If you have the time and would like to help further Misophonia and sound sensitivity research, consider participating in an online survey being conducted by psychology researchers in Melbourne, Australia.
The survey takes about 20-30 minutes and asks questions about how you process sounds. You also might be asked to listen to certain sounds and rate how you feel about them.
Here’s a link to the survey: http://hearing.sollysweb.com/
Click here for more information about the researchers and the study.
It has been several months since I started working on an experimental treatment to tackle my Misophonia. The treatment has been hit-and-miss, with my reaction to some trigger noises diminishing. For other trigger noises, the treatment has not been effective so far.
Last fall, I was contacted by behavioral scientist Tom Dozier, who offered me the treatment free of charge, assuming I would chronicle my journey on this blog. I told him I would be giving an honest account of how the treatment worked.
Dozier developed a smart phone app called the Trigger Tamer that allows patients to record the sounds that trigger them, and then expose themselves to just a few seconds of the sound at a time, as to only trigger themselves a small amount. After experiencing the minor Misophonia reaction, they work to immediately calm themselves.
The premise of the app is that the reaction people with Misophonia have is actually an unwanted reflex that has somehow been programmed in a primal part of our brain, the medulla oblongata. This treatment method also assumes that people with Misophonia experience a physical reaction to trigger sounds in addition to the emotional response. This physical response could be a jerking of the shoulders, a tightening of the chest, a clenching of other muscles, or any other physical reaction.
For the Trigger Tamer app to work effectively, a patient must identify their physical responses to Misophonia sounds, then find a way to extinguish those physical responses in a matter of a couple of seconds. If the physical response is a tightening of shoulder muscles, for example, then the patient could have someone massage their shoulders immediately after they are triggered by a noise, or they could use muscle relaxation techniques to relax their shoulders by themselves.
That’s how this treatment works. A patient listens to a snippet of their trigger sound on the app until they experience a mild amount of that physical trigger, then they immediately perform the act (such as muscle relaxation) that will wipe out that physical reaction.This process retrains the brain to stop reacting negatively to trigger sounds, according to Dozier.
Dozier has estimated that patients using this method for about 30 minutes a day can see their triggers diminish in a matter of weeks. The app isn’t a huge investment (about $40), but Dozier prefers patients using the app schedule regular check-in appointments with him.
Did this treatment work for me? Yes and no.
One of the biggest challenges for me is that my physical reaction to sounds is sexual arousal, and not in a good way. Hearing a trigger sound doesn’t make me want to have sex; it makes me feel sexually aroused and angry at the same time. It’s very confusing and upsetting.
I had to experiment a lot to find something that could make my sexual arousal go away quickly. I tried making myself sad, muscle tightening and muscle relaxation, but those didn’t work. I tried having a partner tickle me aggressively. That seemed to work, but it wasn’t very practical, or enjoyable. I tried yoga stretches, and some of them worked, particularly stretching out my hips (half-lotus and head-of-knee poses).
A couple times a week, I began using hip stretches while listening to the Trigger Tamer.
The first trigger sound I tried to tackle was the sound of a spoon clanking on a bowl. I listened to one particular sound and over time, I stopped triggering to that one specific sound of a spoon hitting a bowl. But, it only helped me slightly out in the real world. I think that’s because there are several different types of clanking and scraping noises that trigger me when I hear someone eat out of a bowl, and for this treatment to truly work, I would have to record each of those many sounds and work with them one at a time with the app.
I gave up on that for a while and decided to take on the sound of typing, which was really starting to eat at me while I was at work. I had serious concerns that I would have to quit my job because I’m surrounded at work by people typing constantly. This is a trigger I developed just in the past year or two, and I wanted to nip it in the bud. I worked with a 10-second recording of a person typing aggressively. At first I listened to a second or two at a time, but eventually was able to listen to the whole 10 seconds without triggering. It wasn’t long before I could listen to the recording for a half hour without triggering.
The typing sounds at work are now manageable. I can go days and weeks without being triggered, and if the Misophonia reaction begins to crop up again, I do a quick stretch at my desk to eliminate the trigger feeling as fast as I can. That seems to send my Misophonia reaction into dormancy for a while longer.
During the past few months, I have developed two new triggers: the sound of snoring, and feeling my partner breathing when we are lying in bed. This means we no longer sleep in the same bed, and I have to sleep in another room while listening to pink noise, because my partner’s snoring sounds reverberate throughout our home.
I’ve been working with my partner to have him tickle me while we are lying down to fight the reaction I have to feeling my partner breathe. That remains a work in progress.
