The Mysterious Misophonia

not have any slurping, ums, throat clearing. We've kept our verbal to hopefully down to nothing, but sometimes it's hard you don't know you're doing them, but hopefully it's very minimal to zero. And we just wanted to let anyone listening no who has miss aphonia, that we tried to be as mindful as possible and hopefully you will be able to listen to this episode and you will get a lot out of it for those who don't know

what is miss aphonia. And this is taken from the Duke dot E d U website, where again my guest today, Dr Zachary Rosenthal, is a clinical psychologist and Associate professor with a joint appointment in the Department of Psychiatry and Behavioral Sciences and Department of Psychology and Neuroscience at Duke University. He is the director of the Center for miss Aphonia

so miss Aphonia. According to their website, the word translates literally into hatred of sound, but this can be misleading because one anger is not the only emotion experienced in miss aphonia, and to some people will also have visual triggers. Without sound, there is heightened sensitivity and reactivity to particular meaningful triggers, resulting in aversive, physiological, arousal emotions and thoughts.

Each individual may have his or her or their own unique trigger sounds, not formally recognized as a specific type of neurological, audiological, or psychiatric disorder. Some trigger sounds for the missophonic is chewing, slurping, sniffing, loud breathing, tapping, or clicking.

Most often, it's the repetitive or patterned sounds that are difficult to avoid, commonly sounds that are made by other people, but some people do have a version to environmental non human noises like mechanical noises such as ticking, or clicking sounds. Mesophonic response is not usually caused by loudness of the trigger, and misophonic response may not be consistent across people or environments,

and responses can vey ry over time. The mission of the newly launched Duke Center for miss Aphonia and Emotion Regulation is to become an international leader in the advancement of research, education, and clinical services for individuals with miss aphonia in difficulties regulating emotions. And so let's talk right now to my guest, Dr Zachary Rosenthal, and we'll find out why this topic is so personally important to him. I hope you learn a lot, and thanks again for

listening to anxiety bites. So before we we're recording, Zach you were telling me some things to be sensitive about in terms of noises that I can make, not me particularly, but that anyone on a microphone could make that would be really disruptive to someone listening with miss aphonia. And of course it's all things that I would like to avoid doing anyway, because I just can't stand the sound of But I don't know how to say what we

were talking about without triggering anyone. Yeah, absolutely so with ms aphonia it's really easy to unintentionally trigger somebody by saying or doing certain things that are kind of like vocal ticks. So Jen, what we talked about doing that is probably helpful for the audience is to have some awareness and some thoughtfulness about how we're talking. And we're just going to try to be careful and mindful with,

you know, potentially doing things that could be triggering. So I've got my cup of coffee here with me as we're doing this, and I'm going to really be mindful to not slurp loudly, and I'll probably not even take a sip, and if I do, it'll be very quietly and thoughtfully. So things like that, we're gonna do what we can to try to minimize any disruptions or accidentally

trigger anybody. And so, as you know, I don't know anything about miss aphonia, and I had someone right to me asking that I do an episode about it, and I was planning to anyway, I have to assume that much like O c D, where people who really don't have O c D say, oh, I washed my hands a lot, or I can't stop checking the log I'm sure plenty of people say I hate the sound of people chewing I mean I do. I I haven't been to a movie in the movie theaters in years. And

this has nothing to do with COVID. I just don't like experiencing it with people's food sounds. So in that sense, how is this an actual thing? And it's not someone saying, yeah, I don't like when someone's chewing popcorn in the movies. What is this? What is the actual sure? What is ms aphonia? Yeah, you have a great way to start thinking about it. So a couple of things. One is that is a condition disorder that you can see in people if you're in the movie theater or on the airplane.

These are the people who are giving you the evil look when you're popping gum or crunching on pretzels or chips, or repeatedly making certain noises or even making repeated movements. And the thing about people with miss aphonia is that they don't they don't want to be this way, right.

This isn't something they're choosing. This isn't a person who's trying to be controlling or manipulative or or anything like this is this is a condition that they don't choose, and yet they have and it can be extremely debilitating and really dominate everyday lives. It's absolutely a miserable condition to have. Think about any other type of condition where you can have it on a spectrum of severity, right, So think about just use let's say anxiety, generalized anxiety.

People have generalized anxiety disorder on kind of the hail end of the distribution of intensity of anxiety. Right, it's not just that they have every day anxiety, but it's really significant and it's really impairing them in some in some ways, socially, academically, occupationally, the anxiety is getting in the way of their life. Right, that's generalized anxiety. But you know, it's normal to have anxiety. We all have anxiety from time to time. So the same kind of

thing is true with miss aphonia. It's normal to find certain noises annoying for all of us. Right. If I'm on I don't have missophonia personally, I'll share my story about how I got into this world in a little bit here. But I don't. I don't have miss aphonia, but I certainly get annoyed if I'm on an airplane with somebody and they're snorting up a storm next to me. There.

