Dr. Eric Storch - Exploring Misophonia Treatments and Research

S2 E7 - 6/10/2020
In Episode 7, Season 2, Adeel interviewed Dr. Eric Storch, a clinical psychologist from Baylor College of Medicine. Dr. Storch shared insights into his misophonia research initiatives, drawing parallels between misophonia and other conditions such as anxiety, OCD, and Tourette syndrome. He elaborated on work to identify effective treatments, the challenge of differentiating misophonia from other disorders in clinical settings, and the potential genetic and neural underpinnings of misophonia. Dr. Storch highlighted an ongoing study at Baylor College aimed at a deeper understanding of misophonia through various tests and exploring interventions tailored to individual needs. He also discussed the role of the Misophonia Research Fund in advancing research and potential collaborations. Dr. Storch emphasized the need for public education on misophonia to reduce stigma and encouraged ongoing dialogue and research to find effective therapies. The podcast ended with a discussion on coping mechanisms, communication strategies for those with misophonia, and Dr. Storch's vision for future research directions, including understanding misophonia subgroups and creating widespread awareness in educational and professional settings.


Adeel [0:01]: Welcome to the Misophonia Podcast. This is Episode 7 of Season 2. My name's Adeel Ahmad, and I have misophonia. This is a really special episode because I had the pleasure of talking to Dr. Eric Storch, a clinical psychologist and vice chair of psychology at the Baylor College of Medicine in Houston. If Baylor College sounds familiar, we've mentioned it before. They're doing a study right now on misophonia in adolescents. This was a great chat with someone actively doing research on this disorder. As you know, on this podcast, I focus on real conversations with regular misophonia sufferers. But once in a while, I like to bring in experts who are leading the charge toward what we all seek, better treatments and ultimately a cure. Dr. Storch actually reached out himself and scheduled this interview, just like everybody else, and I'm grateful he did so. So if you're a professional in the field or you know someone who is, please point them to the website, misophoniapodcast.com, or you can have them email me, hello at misophoniapodcast.com. In the show notes, you'll find contact information for Dr. Storch and his group at Baylor. This conversation covers his research, the Misophonia Research Fund that is funding it. His observations on Misophonia, especially in relation to other conditions like anxiety, OCD, even autism and Tourette's. He's got a vision for educating other professionals and social workers in Misophonia. And I bring up some observations and coping mechanisms that have come up on this show for his thoughts. The info on how to get funding in particular would be interesting to other researchers looking at Misophonia, so please share this episode far and wide on social media, Facebook and Instagram at Misophonia Podcast, or we're on Twitter at Misophonia Show. Now, without further ado, here's my conversation with Dr. Eric Storch. I guess, let me give you a welcome, Dr. Storch. Welcome to the podcast. It's great to have you here. It's great to be here. Thanks so much for making the time. Yeah, so obviously I usually talk to misophonia sufferers. Maybe I should ask you first, I'm sure we'll get into the research you're doing, but do you have misophonia or are you basically a researcher?

Eric [2:28]: So I don't have misophonia and kind of came across misophonia probably about 10 or so, 12 years ago. in my clinical practice with people who struggle with anxiety or obsessive compulsive disorder. And so that was kind of the initial introduction.

Adeel [2:47]: So you were seeing a lot of sufferers and you decided there's something going on here.

Eric [2:50]: And yeah, that was it. We first started seeing a few kids. And and so it it was within this broad clinic that really focused on on individuals who had OCD or had anxiety. And some people were coming in and they would have, you know, anxiety and misophonia, but we saw a couple who really had misophonia as kind of their singular primary problem. And at the time, there really was very little information out about what this was or what to do with it. So we were really trying to put together, you know, whether it be different ways of measuring it or different therapeutic approaches to trying to help alleviate some of the distress. But that was our initial worry. Around when was that? Just out of curiosity.

Adeel [3:41]: Yeah, about 2010. Okay, yeah, that's around the time, I mean, a lot of people, it seemed like, started to reach the public awareness. It was starting to hit the press a little bit.

Eric [3:54]: Yes.

Adeel [3:54]: Not enough, but interesting. Okay. And, yeah, I guess, let's talk about the center that you work at. There's been a lot of interest in, you know, the Baylor study. And we'll talk about that, I'm sure eventually, but maybe you can talk a little bit about the research center that you're at right now. Absolutely.

