Misophonia is a complicated condition that can be very difficult to understand. This post is a reprint of an Interview by Lynne Malcolm of the show All in the Mind (Australian Broadcasting Corporation). I sincerely thank her for both her consideration to misophonia sufferers and for the time she took to understand the complexities of this newly termed disorder. I hope psychologists as well as those with misophonia will take the time to read this interview transcript.
Don’t you hate the screech of a chair being dragged across the floor, or the sound of fingernails scratching down a blackboard? For some people certain sounds not only annoy them, but send them into panic, anxiety, and even rage. This hyper-sensitivity to certain sounds is a recently discovered condition called misophonia, and it causes people to rearrange their lives. We discuss the effects of this condition and the research underway to try and make sense of it.
Lynne Malcolm: Hello, it's All in the Mind on RN, I'm Lynne Malcolm. Today, the extremely annoying world of misophonia, a hatred of sound.
We won't be using any of the common trigger sounds for misophonia in this program because of the distress they may cause some people.
I hate the sound of someone's nails scratching a blackboard and the screech of a chair leg being dragged across the floor, but I get over it quickly. For some people though, certain sounds trigger unbearable distress.
Melissa: The main sounds for me are eating sounds, so chewing, slurping, things like that. So walking into the studio to record this with you this afternoon I noticed a sign outside the studios saying 'no food or drink', and it made me really happy because it's one of my favourite signs to see because then I know I'm not going to have any triggers and I'm going to be safe inside.
But it can also be regular bodily sounds. So coughing, sniffing, things like that. Also a chair screeching. I explained it to my partner, that imagine the sound of fingernails down a chalkboard, it's what I hear when a chair screeches, but instead of that sound finishing it will go over and over in my head for the next few minutes, and that's all I can hear. So it's hard to process it or my brain keeps processing it and won't let it go.
Lynne Malcolm: That's Melissa. She was in her early teens when she noticed she had this extreme sensitivity to certain sounds. When she found out years later about a condition known as misophonia she felt sad, but also relieved because this was her experience. At least she wasn't alone.
Melissa describes her response to her trigger sounds:
Melissa: It's quite physical or physiological. I can feel my body tense and tighten or my muscles tighten. I'll feel my breath quickening, I'll be clutching my hands, it's all I can focus on, and that noise is spinning around in my head, and it's like nothing else is existing in that moment except for the noise that I'm hearing. I feel fight or flight response kick in, so a lot of adrenaline. I can feel angry at the person making the noise, even though it's just a normal thing for them obviously, they are trying to eat or sneeze. I need to usually get away from the situation because I can't handle it usually. So I've gotten off buses early because there has been someone on the bus triggering me, or I've left university lectures. The cinema is a really tough place to be. So I really only go if I absolutely love the movie or if I can afford Gold Class really because there is more space around me then.
Lynne Malcolm: So those bodily sounds, including popcorn I guess?
Melissa: Yes, so people eating popcorn, for me plastic rustling is a big one, so when they are opening a chip packet or lollies or things like that, that's a really big one for me as well. And then sometimes it can even be just visual. So if I'm blocking out the noise but I know it's happening and I can see it happening in the corner of my eye, that's enough for me to focus on it and get into that spiral in my head.
Lynne Malcolm: So it produces this sort of anxiety around the whole thing.
Melissa: Yes, because it's one of those invisible conditions but it affects your day-to-day life. Every day I'm triggered by something. Imagine having that fight or flight response every day, multiple times a day. It's really tiring and stressful.
Lynne Malcolm: Melissa.
In a recent online article, we posted some examples of sounds which can be annoying and asked people to rate how they felt about them. By far the most annoying was the sound of people eating with their mouths open. Here are some of the comments we got on Facebook:
Chewing with the mouth open, scraping knives and forks, and the hushed tones people use to lead people in meditation are triggers of major fits of rage for me. I found out about misophonia a few years ago and it explained everything.