You know, they're making these disgusting noises, or they're eating loudly, or you know, I don't like that, But that's not missophonia. That's sort of like, you know, people with anxiety can be anxious, but that doesn't mean they generalized anxiety disorder. Okay, So the long and short of it is this gender that the difference between a disorder and experiencing some of the phenomenon in the disorder is a matter of two things,

one severity and two impairment. M It's not complicated, actually, Jen, It's kind of that simple, the really end of the spectrum of severity, where there's impairment in day to day functioning against socially, occupationally, academically, when somebody is impaired because of this, but they can't work, they can't work effectively around others, they can't they can't you know, share a dorm room with someone at college, they can't be in

a classroom if without having significant intense nervous system arousal. Again, this isn't This isn't sort of just a thing somebody is thinking about. This is the thing in their body that's happening. It's very real, it's very nervous system. It's very brain. It's happening inside of their body, and it's uncontrollable, and it's unconscious as well. It's just a reaction to

the stimula around them. And when it's so severe and it's so intense that it's disrupting their lives in a significant way, that's where we say, Okay, this is miss aphonia. This is not just being bothered. This is where there's impairment and the severity is high. And we would use the same argument for depression. People can be sad, they can be hopeless, but that doesn't mean they have major depressive disorder, right, They're just sad or hopeless from time

to time. People can be anxious. That doesn't mean they have an anxiety disorder. It's the same thing. It's really it's actually not complicated in that way. Right. It's not an episode of Curb Your Enthusiasm where you know, Larry David type person who's bothered by everything is ranting and raving. You know, why do you have to eat your ice cream like that? It's it's like you said, it's in their body. It's not a thought. This is annoying. What

does it feel like in someone's body. You know, for me, my qualifications in the anxiety world is I've had generalized anxiety disorder and panic disorder and various phobias, and it's fascinating to me when somebody has never had a panic attack, I just can't believe it. And so I'm like that with ms aphonia. So can you tell us what it might feel like in someone's body, from the smallest case, maybe all the way up to how intense it can

really get. Yeah. The best way so far that I've found to explain this is through the words that a patient once shared with me, and what she said that I was asking about her experience, basically the same thing you just asked, but for her particular And she said, Dr Rosenthal, don't you understand, It's as though there's a grizzly bear standing next to me that suddenly appears that I can't control. And I look next to me and it's just standing there. And she looked at me and

she said, how would you feel? How do you think your body would react what happened inside your brain and in your body if suddenly you turn the corner in the hallway and there's just a grizzly bear standing there, you would just have an automatic reaction of get out of there. So it's it's this real kind of it can be in an intense way. It can be a very strong reaction of danger of threat in the nervous system,

so in the brain and throughout the body. We have all these really complicated, evolutionarily programmed systems that keep us alive, that keep us safe, to keep us surviving, and some of these systems seem to be triggered by people with ms aphonia when they experience these triggers. And the thing about triggers is they're they're not usually just a singular thing. It's not like, you know, somebody clears their throat once and now the person experiences a grizzly bear next to them.

It's really more of a repetitive que that happens. Oh interesting, okay, right, So if I cleared my throat once on this podcast wouldn't be great. But if it was, like you said, a nervous chick, I'm doing it every two minutes, at a certain point, the anxiety builds for them. That's right, because their brain it's as though their brain is sensing that there's this thing that could happen that is highly unpleasant,

and it's their brain. Is the parts of the brain that are being triggered are probably these very very kind of what we call bottom up so automatic automatic, unconscious parts of our brain that are triggered when there's something really unpleasant. And then there's also these topic what we call top down parts of the brain that are kind of the conscious regulation parts of our brain where we kind of like think about what could happen and we're

worried about what might happen. So both of this bottom up and this top down thing might be happening with the person with miss aphonia where they're anticipating in some ways.

In some ways this is not PTSD, but in some ways like PTSD, where there's an anticipation or what we would call hyper vigilance almost like a antenna coming out of the head that are sensing and scanning the room, the world around them, waiting, anticipating and not necessarily by choice, but it's just kind of this automatic thing that's happening. They're waiting to see will the trigger happen again. And this attention that gets really disruptively focused on potential triggers

is part of what makes us stabilitating. I mean, imagine you're in a classroom where you're at work. You can't focus because your your brain is waiting for the next trigger. It's waiting for this next sign that there could be a grizzly bear that appears. It's hard to control that. It's hard to control that because it's very kind of it's just sort of a very pre programmed thing in our in our brain and our body. It's ultimately comes down to survival circuitry throughout our body. It's tough to

outthink that. It's tough to just sort of think it away in the moment. Right, it's this very body like experience. So to make it, you know, fairly straightforward here, there's three kind of general things that we expect and these won't sound surprising to you. If you think about anxiety, you've got a flight response, right, the urge to flee, to escape, to avoid, to basically get away or or discontinue the stimulation. Right. You just want to get away

from it, whatever you can get away from it. Put on earbuds if you're on the plane, look away, don't look. Jack up the volume on the earbuds so you don't hear the whatever it takes to discontinue the you know, the potential of being triggered. And if you can't do that, then you might I hate to use the word fight because it sort of goes with flight, but it's sort

of this confrontational like response. So there can be this you know that I said earlier, the evil look on the plane, right, that's sort of a sort of an indirect aggression of passive aggression. It's a way of you know, looking at the person and just wishing that by looking at them, they will read your mind and know that

they're annoying you and they should stop chewing. Those people never seem to be very good at mind reading, by the way, correct, correct, correct, and and it's it's really sad because it's kind of this wish in the moment for the person with missophonia that if you know, if they if they look at this person, that somehow the person will just stop. And it's a it's an effort to try to control the situation, and you know, it

sometimes works. Right, you're in the movie theater, you get triggered, you turn around, you look at the person, and in that context, that person might if they have decent social skills, they might read the cues and go, Okay, I need to stop shaking my popcorn bag or taking my ice and you know, shaking it up and down in my in my cup. I need to stop. Maybe they have the social wherewithal to realize that, but maybe they don't,

and so it just doesn't work out. But in a lot of situations, it's not that obvious what's going on. And msophonia is not a thing that people really know about in the world. It's a relatively new condition. It was first named in two thousand two, and the first research studies only two thousand nine years ago. This is a new term. It's a new thing. Very few people walking around who are the recipients of that evil look have any idea that there's a thing called miss aphonia.

