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Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 4, Episode 15. My name is Adeel Ahmad, and I have Misophonia. This is a special emergency episode just recorded a couple days ago with Merced Irfanian, one of the co-authors of the very recent paper, The Motor Basis for Misophonia, which was led by Dr. Sukhbinder Kumar over in the UK. Merced has been studying the neuroscience of misophonia for years and has many projects in the works to answer even more questions. We talk all about the most recent results of her work and others researching the neuroscience behind misophonia, misokinesia, and tactile sensitivities as well. She explains all this in a way that I think is very approachable to non-scientists. We also talk about the connection between psychology and neuroscience, comorbid conditions, the neuroscience of ASMR, and a lot more. We even get a peek at how she got into researching misophonia. Please check the show notes for links to how to follow and contact Merced. She's very approachable, and she's just interested in helping anyone suffering with this. On Twitter, she's MercedE82, and you can also just for her, and links will come up. Don't forget to follow this show on social media as well, at Misophonia Podcast on Instagram and Facebook, or just Misophonia Show on Twitter. You'll help reach more people if you also leave a quick rating wherever you're listening to this podcast. All right, I want to get right into this, my conversation with Merced Erfanian. Welcome, Merced. Dr. Erfanian, it's great to have you here on the show. Very much been looking forward to it. I know the listeners have as well.
Erfanian [1:44]: Thank you so much.
Adeel [1:46]: So I guess, yeah, we have a lot to cover, but maybe just very briefly, do you want to just give a little background of yourself?
Erfanian [1:54]: Yeah, sure. Well, I was trained as a clinical psychology and then I moved on to affective neuroscience and science, which focuses on mood and anxiety disorders. And finally, I ended up working on misophonia at University of Amsterdam because it was sort of connected with my area of expertise. um since misophonic suffers experience a lot of emotional distress that we sort of study in effective neuroscience and through misophonia i um sort of was hired by university college london to work on uh on a fully funded uh lesser project on sound escape indices
Adeel [2:49]: which studies sound perception in human in context of urban areas gotcha okay things like um planes flying overhead and whatnot and kind of general urban disturbances and annoyances
Erfanian [3:06]: Yeah, that is correct. What we do in Sound Escape Indices is to understand how acoustic environment affects on humans' behavior. And what I do within that project is to understand the the physiological and neurological underpinnings of sound perception. For example, what happens to our, to our autonomous nervous system when we're exposed to loud sounds and mechanical sounds or natural sounds. And autonomous nervous system is a system that activates when we are in danger.
Adeel [3:43]: Gotcha. Yeah. Very, that's. Definitely anyone with misophonia would recognize that. Do you want to now maybe, we want to get to the study, but do you want to talk about your maybe definition of misophonia itself? And as we lead into kind of some of the research you've done.
Erfanian [3:59]: Yeah, sure. This is not really my definition. This is a consensual definition that a bunch of experts from different disciplines and backgrounds set together and sort of came to an agreement that this is the best definition that we have. Misophonia is best characterized as a disorder that shows decreased tolerance to very, very specific sounds. So it is a disorder. It's not a condition, neither a syndrome. We have to recognize misophonia as a disorder. as a disorder however it's not officially classified in any reference i mean it's neither in in for example dsm a diagnostic and a statistical manual mental disorders or any reference book of for example audiology there are a number of trigger sounds that we have identified for people suffering from misophonia according to our study in 2017 the worst trigger sounds are lip smacking gum chewing and crunching however i have to say that misophonic sufferers have reported a wide range of triggers and they are not limited to only sounds but also They have reported to have visual and even tactile triggers. Visual triggers like seeing somebody that is moving the legs or for example blinking very fast or snapping fingers. And tactile triggers are like as if somebody just keeps tapping you on the back or touching your hand.
Adeel [5:48]: And for the visual triggers that we've talked about, misokinesia as the term a lot on the podcast, is that the correct term to use for those visual triggers?
Erfanian [5:57]: Yeah, misokinesia.
Adeel [5:58]: Gotcha. And would the tactile triggers be under the same term or does that have its own term?
Erfanian [6:05]: no um no there is no term for it as far as i know okay yeah so yeah mr kinesio also uh if i'm not mistaken was first prop uh proposed by aryan schroeder from the university of amsterdam but like i said it's way less frequent than sound triggers
Adeel [6:24]: Yeah, it seems to be something that actually, at least anecdotally, people seem to start off with the sound triggers, but then those visual triggers get added on sometime later in life.