Eric [4:17]: So I'm really fortunate to be at an institution that I am very, very proud of, Baylor College of Medicine. located down in warm, humid Houston. So I came here about two and a half years ago after spending about 10 years at University of South Florida in Tampa, where a lot of our work in Mississippi had originated. Now, while we were down in Houston, we started a center really focused on the clinical care and research of individuals who have obsessive-compulsive and related disorders. Now, concurrent to that, although misophonia in no way is OCD, we were seeing a number of folks who had primary conditions of misophonia, and a lot of that was based on our work and people coming in through our clinic. Now, one of the other kind of primary focal points of the work we do is on education. And so we're really thinking of how do we make sure that the next generation of psychologists or psychiatrists or social workers, that they're able to recognize these symptoms for what they are, and then start to intervene in ways that are consistent with what the problem is. I think back in the day when we were really trying to figure out how do we approach misophonia, it was a little bit of a trial and error type of approach where we didn't have really any kind of backdrop to go to reference. Now we're past that. And while we're still establishing what interventions are the most effective and what factors may make an intervention more helpful for one person relative to another, we're now really thinking a lot about how we make sure that we're able to kind of convey that information to our future clinicians so that they can most effectively support the community.

Adeel [6:21]: Yeah, that's interesting. I mean, just yesterday I was talking to somebody in high school who also has GAD, generalized anxiety disorder. So that's interesting because I was curious, like how would, like how did you, what made you realize that this misophonia was a totally separate thing? You know, you said confidently it's definitely not OCD. And obviously we all, misophonia sufferers all realize that. But, you know, I'm sure as kids are, you know, growing up and they're their parents are wondering what's going on, maybe taking them to see a professional. I'm sure this gets looped in with a lot of other more common disorders. So I'm curious how you realize that's separate and what you tell professionals to look for. Yeah. Because this could apply for school counselors as well and, you know, education.

Eric [7:10]: Absolutely. Absolutely. A lot of incredible questions within that comment. And I'll try to go through each. If I miss one, just bring me right back. I think on the final point, there's so much education that needs to take place. Concurrent with that, there's still a lot of research that needs to take place in terms of understanding that the symptom expression can reflect many different underlying causes. I'll talk a little bit more about the study we're doing at Baylor as pertaining to how we try to get to that. But I think there are many, many folks with whom we need to kind of intersect to help them understand what misophonia is and what are acceptable and effective ways of approaching it. Back to the first part of that, I think that how we really started realizing this was different was initially through gaining some experience. And I think anyone that would say that they got something right the first time A, I'd be pretty envious of them, but I'd also be a little bit dubious. And I think that it characterizes our group. And we saw this. The problem with seeing initial cases one at a time is that your experience kind of adds up in the course of those cases. And so it took us a little time to realize that some of the tried and true methods that you might use for people who are experiencing distress either don't work the same or have to be applied differently. Now, on the other hand, we did benefit from having some experience with other types of problems. So, for example, one of our conditions that we've done a lot of work in is Tourette syndrome. And while misophonia and Tourette are completely different, and I'm not drawing a similarity to them, Our approach to Tourette was, it gave us some information or some ideas about how we would approach working with someone who has misophonia. So in Tourette, what you see are, of course, the tics that are coming into play. But you also see these other components. And so one of them is the way that people kind of shift their life as a function of the tics. So they might stop doing things, going out, being with friends. They might internalize what it means to have tics. So there's something that's kind of inherently wrong with them, even though we know that's obviously not the case. And then the family may kind of intervene in ways that actually become more kind of distressing or upsetting for the family. Like in the case of Tourette, letting people get out of things that really they need to be doing as part of that stage of their life. And so our approach to Tourette was, okay, we try to treat the symptoms, but the symptoms with behavioral therapy or with medication don't, alleviate. They may never go from here to zero. So you're still kind of left with these pretty significant residual symptoms, even in the best case scenario. And so our focus became on how do you address any of the psych problems that kind of surround it, or the tendency or potential tendency for individuals to kind of internalize what it meant to have Tourette. And so we've thought a lot about that in working with individuals with misophonia. So partially, it's to kind of surround or to target the misophonia symptoms by thinking of the way that people interpret them, the meaning behind them, by providing folks with ways of kind of attenuating distress that's experienced, especially in the face of triggers. And by trying to reduce any sort of kind of accommodations that are unhealthy and end up perpetuating this kind of pathway that just isn't going to help that person live the life they want to live.