So it's a really tough situation. Will be right back years ago, I had vocal cord problems and they were inflamed, which makes it feel like there's something in your throat, and I was always clearing my throat, which then makes

the vocal chords inflame more. And I used to have another podcast and some of my listeners that I have to stop listening because of your throat clearing, and I was offended, but they were trying to explain miss aphonia to me, and I while I accepted it in that moment, even though I feel I am the most mental health awar except ding person, I still look at personally by

the way, They're right, nobody wants to hear that. My point is that even someone I think as open as me can can think, oh, come on, I mean, just deal with it. Sure it's me, you know me, get used to it. And I I really think this must be such a tough thing to have, because unlike a panic attack that comes on out of nowhere, where I've explained to people I'm not panicking for any reason, it's just happening, they can look at me and think, wow, I'm so glad, I'm not jen I don't know what

that is. God speed, you're a little crazy. Good for you. But when it's something we've all experienced, I don't like that sound. That sound is skeeving me out or disrupting me. We really, I think, can have a hard time thinking. Yes, but this is not about thinking and not liking. This

is a physical, anxious reactions. So you cannot expect someone to just put it out of their head the way that you're doing it, and I think it's it must be so debilitating on that level to go through the world feeling like people think you're just making a thing out of something that's right, which brings me to my next question. Is this a anxiety disorder? Is this a phobia? What what world does this fall into? Well, first, let me respond to your your last comment and I'll come

back to the diagnostic question in a second. The first comment, I think you're right on, and it's really really important observation you're making. That's I think it's a really significant portion of what's so difficult for people with miss aphonia is that they live very often in this space of shame and silence and secrecy, and you know, they've oftentimes been told their whole life that it's their problem, it's their thing, it's sort of there, quirky personality, it's their weirdness,

it's there. You know, there's something wrong with them. Has been the message in a way that has gotten internalized, and so it becomes this shameful thing if they walk around and I don't want to tell anybody about and that feeling really fundamentally different from others and feeling like you're carrying around this, you know, this terrible thing that nobody would understand. I think that is a big part

of what's difficult. I can't tell you the number of times I've talked to patients or research participants with miss aphonia where they've told me that that has been one of the major problems for them with miss aphonia is just the social the social problem of having it and others not really just being aware or understanding it, or just being downright dismissive or you know, critical or judgmental,

which people are. People are. Luck we we live in a judgmental world, so people get judgment all this stuff, and that that can be a huge part of the problem. Okay, so that's my response to the first thing you said. Now, in terms of the diagnosis, you have to first think about it this way. So it is not a formal diagnosis of any psychiatric or medical nomenclature, which is just a way, a fancy way of saying it doesn't fit

neatly into any one category. And if you you can't take a step back, you say, well, okay, how do I make sense of that? There are many other conditions I'm a clinical psychologist, so I'm coming from kind of the mental health space. In the mental health world, there's many other conditions that didn't formally exist as names, as

diagnostic entities until they did one day. And they did one day because a group of experts, a group of scientists sat down and decided, we're going to give it a name, and this is what it is based on the science. The science is what drives that, by and large, by the way, so when you have a newly named condition like miss aphonia, you have to crew a ton of science. You've got to do a ton of science to be able to figure out what is it, how is it different than other things, what do we do

about it to treat it? That's all science. That's all science, right, and science just takes a while. Science is expensive. Science takes a while. So you can't fit it neatly today into a category and say it is this or it isn't that. It's not an anxiety disorder, it's not an obsessive compulsive disorder. It's not a phobia. I think you think about it this way. It's a multi disciplinary problem.

It's not a psychiatric disorder. Now it might be that science over time determines that it is best to define it as a psychiatric disorder. And it might be that some of our work at Duke is a part of that. That might happen, but that might not happen. Also, we'll see the science has to be done to figure that out. For today, you can think of it as a multi disciplinary problem that probably sits in the intersection of psychiatry, psychology, neurology, audiology,

an occupational therapy, to name a few. It's sort of sits in that nexus point and that's a preview for what I imagine we'll talk about in a little bit about what to do about it, to treat it. Well. This is fascinating because as you're saying that it's it's reshaping my mind, and I'm thinking, right, this is a auditory neurological thing and it's not about It's like where it can be friends with anxiety, is that you can be anxious about the fact that you have it. How

are people going to react? There's that shame if people are shaming you, or that sort of constant vigilant looking for triggers, very similar to people with anxiety, but it's not inherently coming from an anxiety disorder. So this is just really interesting. It's its own thing, or maybe it

is and some people coming from it. So in other words, if you were to take under people with an anxiety disorder and try to try to separate out what part of that is really about missophonia and anxiety specifically related to miss aphonia, and what part of that is not. If you were to do that, at least with those people who report having missophonia, you I'm pretty sure you would find that a lot of those people that have an anxiety disorder actually a missophonia, not an anxiety disorder.