I recorded the snoring sounds and am now able to listen to the recording without being triggered, but for some reason that hasn’t made it any easier for me when I hear the actual sounds of my partner snoring. Dozier suggested that when I use the Trigger Tamer I try to make the recording seem more real, by lying down while listening to the recording and really imagining my partner snoring. That should trigger me more and allow me to fight that Misophonia reaction more effectively.
It’s a time-consuming treatment and can be difficult to stick to, especially if you need another person to help you wipe out your trigger responses while using the Trigger Tamer app.
Since first writing about this treatment, I’ve heard a couple of concerns from readers of this blog. They include:
Don’t you know exposure therapy doesn’t work?
Yes, traditional exposure therapy hasn’t worked to combat my Misophonia. In this case, though, trigger taming “exposes” patients to a mild trigger and allows them to kill a small physical reaction to the trigger before they become too distressed. With traditional exposure therapy, the goal is to distress the patient and allow them to get used to those feelings of distress until their anxiety eventually diminishes and they get used to the object they are being exposed to. That type of traditional exposure therapy has not been shown to help Misophonia patients whatsoever, and can actually be a very horrible experience.
There’s no good evidence that the Misophonia treatments out there work, and we should be cautious of so-called experts trying to sell us things to fight Misophonia.
I completely agree with this statement. Because Misophonia research is still in its infancy, it’s impossible to have reliable, hard data the prove which treatments work. It’s also possible that something could work for one Misophonia sufferer but not another. We’re still very much in an experimental phase, and everyone should proceed with caution.
The bottom line: Only you can decide when trying an experimental treatment for your Misophonia is worth it.
The second-ever Misophonia Association conference will be in Orlando, Florida this year, and organizers say it will likely take place October 10-11.
I can’t attend this year, but I had the privilege of going to the first-ever Misophonia Association conference last year in Portland. I found it extremely beneficial to learn from the specialists of varying backgrounds about what they think might be causing Misophonia and how they are helping patients find relief.
Of course, nobody has all the answers about Misophonia, and there is no silver-bullet cure. But it’s nice to see the commitment of some specialists who are trying to help Misophonia patients. It also was a very supportive environment, and it was pretty amazing to meet and talk to other people with the condition.
Here are the details about this year’s conference, including a registration page. I believe the registration fee is $125 per person, but that the conference is free for ages 16 and younger.
Also, here’s the post I wrote about last year’s conference. It looks like this year’s lineup of speakers will be similar to those who spoke last year.
A while back, I was listening to a National Public Radio program, and the hosts began talking about a condition called Autonomous Sensory Meridian Response (or ASMR). As I listened, some things started to sound oddly familiar.
People with ASMR respond differently than the average person when they hear certain sounds, such as the sounds of soft voices (think Bob Ross), pages turning in a book, the clicking of a pen, or silverware clanking. The condition develops in mid-childhood, and many with ASMR report being anxious people.
But people with ASMR don’t respond to trigger sounds with anger or disgust. People with ASMR seek out trigger sounds because those sounds give them a pleasurable, calming feeling in the brain.
The woman on the radio program described it as almost going into a trance, with her head tingling and “aglow” in a way that worked to calm her anxiety. She sought out television programs and online videos of the sounds she enjoyed, and said her obsession with certain triggers had an addiction-like quality.
Here’s the definition of ASMR, courtesy of Wikipedia: “Autonomous sensory meridian response (ASMR) is a neologism for a perceptual phenomenon characterized as a distinct, pleasurable tingling sensation in the head, scalp, back, or peripheral regions of the body in response to visual, auditory, tactile, olfactory, and/or cognitive stimuli.”
As I listened to the radio program, some of the sounds that triggered a pleasurable response in ASMR people were triggering feelings of disgust in me. Here’s the radio program I heard, but be warned, there are some sounds in the program that may trigger a Misophonia reaction.
I also recently received a comment on this blog from someone who seems to have elements of Misophonia and ASMR. In some cases, trigger noises are upsetting; in other cases they are pleasurable. This has me wondering if people with Misophonia and ASMR have very similar sensory conditions, but we just process trigger noises differently and therefore have different outcomes.
There are apparently studies being done about ASMR, including a small study at Dartmouth College. You can read updates about that study here. I’m hoping the study of ASMR can benefit Misophonia research, assuming the two conditions share similar sensory wiring abnormalities.
Besides the one commenter I heard from, does anyone else out there experience both Misophonia and ASMR responses?
I attended the first-ever conference for people with Misophonia about a week ago in Portland, Ore., and I’m still digesting a lot of what I learned. Here’s a brief list of some of the takeaways from the conference:
Misophonia.com has a letter to physicians that you can print out and bring with you to the doctor. That could help a lot and save you some of the grief of having to explain your condition every time you see a new doctor. There’s also a letter you can use as a template for talking about misophonia with family and friends.