Adeel [11:24]: Great. Are you referring to like potential coping mechanisms that could basically have a reverse effect or basically have unintended consequences down the line?

Eric [11:36]: That's exactly it. That's exactly it. And And let's take two just examples of that. One of them could be where a person is only able to eat by themselves. So it does reduce distress, which has some benefit. But on the other hand, the challenge to this is that that's not... really going to be a healthy way for building relationships or maintaining existing ones. And so we need to think of ways that one's able to engage appropriately within all the things that make life meaningful while we're being thoughtful about the miscellaneous. Right.

Adeel [12:13]: And that's, that's a great example of one that, uh, I can't remember an interview where that does not come up where, uh, you know, the, um, talking about how at some point, uh, somebody, you know, needed to go to their room or, or just avoid, avoid eating. Um, another thing I think about is, you know, um, earphones and headphones all the time. Uh, I mean, I'm kind of a, you know, armature audio file, but even I don't want to have, uh, headphones on me all the time. Cause I feel like, you know, that, I don't know, down the line side there, bad for my ears or just kind of like, you know, don't want to, it'll just, yeah, I'll have unintended, I think, social and audio consequences. So what do you, yeah, I guess, how do you, what do you, how do you help people kind of like get over some of these issues? Some of these kind of like classic coping mechanisms that are kind of ingrained.

Eric [13:02]: Yeah, and look, it is hard. In no way would one ever imply that it's not. And the whole kind of purpose of a coping strategy, even ones that aren't optimal, is to cope. So, you know, there can't be judgment of these things because it's all geared to trying to make it to that next day. I think there are a few ways that we try to deal with this. One is that we'll use kind of these behavioral, physiological ways of reducing the stress. So things like teaching relaxation or deep breathing or guided imagery. When you're in a situation that you really can't get out of, in terms of being confronted by the trigger, Or alternatively, being in a situation where you're kind of using this to kind of get your mindset in a proper place or an ideal place. Another way that we try to do this is really a focus on kind of teaching people to put their interpretations of the trigger in context. So the trigger is difficult, and we can't really change that. But I think there's this pattern that involves a person being exposed to the trigger, that distress ensuing, and then a behavioral response, often which is to avoid them or try to get something that cancels it out. Sometimes that's great. Having earphones in is terrific, and that works. But other times it isn't going to be ideal. And so we need to be thoughtful about what to do in those circumstances. And so what we'll focus on is really trying to kind of reinforce that person's perception of their ability to cope with duress. That despite how difficult this is, they're able to come into contact with the trigger without really running away or leaving, but instead able to deal with it. Sometimes we have to do that or we want to do that with those prior coping skills to try to reduce, again, that physiological reactivity to the trigger. But again, reinforcing the idea of, okay, we don't want to give in in situations where it's really not going to meet our best interest to do so.

Adeel [15:31]: Right, yeah. So, yeah, breathing has come up as... anyway a potential technique can you elaborate a little bit more about guided imagery that sounded kind of interesting because i know uh people talk about um just when they're triggered just thinking about you know well you know this this time is going to end and there will be a time right after this when there won't be any triggers so you know at least i try to focus on focus on that in the moment um but is there what kind of imagery are you thinking about for for guided imagery yeah yeah

Eric [16:03]: And first, I want to compliment you. That whole mentality of kind of putting yourself forward in time, as I make it through this, there'll be a time where I don't have to be dealing with this. That's brilliant. And that's one of the kind of core techniques that we really try to illustrate and have people adopt. Instead of differently, it's this way of reframing the thought from I'm not going to be able to deal with this and I'm going to kind of lose control to, okay, I can make it through this. I've done it before. There'll be a time where I'm not dealing with this. So I just want to applaud that piece first.

Adeel [16:40]: Yeah, another one, and not to make this about my techniques, but another thing I've mentioned is not just in the moment, but kind of sometimes before I enter a room, I try to tell myself in my head that, tell my brain that nothing here is going to hurt you. And then somehow that kind of like takes away that immediate shock if I get a trigger. And I want to explore that more personally, but I'm curious if that resonates with anything you've seen.

Eric [17:08]: Absolutely. I think we have to figure out how to get you down to Houston. Because I think those are exactly the tools. And I suspect through the podcast, I mean, this is some of the information that you're disseminating that's sharing the things that work and maybe work less well. But those are exactly some of the things that we want people to internalize, to deal with this, you know, with this phenomenon, this syndrome that just doesn't go away on its own.