If you were to sort of if you were to do a study I'm just thinking as a scientists, or if you were to do a study where you define things differently, measured them differently, and separated them out, I think you would probably find a lot of people who are getting diagnoses of psychiatric diagnoses which which may be legitimate, of course, but they might also be kind of infused with or in a way that's just not easy to separate out, combining miss aphonia into it, and it might

just make it difficult to really tease those two things apart. And people of missophonia can have all sorts of different psychiatric co occurring disorders, and they can have no psychiatric co occurring disorder. So this is the thing is you can have people with any anxiety disorder, with any mood disorder or substance used disorder, or impulse control disorder or

obsessive compulsive disorder or personality disorder, etcetera, etcetera. These are just the types of disorders that are psychiatric disorders are just in categories types, and somebody with msophonia can have really any of those. But that's one person. That's not the diagnosis, that's not the condition as a whole. That's

just that person. So ms aphonia is the way that we talked about it and study and kind of think about it and train people about it is that it's not It does not appear to be specifically related to any one psychiatric or mental health condition. You know, it used to be about nine years ago when this condition was first labeled, a lot of people were saying in this little space that I'm meant of missophonia. They were sayinglined,

this seems like an obsessive compulsive disorder. There's obsessions, there's a compulsive response, isn't this just O c D? And some of the early writing was about kind of making

that argument. But I am here today to say that it does not appear to be specifically just O c D. It is not just O c D. There's no data, there's no scientific data nine years later to suggest that this is just simply O c D or a type of O c D. It's really not, and therefore we probably shouldn't treat it like we treat O c D when we're treating patients. We probably need to think a little bit more in a more complex way than that.

It doesn't sound like O c D to me. If you want, if you want to meet away in on it um, it doesn't sound like it. But I want to get into before I have so many little nitty greedy questions about what about this, about that, But let's get into your work. So you're the director of the Center from miss Aphonia and Emotion Regulation, and so you lead a team that conducts research and provides education. And so you started this group, right, Yes, we started this group.

We've been doing research on miss aphonia and then before that, sensory sensitivity and before that emotion and emotion regulation. We've been doing that for a while. I've been at two now for for twenty years doing research, and most of it's really been around emotion and emotional responding, but over time I got more interested in sensory and sensory reactivity, and that kind of morphed over time into miss aphonia

more specifically. And one of the big reasons why it morphed to miss aphonia is that although I don't have miss aphonia, I do understand it very very well because my wife has miss aphonia and I live with miss aphonia, and we've been together since I better I better get the year right very quickly here since nineteen so a long time. And you know, back in we met, this is just like, you know, a thing. It was she

that I'm sensitive to sound okay, whatever, that's fine. But as the thing gets labeled in two thousand two, it becomes a thing that's being studied. Later I come to realize she actually this is what this is, and she is very open about this. And she is an amazing woman who I've spoken about publicly, and she gives consented to do this. She has PhD and is great, amazing mom of two teenage boys, has amazing friends, It lives

a normal life basically. Yeah, So it's actually an inspiration, I think to a lot of the people that I talked to, because a lot of people with misophonia will will tell me, you know, a lot of younger people will say, I don't have any hope for a relationship, that I'm never going to get married, I can never live with anyone, I can never have a partner. Kind of all of these I can never, I will never, which are of course worries. They're not truth right, that's

those are not truths. Those are just worry thoughts that those people are having, but they're coming from this sort of chronic sense of shame. And at any rate, my wife does not have any of that. So she's been I think she's been inspirational a lot of a lot of the people that I've shared this this story with openly. So I understand missophonia as a partner and as a you know, as a as a dad, and it's in

our family, and it's a thing. It's the way I think about it is that it's like it's like any other thing you mentioned You've had g A D and panic and d h D. I have type one diabetes Type one diabetes a big, huge pain in the butt. It's a serious problem and it causes all sorts of problems in our house because I got to manage it, and it's an everyday chronic condition and I hate it. We'll continue the interview on the flip side of a quick message from our sponsors. Is there with someone with

ms aphonia? Does it happen more or less with certain people? So, in other words, could you trigger it more because you're the husband, or do you trigger it less because there's this love and experience between the two of you, or does that not matter? The context, the context in which the trigger happens seems to be important. This is the science on this is starting to come out that's suggesting that it isn't just the sound itself in a vacuum. It's sort of the sound in context or the triggering

que in context. So very often the person with ms aphonia has like kind of a primary triggering person or people, or primary triggering context. An example might be when I meet with a patient and I, you know, I asked them regularly, is there anything I can do to make sure that I'm not triggering you? And they'll say oh, you, you aren't going to likely trigger me. Not everybody says this, but a lot of them, Well, so you aren't going to likely trigger me. You're you know, it's not you,

it's these other people. And then they explain who the primary triggering person is or people, And most of the time this is no shocker here. This is this is based on proximity and familiarity. So it's the people that they tend to be closest to and around the most are oftentimes the ones that had the more complicated learning history and the more repetitive pairing I think of being triggered and having these these complicated reactions. So it often

