Life With Misophonia, with Michael Tollefsrud | EDB 226

 

Self-advocate Michael Tollefsrud shares his history with misophonia.

(16 minutes) Michael A. Tollefsrud is a 25-year-old graduate of North Carolina Central university with Master’s Degree in General Psychology. Having suffered with Misophonia for years, Michael made it the focal point of his master’s thesis “Obsessed with Sound: An Investigation into Misophonia And Its Relation To Memory”. Currently looking for work in research, Michael plans to pursue a PhD to contribute to Misophonia research. He is also a Different Brains intern!

For more about Michael: linkedin.com/in/michael-a-tollefsrud

 

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FULL TRANSCRIPTION


DR HACKIE REITMAN (HR):

Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. today. Very lucky to have with us: Michael Tollefsrud, who’s one of the world’s leading me cell phone iya self advocates. And if you’re like me, you didn’t know what misophonia was, until recently. Michael, welcome.

 

MICHAEL TOLLEFSRUD (MT):

Oh, thanks for having me on and for hyping me up a little bit there.

 

HR:

Well, I’ll tell you what, you’re very inspirational. You know, I was rereading one of the articles you’ve written in the past for different brains. And I love the way you took us inside, what it’s like to have misophonia. Now, why don’t you first of all, give a proper introduction to yourself, because I messed it up. And then after you do that, we’ll have you introduce us to misophonia.

 

MT:

All right. Well, I’m Michael Tollefsrud. I’m a recent graduate from North Carolina Central University just got my master’s in general psychology in May, a perfect time to be trying to enter the job market, obviously. As for misophonia, it’s kind of hard to what’s funny is there isn’t, at the moment, one definition for it. Because it hasn’t been centralized or classified yet. But it’s typically described as a condition where people have very negative emotional responses to specific sounds, and most commonly, it’s the sounds of people eating.

 

HR:

And would you say that its mostly the sounds that come from a human body?

 

MT:

Yes. Typically, it’s all and more specifically, it’s typically all oral sounds. So eating, breathing, coughing, sniffling, stuff like that is usually the types of sounds that trigger people.

 

HR:

Now, when I first got exposed to this and interviewing Jennifer, Joe Brown, who has misophonia I, and then reading about it, because I knew nothing about it. And it’s not that uncommon, by the way. But what got me was not only that, if you have misophonia, you’re so hyper sensitive to these body sounds from others. But also, it kind of goes straight to your amygdala and makes you want to lash out, doesn’t it?

 

MT:

Yeah, it does actually trigger the fight or flight response. I’m blanking on the name of the actual study. But I remember reading a study that used eg other methods and actually showed the physiological responses of fight or flight in response to triggers.

 

HR:

Yeah, and some of those fancy scans do And nowadays, though, you can see it go from where things are being considered logically to over there, where it’s just like, I think my ex wife had it, you know, because if I used to, like, burp or chew with my mouth open, she used to punch me, you know, so it was a matter of really irritating her because she was hypersensitive to it in retrospect, and then lashing out kind of a road rage kind of thing.

 

MT:

It that’s actually a pretty decent way to put how, at least to me, feels it is a bit over that road rage like a How dare you type of feeling to it?

 

HR:

Yeah. So when How old were you when you first discovered this?

 

MT:

Well, when I first found out it had a name, I was 18. It was my last semester of high school. I’d had symptoms for years, but I hadn’t heard of it like the name. So up until then, it was just my weird sound issue. And I just kind of googled it my symptoms, like, I don’t like the sounds of people eating. And then I found out well, what was found first was selective sound sensitivity syndrome, which is you may have heard of, it’s just another name for it. Or actually, it was the first name for it, then misophonia kind of became more popular, but they both describe the same thing. But yeah, so I was 18. And I discovered it by just googling.

 

HR:

Now, were you seen any professionals before that time, or were you seeing any health care people to say, like, maybe there’s something wrong with me or you just kind of feel them Little bit funky.

 

MT:

Well, it’s funny, you mentioned that I actually was seeing professionals, I was seeing a psychiatrist when I was a child for severe OCD, and ADHD. So I was actually already seen someone before the symptoms really started. But since most people don’t know about it, she didn’t have much more advice about dealing with it other than, like, trying exposure.

 

HR:

Did they give you any different kind of names or labels or diagnosis?

 

MT:

No, no, they didn’t know what to call it. She, he was, he just tried to give me coping mechanisms, but he definitely didn’t have any terms for

 

HR:

So as you did in our written article… Okay, many in our audience who are watching this. They never heard of me so phony before. And now you’re gonna take us through some specific examples, if you don’t mind of tell us what it’s like, take us in there with you.

 

MT:

All right, well, I guess the simplest way would be just to kind of do the same sort of tail that I did for the blog post. So being a student in high school, you sit down for class, and you get ready to try to learn, and then you just kind of hear a sound off to the side and you look at someone popping gum or chewing on something. And every time they make that sound, it just feels like a little slap in the face. And it’s just constantly dragging your attention away from what you’re trying to focus on. And then eventually, you get through the class, maybe you got maybe 30% of what the teacher said, but you can wing the rest of it. And then when you leave class, you go home, and then dinner time with the family. Depending on how supportive your family is, with misophonia. For a long time, we didn’t even have a name for it for me, but it kind of it makes things a little more tense, then family gatherings usually would be as you’re sitting there, and even though they’re not doing anything wrong, they’re annoying you and they’re annoying you for something they can’t help. And that kind of thought that I’m the one with the problem kind of cycles through and it sort of makes it even worse. The the Oh, it’s my issue, but then I’m also feeling this anger that shouldn’t really be there. It just kind of a positive feedback loop.