It is helpful for people with misophonia to make their home environment as inviting as possible. Flood the rooms in your home with sounds that you enjoy, which will help mask your triggers. You could play music or run a fan or a white noise generator, for example.
Family members living under the same roof could benefit from writing a contract with their family member who has misophonia. For example, a parent could write in the contract that they will try to stop making certain trigger noises around their child (no gum chewing in the car), and that it is OK for their child to get up from the table during dinner. The child could agree in the contract to refrain from using abusive language toward the source of a trigger, and to be up front when a sound is triggering him or her.
Misophonia trigger sounds are not something a person can get used to through typical exposure methods. In fact, there is some evidence to suggest that trying to endure trigger noises can make the misophonia worse and lead to new triggers.
Ear plugs can make misophonia worse. They cause your ears to work harder at trying to hear the sounds around you, and when the ear plugs are taken out, your hearing could be even stronger than before. This can lead to noticing more soft sounds and developing new triggers. Playing white noise or music through headphones or ear buds is seen as a better alternative because it floods the ear with sounds to digest rather than leaving the ear in search of sounds.
Are you a medical researcher? Help! People with misophonia and their families are desperate for someone to study the brains of people with misophonia. A functional MRI would be most useful to us at this point, because we’d like to know what parts of our brains are firing when we experience a trigger. Blood tests also would help determine whether the condition is genetic. There is plenty of anecdotal information to suggest that it could be.
People with misophonia tend to also be highly sensitive people. People with this personality trait tend to pick up on subtleties more easily and can easily become overwhelmed by events around them. Here’s a test you can take to determine whether you have the highly sensitive personality trait. People with misophonia also tend to have some obsessive-compulsive tendencies, but not necessarily have OCD.
The American Psychiatric Associations’ fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (called the MSD-5) does not include a listing for misophonia, unfortunately. However, some misophonia patients are starting to use the ICD-9-CM diagnosis code 388.42 for medical reimbursement claims. It’s the same code used for a similar audiological condition called hyperacusis.
Misophonia is currently considered an “orphan disorder,” meaning there are fewer than 200,000 identified cases of misophonia. That could certainly change as more people come forward to seek help for the condition.
People with misophonia find that their reactions to trigger sounds are worse when they happen to be stressed out, tired, hungry or hormonal. Reducing life stresses can help make things easier for people with misophonia, but it won’t eliminate misophonia. It’s also helpful to try to think positively about the person making the noise that is triggering you, though it won’t make your misophonia stop.
An audiologist working for many years with misophonia patients said her patients tend to be intelligent people who were good students in school. Those attending the conference last month in Portland seemed to reflect that trend. They were articulate and many had advanced degrees and successful careers. At the same time, many of them had left those successful careers because their work environment had become unbearable.
I found that final point particularly troubling because it suggests that there are qualified members of the workforce in our society who are not able to use their talents and give back to their communities because of this disorder. Finding a solution for misophonia and making sure workplaces are willing to accommodate people with this condition could go a long way, and not just for those who have misophonia.
The speakers at the conference were all video recorded. From what I could gather, the videos will be made available soon, and the Misophonia Association may charge money for the videos to raise funds for the association. Watch this website for more information.
I’m heading off in a new direction when it comes to seeking help for my misophonia, and I have no idea whether it will work.
I was recently contacted by a behavioral scientist who offered to try an experimental treatment on me, free of charge. Since I’ll try almost anything to get rid of my misophonia (that I can afford), I accepted the offer.
The behavioral scientist’s name is Tom Dozier, and here’s a link to his website for more information. Basically, his treatment focuses on the reflexes made in our medulla oblongata — Dozier calls it our “Lizard Brain” — which is the lower part of the brain stem. It controls basic human reflexes, such as blinking when you’re about to get hit in the face.
In one study on reflexes, for example, babies were exposed often to the smell of vanilla while they were in a calm state. Then, when they were crying, those same babies were exposed to the vanilla smell again, and it calmed them, because their brains had been trained to associate that smell with a calm state. Another more famous example is the Pavlov experiment. The scientist in that study rang a bell every time his dog was about to be fed, and after a while, just ringing the bell when no food was present made the dog salivate. The dog’s reflex had been retrained.
How does all of this apply to misophonia? Dozier’s theory is that misophonia happens when our reflexes are retrained in a negative way. Maybe you had high anxiety as a child, and while you were experiencing that stress, you were at the dinner table with your family, exposed to the sounds of them chomping or slurping down their meals. After a while, just hearing your family’s chewing noises began to trigger those feelings of stress and anxiety, and whatever physical reflex your body goes through when you hear the trigger. That could be a tensing of the shoulders, or a tightening of the chest muscles, for example.