Erfanian [6:38]: seem to develop later but yeah if i explain the findings of our recent study yeah it would give you best answer for for mr kinesio um and uh also we have found a number of negative emotions in people with misophonia that are anger disgust aggression fear and less frequently anxiety but we do not see that much of anxiety because fear and anxiety actually are the we call it distinguishable or a distinguishing diagnosis between phobia and misophonia, which are completely different thing. And we have a couple of studies that looked into the physiology of misophonia, that what happens in our autonomous nervous system or involuntary responses our body when we are exposed, suffers basically, are exposed to trigger sounds. um what we detected are very much similar to the responses that people show when they are very much scared or they are in faith of danger, like palpitations, sweating, and they feel blood rushes into their heads or they might, for example, feel that somebody is pushing them in the chest, they have a hard time breathing. uh there are two studies uh one has been done by sukhanda kumar in 2017 it was published and another one was published in 2013 by emirate edelstein and and entire team and they found for example people with misophonia show increased skin conductance response um when they are exposed to trigger sound and what does the skin conductance response do exactly or what does it indicate is the activity of our skin and opening the sweat glands that are underneath the skin. And this is the indication of the autonomic nervous system, like I said again. And it activates or over-activates when we are scared or we are in danger. And also Sukhanya Kumar looked at the the deactivation of heart rate and they found or heart and they found people with misophonia show increased heart response or heart rate in response to response to misophonic sounds there have been do you have any question
Adeel [9:35]: No, no, yeah, listening intently and, yeah, that kind of matches a lot of people's experiences.
Erfanian [9:43]: And the brain basis of misophonia, there have been like a bunch of studies, like four or five, that look into the brain of people suffering from misophonia. the first one was done in university of amsterdam which was not peer-reviewed but i would like to talk about it very briefly here they found people suffering from misophonia and showed activation of two different parts of the brain one of them is amygdala which is deep in the middle of the brain and it's um the emotional part of the Exactly, which is a very, very important of emotional brain or limbic system that is responsible for regulating fear and panic emotions. And also they found the overactivation of auditory cortex, which is responsible for regulation of or interpretation of auditory inputs. In the other study, 2017, by Sukhbinder Kumar, he also added to what the first study did. and they found not only auditory cortex but also there is another cortex like a little bit deep in the brain is over activated which is called insula and insula is responsible for emotion processing for saliency and i will explain what salience is and for interception, extraception and proprioception. And what is saliency? Saliency is basically, what this insula does is it is responsible for understanding the stimuli in the environment that stand out. For example, a loud sound that is way louder than the background sound.
Adeel [11:35]: So it's kind of like the part of the brain that looks for the signal amongst the noise maybe in your environment. You can say that.
Erfanian [11:44]: Yeah, you can say that. Or for example, if you're looking for a specific color and a specific number among all other numbers or a lot of other colors, that specific color, that number stands out and is different from the rest. So that part of the brain is responsible for detecting what stands out and is different from the rest.
Adeel [12:09]: Is it what's different from the rest or kind of what's more important than the rest? Or maybe...
Erfanian [12:16]: No, that's selective attention, what's different from the rest. And also like I said, insulin is responsible for interception and interception is awareness of your internal body changes. For example, sometimes we feel that the movement inside of our belly or for example heart rate or some some other changes in our abdomen area and people that have higher interception are more aware of these changes in their body and we found this part of the brain insula is over activated in misophonia and the other part that aryan schroeder and his colleagues found was cingulate cortex and cingulate cortex is also very very close to insular cortex and it is responsible for more or less the same function, and that was also over-activated in people with misophonia. And not only Sukhbindar Kumar and Aryan Shroder found insula was over-activated, but also they found insula was over-connected with a couple of other brain regions, like prefrontal cortex, hypothalamus, amygdala, and premotor cortex.
Adeel [13:38]: And so I guess this is kind of what led to Dr. Kumar and the team to maybe zone in on the motor cortex. It makes sense that all these other parts of the brain are more sensitive in folks with misophonia, but the counterintuitive part is this connection to the motor cortex.
Erfanian [14:03]: Yeah, exactly. It took us by surprise, to be honest. We used to think symphony is all about audition and it's all about, for example, the overactivation or overcommunication of auditory cortex with other parts of the brain. But this totally turned everything and now we know that it's not all about sound and it might have something to do with mirror system. But I would like to... explaining details what we found step-by-step in this study and what are its or their implications for hopefully future treatment strategies.
Adeel [14:44]: Yeah, that would be great. Yeah, and I wanted to talk a little bit about, maybe you'll mention mirror neurons, but when I first read the new study, I immediately started to Google mirror neurons and realized that there was kind of a history there going back to the 80s and And there was thinking that the mirror neurons would actually affect a lot of different things other than misophonia. So yeah, maybe you can talk a little bit about that, or at least in the context of the new study, that seems like an interesting concept that maybe a lot of people aren't unaware about.