Adeel [17:36]: And so, yeah, and I want to get back to your actual study. Let's get that kind of... on the record because there's been a lot of interest in that as I shared the links. Yeah, you want to talk about the study? I know it's primarily geared towards adolescents, but maybe you want to describe that and maybe folks who will want to join. Absolutely.

Eric [18:00]: So we were very, very fortunate to be recipients of a grant from the Reem Foundation in the Missophonia Research Fund to have a study that's entitled Deep Phenotypic Characterization of Missophonia. Now, what that means is that if you've seeing a person with misophonia, you've seen a person with misophonia. While there's some commonalities, you know, as we've talked about with certain symptoms, for example, everyone's different. And what we want to think about is how do we start kind of understanding what those individual differences are more carefully. Now, over the years in the psychiatric and psychological literature, what's happened is that we've characterize or classified conditions as a function of symptoms being present or absent. The challenge with that is that a lot of those symptoms cross cut many different things. So for example, restlessness is a symptom of both depression and anxiety. So in essence, you start seeing this kind of broad Venn diagram that has all these things with some level of overlap. And some things are further apart than others but but again there's some kind of closeness with a lot of these things now in working with individuals with misophonia what what we've learned is that while the symptoms may express very similarly there there are some differences that are more underlying and that's what we're trying to understand here is what are really the differences that may characterize different subgroups of individuals with misophonia. For example, there are some folks where the misophonia really is the one thing, and there's not much else going on. And then there are others who may have some anxiety and depression, and the misophonia is also a big part of that, maybe driving it, maybe exacerbated by it. But what we want to be able to understand is, are the symptoms of misophonia kind of really one kind of construct one cluster or do people break out into different subgroups and that's what we're trying to achieve now the study involves going down to children ages eight all the way up to 17 in this case and we're comparing kids to kids with anxiety Now, we chose anxiety for a couple reasons. One is that we would expect that if you just compared people with misophonia versus kids who have nothing going on, then of course there's going to be a lot of differences. So we wanted to have a little bit more of a stringent comparison where there's some sort of anxiety condition that also is kind of behaviorally It resembles misophonia. And what I mean by that is when someone's anxious, like about social situations, they're triggered by that situation. They get upset and then they try to leave the situation.

Adeel [21:21]: So, of course, yeah, fight or flight kind of similar.

Eric [21:24]: Yeah, you got it. You got it. But what happens in our study is that we have a single time point where we have to do it in Houston. So folks will come on in, and then we'll conduct a variety of tests for about half a day. The tests involve things like we're going to look at how kind of brain reacts in terms of exposure to various stimuli. We're going to look at a whole bunch of different kind of clinical constructs as well that relate to things like negative emotions or positive emotions, how people kind of connect socially with others. And then one of the other things we're going to do is start with this kind of sophisticated, which means I don't really understand it well, way of understanding more subtle nuances in affect by looking at how facial features move. So when you think about, you know, when you have kind of facial recognition on your iPhone, we're using that technology to look at very subtle variations in characterizing the effective response to various mystophonic triggers and trying to understand how that could be a factor in how people present.

Adeel [22:43]: I think you'll see a lot of glares probably, as we colloquially describe it, the misophonia glare. Yeah, that's really interesting. How long is the study going on for, by the way? Are we in the middle of it right now?

Eric [22:55]: We are just starting. We were opening up literally the week that everything hit the fan with COVID. And so we probably had to shut down. And then we've been given permission from our university to start reopening throughout this month in early July.

Adeel [23:15]: What's kind of one of the outcomes of the study? Is it going to be a potential therapeutics or is it more just general understanding to take it to the next level? I'm just curious what outcomes you have as goals.

Eric [23:26]: Yeah, I think the way you described it, you're trying to have a much more comprehensive understanding of misophonian kids, which we hope will translate to adults, that will in turn inform treatment. So the idea is that as we're applying treatments, what we're doing is we have a general conceptualization that the interventions that we're providing should work across the board for all people with misophonia, of course, with a significant element of personalization. But the question should be addressed potentially a little bit differently, which is, do you need to have certain treatments for certain individuals? And that's what we're trying to get at. What we saw experientially is that there are some folks who do really, really well. If you provide some skills and they're able to kind of go and confront situations, there are other people where the distress that's elicited through exposure to various triggers, it's just not possible. It's so difficult. And so the question becomes, what are the tools in our toolbox in order to effectively address this? And does that differ as a function of adults versus kids, or more importantly, the different kind of features that come into play?

