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.
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 finally went to my misophonia appointment, where I received some good news, and some bad news. Let’s have the good news first. As I mentioned in a previous post, I wasn’t sure what to expect, and this was my first time seeking help for misophonia.
Although misophonia is currently incurable, I learned about cognitive behavioral therapy, as well as a new technology I wasn’t aware of for blocking trigger noises. Apparently, people with misophonia generally do about 12 visits with a therapist to go through the CBT, which helps them develop coping strategies for dealing with trigger sounds.
I could definitely use that. The bonus is that CBT can be done with any therapist, as long as they get educated about misophonia as they are working with you.
I have a doctor appointment with my primary care physician this week, and I plan to ask her to refer me to a good cognitive behavioral therapist so I can try to start that. I haven’t checked with my health insurer to see how much of that therapy would be covered, though. That might be an issue for me if it costs too much.
Then there’s the bad news. Sort of. I also learned about in-ear white noise generators. They were pretty amazing. They are like hearing aids, but instead of helping you hear, they help you NOT hear your trigger noises. They emit white noise into your ear, which helps drown out trigger sounds while giving your ears something constant to engage with. They also can be turned up and down with a small wheel that hangs over the back of your ears, and the device is nearly invisible.
The bad news is they cost $2,400. So… that won’t be happening for me any time soon. If someone with misophonia can afford this type of white noise generator, I’d be really curious to know how they work for you. Would they really drown out all the triggers — even loud pops made by chewing gum, or a metal spoon clanking against a ceramic bowl? I’m a bit skeptical.
I found some less expensive white noise generators online, but some appear to block the entire ear canal; they seem basically like an ear plug with a white noise speaker in them. Those seem cool, but the beauty of the pricey in-ear white noise generator is that it doesn’t block the entire ear canal — meaning you can still hear the noises you want to, such as a friend talking to you.
The closest alternative to the $2,400 model I found online costs around $400 for both ears. I am not sure whether they are near the same quality as the $2,400 model recommended by the misophonia specialist I saw.
Here are some other models I found online. I honestly have no idea how well they work, but I figured I pass the information along anyway.
I also had my hearing checked and discovered I have impeccable hearing, which is fairly common for people with misophonia, according to the specialist I saw. I was surprised by this because I’ve spent many years blasting music into my ears through headphones, and I’ve attended countless concerts that have left my ears ringing for hours. I never cared about damaging my ears, and I secretly hoped I would make myself slightly hard of hearing as a way to help me escape my condition. I guess that didn’t work.
I’ll post an update once I know about any cognitive behavioral therapy sessions I might have. Thanks for all of the comments on my posts. It’s been really great hearing other people’s experiences with misophonia.