is a family member. It often is This is really a long winded way of saying, I still can trigger my wife, not because I want to, but it can happen her kids. Our kids can can trigger her. And and

and this is part of miss aphonia. And so a lot of times we have to do with miss aphonia we're helping patients is we've got to figure out what are the primary triggering sources, what are the primary triggering people, what are the primary triggering context that can kind of turn up or turn down the volume on how likely that person will be triggered, and that can include things inside the body, like how tired you are, how stressed

you are, whether you've taken your medications, whether you're feeling chronic pain. Those things can actually make any trigger worse. Or it can be things in the environment outside of your body that can make the trigger worse. It can be you know, the situation that you're in, of course, and all of the various stimuli. But yes, it can be and often is somebody who you you know, that

is one of the primary triggering sources. And so the hope you can give them to people that say I'd never be able to have a relationship, it's like, of course you would, you know, because you're handling it outside of relationships, and so at the very least, this would be someone you could talk to you about it, you know, unlike the guy on the plane. That's just right, that's right,

that's right. I mean, look, I'm one of the few unicorns that really understands misophonia the scientifically and clinically and and um, you know, in my real life outside of work. I mean, I get it. There's not a probably a lot of people in the world to get it. Like that, and I do, but that doesn't mean that I don't trigger people. I mean, it's still going to happen sometimes. So it's it's not a matter of trying to never ever ever trigger somebody. It's trying to in a relationship.

It's about being understanding, being validating, being compassionate, being thoughtful, and when you screw up, owning it as best as you can. And if you don't own it, own that own that you didn't own it, and you kind of look to move on it in some ways. Isn't that complicated, But it does require understanding that this is a real thing and that the person is not wanting this to be what's going on in their body. This is not something that's desirable to be experiencing. So what age do

you think most people develop this? And and you know, saying in the primary source, we're not necessarily talking about some big trauma or anything like that, right, It's this isn't necessarily rooted in any kind of childhood trauma with parents. It could just be that your mother used to do something as a tick and it triggered you. How does this begin as our an age? Yeah? I think think about your question in terms of generalized anxiety or panic

or a d D. Right, and you get the same answer. Right, Okay, it's complicated. There's multiple probably multiple contributing sources. There's going to be biological sources. There's going to be environmental sources. Probably those things influence each other. They probably kind of our poor fits in some ways and can influence each other, just like we might think about this with any other condition.

There's not a single cause really of any condition, if you if you stop and think about it, I mean, the closest might be PTSD, where there has to be a trauma to have PTSD. That's what I was thinking, Like in your research, this isn't comparable to PTSD in

terms of that, Right, it's not. But even then, if you think about it, though, gen trauma traumatic events happen to most people right the day they are really clear, and that most of your listeners have had or will have a criterion a PTSD traumatic event happen at some point in their life. I have, I've had multiple of them. You probably have as well. You know, as you as you get older, these are more likely to happen with age, but that doesn't mean you have PtTe. So trauma is

a thing that happens to people. It's not a thing that happens to people who just happen to have PTSD or miss aphonia. So people in miss aphonia, people with miss aphonia sometimes do have trauma, just like people with any disorder or with no disorder happen to have trauma. That doesn't mean it's trauma related specifically. This is really a scientific question you're asking, and the science is not clear. And if I put my science scientists had on, we don't have the data to say with any degree of

certainty that this is caused by a traumatic event. We don't really have any longitudinal This science is so young on this gend that there's not all of the questions you would you or your listeners would want to have answers to. Really, we don't have good scientific answers to at this point because it costs a lot of money. And who's who's paying for Who's paying for the science? On this federal government before there's a condition that's a

officially accepted are they going to write no? So who's paying for this? It's philanthropic. It's people who are suffering who say I want to help stimulate research on this so we can get to treatments and we can help people. And that's really the only reason I have the Duke Center. From the sephonia and emotion regulation, it's through philanthropy. It's through anonymous donors who want to see change and are extremely generous to try to make that happen. But we

don't know, We don't know. I think probably there are multiple pathways. There are probably some people who when they're really young have varied biologically rooted sensory sensitivity. They may have other complicated conditions. They might have autism, they might be on the spectrum, they might have sensory what was what is called the multisensory over responsivity um, and they

might also have ms aphonia as part of that. But those folks might go on to be in the more severe end of the spectrum later on in life because they unfortunately have a lot of those vulnerabilities. But then there's other people who don't really developed ms aphonia until they're preteen years and the early scientific data on this gen suggests that that's the most common time frames around those kind of early you know, preteen, ten to twelve ish.

This is the early scientific data saying that's about typically when most people say that they remember having their first symptoms. But again, nobody's done the longitudinal work to really conclusively show that it's really just about asking adults to remember back when. And that's a pretty flawed way of getting to truth. It's really hard. Yeah, I do think I

want to say one more thing on this. I do think that from my experience that one of the things I always ask patients is tell me what your first memory was that you can relate to miss aphonia. And I'm trying to figure out in my own thinking, you know, what might be causing all of this, and trying to kind of build my own model and see if we can then turn that into some science and try to figure this this out for people. And one of the things that mainly happens is there's a story that gets told.