Adeel [24:54]: Have you looked at similarities or differences between misophonia and autism? That comes up as a question a lot. Is misophonia somehow related to autism or kids on the spectrum? I'm curious what your thoughts are on that.

Eric [25:12]: Yeah. Absolutely, we've thought quite a bit about that. It's a great example of how certain constructs can cross-cut different conditions. And so it doesn't mean in any way that misophonia is autism, but it starts giving us kind of a connection to look at things if we're seeing high rates of this kind of syndromic presentation in individuals on the spectrum. The challenge with autism is that it's so remarkably heterogeneous that if you had to pick a starting point to kind of get there, that probably wouldn't be the one because I think we can account genetically, for example, a tiny fraction of the cases that come in. So it helps us understand, but it still falls in that kind of Zen diagram with some element of overlap at play.

Adeel [26:09]: Yeah, another thing, and you mentioned genetics, and another question that comes up, especially since the whole 23andMe report, and I've had somebody from 23andMe on the podcast some time ago. Basically, what are your thoughts on the nature versus nurture? Well, maybe nurture is not... Are we born with it, basically? Or is this something that develops in that early childhood period?

Eric [26:34]: Yeah, I think there's... So I will preface this by saying we don't know. We don't have the science that would stand up in a court of law, if we had to be. The... My sense is, I mean, this is a biologically driven condition. And so this is actually where there's that parallel with Tourette in a sense. There's no debate that Tourette syndrome is really a neurological condition that has no psychological basis for its development. I think, though, like Tourette, there can be behavioral responses that kind of impact the trajectory of the symptomology. And so that's where we have one target. Now, also like Tourette, whereas, you know, if we're treating someone with OCD, my goal is to really eliminate any significant obsessive compulsive symptoms. If I'm treating someone with Tourette, That'd be nice, but that's not really a realistic goal. The goal is that we provide the person with an arsenal of tools on their belt to deal with this, and hopefully that we're able to take the intensity of the symptoms and reduce them, but not to zero. And I think with misophonia, that's really a relevant piece here. We know that this is a biologically determined condition. We have to understand how genetics factor into that. But we know that this is, again, organically derived. And the behavioral response can kind of shift the trajectory. I think what also happens is that, and this goes back to that deep kind of phenotypic characterization, is that there's going to be some differences. So, for example, the people who just have misophonia, significant, but there's not anxiety or depression or other things. Are there some differences between those who have it and these other problems? Like, we don't know the answer to that yet, but we need to. And so right now our interventional efforts are really trying to group everyone together and then sort out which way we, excuse me, which way we go from there. But with time, we're going to see more advances, much greater understanding. And with the Mississiponi Research Fund, I think that's accelerated it in a truly dramatic fashion. That as we were talking earlier, with that, what's happened in 10 years, I think not only will we see kind of that same progress take place in the next two or three years, but we're going to see it kind of exponentially increase because of that investment, because of the attention being given.

Adeel [29:29]: Yeah, actually, do you want to talk about maybe a side note into the Misophonia Research Fund? I was at the Misophonia Association Convention last year. October when that was kind of all being announced and you're one of the recipients of it. Do you want to give folks some background on that? And maybe there are some potential researchers listening that also want to apply that we can just kind of, yeah, get it, get as much research happening. But it seemed like a great, it seemed like great news and I'm glad that you were accepted. Do you want to talk about that, the fund in general?