 

HR:

What’s it like if you go to a big party?

 

MT:

What’s funny about that is that it’s actually easier to be around triggers. If there’s like a lot of noise. Like, I don’t usually have problems in restaurants, or I’m not much of a partier. But at parties, when there’s a lot of background noise that sort of drowns it out, it’s pretty easy to free, easy to ignore, especially if you have earplugs, which I always have on me. It’s actually when it’s quiet places like in the kitchen or the living room with just a couple people where it’s actually a lot harder because there’s a lot less distractions for it.

 

HR:

Now you name some of the sounds that really bother you a lot.

 

MT:

For me, specifically, it’s smacking, like so chewing with your mouth open with like gum, that sort of smacking sound. Popping gum is like, I don’t know how but it’s at the top of the list, specifically popping gum. I don’t know why, but that one really gets me. And then crunchy foods like chips or celery or stuff like that. Those are like the top issues for me, personally, although the specific triggers vary from person to person.

 

HR:

What are the tools you use to deal with your misophonia?

 

MT:

Well I always have I might have mentioned earlier I carry around a thing of earplugs who don’t block it out, but they do dampen it. And so just that little having that little bit of control to help like smooth it out. And then especially when I sit at restaurants, if you dampen it enough, then it’s you can learn to sort of accept it and move through it. Um, besides that, it’s mainly just been all having those. That’s really my only tool. I know you like tools, but for me personally was earplugs although using I’ve heard some good success, meaning to try out using like those noise generators that they used to treat for tinnitus. To help drown out the sounds, but I haven’t tried that yet. So for me, it’s been earplugs. And I’ve also had some success, making things a little bit easier with mindfulness. I found that to be a little bit helpful mindfulness meditation, but your mileage will probably vary depending on…

 

HR:

Yeah, I’ve recently started doing mindfulness for anxiety. And it’s, to me, it’s great, because I used to think you had to do something for hours to go to a yoga place, they got these five to 10 minute apps, they just kind of reboot your computer, you know,

 

MT:

Yeah. headspace. Is that the one you use?

 

HR:

I use headspace and 10% happier. The two I like.

 

MT:

Headspace is my go to I don’t go a day without at least getting a 10 minute or so.

 

HR:

Yeah, I like it too. Like today, when I went for a walk in the fresh air. I specifically looked up a walking one, you know? So was was pretty good. Now, what about this gets a little tenuous, but what about after you hear the sound? And you kind of realize it’s going to my amygdala and I’m gonna freak out? Do you have like something you do right at that moment, as it’s to prevent it from going to your fight or flight? Or Not really?

 

MT:

No… Because the, the response is so quick. It’s so immediate. It’s actually one of the reasons why like, gradual exposure therapy, I think doesn’t work. Because you need to, like be able to graduate it. But with misophonia, it’s an instant response. By the time you can have that thought process of, Oh, this is what’s happening, you’re already experiencing the symptoms. So there isn’t really much you can do besides maybe like, Brace for impact.

 

HR:

Now you have decided to study and get degrees in and go into psychology. Why is that?

 

MT:

Psychology specifically– I found that, because I’ve always wanted to work in some sort of scientific field in a research capacity. But when I took a intro to psych class back in undergrad, I just loved it. I found it fascinating. The kinds of questions as I call it, It examines perception, emotion, how people treat each other, all of these sort of psychology questions cut to the like, really primal, and core of what it means to be a human just, and I find that really fascinating.

 

HR:

Is there a specific branch or sub sub specialty you’re thinking of or not really,

 

MT:

I’ve been leaning more towards cognitive or social with mainly towards it with narrowing the topic down. Beyond misophonia would be emotion and perception, specifically, is what I’ve been looking at.

 

HR:

What is one piece of advice you might have for somebody with misophonia as to how to deal with it?

 

MT:

Well, the best piece of advice, I think… Here’s a big question, actually, for the hypothetical. Do they know that misophonia is a thing? Or do they just think that they’re crazy, because if they haven’t heard of it, I can tell you from experience that finding out that it’s a thing other people have it. That in itself is a huge, like, vindication that makes a big release belief. But, uh, so assuming that they already know that misophonia exists, I think the best advice I could suggest would be to find some find a coping mechanism that works for you. And there’s a bunch of them, I tend to go with the, like I mentioned the earplugs. But I’ve also heard good things about using headphones with noise generators that you can control with, like an app on your phone. And so that way, it just sort of drowns out. it like being in a restaurant, you can still hear but it drowns out the nitty gritty of the trigger.

 

HR:

What is the role of any of therapy?

 

MT:

Therapy? Well, I’ve seen I’ve read mixed results for certain types of cognitive behavioral therapy and helping. But if I was to give it a role, I’d probably say that it’d be more of a role of helping someone Giving them support to help get through the issue in the sense that it’s a struggle, and they’re going to have to deal with it. And sometimes, you just need to vent and have someone tell you how to decompress and accept things, acceptance based therapies, I’ve also heard, help mindfulness, but, uh, in terms of what therapists could be doing right now, without any new research about the treatment methods that do work, it just be, you know, help them come to terms with their issue, stay positive, not dwell on it, because it can feel like it takes up the entire world. Because it basically is an issue. Most times you interact with people. And as you know, we’re very social creatures. So that is basically the world. But it isn’t the end. youth can very well you can very easily have a very happy social life, it just takes a little bit of finagling. And you also need to actually communicate with the people you care about nine times out of 10. They’ll accommodate because nice people will do that.

 

HR:

Well, Michael, it’s been such a pleasure to speak with you today. Thank you for joining us, and telling us all about misophonia for all of our audience here at different brains.

 

MT:

Thanks for having me on. I really appreciate the opportunity.