It isn't trauma necessarily in the PTSD way, but is trauma in a more complex way. And what I mean by that is that the person oftentimes reports by the way this would be the person who develops around the age of ten and twelve, not the person who had it from multisensory stuff when they were a baby, not not the more extreme folks, but people who kind of like later on is there, like a preteen they remember

this started. Very often the story that gets told is one where there's a chronic inescapable kind of circumstance that's really unpleasant, kind of like a chronic stressor where they you know, they're a kid, They're in their house and and every night there and let's say their dad is

an alcoholic. Or another patient said that they had a grandma with a serious medical condition that was immobilized and every day, you know, the family was focused on the grandma every night, and it was just, you know, really a sad situation. And the grandma was making these facial movements because she had a paralysis in her face. She couldn't control her face. So there was sort of these

these these odd ticks that were happening. Or in the case of the dad that was an alcoholic, the dad was drunk sitting on the couch and the person who told me the story said, I couldn't leave. You know, I was stuck in the house. I couldn't leave. I was a kid. I would get yelled at, I get in trouble if I left the room. Kind of just it was kind of unset I had to experience. I couldn't really escape it. And of course he was drunk, so he was making all sorts of noises with his

lips in his mouth. And those kinds of stories broadened out in lots of unique one off ways are the kinds of stories I often hear that's stuck in a situation. I can't get out of it. It's unpleasant, I hate it. And why would it be? These facial things? We as people, we've searched for information socially, naturally, unconsciously as part of

our survival as humans. Right where do we look? We look at faith, we look at faces automatically, we look at I'm looking at your face on the screen, you're looking at my We're looking for cues, and it's automatic.

It's how we make sense in the world. So it could be, and this is just an idea, it could be that in these chronically inescapable, unavoidable, stressful situations, as a way to figure out what's going on, maybe as a way to see is there a signal that relief is coming or is there a signal that worse stress

is coming? The person kind of preferentially automatically unconsciously is looking at faces and the people around them and listening for any kind of stimulate, any queue that's going to suggest to them that things are about to get better

or things are about to get worse. And then you know, multiply that experience times thousands of iterations, thousands of times where it's chronic and it just keeps happening, and maybe what you get is misophonia rights, it will be it will become intolerable to hear those sounds and see those

facial movements. Again, it's an idea. You know, this is an untested idea, but it's something that you know, if I just kind of think about what are the stories I hear and how do I kind of synthathesize them together and give it back out, That's kind of what I'm hearing most of the time. I mean, I think with most things where we're still figuring out we now I'm on your team now, while people are still figuring

out where things come from. I always find that the good news is there does always seem to be some kind of thing that people can do about it. While everyone's figuring out where this comes from. Are there techniques or things that people suffering from this can do so that they can be out in the world. I mean with I know this isn't an anxiety disorder, but one of the things with most anxiety disorders is there is no encouragement of avoidance. You have to go and experience

all of these things. And I feel like with miss aphonia, you know, we don't want to trigger people obviously, so I can be mindful on this podcast episode that probably someone with ms aphonia is going to listen to. But in the outside world that's less sensitive or protective of others. You know, it almost seems impossible, like how do you live? And so so what are the what are the what's

the hope here? Well, you know, first of all, let's be clear, you can't expect the world, the entire world to change for you because you get triggered that that's just not real. That's not that's just not reality. Right, So there is there is that to think about. And then on the other hand, um, it may also be reasonable to look for ways in which you can influence the world to be accommodating. And so it doesn't have

to be one over the other. It can be both, it can be both and right one can can try to influence their environment around them to make reasonable accommodations that just their common sense and ordinary being kind, being compassionate, being non mental, creating space where there's less stimulation that's aversive. I mean, these don't have to be complicated things, but that doesn't mean the person shouldn't have to figure out how to cope effectively. Of course, they also also need

to figure out how to cope effectively. The way I think about it's really a both, and it's not either or. We live in this very kind of extreme world. Everybody's one side or the other of things, and it gets it's just sort of the culture we have right now. But it doesn't have to be that way. It can be a both and people can get reasonable accommodations and be expected to cope effectively. And when you think about

a coping effectively, what does that mean? Well, there are lots and lots of evidence based ways to help people to regulate their attention, their emotion, their behavior, their communication, and their body. There's lots of ways across lots of different kinds of quote conditions that we know scientifically can help. And so what we do with our treatment very often to do because we try to figure out for any given person. Again, we're coming through as psychologists coming at it.

There are other disciplinary angles to come at this from, like I mentioned earlier, like audiology or occupational therapy for example. We're coming at it from the focus of coping and clinical psychology. So what we do is say, Okay, what is it that this person needs to be able to do to live their life more effectively? Where are they impaired, where are they most distressed, and what tools do they already have that we can leverage to help them cope effectively?

And then what are the kinds of prioritize problems that they have that they want to really focus on. So if we can figure out what are the different priorities that they have where they have a various different problematic patterns, Okay, John, I'm about to give you a bunch of peas here. Okay. So there's problematic patterns, Okay, So think about it this way, before, during, and after being triggered. There are going to be patterns that can be problematic. Okay. So somebody might escape or

avoid too much in some context, that's a problem. Somebody might be too confrontational or not confrontational at all, not enough that can be a problem. So there's going to be these patterns that are problematic that are learned over time that somebody in misophonia will will tell you they have. So first we got to figure out what are these problematic patterns. The second thing to do is to prioritize them.

