different sort of changes. So they will register changes in temperature, they will register changes, especially if, even if you have mast cells in the skin yeah, they can detect, again, the vibration the barometric pressure they can, they can detect, you know, I have patients who have flares after blood draws.

[00:27:00] And the question is like, what, you know, why are they having a blood draw, and what does that have to do with mast cells? Well, you know, you’re pulling blood against the mast cells in the vein, and that’s probably causing them to degranulate and, and and causing, causing reaction. So a lot of these physical things that the body is dealing with, if the mast cells are already dysfunctional, they’re, they are more likely to, to react. But but you know, the question is why it’s a little bit more complicated. You know, how and the how, right? How does barometric pressure like, how does the mast cell really register barometric pressure? And I, I don’t know if I can answer that. You know, I think that’s a really interesting research question. But it does, they do, which is, you know, really interesting. Now, not everybody, but I definitely have patients who can, they can, they can be, you know, weather people, right? They can, they can they can, they can predict the weather before, you know, the person, the meteorologist on the on the TV can, can tell them,

[00:28:00] you know, what’s going on. So, because they can detect the pressure going down or the pressure going up. And again, temperature changes. Some patients can even almost predict the change in the temperature outside. You know, they, they, they could almost feel like, oh, here’s going to be a cold front coming on. We, we know that one symptom that, that can be quite common is, is temperature regulation just in general. So it’s not just the sensitivity. I think, I think sensitivity to heat. Seems to be a little bit more than sensitivity to cold, but, but patients in general can, you know, mast cell patients can definitely have either. But the heat intolerance is one that comes up the most. But in addition to that, there, the feeling of heat being hot, even when it’s not hot, sweating, flushing, is, is definitely also a not uncommon symptom. Symptom that’s probably driven by

[00:29:00] the various mediators that the mast cells make. So it’s kind of a complicated situation, but I don’t know if that answered the question, but I.. Jill Brook: Yeah, so I’m remembering a study that I saw, it was looking at, it was either rat or mouse brains and it was looking at EMF triggering mast cells and it said that indeed it did. Is that another example of a physical trigger? Dr. Tania Dempsey: Think that in general our body, I mean, we’re all being exposed to things that 10, 000 years ago, 100, 000 years ago, I mean, we just didn’t have to deal with. And so, but now we have so much that we have to deal with that is added on a daily basis. So, I think our, our mast cells are more heightened and they’re more heightened to these various things. Think about it again, EMFs. That’s a, that’s a sort of a new kind of technology, right? That’s not something that we would have been exposed to 10, 000

[00:30:00] years ago. So I, I kind of think about it that way. Why are, why are people reacting to that? Well, I think part of it is that we’re probably not supposed to be be exposed to that. Some people, you know, don’t have a problem. Their mast cells are not dysfunctional. Their, their mast cells are more likely to react to something bigger, like a viral infection a major event, and those that have already dysfunctional mast cells at baseline are a little bit more susceptible then to start reacting to these other things that theoretically are not necessarily dangerous but our mast cells are reading it as dangerous. Jill Brook: Yeah, it is, it is it is a little difficult to think about all the things in our environment now that we don’t have choices about. Dr. Tania Dempsey: Yeah, I was just listening to this this allergist talking about particulate matter in the environment, like from wildfires or from various chemical processes that, sort

[00:31:00] of, releasing these, these particulates into the environment that are not detectable, like you really can’t, you can’t really see them necessarily sometimes, and they’re just basically floating throughout our, our atmosphere all over the planet at this point. And and that the, the research actually shows that it’s linked to heart disease and cancer and all these different things. And I, and, you know, it, the one thing about this speaker was that she, I don’t know if she understood MCAS at all, although as an allergist, she’s treating mast cell diseases all the time. But I really loved how she sort of was thinking about the environmental effects on our, on our bodies and and it made me think about these exposures that, you know, when I talked earlier about figuring out your triggers, there are some triggers in our environment that there’s no way you would think about it on a daily basis and apparently there are

[00:32:00] apps now and different ways of sort of tracking your environment and so, you know, you don’t go outside if the particulate matter is a little bit higher than you know in other days and stuff like that, but it’s like it’s just unfortunate we have to worry about all these things. Jill Brook: But I guess it’s good to know because I know that in the past I’ve made the mistake of thinking like, oh, what am I doing wrong? What do I, like, it’s easy to start to blame whatever you ate last. And I think it’s good to sometimes keep in mind that it could be microplastics in the air, or it could be goodness knows what, and it’s not always necessarily the thing that’s right in front of you. Dr. Tania Dempsey: Exactly yeah, very good point. Jill Brook: Okay, next question. We had a woman write in, and she is struggling with something called, I don’t know if I’m going to pronounce this correctly, Kounis Syndrome, K O U N I S. Dr. Tania Dempsey: Kounis, I think it’s pronounced. Yeah. Jill Brook: Okay, and she is wondering if you might