What, you're kidding, it has a name? And it's not simply me being driven crazy? Get out of here!
Trust me, living with it can be absolutely horrid some days. Earplugs are my friends. It's not just eating and coughing sounds, I can't deal with vacuums, crying sounds, tapping, whiteboard markers, chalk on chalkboard, noisy areas. Some days are better than others.
I hate with a passion the sound of a bouncing ball. It drives me crazy.
Scraping at the bottom of a yoghurt tub for the last gram of yoghurt. It's yoghurt, not cocaine!
I cannot stand metal scraping on concrete. It's hard to even write about it, the thought is hideous. It makes me feel ill.
So once I grabbed a pencil and a piece of paper from my son and threw them out of the car window because I couldn't stand the sound of his drawing.
My teeth clench when I hear high heels clacking behind me. I have to stop walking and let them pass me. I also hate squeaky balloon noises.
Lynne Malcolm: Head to the All in the Mind webpage if you want to hear some of the trigger sounds and read more of your comments.
So what is misophonia?
Research is in its early stages. However, two scientists who are conscientiously turning their minds to the condition are Dr Zach Rosenthal, director of the Sensory Processing and Emotion Regulation program at Duke University, and Dr Jennifer Jo Brout who's founder of this program and the Misophonia International Research Network.
They explain what they know so far about misophonia.
Jennifer Jo Brout: I think the fairest way to describe it is as a neurophysiological disorder in which auditory stimuli and sometimes visual sets off a fight-flight reaction which then has accompanying emotional negativity. I would not call it a psychiatric disorder, but it certainly has psychiatric consequences.
Zach Rosenthal: Yes, I think it's important to keep in mind that this is a newly termed syndrome and that we need to be very careful not to jump to conclusions until the scientific evidence is there. We have ample clinical descriptions, some in the research literature that has been reported, both Jennifer and myself receive clinical descriptions from people suffering with this routinely. So there is certainly something there that's happening that's very real, very legitimate. The trick I think it is to recognise that this is something that is very legitimate, very real, and very difficult, yet at the same time is not clearly understood.
Lynne Malcolm: Zach Rosenthal, Associate Professor at Duke University.
Jennifer Jo Brout has experience of misophonia herself, and her daughter, one of triplets, also has the symptoms. She explains the types of sounds they're sensitive to.
Jennifer Jo Brout: At face value it looks a lot like it's bodily noises. For example, chewing was for her one of the worst sounds. For me, coughing, sneezing, throat clearing. However, it is really repetitive sounds, and this is just our experience, my daughter and I; pencil tapping, keyboards tapping, somebody tapping their fingers. And that repetition is what seems to drive the response.
Lynne Malcolm: And what is the response? How severe is it?
Jennifer Jo Brout: I think that varies across individuals. When you see it in a child and especially in a toddler who has very little control over their physiologic and affect regulation you can really see what a raw physiologically or neurologically based response this is. You can really see how it is a response that happens in your brain and body in a millisecond and of which you have very little cognitive control.
Lynne Malcolm: I wonder if you could describe when you first started realising that your daughter had it. I think she had quite a cute way of expressing it to you when she was about seven.
Jennifer Jo Brout: Well, she started out by literally crawling away from the dinner table. And we were there and so if you can visualise my triplets, two of them were not affected and were absolutely fine, and we were eating dinner, and I watched her just crawl away with her plate, and she was able to walk, but she still took her plate and on her knees just crawled out of the kitchen and simply sat herself in the hallway and continue to eat. And I thought, oh, that such a strange thing to do. But I guess since I was a mother of triplets I thought as long as she's eating I don't care. So I let her be. And this continued and continued, and I said to her, 'Why are you eating in the hallway?' And she couldn't really explain it. But as time went on she did get much more aggressively responding to her siblings while they were eating and to other noises. And eventually she said to me when she was…I don't know if it was five or seven…she said, 'Mommy, can you fix my brain?' And at that point my heart just broke. So I have set out to do that since then.