That's the next piece, to figure out what is the patient's priority, Which of these patterns they want to prioritize changing first, and then second, and then third and so on, Which are they willing, which are they motivated to change for a second and third? And then what we do

is we start with the first one. All right, we said this is what you want, okay, So with this particular pattern that you've prioritized, here are the different evidence based ways to help people cope, and we give them options and then say which one do you want to do, Which one would you like to learn to do, one would you like to use, and let the patient choose.

So it's a very kind of patient focused, empowered, kind of shared decision making model where you tell me, because my my whole thing is the only treatment that works is the one that patient does. That's great, Yeah, so I want to give people options and to let them choose, and it doesn't have to be that we try to recreate the wheel with this. What we can do again is we can reappropriate in my words, evidence based interventions.

What are those? Are just things that work, things that science has shown work to help people who well, maybe not people with miss aphonia because the science is so new, but people with lots and lots of different kinds of conditions that share similar features like hyper vigilance like physiologically being really emotionally aroused and needing to find a way effectively to down regulator, to calm down, like having difficulty

with shame or hopelessness, like being unable to communicate effectively, or being too abrasive or too aggressive. Right, whatever the pattern that is, that's they're for that person that's a problem. Let's figure it out, let's prioritize what you want to do about it. And I'm going to give you some different tools, or some of my team will give you different tools, and you got to use them. Let's tryumph.

And these are typically cognitive or behavioral tools from the world of cognitive behavioral therapies, which is where most of the evidence based interventions are rooted, and so that's kind of where we where we work from. So in other words, if I'm someone with masophonia, I could be triggered. I'm in a classroom, professor's doing something that's triggering to me. There's a world where I learned some techniques for in

the moment. That's right, But it sounds like you're also saying, very similar to my work with having how to phobia flying, there are things I can do when I'm not in the situation to train my mind to respond differently when I'm in this situation. So you're talking about dealing with shame or regulating the body, we can all work on that. Yeah, that's a factory. And if you're if you're in a workplace, or you are a student in a class, classroom or university or a dorm, you know you can ask for

reasonable accommodations. You can, and I would say you can do that while also committing yourself to learning how to be better at coping. Both things can happen. It doesn't have to be one or the other. Anxiety bites will be right back after a quick little message from one of our sponsors. Do you ever see cases of people recovering fully from it. Yes, oh wow, great. I never I don't know anything about it, so I have no idea. Yeah,

I mean a lot of we're recovering. There there's no cure, right, and I'm not sure for most things, So there's no cure. There are treatments that appear to be helpful, but scientifically, you know, we need to do much more science, as I keep telling you to, to really figure out what are the optimal treatment. But have I seen people that get better? Absolutely? You know, we're treating people in our research studies, in our clinic that that get better routinely.

What does that mean? Well, they're usually learning ways to cope more effectively. They're usually learning ways to be less impaired. They're able to work, they're able to relate, they're able to function, they're able to do well in school. Does that mean they're never triggered? Now? Usually they're still walking around the world and the things that used to trigger them might still be triggering. But is it as intensive a trigger? Not necessarily? And is there as many not necessarily?

And is there a way to help once the person is triggered? Is there a way to reduce that emotional arousal faster, Yeah, right, and does it happen less often? You get the point, there's way to how people cope. Yeah, So it's it's like I think about it like anything else, Like you've mentioned, you know, g A D and panic.

Does it go away? Yes? And no? Right, Like, you're still vulnerable even if you're no longer impaired or um significantly chronically having these problems, You're still vulnerable, and so you still have to kind of be thoughtful in how you live your life. The same is true with substance use. You may not be a user anymore if you're if you're you're not using, but you're still vulnerable and so you kind of always have to go through life being

mindful and attentive and rallying with your coping skills. This has been incredible. I thank you so much for teaching me and hopefully people listening about this relatively new, well not new to the people who have experienced it, but to anyone defining it. You're welcome, You're it's definitely not a new thing. Have patients in their seventies that I'm treating that say, thank God, somebody finally put a name to this thing. This is not a new thing. It's

just kind a new name. One thing that is challenging is if you go to your doctor and you say I think I have ms aphonia and need help, very often the doctor won't know what that is. When you call the audiologist, or when you call the psychologist or the occupational therapist, you don't have to use the word miss aphonia. You can say I have problems with being triggered by certain things sounds, and when I am I get really overwhelmed and I can't function, and I have

this really kind of intense over sensitivity to it. I need help. Can you help me? So? In other words, the advice I'm giving to the listeners is describe what the experiences. When you make that phone call or type that email, you don't have to use the label. You'll get a response. You'll get a response from the clinic. They'll they'll schedule you. Whereas if you if you call them and say I have miss aphonia, they might say, what, we don't have expertise in that I felt this way

with anxiety. Sometimes it can work to my disadvantage to say that word to someone because they think they know what I'm saying. And you kind of go the wrong way instead of describing the feelings and the sensations. And that's great advice, I think for all things, but especially this word. They might not even know that they do know what it is, they can exactly. Well, thank you again for being with us, and I know you've helped a lot of people today, so thanks again. It's my pleasure, Jen,