[00:33:00] say something about that, and if you know of anything that can help with that. Dr. Tania Dempsey: So, the Kounis Syndrome is basically a heart condition that is thought to occur, it’s an acute, actually, coronary syndrome that is basically what we now understand as a result of a reaction either allergic or some mast cell sensitivity to some trigger. A spasm of an artery, coronary artery, that can feel like a heart attack, can act like a heart attack, but is essentially caused by a trigger. We’ve seen patients with Kounis Syndrome who ate something that, you know, let’s say, let’s give an example, you know, they ate shellfish and, you know, maybe they thought they knew they were sensitive to it, but they didn’t realize how badly and they have a reaction and they,

[00:34:00] they go into this, they basically have chest pain. And they wind up in the ER with with this Kounis Syndrome. So it’s a so it’s a basically allergic or mast cell reaction to something in the, in the coronary arteries. Okay. So, so what I would say is that it is typically treated, well, well, there are a couple of things. One is once it’s dealt with then you’re, you’re doing the same thing you’re doing with MCAS theoretically, right? You’re using mast cell targeted therapy you’re using, you know, antihistamines, you’re using various things to sort of, control the mast cells and try to prevent this from happening again. Some patients with this are going to need we’ll say treatment that’s more targeting their their heart and their coronary arteries. So some patients will need blood thinners, some patients may need cardiac meds. So it really, it really depends. It’s actually a very

[00:35:00] complex condition and it’s certainly not something that I, I treat, right, on a regular basis, but I certainly have patients who have had it. And and it, it is. It can be very, very scary. But it does need to be addressed in a comprehensive manner, right, from a cardiac perspective and also from a, a mast cell perspective. Jill Brook: So, meaning get a cardiologist and a mast cell person involved? Dr. Tania Dempsey: Correct. Jill Brook: Okay. Is it something where the spasm is temporary, or does it stay… Dr. Tania Dempsey: Well, it can last a long time. There are cases where, you know, you can theoretically die from Kounis Syndrome because if the spasm just continues and you can’t get blood flow to the to the heart. So think about it this way, you know, heart attack is usually a blockage in a, in a coronary artery, and that blockage prevents blood flow to the heart, and then the heart doesn’t get oxygen and then, and then it can die. So this is a, this is a spasm. There are, there are

[00:36:00] different things, apparently there are different types of spasms that you can have that are caused by different things, but, but this is, in this case, again, it’s the spasm of, it’s the mast cells in the arteries reacting to a trigger that then is contracting that, that artery down. Now there’s not enough blood flow. If you can intervene quickly and you can relieve that reaction, right, then, then it can, you know, go away and, and hopefully have no impact on the heart. In other cases, it might potentially impact the heart. Even though there’s no clot there, it’s really that the, that the the artery is closing. Sometimes cardiac meds are, are indicated, right? So it’s not a, it’s sort of complicated because it’s not directly a heart condition. It’s not like you have a, you know, a, you have atherosclerosis and you, you know, you have, you might need, you know, stenting in that case or you might need different drugs. However, it’s still a heart condition because it’s still the

[00:37:00] arteries in the heart that are affected. My understanding is that there’s a, there are a subset of patients that are sometimes stented for this. So if they, if they feel like they can’t keep that artery open and it keeps reacting, sometimes they have to do something to physically keep it open. I don’t know how often that happens, again, not my area of specialty, but but it is a, yeah, it’s a very, very tough condition. Jill Brook: Okay, wow, and that’s just such a good reminder of all the different amazing things that a mast cell can do to different kinds of tissues. Dr. Tania Dempsey: Incredible. Yeah. Jill Brook: If we have time for another question or two you had mentioned stenting and you had mentioned the effect of mast cells on blood vessels, and one thing that patients are really talking about lately is May-Thurner Syndrome and some of these venous outflow obstructions. Partly on the POTScast, we had Dr. Stephen Smith on to speak about that and his data. So that had a lot of interest. And so