Lynne Malcolm: Jennifer Jo Brout.
So how much is known so far about what goes on in the brain when someone has misophonia?
Zach Rosenthal: So we are beginning to learn the very early glimpses at what might be happening. The studies looking at brain activity are telling us something very important to those who are suffering from misophonia, and that is that this is not something being made up, this is not something where people are simply being dramatic or erratic, this is actual brain responses in multiple different parts of the brain that are very real and are leading to very difficult downstream effects.
So the parts of the brain that you might expect would be studied and you might expect would be activated in response to these kinds of sounds, thus far those seem to be the types of areas of the brain that are in fact being activated. We are talking about a brain like everyone's brains that is primed to look for signals in their environment, detecting danger or threats. And there are various parts of the brain that do this. There are a number of interacting systems, the defensive motivational systems that are really there to help us survive.
So you can think about it as the freeze fight-flight systems, those systems get activated. And what happens is that as people are activated in their brain, very quickly what happens from that automatic physiological response is that naturally they put words to their experience, and the words that people put to their experience are really how they appraise that automatic really difficult-to-stop reaction.
So it gets called anger, it gets called rage, it gets called irritation or agitation. But what I would say is an important point is to highlight that this is an anger reaction but it's more than just simply an anger reaction. These are not people we should characterise as full of rage and hatred of others. These are people who are having automatic responses to stimuli in their environment, to sounds. In the moment that the stimuli are there, they can't control their instant reaction in their brain, and that instant reaction in some ways you can think about it as like when you have nails that scratch the chalkboard or when the utensils scrape across the plate. When that happens you get the chills in your brain and you can't really talk your way out of that in those moments, you have that experience, it doesn't feel good and it passes.
Now, of course in misophonia they don't get the chills response and it's not the same sounds but it's the same principle, that it's an instant, immediate, uncontrollable brain-driven response. And how the person makes sense of that and how others make sense of that, that becomes critically important in how people cope.
Lynne Malcolm: So where is the line between annoyance with sounds for average people and those with misophonia?
Zach Rosenthal: That's a great, great question, and it is one of those questions that needs to be addressed scientifically to be able to draw a line. But I think what you are pointing at that is very important is that we should think about this on a spectrum. So for some people there might be no sounds in the world that lead to any irritation or annoyance. For other people there might be some sounds in some contexts that lead to slight irritation, and so on and so forth, all the way across the spectrum to those people who are really suffering at the very tail end of the distribution, the very extreme cases.
It's quite surprising that you find that many, many people struggle with having these automatic misophonic-like reactions. That doesn't mean that all of them 'have' misophonia. We don't have a line of demarcation at this point that has been defined. What we have is a syndrome that can vary in severity. The one study that has looked at the incidence found a 20% rate. This was in a college sample in the United States, so it's hard to know how to generalise that and that's only one study. I think it's probably worthwhile that we do a lot more research to try to answer your question.
Zach Rosenthal: That's a great question. Again, we don't have any research that is looking longitudinally to try to understand what the course looks like. We could certainly speculate, we could certainly turn to other bodies of research to try to make some sense of your question. So a generalised sensory over-responsivity is possibly a vulnerability factor earlier in life. General anxiety or general sensitivity to one's anxiety or to cues in the environment that one perceives as dangerous, we could turn to a number of different possible risk factors, but I think the more important point is that we need to be doing research to study what these risk factors are.
Lynne Malcolm: There are a number of conditions that come up and it makes you wonder how related they are to things like autism where people are often very oversensitive to sounds and to touch, and perhaps obsessive compulsive disorder, anxiety. How much of the link do you think that there might be between these other conditions?