thanks for doing this work. It's really great to be here with you and to try to help get the word out. Thank you for this. I hope you learned a lot from my chat with Dr Zachary Rosenthal and hopefully for anyone listening who has miss aphonia, this gave you a little bit of hope and some more information

to go on. Zack mentioned some resources to me that he wanted me to mention on this podcast, so obviously, if you would like more information on ms aphonia, you can visit his website at ms aphonia dot duke dot e d U and the direct link is right in the show notes on whatever podcast app you are listening to this on. And Zach says that ms aphonia Education dot com is a really good resource. The International missi Phonia Research Network has a website you can Google that

to find it. But again I will put all of these links in the show notes. And as always I'm about to do the takeaways for this episode. If you would like to read the takeaways and just have them, you can go to my website Jen Kirkman dot com and then once they're click anxiety bites. But again, just like everything else, say it with me. It's linked in the show notes. So to sum up, here are some

takeaways from this week's episode. As of today, ms aphonia can be thought of as a multi disciplinary problem that probably sits in the intersection of psychiatry, neurology, audiology, and occupational therapy. Ms Aphonia does not appear to be specifically related to anyone's psychiatric or mental health condition. Someone with ms aphonia isn't choosing to be controlling or manipulative. This is a condition that they don't choose. Miss Aphonia can

be extremely debilitating and dominate every day lives. People can experience missoponia on a spectrum of severity. Simply disliking, for example, the sounds that people on an airplane make coughing, eating loudly is different than actually suffering from miss aphonia. The difference between having a disorder, for example, miss aphonia, and experiencing some of the phenomenon in any given disorder. Example, disliking the sounds of someone chewing gum is a matter

of two things, severity and impairment. Someone with miss aphonia experiences significant intense nervous system arousal when faced with a trigger. When massoponia is triggered, it's happening outside of the body of the sufferer, and it's uncontrollable. It's unconscious as well. It's a reaction to the stimuli around them. As one of Dr Rosenthal's patients explained, being triggered by sounds can feel as intense as quote a grizzly bear standing there.

Someone experiencing ms aphonia can have a very strong reaction of danger or threat in the nervous system. A trigger for miss aphonia is not usually just a singular thing. It's not a reaction to somebody who just clears their throat once, for example. It's more of a repetitive cue

that causes a trigger. Automatic unconscious parts of our brain that are triggered when there's something really unpleasant, or called bottom up conscious regulation, parts of our brain where we think about what could happen, and worry about what might happen is called top down. Someone with ms aphonia maybe anticipating a trigger, almost like they've got an antenna and they are sensing or scanning a room. They're scanning the

world around them. They're waiting, anticipating, not necessarily by choice. This attention that's disruptively focused on potential triggers is what can make misoponia debilitating. It's tough to outthink a trigger for miss aphonia. When someone is experiencing it, there's a regular fight or flight response, and usually they have the urge to flee, escape, avoid, or discontinue the stimulation. Miss Aphonia is not a thing that people really know about.

It was first named in two thousand two, and the first research study was only conducted about nine years ago in But although it's newly defined, there have always been people who suffer from miss aphonia. What can be difficult for people with miss aphonia is that they live in shame, silence, and secrecy. Often someone with this has been told their whole life that it's their problem. Other people who don't suffer this can be unaware they cannot understand miss aphonia.

They can be dismissive, critical, or judgmental, which can cause the sufferer to internalize the message that something is wrong with them. Scientific research is expensive and can take awhile. Miss Aphonia is still being understood and researched, But what is known right now is that it can't fit neatly into any category. Miss Aphonia is not an anxiety disorder, it's not an obsessive compulsive disorder. It's not a phobia. One of the ways to treat patients with miss aphonia

is to figure out their primary triggering sources. It's also important to take into consideration how tired or stress to someone is when they're triggered, if they've taken their medication, or if they're feeling chronic pain. All of those things can make a trigger and worse, if you're in any kind of relationship with someone who has miss aphonia, you will most likely end up triggering them at some point. The goal is to be understanding, validating, compassionate, and thoughtful.

If you do trigger them, own up to it, and if you don't own up to it, own that and look to move on. It requires understanding that this is a real thing. There can be biological and environmental sources that contribute to miss aphonia, and these things most likely influence one another. There are ways to treat miss aphonia, whether it's by working on helping people to regulate their attention, emotion, behavior, communication, and their body, or looking at other disciplinary angles like

audiology or occupational therapy. Treatment comes from a focus of coping and clinical psychology. People can absolutely recover from miss aphonia, and they can learn new ways to cope, and they can cope more effectively with their triggers so that they're less impaired and are able to work and to relate

and to function. The challenge of getting help from miss aphonia is that an audiologist, psychologist, or occupational therapist might say that they don't have expertise in missophonia, But if the patient doesn't use that word and instead just says that they're triggered by certain sounds, and when they're triggered, they're really overwhelmed and they can't function, they have a

really intense over sensitivity. Usually a professional at that point will say, oh, okay, yeah, well I can help you with that when it's explained that way, but they may not be too familiar with the term miss aphonia and Lastly, Dr Zachary Rosenthal created the Duke Center from MS aphonia and emotion regulation. You know what I'm gonna say. That link is in the show notes. If you would like to send an email to this podcast, Anxiety Bites Weekly at gmail dot com. I have a few more listener

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