In Dozier’s treatment, he tackles the physical reflexes his patients experience while hearing a trigger. He tries to interrupt the physical reflex right when it happens, to retrain that reflex. He exposes the patient to an audio snippet of a trigger noise, trying to trigger the patient only slightly. If that patient experiences a tensing of the shoulders, for example, then a family member could be on hand to immediately massage the shoulders after the trigger noise. Then, the “lizard brain” will stop associating the noise with anxiety, rage or fear and start associating the noise with the feelings one has during the shoulder massage, in theory.
According to Dozier, his experimental treatment has been successful with about 50 to 75 percent of his patients, but he’s only worked with about a dozen people. The treatment takes a while, because he works with one trigger sound at a time. I’m starting with the sound of a metal spoon hitting a ceramic bowl, but I have many, many more triggers than that.
So far, I’ve only had two sessions. Personally, I think I will have a more difficult time with this treatment method because my reflex response to misophonia triggers are mostly emotional. The only physical reflex I have when I experience a trigger sound is unwanted sexual arousal. I would have to figure out how to stop that reflex quickly in its tracks in order for the treatment to work.
For full disclosure, I think one of the reasons Dozier offered me free treatment is because he hopes I blog about my experiences here. I told him I probably would, and we have an understanding that I will be truthful and write whatever I want about my experience.
Dozier has a webinar you can watch for more information about his treatment. It takes a while to download, and you also have to download a software component to be able to view the webinar. If you don’t want to download the webinar on Dozier’s website, here is another webinar I found on youtube, but this one looks like it was done before Dozier started working with many of his misophonia patients.
Other treatment options
While we’re on the topic of treatments, a lot has been developing in our misophonia community. Please check out the Misophonia UK website’s list of treatments and coping strategies that have been helpful to some misophonia patients.
Also, there’s been quite a bit of buzz about a practice called neurofeedback, which some people say they are using with great success. I was interested in trying this technique, but honestly, it’s too expensive for me. I’ll probably wait to see whether more people find it useful before I decide to go down that path. But, if you’re interested, here’s a link to one practitioner’s website. From what I’ve read, she’s been using neurofeedback to treat several misophonia patients.
Audiologists and other specialists who have been working with misophonia patients will be on hand to talk about the condition Oct. 25-26 at the First Congregational United Church in downtown Portland, Ore. As far as I know, it’s the first-ever misophonia conference, and it sounds like a variety of treatment ideas will be discussed.
To learn more about the event or how to register, go to the Misophonia Association’s website (click here).
The conference costs $125 for both days if you register in advance, and $150 at the door (there are discounts for kids and significant others). The organizers also hope to record at least some of the speaking panels so video can be available to people who could not attend the conference.
I’m trying to adjust my schedule so I can make it to the conference. I’d love to be able to put what I learn there on this blog.
I finally got set up with a therapist to talk about some coping strategies for misophonia. This therapist does not specialize in misophonia; in fact she hadn’t even heard about it until I stepped into her office on the morning of my appointment.
She gave me the same puzzled look my primary care doctor had given me, but being a therapist, she was respectful and willing to learn more. I gave her a list of articles to read up on the topic, the New York Times article in particular (one reason why coverage of misophonia is so important).
During our appointment, she explained cognitive behavioral therapy. Essentially, it’s the idea that situations outside of our control can impact our thoughts and our emotions and ultimately our behaviors. But if we try to recognize negative thoughts and interrupt them, then we can replace bad thoughts with good ones and start to get a grip on our emotions and behaviors that are typically caused by an unpleasant situation. Please understand, this type of therapy is commonly used for anxiety and depression, and it’s use to treat misophonia is experimental only. As far as I know, it hasn’t cured a single person. It’s strictly a way to make it a little bit easier to cope.
At the end of that initial appointment, my therapist gave me an assignment: write down my thoughts every time I hear a trigger sound. What am I actually thinking? I had never done this before, and I honestly didn’t want to face the reality of it because my thoughts had become so awful. I came up with a system of texting myself my thoughts while I was at work, and recording them one a piece of paper once I got home.
I found brief relief initially. A coworker would pop in a piece of gum for the fifth time that day, and I would become irate, but then I would have to stop. And pay attention to my thoughts. It interrupted my anger for a bit, maybe a few seconds. It didn’t make the problem go away, and eventually my physiological responses to the sound would, nonetheless, cause a wave of panic, disgust and contempt to rise up from within. In the earplugs would go. Or I’d make a trip to the bathroom to give myself a break from the sound.