Zach Rosenthal: That's a fascinating question, it's one that in my research program we are studying right now. And one of the things that we are beginning to learn is that there is no apparent one-to-one association between misophonia and any one particular psychiatric disorder. In fact, again, I think I would be cautious to even frame it in the same context as psychiatric disorders. The temptation is there to draw a quick and premature conclusion about the association between misophonia and OCD, or misophonia and PTSD, or misophonia and any psychiatric disorder. But what I can tell you is that we really see misophonia symptoms showing up in a wide variety of patients with different psychiatric problems, and we see this in research and I see this clinically.
Lynne Malcolm: Zach Rosenthal from Duke University.
You're with All in the Mind on RN, I'm Lynne Malcolm. Today we're exploring the recently described condition of misophonia, or hatred of sound.
At Duke University, Jennifer Jo Brout and Zach Rosenthal are conducting research on misophonia and possible treatments.
Jennifer Jo Brout: I don't see one yet. I see only the ability to utilise coping skills, because if there was an effective treatment, believe me, I would have used it. And I've been looking for it for 20 years.
Zach Rosenthal: So a different way to think about this…
Jennifer Jo Brout: A more positive way.
Zach Rosenthal: …is what is the treatment for? So what is the 'it' that is being treated? And again, we have to do a better job through research and understanding what that is in order to be able to develop evidence based approaches to treat that 'it'. That said, if you conceptualise misophonia and the misophonic reaction as coming from this very primed-to-respond central nervous system, the brain, that is really ready to look for and identify and react to signals that don't actually signify a true danger or threat but the brain is processing them as though they do. If you adopt that type of a conceptualisation of this problem, then what you can do is you can start to turn to existing evidence based approaches. And the key is evidenced based approaches.
The other thing I would say is that because misophonia is inherently a multidisciplinary type of phenomenon, we think the best approach in terms of care is probably one that uses a multidisciplinary approach at a place where you have multiple different providers of care who work together. So that could be a neurologist, that could be an audiologist, it could be a psychologist, a psychiatrist, an occupational therapist, a music therapist, and I'm sure there are others. And the idea would be to try to set up an effective care pathway to implement really a lot of different types of coping skills.
So coping skills, broadly defined, could be a way to frame up the behavioural interventions and the cognitive interventions and the emotional and the interpersonal interventions, and there's a lot of contemporary cognitive behavioural therapies that have been shown to work to help people tolerate and accept automatic emotional responses, physiological responses, without having to try to change them, but instead changing the way in which they relate to them.
Lynne Malcolm: Zach Rosenthal.
Jennifer Jo Brout has learnt ways to cope with the distress she feels from hearing certain sounds.
Jennifer Jo Brout: I go into what I call overload, and this is discussed in general sensory over-responsivity. I go into overload where I can actually feel the fight-flight happening, I suppress the reactivity, and I then have a feeling of almost exhaustion, spaciness, disorientation, and I'm almost unable to process information. This happens to me the most in the supermarket. I actually won't go into a supermarket anymore, which to some people may sound crazy, but for me it's adaptive. Because for me going into a supermarket, I hear a lot of coughing, I hear a lot of sneezing, the wheels of the cart are rolling and rolling and rolling over and again, there's a lot of voices, there is a lot of repetitive stimuli, there is also the loudspeaker. It's a very alarming and alerting to me. And there's just too much auditory stimuli for me. So I don't go to supermarkets. But that is to me an adaptation that I've made in my life. I order my groceries. Some people can't do that. Coping skills are very individualised. So if I'm going to be out and about in the world, I have to make a balance between accommodation and assimilation, otherwise I can't have a life. Going to the supermarket is something that I could drop.
Lynne Malcolm: Jennifer Jo Brout.
Melissa has also developed ways to cope with her misophonia.
Melissa: Avoidance would be the biggest one, and it's so bad because I don't want to miss out on things, and it hurts your relationships. I avoid having meals with my family because of it. Usually your loved ones are your biggest triggers and that's definitely true in my case. Otherwise if I'm in the situation it's usually finding a way out. I always know where a door is. I always have some quick excuse to get something from another room or need to be somewhere, so as not to appear rude.