Erfanian [15:14]: yeah of course so in our recent work uh we have observed that uh first of all we had two group of people misophonic versus control group and we found that misophonic suffers one um have over activated premotor cortex that controls and premature cortex controls the movement of our throat lips and face and all all facial activities that we have even when we swallow things. And the second thing that we found was not only the premotor cortex was over-activated, but also it was hyper-connected or hyper-communicative with auditory cortex. basically over communication happened when people were listening to trigger sounds. Also we found that the increased activation of pre-motor cortex was associated with the emotional distress of the disorder when people were confronted with sound triggers. And what does that mean? It means that the more emotional distress the sufferers were manifesting the more activated or over activated that part of the brain or aka pre-motor cortex was.
Adeel [16:45]: Okay, so the more they were reacting to the trigger, it seemed like it was kind of proportional to how overactive the premortal cortex was.
Erfanian [16:55]: Yeah, which makes sense. This is the difference between psychology and neuroscience. Neuroscience basically looks at those responses in the brain, and psychologists look at the behavior or magnitude of the behavior of people. So, yeah, like you said, they were proportionally connected or associated with each other. We also found that there was an increased connection between premotor cortex and insula, which I already explained what it is responsible for. When people with misophonia were at resting state, it means they were not really listening to any trigger sounds. And finally, we found the same abnormal pattern or hyperconnectivity between premotor cortex and visual cortex, which is in the back of our head, that can explain mesokinesia.
Adeel [17:49]: Right. Okay. Did anything you find kind of suggest why things start with misophonia generally, at least anecdotally, and then mesokinesia kind of gets layered on at some point later?
Erfanian [18:00]: Yeah, that's a good question, but we really need more research to understand when it happens and how it happens, because we know for sure that the misophonia onset is triggered by or a facial trigger or a facial sound. which has something which is related to mouth nose or facial activities but at some point it seems this trigger sounds sort of leaked into um non-aura facial activities because we know that there are a lot of um um human human unrelated i don't know if it's a right but non-human related sound yeah right like like pen clicking i don't know where when when um water tap drips for hours or, I don't know, ventilation and a lot of other environmental noise that people have reported, people with misophonia have reported. But I don't know when this happens. We know through which mechanism they learn or they sort of associate all these triggers to each other. And it's called associative learning. But we don't know when this happens.
Adeel [19:09]: Yeah, I was going to say the association is interesting because I was going to say with water dripping, even pen clicking, and people have literally said repetitive sounds bother them. And you can maybe make a case for the visual triggers can kind of be associated almost temporally to sound ones because after a while, your brain maybe gets used to the idea that you're going to get a sound trigger. If you get a sound trigger, there is a visual component attached to it. So it's almost linked in that way as well. I'm wondering if there's a part of the brain, and this could be, I'm sure this is future research, but I'm wondering if you guys maybe thought about whether, yeah. Or whether it's a part of the brain or maybe you have indication of something that can detect repetitive.
Erfanian [20:00]: We believe that everything happens in the brain, so we're going to be out of the brain. Yeah, but we don't know exactly which part of the brain is... Yeah, I can guess it's prefrontal cortex since it is responsible for high-level functioning like cognition that involves reasoning, decision-making, attention, and so on. But I cannot really answer this question for sure. We need more investigation in the future. Hopefully, we will know how this associated learning happens.
Adeel [20:38]: Right. Can you talk about that? You were saying that in an arrestive state, there was an overactivation between, I believe, the insula and the premotor cortex. I was just curious how you discovered that in people with misophonia and what that means.
Erfanian [20:57]: we just simply put them in well not simply but we put them in fmri and yeah we take lots of images from their brain why they are not listening to trigger science and we could we could understand that there are some structural connectivity because we have functional connectivity and structural connectivity that there was a structural connectivity between these two parts I'm not going to go through scientific jargons here, but I try to explain it the simplest possible that makes sense to everybody. Something else that I needed to say, what we know for sure about the triggers, no matter they are visual, auditory or tactile, that as you also mentioned implicitly, they are all repetitive and pattern-based. This is all we know about. about the triggers but my own project hopefully after Sound Escape Indices is to understand that how and why these sounds, what is also common between aurofacial sounds and non-aurofacial sounds by decomposing all these sounds and look at different acoustic properties of these sounds and see what they have in common.
Adeel [22:12]: Gotcha, interesting. So doing FFTs and kind of breaking down frequency components, maybe in harmonics and things like that and trying to... Absolutely, absolutely.