Eric [30:00]: Yeah, I would love to. You know, one of the challenges with our existing funding bodies, which, which are, have many benefits and have supported a fair bit of our work, like National Institute of Health, is that there's sometimes challenges addressing new disorders relatively early in their history of classification, if that makes sense. And you have to establish the basis. And right now, with the National Institute of Mental Health, that one of the challenges becomes, okay, well, how many people are affected by this and what's the overall impact? And you end up studying kind of the construct of selective sound sensitivity across multiple populations as opposed to necessarily people with misophonia. The beauty of the Misophonia Research Fund was that there was really incredibly generous earmarked set of funding that was supporting people who are conducting research in misophonia, as well as those who have kind of been, you know, danced around the outskirts with potentially different, you know, different foci or so on. The other part that I just frankly love about it is that We originally sat around in a large group setting with the world's experts in this space and talked about what the needs were. And we're really pushed in a unique and exciting fashion to try to come up with what some of those needs were and how do we effectively address those problems. And so that ended up resulting in multiple kind of topics, but also collaborations with people who may not have otherwise been able to connect. So they originally awarded several grants through a competitive application process. And what I thought was especially cool about the grants is that they really hit a number of different domains. So for example, there's one group at University of South Florida and University of Miami, who's adapting cognitive behavioral intervention to help people kind of cope with the distress and manage the distress related to misophonia. Whereas there are other groups who are really trying to understand kind of neural mechanisms of misophonia. And then, of course, with our group, looking more at a kind of a phenotypic characterization. Beyond the knowledge that we're going to gain, I think the part that's especially neat is that it's getting these groups to kind of work together. And then that will result in and have further collaborations and submissions to National Institute.

Adeel [32:59]: Interesting. Yeah, it's exciting to see other research coming around. Yeah, I'm curious, you mentioned the Florida group. Are there other groups and research projects that kind of excite you?

Eric [33:14]: Yeah, there certainly are a number of other ones. For example, across the sea in the UK, there's development of different assessment approaches as one exciting one.

Adeel [33:29]: Yeah, there seems to be a lot of work in Europe that seems really interesting.

Eric [33:35]: Absolutely. They've really done some cutting edge work in terms of trying to understand what are some of the interventional components, and I think have really made some good progress. and been very generous in sharing that progress.

Adeel [33:52]: Yeah. So I want to come back to, yeah, I guess some of your own research. I tend to kind of go back and forth all over the place. But something you mentioned about, yeah, the differences, looking into the differences between people with misophonia. Are you talking about differences in kind of their... their thinking patterns, brain patterns, or is it differences maybe in their past experiences? What are you focusing in on there?

Eric [34:22]: Yeah, it's more in the form where we're trying to understand kind of how they perceive information that they're receiving. So what's happening early from a neural perspective when they're being triggered? What's happening from an effective perspective upon triggering? And how do those things actually connect is just one example. We will ask about some past experiences, but not in a way that would We don't believe that there's any link related to past experiences and the expression of misophonia.

Adeel [34:59]: Yeah, one reason I ask is because there have been a few cases where somebody, and it's easy to be... folks who are still in high school or college, they remember that it began almost at the same time as like a loved one passing away, like a grandmother dying, for example, and being triggered or picking up triggers based on you know, maybe sounds I hear at a funeral or just events right around that time. And so there's been, you know, some, you know, informal talk about, you know, childhood trauma being associated with it. And this is just, this is not scientists. I'm just talking about, you know, misophonia sufferers. So I'm just curious if you had seen any or observed or were looking into studying potential childhood, you know, trauma being tied to this in kind of some kind of a Pavlovian way.

Eric [35:56]: One of the things I love about conversations like this is that there's always an idea or more that come from it. So if you could see, I'm writing down with my chicken scratch exactly this to make sure that we're fully conceptualizing any sort of environmental events that took place around the onset of symptoms. I've seen that too in several cases. For example, someone I saw recently described that they always were sensitive to certain sounds, but upon time where they had a major exam where the outcome of the class rested on their performance, It just escalated. So it wasn't a trauma per se, but it was a clear stressor that coincided with the timing of escalation of symptoms. And then it never went back. Again, kind of gradual increase and then very dramatic. So making sure that we're able to retrospectively hit that course. And what I also really appreciate is parents know all. And even if we don't, we tell our kids that we know all. But being able to have both the child and adolescent's report as well as their parents' report really helps us kind of come together to try to understand most clearly what's happening.

Adeel [37:32]: Yeah, and that brings up another great point. get a number of parents who are always wondering how they can best help their kids who might be suffering. What do you tell parents who come in, bring their kids in, whether to your studies or to your clinical practice?

Eric [37:52]: I think the first thing that we really emphasize is that this is a family condition. And so you think about cancer as an example. someone doesn't receive a diagnosis and then everyone essentially says, peace out, deal with this on your own. What we know is that those that have supporters and people kind of learning what to do to help them tend to have the best outcome. And so that's how we want to kind of approach this. And so sometimes that means that we have to shift ways of interacting in the family. for whatever way that's specific to the person. But we know that the best way to do that is by engaging those that love the individual. What I also do is really focus on what are the outcomes that we're shooting for. So would it be great if we could completely get rid of the misophonia? That, yeah, that'd be incredible. Right now, we're not at that point, but that's where a lot of this research is trying to get us to. So for now, it's thinking of, okay, what are the things that you want to do to live the life that you want to live? And, you know, whatever that is. And trying to understand that and then set kind of a treatment plan that's consistent with achieving those goals. And so within all that, there's an element of hope and optimism and an idea that you're not alone in this whole process.