My thoughts that I recorded made me feel completely ashamed and disappointed with myself. The “C” word used toward a woman I find to be quite pleasant. Complete revulsion. Words like “gross,” “disgusting,” and “sick” would pop into my mind. Feelings of self pity: “Again?” “Of course she’s going to eat that apple now, at the worst possible time.” “Why is this happening to me?!”
I returned several weeks later to the therapist (my health care provider is overloaded with mental health patients, so therapy appointments are hard to come by). I shared my recorded thoughts with her. She said we would need to arm me with an arsenal of strategies I can use every time I encounter a trigger noise. Escaping is working for me with the ear plugs, as well as getting up to leave a situation when I can. Are there ways I could distract myself when I hear a trigger?
If I need to sit at my desk and talk on the phone and a trigger noise begins, are there ways I can adjust to make things at least a little better? Maybe put an ear plug in the ear I’m not using?
Another interesting suggestion the therapist had was to replace the negative thoughts I have in response to a trigger with a positive thought that I know to be true. For example, people use this cognitive behavioral technique if they have problems with road rage. Instead of blowing up when someone displays horrible driving techniques, which might be true, try to replace it with something like: “Everyone does the best they can.” Or: “This too shall pass.” The trick is that it has to be something that is true to you, and also positive.
When I get triggered at work, I’ve been trying to focus on the person and the traits I like about them rather than on the noise they are making. I try to think things like: “So-and-so is a nice person. He is not trying to hurt me. He doesn’t know any better.” I’ve also been trying to use: “This noise cannot harm me. I am not in danger. My body is functioning just fine and I am going to be OK.” I then try to take a mental inventory of the different parts of my body, noting that my arms are OK, my legs are not hurt, my torso is just fine, my head doesn’t hurt, etc.
The therapist also suggested I get familiar with relaxation techniques such as deep breathing and yoga, and do all the other basics such as make sure I’m eating right and getting enough sleep.
Have any of these methods truly helped so far? Not really. It helps a tiny bit in the sense that I feel more empowered against my misophonia. I have named the enemy, and I have some allies who want to help me fight it. But in another sense I remain powerless. I cannot think my way out of getting triggered. I can attempt to rationalize with the fight or flight instinct that has taken control of my brain.
Perhaps these are coping skills that need to be strengthened over time, so I’ll keep at them to see if things get any better, and I’ll try to do a better job of keeping everyone updated. If you’ve come across a good coping strategy, please share it in the comments section below.
My next appointment is in a little more than a week with a new therapist, because unfortunately my other therapist got transferred somewhere else. I imagine that meeting won’t be too productive, because I’ll be explaining misophonia again to someone new.
A few weeks have passed since the misophonia segment aired on 20/20, and I have been reflecting on the episode. Overall, I thought it was thorough and accurate, but I always think there could be room for improvement when it comes to media coverage of this condition. Because we don’t get much coverage, it’s crucial for the pieces done on misophonia to be particularly informative and fair. If you missed the episode, here’s the link to view it.
* No-trigger version: How thoughtful was it that the producers made a version that eliminated all of that torturous background sounds of people chewing? I watched the “trigger” version live with my partner, and I had to yell out from time to time because there were so man horrible sounds. Now I can go back and watch it again online with less trouble.
* Johnson interview: They interviewed audiologist Marsha Johnson and pieced out some good quotes from her about the condition. Johnson is doing a great service to us by articulating the facts about misophonia in a respectful and honest way.
WHAT COULD IMPROVE:
*Visual triggers: The segment makes no mention of visual triggers that exist with misophonia. Yes, we seem to all have certain sounds as triggers, but many of us are just as bothered by repetitive visuals, such as foot tapping, nail biting, or watching someone eat. (At least those are my experiences with visual triggers, anyway.)
* Generalizations about violence: The 20/20 segment opened with, in my opinion, an extreme case of misophonia. The father of this teenage girl with misophonia played a recording of her blood curdling screams following a trigger. The mother of this girl said she feared for her life and had been physically abused by her daughter. Then, a voice comes on to preview an upcoming part of the show by saying viewers should expect to see “the violence of a trigger caught on tape.”
Yes, misophonia does trigger a “fight or flight” response, and fighting is violence. Yes, this teenage girl used as an example has misophonia and has been violent. I just wish 20/20 could have pointed out that not every person with misophonia is violent. Many of us choose the “flight” route, and many of us might have angry thoughts but are still able to refrain from acting upon them. I would hate for the general public to get the impression that all people with this condition should be considered a danger to themselves and others.
What were your thoughts on the 20/20 segment? Is my critique fair?