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.
Since I last updated my blog several months ago, significant changes have occurred with my trigger noises, and I haven’t had much luck with cognitive behavioral therapy.
As I’ve written about in the past, I did not think CBT would every be a cure for misophonia, but I was willing to try it if it would help me cope with some of my negative feelings associated with hearing trigger sounds.
I tried the classic CBT techniques. I exposed myself to trigger noises and tried to calm myself with breathing or relaxation techniques to try to bring down my negative emotions while experiencing the trigger sound. I’ve used CBT with certain phobias, and had some pretty good success, but I didn’t have that same success when using it for misophonia. If someone else has, I’d love to hear about any particular techniques that were useful.
Relaxation and breathing techniques, however, did appear helpful at calming me down after I was able to escape the sound that was causing my negative emotions. Without using relaxation techniques, I can find that too much exposure to a trigger noise can send me into an awful mood for minutes after getting away from the sound. Does that happen to anyone else? It’s like I still hear the sound in my head even though the sound has stopped, and I dwell on it.
Relaxation techniques such as deep-belly breathing have helped me not dwell on those trigger noises after they’ve passed. That’s something at least.
Another challenge I faced while trying to use CBT was that I got passed around to two different therapists, and neither of them had heard of misophonia. It takes a while to educate a therapist about misophonia, and it was particularly frustrating to go through that process multiple times. I’m no longer seeing a therapist regularly.
The newest trigger that’s been impacting my life is the nose whistle. In particular, the whistle my partner’s nose makes while my partner is sleeping. I end up wearing earplugs to sleep every night, in addition to wearing them often while at work if a coworker is eating or chewing gum (which happens frequently). I get occasional ear pain and worry that wearing ear plugs all the time could lead to an ear infection, but it’s still the best way to keep myself sane and functioning.
That’s all the progress (or lack thereof) to report for now. Some visitors to the site asked for an update. As a side note, I wanted to say that I never expected this many people to find my blog and find value in it. I’m happy that this is one of the sites people go to when realizing they have misophonia, a condition so many others have. Thanks for reading, and please make sure to visit other resources to help you learn more about this condition we share.
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?
I recently went to my primary care doctor to get a referral to a cognitive behavioral therapist. We did the usual listen to my heart thing, blood pressure and temperature checks, etc. Then I got to the uncomfortable part of telling her that I need her to refer me to a therapist.
I’ve been to therapy before. Depression. Anxiety. Stuff like that. She asked me all about those and ruled out that I did not have depression at the moment, but I do have generalized anxiety. Then I started: “I, uh, also have this thing. This thing where I get really freaked out when I hear certain sounds. Like, I panic. It’s called misophonia?”
Me again: “It’s a real thing. There’s been a lot of news about it lately. And I know I’ve had it for years…”
At this point, my mind is racing and flooding with self doubt. I see through my doctor’s puzzled look that she is trying to decide whether I’m some sort of hypochondriac who thinks I have every disorder under the sun. The doctor asks a question: So, really loud noises hurt your ears?
No, it’s soft sounds, like the sound of people eating and chewing.
At this stage in the appointment, I think she just gives up and tells me how to get in touch with the therapist. She also tells me a bunch of stuff about anxiety that I already know.
My doctor belongs to a reputable health care network, and the company is really great about giving me printouts each time I go to the doctor. For example, the printed out information I got about anxiety went on for a couple of pages. A definition of anxiety, the symptoms and the many ways to deal with it.
Misophonia must not exist in their system. I’m not surprised, because the condition is not well known, but that didn’t make the situation any less frustrating. Once I saw press coverage on misophonia, I got my hopes up. I wanted information about this to explode overnight. It’s been in the news — can’t all doctors know about it already? I know, I know. I’m being completely unrealistic.
Change is slow, and it takes the commitment of many people. So, I think I’ll try to do my part and write a letter to my health care provider to see if they will consider researching misophonia and providing information about it to everyone who works for them.
I’m curious if anyone reading this has had a good experience talking about misophonia with a health care professional? Did I just get a dud of a doctor? Are others in the know? How have you approached talking to your doctor or therapist about misophonia, and how were you received?
I have my therapy appointment soon, and I’ll probably have to get my therapist in touch with the misophonia specialist I saw earlier, just to make sure we’re all on the same page. Once again, I’ll keep you posted…
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…