Lynne Malcolm: So it really must affect your relationships because that happens all the time.
Melissa: Yes, every day, all the time. I'm so lucky to have a really understanding partner. We've been together a few years now, so it has taken some time and some understanding but thankfully he's got a really open mind and I guess also living together he can see the daily struggle, how real it is, and he is fantastic in supporting me and trying to avoid triggering me.
Lynne Malcolm: Do you use earplugs or…?
Melissa: All the time, yes. One of my favourite closest possessions are my noise cancelling earphones and I take them everywhere. I usually sleep with earplugs as well because otherwise I can't sleep, I'm focusing on other noises or my partner is breathing, and he has to breathe! I've always got earphones on me, if I'm on public transport or in my open plan office working, I always have to make sure I can block out noise if I need to.
Lynne Malcolm: Does it help to say something to people that are making the noises?
Melissa: Yes, if you know that they are open to helping you. I think if people don't really understand the condition or don't believe in it they are more likely to repeat the trigger or make it worse, which isn't very nice, but it has happened. Or people just look at you and think you are mad and crazy, which you usually feel like you are, or they will just think you're being rude. So I've only really told a very select group of people in my life about this, that I know I can trust, because otherwise it's either the stigma of someone not understanding the condition or them just writing you off as being difficult.
Lynne Malcolm: So what about your appreciation of other sounds? Does it interfere into enjoyment of other sounds?
Melissa: I love music and going to gigs is one of my favourite things and when I feel most happy. So it definitely isn't every single sound, but I find it's usually repetitive sounds, bodily sounds…yes, it's hard to understand, because I do enjoy music.
Lynne Malcolm: Melissa, who's also found some help from several online support groups for misophonia.
Melissa: I'm just looking forward to more research happening and results coming out. I think back to decades ago when depression had such a stigma and was unknown or misunderstood, and I guess the way I have hope is to think that one day in the future this will just be another one of those mental conditions where they can understand it a bit more and it will make life a lot easier for people that are living with it day in day out, because it's something that we can't get away from.
Lynne Malcolm: Thanks to Melissa for sharing her experience of misophonia with All in the Mind today.
Meanwhile Zach Rosenthal and Jennifer Jo Brout continue their quest to find out more about the condition.
Zach Rosenthal: The type of research that needs to be done includes research that develops new assessment measures so that we have really the best possible evidence that we know what misophonia is. In addition we need to be doing epidemiological studies that look at the prevalence and incidence of misophonia worldwide. We need to understand gender differences, we need to look at course, prognosis, and what are some of the risk factors. That is a long-term proposition. So while those studies are occurring we also need to be doing studies that look in very, very precise and careful ways at targeted areas of the brain and at how systems in the brain are interacting with each other in patients with misophonia.
Jennifer Jo Brout: People should really have a lot of hope in terms of the fact that they can cope with this disorder. I'm not saying that everybody can have a perfect life, but there has been just so much press and so much misunderstanding I think from sufferers about this being something that you can't live with that it seems to be becoming just a larger and larger bubble. And while it is a very difficult condition to live with, it is not impossible and people can have productive and happy lives. And I think it's important that people know that.
Lynne Malcolm: Dr Jennifer Jo Brout, founder of the Sensory Processing and Emotion Regulation Program, and Dr Zach Rosenthal, director of the program and Associate Professor in the Departments of Psychiatry and Behavioural Sciences, and Psychology and Neuroscience at Duke University.
Head to the All in the Mind website for links and more information from today's episode. http://www.abc.net.au/radionational/programs/allinthemind/misophonia/7864484#transcript
Thanks to producer Diane Dean and sound engineer Jen Parsonage I'm Lynne Malcolm. It's great to have your company, catch you next time.