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.
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.
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.
NOTE: Much has changes since I wrote this post. Please see my blog’s home page for updates on what I’ve learned about this condition and the experimental treatments I’m trying.
I was poking around on a website that helps link misophonia sufferers to doctors who study the condition, and I found a document on the site that gives a thorough explanation of misophonia and its associated conditions, including phonophobia (fear of sounds).
The explanations were so good, I thought I would share them here. For more information, visit the 4S provider network website.
According to the document, this is how you pronounce the condition: mis-ō-fō′nē-ă (MISS OH PHONY UH)
Theory behind why it happens: “The auditory pathways may be functioning normally, but there is an abnormally strong reaction of the limbic (emotional system) and autonomic nervous system (body control system) to which the auditory system is intimately connected.”
Several definitions are listed for the disorder, including:
1. “Abnormally strong negative reactions of the autonomic and limbic systems to specific sounds resulting from enhanced functional connections between the auditory and limbic systems for these sounds. The auditory system works in a normal manner, without abnormally high activation. At the behavioral level, sounds specific for a given patient evoke strong negative reactions. This situation may cause general negative attitude to sound as well. When fear is dominant emotion (patient is afraid of sound) phonophobia occurs (phobia – fear). Phonophobia is a specific case of misophonia.”
2. “Selective sound sensitivity should be considered a type of misophonia, where soft sounds (typically eating and breathing sounds made by emotional attachment figures) are the focus, and the quality of those sounds causes annoyance and rage in the listener.”
3. “Pre-puberty seems to be a very common age of onset for the majority of those with misophonia, with lifetime persistence for most cases, and there appears to be a genetic component.”
4. “Misophonia can be considered abnormally strong connections between the autonomic and limbic resulting from enhanced connections between the auditory and limbic systems. These connections encompass both a high level of cortical level loop with involvement with cognition as well as subconscious connections, most probably involving the link between the medial geniculate body and the amygdale. The functions of these connections are governed by the principles of conditioned reflexes.”
The definitions are super technical, but I thought I would share them anyway in case someone wanted to understand just what was going on with the wiring in their heads. Looks like misophonia happens when the wires that affect your hearing get crossed with the wires that affect your emotions. It’s pretty fascinating, really. But I’d be much more fascinated if I didn’t have to deal with it every day of my life.
OK, so what about the current treatments?
According to the document, all of the following are being used to help treat (not cure) misophonia:
- Tinnitus retraining therapy has been tried using bilateral sound generators and directive counseling
- Earplugs are often prescribed to help block out intruding sounds
- Cognitive therapy
- Desensitization therapies including adversive exposure therapy, sensory integration auditory programs, and many others
- Counseling therapies
- Rotating cycles of pleasant sound therapy paired with unpleasant sounds
My appointment with a misophonia specialist is happening soon, so I’ll be sure to discuss these treatment options at that time. Stay tuned…