Erfanian [22:21]: Well, you know very well that there are so many acoustic properties that you can extract from a signal, auditory signal. And the more important ones are like loudness, as you said, frequency, and we call it pitch, means the perception of frequency and sharpness and roughness, fluctuation of strength, and a lot more. and yeah this is what i'm going to look at and also measure different responses like like the pupil diameter or possibly then the the brain oscillation and see how they are connected with those specific uh yeah parameters acoustic parameters
Adeel [23:00]: interesting yeah i have an audio engineering background so i'm just super interested in this that's great that's great yeah and uh and i'm sure you probably know like i think somebody in dr rosenthal's group is trying to put together a library of sounds that are triggers and and for potential okay yeah i figured that's awesome that's great so i'll be definitely following that um actually it brings me to one of my later questions is like uh um as you guys are doing this work is there how how can people help kind of put it bluntly i know that uh a lot of um richer people are able to make anonymous donations to funds are there ways that general people can um help out other as participants or any in any other way um
Erfanian [23:45]: That's a good question. Since you asked this question, I would like to give an honest answer. The majority of researchers that have worked on misophonia, like myself, have never made a cent from doing this research. And the reason why Misafoni is getting more money and getting more fund is because of Milken Institute through the Reem Foundation. And since 2018, they have started a project. that basically funds five to ten different projects per year that focus on misophonia and that's the only source of income that the potential source of income that researchers working on misophonia might have and that is all. And of course, donations are fantastic. It would support the research and it would support the researchers to go on. But I think the best way is to get in touch with researchers and participate in the studies.
Adeel [24:55]: Okay. Yeah. So I'll have definitely your contact info and maybe I'll try to just kind of post in general, like contact info for various groups, especially yours. And just for people to reach out, it seems like everyone I've contacted has been very responsive, including, you know, yourself generously and Dr. Kumar. And it's great to see that.
Erfanian [25:15]: Yeah. Thank you very much. I really appreciate. And also there is something that I would like to say. The thing is what we do, is to help people. Just simple. And that's the reason why I am very much available to all sorts of social medias and to basically answering people and raising awareness and teaching people what misophonia is. And this is not something that they only experience and they should not really suffer in silence. I also, since I do not work in the UK, as a clinician, I try to connect these people with with experts that i know that work with or or treat or try to help people to control their their emotional distress related to misophonia so whoever that is listening to this podcast please get in touch i'll do my best and we will do our best to connect them with people that can help
Adeel [26:16]: Yeah, that's, that's very important. And thank you for that. Yeah. And yeah, I can maybe one reason why it's great to see that you're reaching out to do that. Because as you know, a lot of us are we're just programmed, we've programmed ourselves to bottle up our emotions, because we are made to feel um whether externally or internally that um our feelings are stupid we shouldn't feel this way this is a normal this is probably we should just get over it um and so i think it's taking it's taking a little while to kind of get over some of that and i feel like hopefully starting to do that and and with folks like yourself who are trying to try to help i think it's um i think it's it's it's benefiting people and people are starting to finally get some help
Erfanian [26:58]: Yeah, because we know how debilitating misophonia can get, especially people that suffer from severe and extreme levels. It's terrible and it can affect all aspects of their life. That's why I strongly believe that the first step is to raise awareness, is to tell the family of sufferers and also relatives and people around them, friends. This is a real disorder. It should be recognized that people with misophonia should not be mocked. People with misophonia should not be told that, yeah, get over it and you are just silly. This is very stupid and it's not correct. This is not true. and it does not solve any problem. People should accept that this is a serious disorder and they respect the privacy of sufferers. For example, if they want to eat alone, if they want to stay in the bedroom for hours, if they do not want to be in contact with other people, it should be understandable.
Adeel [28:03]: Yeah, totally agree. One thing I wanted to, I know you probably have maybe some notes of things you want to cover, but before I forget, I wanted to, you know, you said you're connecting folks with clinicians. You're in a kind of a neuroscience background, and obviously there are therapists in the field. I'm just curious, like, what is the relation between neuroscience and psychology? You know, it's... I think a lot of people reading my research, maybe who have misophonia, think maybe I should just wait for the science to solve itself. Then there'll be some kind of a cure. But in the meantime, you know, folks need to need to get help. Like, how do you what's the line between? Are they related? And does one inform the other? Or are they some people might think that they're totally separate.
Erfanian [28:55]: that's very good question i was in a discussion this morning i was talking about the difference between psychology and neuroscience and i'm happy that you you asked psychology and neuroscience are the same thing they are basically two sides of the same coin uh but they did the way that they um reason and they understand the problems are different they they basically use different methodology and different approaches the approach of psychology is deduction and the approach of neurosciences induction but they always solve the same problem for example psychologists look at my behavior and understand whether or not i am emotionally distressed or for example i am under so much stress or i am scared or i'm panicking or i have any um any other effective effective problems and neuroscientists do not necessarily look at your behavior but they look at your brain directly and then based on the activity and what's happening in your brain they can provide a solution that they can provide an understanding that since these parts of the brain are activated or under activated or over activated it means that we can guess the person is behaving in in a certain way so so psychologists sort of complement each other they're not really different from each other right so you're looking more kind of objectively at the structure and the function of the brain the physical brain itself where a psychologist is uh it's specific to the person and their their behaviors and trying to trying to change the behavior exactly yeah exactly that's a good point psychology is more about subjective data and neuroscience is more about objective data but if you look at uh majority of universities you'll see that the department of psychology and neuroscience are together because they complement each other gotcha and in yours in your studies are you also uh
Adeel [31:03]: um taking getting getting information about the backup i'm assuming you're outside to some degree but the background of the participants because uh You know, there's a lot of people come on and they talk about how, for example, their specific trauma that they had growing up. And so a lot of question comes up is, is trauma something that triggers the condition or activates the condition of people at some age around, you know, late elementary school puberty? Or are there comorbid conditions? I'm curious if you're gathering that data as well as you're studying the brain of your participants.