[00:38:00] now I think that patients are very smart, right? So patients heard that episode and they heard Dr. Smith talk about his findings that when he treated venous outflow obstruction, maybe by putting in a stent or doing other things to help circulation. That he found a lot of unexpected benefits to that, like POTS getting better, migraines getting better. And so now, there’s a lot of POTS patients and pelvic congestion syndrome patients who are thinking, oh, do I have this? Should I be considering this? But then the next thing that comes to mind is, but I also have MCAS. And so the idea of implanting a stent is scary. And the idea of even just going and getting some of this imaging done is scary because they use contrast dye or gadolinium and some of them say, I can’t even wear nickel earrings, so I seriously doubt

[00:39:00] my body is going to allow me to have a nickel stent put in. And so, I know that there’s probably no data whatsoever, but would you feel comfortable just free associating your thoughts about this kind of thing? Dr. Tania Dempsey: Yeah, no, it’s a great, great question because this is coming up a lot. A lot more, I think, partially because Dr. Smith is sort of spreading the word a lot in on podcasts, in our, we have a mast cell group, and he, you know, talks a lot about this. So it’s definitely on our mind, and the patients, obviously, especially patients where let’s say you’re treating POTS and they’re not getting better and you, you know, or maybe they have other symptoms that are suggestive, and pelvic pain is a, is is a, you know, sort of a huge topic, you know, and maybe, maybe blood flow is, is a cause or you know, or blockage of blood flow as a cause of pelvic pain and pelvic disorders and other things. And then you can think of constipation and all that. So I can start thinking about all these symptoms. So these, this is starting to come up a

[00:40:00] lot. It’s on my mind. So, yeah, I think we need to be talking about it. So I do have this one concern about stenting and putting foreign bodies into people, right? And I think it’s really about, you know, you have to do a risk benefit analysis and you know, if the, if there’s a blockage, if there’s, if there is a there’s some kind of venous compression that’s not allowing blood flow through the body in the, in the, in the places that need to have blood flow, it is going to have downstream effects. Those downstream effects could be that it’s making your mast cell worse. It could be that it’s making your POTS worse. It could be that it’s making your gastroparesis worse. It could be that it’s making all these other things worse. And so yes, so maybe there’s a risk of putting a stent in and having a reaction to the stent, but then what is the risk of not putting really perfusion, perfusing your organs and not getting blood flow where you need it to go. What’s that risk? And, and what if this continues and your mast

[00:41:00] cell disease gets worse and worse and your POTS gets worse and worse and then you’re disabled and then you’re, you know, not functioning at all and and if the solution could be something this simple, I hate to say it’s simple, it’s not simple, but it kind of is, right, because it’s an intervention that you know, sort of like a one and done thing, and I think about it that way, like again, you know, you have to weigh risk and benefits, if, if it’s possible that’s, that this is a major trigger for you, then that might outweigh the stent, right. But in other patients, you know, maybe the condition is not as clear, right? Maybe they’re being worked up for this. Maybe there’s some suggestion there could be this problem, but, you know, maybe it’s still unclear, and there is maybe a severe allergy to nickel, and maybe there’s severe symptoms that could arise from a stent, right? Then you sort of balance that and you think about are there other ways to deal with this problem outside of stenting. And I think

[00:42:00] that’s an area that, that I’m, I’m really interested in is what else can be done non surgically or without a procedure, right? Is there, is there a solution? I don’t know the answer to that but I think we’re going to have to figure it out because I think there’s going to be a subset of people that are not going to be able to get stented. Having said that in speaking to colleagues who have more patients, interestingly, these patients have been doing very well with the stents. I’m not, you know, I’m not hearing what I expected that I would be hearing about it. Now, that doesn’t mean that it’s perfect, right? But I think it’s interesting. That it doesn’t appear to cause as much of an issue as I think it could. Jill Brook: Okay, no, I really appreciate that answer and that makes a lot of sense to look at the cost benefit and to maybe consider other things first, make that maybe, you

[00:43:00] know, go in order of how invasive something is or how reversible it is. Dr. Tania Dempsey: One question I have is really, you know, we all have our, our lens that we look at things through, and Dr. Smith is a interventional radiologist, and, and so, and this, and he’s made this his life’s work, and so he is going to have a little bit of a bias about, about this condition, I think, as, as I may have a bias for vector borne infections, let’s say, okay? So, I guess my question is, why is this happening? Like, why are we seeing so many patients with these compression syndromes? And not just, and I’ll take this one step further, not just related to pelvic congestion, venous, you know, venous congestion, but, but also things like, like, MALS Median Arcuate Ligament Syndrome, SMA Syndrome, Superior Mesenteric Artery