Adeel [39:20]: And yeah, it's great to see more parents taking understanding what this is and part of it's through awareness from folks like folks like yourself spreading spreading that education. Yeah, another another note I had from my my chicken scratchings are you know as you probably know like visual triggers come up a lot and um they seem to come up you know they follow the audio triggers but i'm curious um what do you what do you think about the the onset of visual triggers is this because it's not audio is it is it tight is it me is this maybe condition that crosses senses is it um Is audio the main thing and it just kind of creeps in and the visual is related to that? I'm just curious what you think about visual triggers.

Eric [40:05]: Yeah, I thought about that quite a bit. And one theory is that this really is across various senses. And I think there's some evidence that would be suggestive of that. Another, I had someone once describe it to me that the visual trigger was upsetting because they could almost imagine the sound that came with it.

Adeel [40:31]: I think of it as like, okay, now this one is like ingrained and now the visual is just kind of a warning to that and it just kind of keeps going backwards.

Eric [40:43]: Yeah, I think that's a great way of thinking about it.

Adeel [40:47]: Yeah. And so, I mean, I don't know. Do you have any, I guess, not looking at the trigger is one way, but I don't know. I'm curious if there are any like unique coping strategies for visual triggers that are novel, do you think?

Eric [41:03]: Yeah, so the novel part kind of changes it. One of the ways I try to characterize our various interventions is through parsimony. One of my mentors, when I would write papers early in my career, he would use the acronym KISS. And I prefer to think of it as just spelled K-I-S, but... He used two S's and the acronym stands for keep it simple, stupid. So you can see why I want to get off that last desk for me. But but I you know, I think about it in terms of that simplicity. And and so at the same time, appreciating that we live in a society where there are certain values that are held. So, for example. With an auditory trigger, while headphones may be something that help mute noise to a degree that you can have dinner with your children or your loved ones or whoever, it wouldn't be an appropriate approach to go on a job interview, recognizing that some people just may not understand what this is, and it can kind of penalize you accordingly. That doesn't mean that later you don't converse with HR to kind of have appropriate accommodations put in place, but it's thinking of how do you successfully navigate those situations. In the same way with the visual triggers, things like, you know, kind of diverting your gaze for one. If someone's blinking is really bugging you, looking at their forehead is another option. Or kind of looking down a little bit lower at their chin. So you're still maintaining a semblance of eye contact that, again, wouldn't penalize you within kind of the social framework of that situation. Now, of course, if it's someone that you know and care about, you know, providing feedback. Hey, you know, don't take this the wrong way, but, you know, but kind of looking at you kind of tap your pencil again and again or, you know, kick your leg. I'm really interested in what we're talking about, but I'm just going to kind of look over this way so that I'm not seeing that.

Adeel [43:16]: Yeah, that's another thing people would like to always are looking for is like, what are some talking points, suggestions for talking points? And that is a great one for misophonia in general. You know, how do I broach the subject with people? Because we're so used to bottling this stuff up inside that it's, you know, the thought of mentioning it just is associated with so much embarrassment and shame and all that baggage that comes up. Are there any other kind of like talking points that you kind of suggest your patients use?

Eric [43:53]: You said it. There's so much shame related to misophonia and, of course, to other conditions like anxiety. And one of the things that we really try to advocate is just... really being both a stakeholder and an advocate. What I mean by that is just explain it. What I've found is that the vast majority of people, they may not understand, but it doesn't mean they don't want to understand. And so it becomes incumbent upon us to kind of gauge that situation and potentially provide information. I think about one kiddo I had, in this case with Tourette syndrome. And so he was having some difficulty with other kids, not maliciously picking on him, but being like, why are you doing that? Stop. It was kind of a classic kid response. And so one day, he and his mom went in, and they just gave a presentation on what tics were. And it changed everything. Now, they were lucky. They had a great school, great teacher. But it was all about providing that information. And I think as adults and teenagers, especially, we can do it in a way that's really kind of acceptable to the recipient. Hey, I'm not uninterested in what you're saying, but when I see you breathe, it really just kind of makes me upset. There's a condition I struggle with called misophonia. And because of that, I'm totally interested, but I'm just going to kind of look over in this direction. Or I'm going to keep these earpieces in because it helps kind of reduce the sound so that I can really effectively pay attention to what you're saying. And I think that provision of information with the justification allows people to sort of understand it while at the same time doing a small thing to reduce the stigma. Yeah, that's fantastic.