Erfanian [31:40]: Yeah, that's a good question. It really depends on the question that we ask or the objective of this study. For example, in our study 2017, we asked all sorts of questions. For example, when they feel they were first triggered by the sound, or for example, if they have anybody in their family with the same symptoms, if they have history of psychiatric disorders if they have asmr or autonomous sensory meridian response that i'm pretty sure you're familiar with if they have anesthesia or for example how they feel when they are triggered or um what are the bodily changes and what are the coping strategies and um and uh what is for example the first negative emotion that they show so we ask all sorts of questions but in in the study with uh we did this year by sukhanda kumara's team we did not ask these questions we just simply ask um whether or not the participant uh would like to uh go on with this study which is which is a very important part of the uh procedure of this study their gender and their age gotcha just basic questions and then you get ready yeah actually demographic questions right
Adeel [33:04]: One thing you mentioned actually was very interesting that has come up a lot is the family members, other family members that may be showing symptoms because, yeah, I've spoken to quite a few people who were like, you know, actually my mom or dad, now that I think back, yeah, you know, my mom or dad or my aunt. uh was definitely or it was you know it was definitely uh misphonic or was showing signs but um you know back in the 50s 60s sometimes it stuff was if if it's not talked about now back then it was definitely not talked about so it was harder to tell but um what do you have you thought about uh a potential um genetic or hereditary component to this
Erfanian [33:44]: um since there is no findings um right there were no studies back then yeah no i i can just uh speculate a little bit based on the subject data that we collected in one of our studies we collected data from uh 302 participants and we found yes they're like more than if i'm not mistaken 40 percent of our participants reported they have at least one family member with the same symptoms and they were mostly female family members so by their either for example in their moms or in their aunts or grandmothers from one of the sites
Adeel [34:26]: Interesting. Yeah, definitely worthy of further study there. The gender issue brings up another question. I don't know if you mentioned, I read about somewhere, but it seems like it's mainly... you know, women who are at least talking about it, it seems like, and that definitely shows in the skews and the numbers of guests I have on my podcast. But I'm wondering if, are you seeing any difference between genders or is it just women in general are more open about these mental health issues than men and that should change? Yeah.
Erfanian [35:02]: Yeah, that's the point. The thing is, there are also lots of studies in this regard that it seems women are more open to look for solution or look for professional help online and men are more closed and we can understand sort of why. Yeah, exactly. So when we collect data, especially online, we see that like two-thirds of, mostly two-thirds of the participants are female participants, but it does not necessarily indicate that it is higher or more prevalent among women.
Adeel [35:40]: Okay. I wanted to get into... yeah i guess i wanted to get into some uh maybe future research but i wanted to pause for a second and ask if you had anything else that you wanted to um expand on from from what we've already said so far maybe from your notes
Erfanian [35:57]: Yeah, I guess I missed just a small part, which is very important, and that's the key finding of this study. I guess that's important. Yeah. The last finding of this study, like I said, was the abnormal pattern or hyperactivity, or hyper, sorry, hyperconnectivity between premotor cortex. and visual cortex and uh premotor cortex there is a very very important system in premature cortex which is called mirror system or mirror neurons there are a lot of mirror neurons that the responsible or they are activated when we are looking at somebody doing something as if we are doing that specific activity so if you for example move our hand that part of the brain or those neurons are activated and we if we look at somebody moving his or her hand those neurons also are activated so this is what this is the the most important part of this this study and it has lots of implications for the future research and also for the potential therapeutic strategies
Adeel [37:13]: Right. So I think people can kind of relate to that, especially in terms of like when you yawn. Oh, when you see somebody yawn, it usually makes you yawn.
Erfanian [37:22]: That's a great example. Yeah.
Adeel [37:25]: For sound, though, let's say if my eyes are closed and I hear somebody chewing, I get, you know, I get set off. So does the mirror neurons get activated, not just visually, but also it seems like through the auditory?