[00:44:00] Syndrome. These are all, those are arterial compressions we have the venous compressions. I know that Hypermobility Syndrome, EDS may be a risk factor in all these cases but I still question why, you know, are we seeing more of that? And and I think, you know, it’s that there’s more MCAS we’re going to see. I really do, unfortunately, think that the incidence of MCAS is going to go up. You know, right now we’re estimating about 17 percent of the population, and I think it’s maybe closer to 20%. That’s one in five people. That’s a lot of people. I think it’s maybe a little even higher than that, and I think with all these environmental triggers, it’s going to get worse. We know that the mast cells are in the arteries and in their veins, and we know that if you have hypermobility, that there is a risk for for, for not having the, the integrity of the vasculature may be impaired, and they have the mast cells in there,

[00:45:00] too, affecting that. Maybe that’s why we’re going to start seeing more and more of this. But but it’s a, you know, it’s, it’s a concern I have. But I don’t doubt that it’s happening. This was my point. I know it’s happening. I just I also just think we have to be careful with, with, you know, considering all this. Jill Brook: So I’m just going to look for one maybe light, easy question to end on. Do you have a favorite antihistamine and how long do you like people to try it to see if it’s working for them? Dr. Tania Dempsey: You know, unfortunately, I don’t have a favorite because I can give you, you know, these miracle stories with every single antihistamine on the market. You know, I have Xyzal story, you know, where like, that was the drug for the patient. I have an Allegra story. I have a Claritin story. I have a Benadryl story. So patients will often say, so what’s your favorite one? So let’s just start with that one. And I’m like, I don’t, I don’t know what my favorite one because everyone’s mast cells are different. And,

[00:46:00] you know, I, I, we could, we could pick the first one and that could be the best one and, or it could be the worst one and so you do have to just, you do almost like flip a coin, pick one, and then work your way through them, usually within a couple of weeks, you’re going to know if it’s working, I would argue, that’s what Dr. Afrin says, that you give two to four weeks for, for trial I find that most patients know a little bit faster than that, especially if they’re reacting, they know pretty quickly, so you have to move on, but usually the effects are evident, you know, in a, in a short period of time. So, yeah, so I think you just have to, we just, you just have to pick, I wish I could have a favorite. That would be, make it so much easier, you know? Jill Brook: Okay, well I like that because it lets all of us feel optimistic that our best one is yet to be discovered. Dr. Tania Dempsey: Yeah, and that, you know, and I’ll say that one of the things that sometimes

[00:47:00] happens is patients will find, will try, I’ll give you an example, they tried Loratadine, and you know, they don’t have any side effects, and they think maybe it’s helping, and then they just stay on the Loratadine. And I have some patients that, you know, like, let’s say a year later they’re in a flare and we go back and we say, well, maybe actually the Loratadine wasn’t even the right one. You know, maybe that’s why you’re in a flare. You know, we haven’t controlled it completely. So have you tried the other ones? And you know, they’ll be like, no, I actually never even got to the other ones. Okay. Well, you know what? Sometimes it pays to, to actually trial each one and then, then pick the one that you think is best for you. So, you know, you might try Allegra, and you might say well, you know, that’s not bad too, but I’m not sure. Okay, well then try the next one, you know, and then, and then it’s usually a little clearer. There are, there, there’s going to be a subset of patients where the antihistamines, they’re never, they’re not going to find an

[00:48:00] antihistamine. I don’t, you know, I don’t know why that is other than histamine is not their issue. Or these particular antihistamines are just binding in their body in a way that’s just not helpful for them, maybe it’s an excipient issue there are lots of reasons why, but I have patients who either just do really poorly on every antihistamine or they just can’t find any that are, they don’t react, but it’s just not helpful. So, but it’s still worth trying and going through it. Jill Brook: Excellent, oh, that’s so good to know. So, I know you need to get back to your clinic, but we are so grateful for your time and how you have just given us just so much incredible information so fast and furiously. You are the best. Thank you for your generosity and your knowledge and your time and we’re excited to talk to you again soon. Dr. Tania Dempsey: Thank you. Yeah, I can’t wait to do this again. So keep sending questions. Jill Brook: Awesome! Okay, listeners, you heard it from Dr. Dempsey herself. You can send your questions to

[00:49:00] research at standinguptopots. org. And this is a gold. This is amazing. I’m so excited for this opportunity. Dr. Dempsey, you’re the best! Thank you! Hey listeners, that’s all for now, but we’ll be back again next week with a normal episode of the POTScast, and we’ll be back soon for more of Mast Cell Matters with Dr. Tania Dempsey. So thank you for listening, may your mast cells be good to you, and please join us again soon.