Adeel [45:59]: Yeah. Education to reduce the stigma. I think we're still we're still heading in that direction. That's great. Yeah, I guess, you know, we're coming towards the end of the hour and kind of on that note of the future. I'm curious. I'm sure you picked this particular, the topic of this study from probably many ideas that you have. What would you like to study next? Is this kind of stepping stone to other things you want to study? Are there parallel ideas that you would like to explore given unlimited funding?

Eric [46:33]: you know what's what's you know what else you have bubbling in your head that you'd love to kind of tackle for misophonia yeah absolutely um and i love the comment about unlimited funding um one is to to very very comprehensively understand um even at levels beyond what we're doing how do we characterize uh the various subgroups of misophonia and this cross cuts um you know all really all types of conditions If we take autism as a parallel, you can have the expression of autism, but what's underneath it is so different as a function of individual kids. And the way that we're trying to get at that is through multiple efforts. So some of them are kind of genetic efforts. Some of them, especially where you take like a certain kind of identified gene and you start kind of going down like this rare variant pathway. that'd be one piece the second is linking it to higher level kind of understanding of circuitry for example with various imaging techniques so that's kind of one piece and understand how we can take that information and apply it to intervention is really where we see a lot of our work going now at the same time i've i've loved in my career that that i've been able to maintain this On one end, kind of a mechanistic understanding of certain problems and how that may translate to treatment as a second domain of our work. But then the third is this more kind of, well, we got to get the stuff out there. And in some ways, it's a little bit like... the COVID vaccines that are being developed. Right now, one group has one that's promising results, and they're already producing the vaccine just in case it works. So it might not work. It might work partially, or it might be a grand slam. And I get why they're making that investment. But on some level, we're moving forward on multiple pathways, which really is to the credit of the Smithsonian Research Fund, because we need to have answers now as we refine the answers in two years, five years, 10 years. And so I think that public health piece is really a big idea of how do we get the schools to understand this, colleges to understand what this is, workplaces, and of course, our clinicians in the community. There's so much room in that space. There's so much work in that space.

Adeel [49:15]: I don't know how to even begin to say thank you. It's always fascinating to talk to a researcher who's as passionate about It's funny as, you know, as sufferers, we're just trying to get the word out. So, yeah, thanks for the study. And, yeah, trying to spread awareness and try to get to an answer here. Yeah, I appreciate you also answering all my random questions based on observations I've had kind of just talking to people. So, yeah, it's great. And I'd love to maybe one day come down to Houston.

Eric [49:44]: Well, trust me, these days we have no life, so you are always invited. But no, I want to say thank you to you and folks listening. I mean, to you for doing more than your part to address the stigma, to spread knowledge and information, and to build a community. I think that's one thing people really struggle with is the lack of that. And it's incredible. And there really aren't things enough. And then I think to those that are struggling with this, I'm a former New Yorker, and there's an impatience that I think is inherent to that. And so some of that is, we got to get answers soon. And so for everyone listening, I mean, we're The point I convey is you're not alone. There are people who may not know you, but we're thinking a lot about you and what we can do to try to help out. And if there's anything that I can do or my team can do, it's just an email away. Please don't hesitate to ever reach out.

Adeel [50:47]: Yeah, we'll have the links to the group, your information in the show notes. So, yeah, I appreciate that.

Eric [50:57]: Very cool, very cool. Well, you stay safe, stay healthy, and anything I can do, just drop me a line.

Adeel [51:07]: Thanks again to Dr. Storch. Very enlightening talk from a researcher studying misophonia. I hope you enjoyed that. Let me know if you'd like to hear more from folks like Dr. Storch. Remember to share this episode so it can get to not only other sufferers, but also other researchers. And hit the five stars on iTunes if you like the podcast to help us move up in rankings. Music as always is by Moby. And until next week, wishing you peace and quiet.

Unknown Speaker [51:58]: Thank you.