Erfanian [37:38]: Yeah, exactly. Like you said, we also found over connection between rheumatoid cortex and auditory cortex. So it doesn't matter if you see it or you hear it, the mirror neurons or feel it. But about feeling, we have not have any findings, hopefully in the future. But what I can tell you is regarding the auditory triggers and visual triggers, which explains some of the coping strategies. uh that the misophonic people have uh like again back to our study 2070 because we collected lots of data that's why i can just uh keep going back to that paper uh we also asked paper we asked people what their uh coping strategies were and the most common coping strategy by misophonic people was mimicry and the over connection between premotor and the visual cortices can explain this why people mimic the sounds for example if you see somebody opening a bag of chips or for example chewing a gum you mimic that sound or you mimic that behavior sort of to calm down the over activation of abnormal over activation of the premotor cortex
Adeel [38:57]: yes and that's been one of the most interesting things is like all these people who've bottled up their condition for so long never spoken to anyone else about it all somehow have this similar coping mechanism of mimicking um and this is like a a great example i never thought about that like yawning yeah we we always say the yawning is contagious but that's not really the thing right right that's a great example yeah yeah yes um yeah that's that's this is the first study that definitely explained that was kind of an aha moment uh for me when i read the study was oh yes this explains maybe now we're on to something it seems like um yeah very interesting okay so yeah so where do we maybe where do we where do we go from here this is a lot of yeah like you said uh this uh these findings um start to point to different directions but uh what's next
Erfanian [39:52]: Well, to be honest, since I don't know if I will be involved with the NEXUS study, I just have a very, very brief information of what Dr. Kumar is going to do in his NEXUS study, which is funded by the Milken Institute and the Reem Foundation. Since we know that misophonia is not all about sounds, he is going to explore more cost-effective brain measurements like EEG or electrons holography to show the involvement of these mirror neurons in misophonia. and also what he's going to do is to see if tms or or transcranial magnetic stimulation can sort of help interrupt the the over activation of a mirror system and that way people will hopefully experience less distress and less anger and less negative emotions related to misophonia.
Adeel [41:05]: Is TMS used for any other treatments for other conditions? I'm just curious what else, kind of where that idea came from.
Erfanian [41:15]: TMS. Yes, TMS is widely used for a lot of disorders. One of those disorders is MDD or major depressive disorders. And it's been very, very successful. What it does is to over-activate and under-activate activity of neurons so if you um if you give uh like signals if you send signals with low frequency it's under activating neurons and it's with high frequency it over activates the neurons
Adeel [41:47]: Okay, interesting. And is that the kind of treatment that, I know the study hasn't even happened yet, I'm just curious, is it the kind of treatment that can be done, that has to be done in a clinic or can be done at home?
Erfanian [42:00]: At home, no, because the device is pretty expensive.
Adeel [42:03]: I can't get a kitchen magnet or anything and stick it to my head, okay.
Erfanian [42:07]: Well, no, it's not really sticking. It's a device that somebody would hold it above your head. Right. Or it changes the magnetic field around the brain. And it should be done by an expert and cannot be done by non-trained people.
Adeel [42:31]: And you say you may or may not be involved in some of these studies. Are you also looking at some other directions for misophonia? Or I'm curious what your research interests will be following this.
Erfanian [42:42]: Yeah, we have another study that is still under review, but I can just very shortly tell you what we did. And I don't know about my future plans, to be honest, because it's been something that I started in 2014 and I'm very, very interested. But like I said, it really depends. um funding i have to say because if i do not get funds for nature study uh future study we cannot really run any study right my plan for future is working on the the auditory triggers but it really depends on if we can get funding for it, and if not, it has to wait. And the other study that I did with collaboration of King's College University was that we asked a large number of people what the triggers were, and we divided the triggers in three different groups of artificial, environmental sounds, and also some neutral sounds. And we found that people or misophonic people that have high sensitivity to trigger sounds also tend to have high sensitivity to neutral and environmental triggers by using a complicated statistical modeling which was very interesting but it's still it's still under a b oh interesting okay so so people okay so people are they're also
Adeel [44:17]: more sensitive to neutral sounds as well. Is that similar to like hyperacusis? No, it's not.
Erfanian [44:25]: The big difference between hyperacusis and misophonia is that hyperacusis is triggered by the physical property of the sound which is intensity for example the loudness it seems that the tolerance threshold or LDL we call it the level of the loudness discomfort level in these people is pretty low if the loudness discomfort level in normal people is 75 decibel, and whatever that is louder than 75 decibel is unpleasant. It seems it's way lower in people with hyperacusis. But this is not really the same case in misophonia. Because sometimes, for example, they listen to super loud sound in their headphones in order to block the misophonic triggers.
Adeel [45:16]: Right, right. No, no, yeah, we all know that it can be the subtlest sound coming, like, from multiple rooms away that is triggering us.
Erfanian [45:23]: Exactly, muffled sounds, that's correct. And also, this is something that I would like to add, that hyperacusis and misophonia are not the same, but they have high comorbidity. We actually found that for some reason, we don't know exactly why, and if misophonic or misophonia basically would lead to development of psychiatric and non-psychiatric disorders or do psychiatric non-psychiatric disorders make sufferers more prone to develop misophonia we found that misophonia has high high comorbidity with ptsd or post-traumatic stress disorder with mddo or major depressive disorder with ocd or ocpd or obsessive compulsive personality disorder hyperacusis tinnitus and anorexia nervosa
Adeel [46:20]: Really? Okay. Yeah, that last one's interesting as well.
Erfanian [46:24]: Yeah, it makes sense because these people may stop eating in order to avoid the situation that this food is provided and they have to sit at the same table with other people and listen to excruciating triggers.
Adeel [46:40]: Yeah, very interesting. Yeah. I mean, the next question I was going to ask is, yeah, other than hyperacusis, what are some other comorbidities? Because that's a lot of times people come on the podcast and they have gone to therapists about these more, you know, quote unquote, popular conditions. And then, but they're, you know, usually or often their provider has no idea what Misfonia is. And so there's obviously some kind, there's obviously some, it seems to me that most people have, are comorbid with something else. And it's interesting to hear this list from you because it's like, it's almost like an episode list of the show here because it's, I don't mean to laugh at it.
Erfanian [47:20]: And it's not all, I have to say.
Adeel [47:21]: Yeah, right.
Erfanian [47:23]: Yeah, there are some cases studies also look into personality disorders and they found there are some personality disorders like borderline disorders and paranoid personality disorders. A disorder also have comorbidity with misophonia and not only that, but also there are some developmental disorders that have comorbidity with misophonia like autism.
Adeel [47:50]: I was going to ask about autism, yes, because people have asked about that.
Erfanian [47:54]: Yeah, you see this in people with ADHD, with kids with ADHD and kids with tick syndrome.
Adeel [48:02]: Tourette's?
Erfanian [48:03]: Tourette's, exactly, yeah.
Adeel [48:05]: Yeah, gotcha. Another great podcast, by the way, is the Tourette's Syndrome podcast, but I'll just plug that real quick. Yes, super interesting, especially about kids, because another thing I kind of try to encourage, and I keep meaning to just go to my kids' school district as well, is I would like to kind of... talk to counselors at school districts because I think a lot of stuff either, well, miscephonia either gets undiagnosed or misdiagnosed as something else. And it can have a huge impact on somebody's career and earning power and really everything. And I think it's important, like going back to the beginning to get the awareness out and hopefully have miscephonia taken as seriously and intervened early in somebody's life to help them.
Erfanian [48:51]: yeah that's why i really really appreciate the job that you guys do because you are the ones that basically make a bridge between researchers and and suffers and we have to like you said raise awareness as much as we can especially for kids because well adults are different adults can still cope with with the consequences that misophonia have, although it's incredibly difficult, I understand. But for kids, if they get damaged during childhood, it may not be reversible. And that is the main problem. Imagine a kid that is being bullied or being mocked at school by his or her peers all the time because of the misophonic reaction that he or she has.
Adeel [49:36]: Or in many cases, their family, their own family.
Erfanian [49:39]: Yeah, exactly.
Adeel [49:41]: Yeah, fast. So we're about an hour in. And I want to kind of give you a chance to kind of say anything else you want to share with the audience. I do want to ask one question I usually ask at the beginning is, do you have misophonia yourself or has this just been a research interest for you?
Erfanian [49:57]: No, I don't have misophonia.
Adeel [49:58]: Okay.
Erfanian [49:59]: No, I don't have misophonia. And the reason why I got into misophonia, that might sort of tickle your interest, is that I was working on a research paper about synesthesia. And I was looking for a collaborator in the University of Amsterdam. and this lady told me that why why about synesthesia there are a lot of research about synesthesia why not misophonia and that was uh basically the beginning of misophonia research and misophonia interested me that's why i don't have misophonia there is no there is no personal connection with this topic
Adeel [50:39]: Right. And doing the research and reading about triggers that hasn't, there's a lot of people, you know, maybe who have misophonia. If they hear about new triggers, they sometimes acquire it. So you've never had misophonia. You've never had any symptoms develop. It's just, it's not a thing for you at all.
Erfanian [51:01]: I have to make a confession.
Unknown Speaker [51:03]: Okay.
Erfanian [51:04]: Now that you're asking this, I have to tell you, since I started getting to know the concepts and what the disorder is, I have become way more aware of my acoustic environment, one, and I have become way more aware of the potential triggers that they suffer from. misophonic people suffer from like if I'm sitting in a train with somebody that keeps sniffing a sniffling sorry or or I don't know opens a bag of chips which is very common or I don't know they take an apple from their their bag and start biting it
Adeel [51:42]: yeah i sort of become hyper focused on it and say okay i'm happy that i'm not misophonic but right right interesting yeah it's interesting to hear somebody who's uh becomes focused but is not about to fly off the handle that's an interesting uh um yeah because yeah it's interesting to hear somebody somebody like yeah we'd love to be in that situation where we can just focus on it but then you know put it out of our mind or just not be so agitated, have our heart rate go up and our skin start to... Yeah, that doesn't happen.
Erfanian [52:14]: But it seems I've become very sympathetic towards people with misophonia that I'm really happy I'm not misophonic. Why are people behaving like this? What if a misophonic sufferer was sitting here? Right. But yeah, that's the internal dialogue that I have with myself. But I hope I'm not developing misophonia.
Adeel [52:38]: Have you any kind of interesting stories that you have heard from other misophones in terms of situations that they've been in where you've been like, wow, that's powerful?
Erfanian [52:49]: Not really, but what we found interesting in one of our studies was that half of the participants that have misophonia also had ASMR at the same time. And this is very weird. So it means that those misophonic sounds were annoyed and they hate certain sounds and they basically became euphoric by listening to other types of sounds.
Adeel [53:20]: Okay, so they, okay, so they were, so you're saying they were put off by certain sounds, but other similar sounds, they were, made them very happy, like made them very excited? Or by the same sounds.
Erfanian [53:37]: No, not the same sounds, obviously not. No, but different sounds. But ASMR, I would like to explain what it is. ASMR is basically when somebody listens to very specific sounds that are normally soft sounds.
Adeel [53:53]: Cranked up.
Erfanian [53:53]: And they... yeah they feel uh euphoria and also uh they feel a tingling sensation of back of their neck down to their spine and they really really enjoy listening to soft sounds there are actually lots of videos on youtube people providing for a summaries
Adeel [54:19]: Right, yeah. I mean, that's how we're used to, I guess a lot of people just think of it as ASMR is the name of the type of sound where it's, you know, people whispering or, yeah, but I'm interested to hear kind of like how it's turned up in studies in terms of, so you're saying that a lot of people with misophonia aversion to some sounds also get super excited by other sounds.
Erfanian [54:45]: Yeah, yeah. I can understand the underpinning underlying physiology because of the overactivation in different parts of the brain. You listen to something and another part of the brain is activated, which is also very similar to synesthesia. But what is interesting is what are those sounds that they enjoy and what are those sounds that they hate?
Adeel [55:12]: Yeah, this is interesting because I think what comes up in Facebook groups or conversations is like, you know, somebody says ASMR and then we automatically think that they're talking about listening to isolated loud versions of the sounds that tick us off. But I didn't realize that I might have some mystery sounds that are exciting me and maybe I should look for those or maybe it'll come up in a study or something. I can go through a menu.
Erfanian [55:38]: we might we might be able to look at this as a potential uh therapy that's right we make a few changes in those triggers and we turn them to as our triggers that would be great then i think a sufferer would sit on a table and i don't know eat with the family members and not only hate the sound or get annoyed by the sound or the fight and flight response sets sets off but also they enjoy the sound And this is something that I think future research should really, really focus on.
Adeel [56:13]: Yeah, that's interesting. I'm wondering if being a hardware and software engineer here, I'm wondering if I can eventually hack into some earbuds where I can not just do simple noise canceling, but do some frequency manipulation where replace the sounds or activate certain frequencies that you're going to find out in your next very well-funded study. So very, very interesting.
Erfanian [56:37]: That's a very good point. Yeah, exactly. Basically modulate the sounds and yeah, sends a complete, not a complete different, but it modulates it. The same trigger, but the modulated way. And they feel euphoric. And I think a lot of people would love that treatment.
Adeel [56:55]: Yeah. Well, let's maybe end on that positive, hopeful note for the future. But again, I do want to give you some time here. Is there anything else, final words you want to share with listeners?
Erfanian [57:10]: No, I think I said everything I had to say, unless I can remember. something that I overlooked or missed saying. I don't think so because I wrote all the outlines here and I think I covered everything.
Adeel [57:25]: Yeah, this is great. And I'll have your contact info and folks can maybe contact you or at least on social media. Hopefully that's so that we can all see. But yeah, again, this has been super helpful. I'm very appreciative that you came on and that you do the research. And I'm hopeful that you'll have a lot of opportunities to take this this research forward and we'll get to some very promising therapies.
Erfanian [57:53]: Yeah, I hope so too. And please wish us luck. And we are there for all sufferers. And I hope we will come with more effective therapeutic methods very soon.
Adeel [58:05]: Thank you again, Merced, so much. I know so many of us are hungry for not only therapies, but just any new information. And we appreciate the work you do. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. Music, as always, is by Moby. And until next week, wishing you peace and quiet.