Category Archives: resources

Useful information on Misophonia, from the Portland conference

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.

Functional MRI

Functional MRI

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.

Starting an experimental misophonia treatment that works with the body’s reflexes

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.

Plugging your ears during a loud noise can be a reflex for some people. So can blinking if a person thinks they are about to be struck in the face.

Plugging your ears during a loud noise can be a reflex for some people. So can blinking if a person thinks they are about to be struck 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.

Misophonia experts on hand at Portland conference Oct. 25-26

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.

Therapy for misophonia will be a work in progress

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.

This is the typical CBT model. It’s not a perfect match for misophonia, because hearing a trigger seems to cause an emotion (fight or flight) before there’s time to have any thought about the situation. But the hope is that it can still be used to address the negative thoughts that crop up during a trigger situation.

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.

Cognitive behavioral therapy, white noise generators used as defenses against misophonia

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.

This resembles the in-ear white noise generator I saw during my appointment with a misophonia specialist.

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.

Taking the first steps to getting help

Today I made a big step toward getting help for my misophonia. I made an appointment for a consultation with a woman in Portland, Oregon, who specializes in audiology disorders, including tinnitus, hyperacusis and misoponia.

I left a message with the doctor on Friday and she called me while at work on Monday. I left my desk and took the call, making sure I went some place where nobody could hear what I was talking about. She told me that the consultation costs $75. I said yes.

During the consultation, she said she will determine whether I have misophonia (no question there!) and then talk about the services she provides. I’m not trying to get my hopes up because I know that there is no known cure for this condition. But if I can learn any sort of coping strategies that might help me manage my misophonia, I’d say it’s worth $75 to learn about them.

I had always thought about eventually seeking help for misophonia, but something I learned about my family motivated me to actually do it. I recently found out that an older relative of mine committed suicide and referenced his struggle with tinnitus — or ringing in the ears — in his suicide note. That really frightened me, and I want to make sure I never get to such a dark place.

My appointment is not for a few weeks, but I will post about how the appointment went after I go.

Speaking of follow up posts, I wrote a post a while back saying I would test out musicians earplugs and how they work with blocking trigger noises. I got them in the mail and brought them to work to test them out. I particularly needed ear plugs at my office because of a woman who constantly chewed and popped her gum.

I have relied on disposable soft earplugs for some time, but it is hard to know when someone at work is trying to get my attention. And when I take an earplug out in order to talk to them, they either gave me weird looks or ask me why I was wearing them. The theory I wanted to test with musician earplugs was whether they would block the trigger sounds while letting me clearly hear when a person was speaking to me.

The short answer: No. They won’t.

It’s true that the musicians earplugs I tried allowed me to hear people talking with clarity, but they also let trigger noises through. I could hear every pop of the gum being chewed by my coworker. So, musicians earplugs work for drummers or guitarists who want to protect their ears while still hearing their music. But they don’t adequately block out misophonia triggers — at least not for me.

I did purchase the least expensive musicians earplugs, though. There are some that are custom made for the ear and are hundreds of dollars. But if the concept is the same in the expensive ear plugs, then I assume they would not be worth the investment.

New site locates medical providers who can help with misophonia

Although the current consensus is that misophonia has no known cure, that hasn’t kept people from trying to stop the disorder in its tracks or from trying to find a way to develop coping strategies for those with the condition. As a person with misophonia, I applaud this effort — and now a new website has launched to help people like me find a medical provider in their area.

The site, titled “Misophonia 4s Provider Network USA,” allows those living in the United States to give their contact information to professionals who can help with the symptoms of misophonia. I’ve taken a screen shot of the contact form, where I was asked to provide my first and last name, address, phone number and email. I’ve offered myself up as a guinea pig and submitted my information through the website. I’ll report back on how it turns out. I think somebody from my region will contact me soon about resources in my area.

misophonia-provider.com

According to the site, which was launched this summer, it offers “seven regional centers in the USA that specialize in assessing and managing those who suffer from misophonia/4S symptoms. All ages accepted. Sorry, USA only for now.”

If you don’t want to enter your contact information, there is a page on the website that simply lists the regional offices. Some of the professionals are audiologoists, experts specializing in tinnitus (a condition similar to misophonia), as well as ear, nose and throat doctors.

The creators of the site acknowledge recent national news coverage about misophonia and add that there are steps one can take to get a better handle on their misophonia. As someone who has never received help for this often infuriating disorder, I think finally seeking help will be the next step in my journey. Stay tuned.

Help misophonia research, take this survey

This is just a quick post for anyone with misophonia who wants to help contribute to the research effort about this condition. Click here. It looks like the survey will be used to find any commonalities between those who have misophonia and to create data to show that this condition does indeed affect many people in a very distinct way.

I just took the survey and it lasted about 10 minutes. You also can sign up at the end of the survey for an email alert for when the findings are released. I’m not sure how long the survey will be available.

The New York Times writes article about misophonia

Great news! One of the largest and most reputable newspapers in the world, the New York Times, wrote a story yesterday about misophonia. I’m posting the photo used with the column because I like the way the art expresses this condition.

I recently wrote about why awareness of misophonia is so important to people who have the condition. So, how does the article do when it comes to explaining misophonia?

Here's the art that accompanied the New York Times article on misophonia.

The article is respectful and makes the correct distinctions between misophonia and other conditions, such as hyperacusis. The article also provides some resources for support groups, including:

All in all, a great story. I hope that future articles about this condition might focus on solutions. Clearly there is no cure-all for misophonia, but there are people studying and trying to figure it out. There are also some therapies and medications that are currently being experimented with.

I appreciated the stories shared in the article by people who have misophonia. It is interesting to see how other people cope after I’ve had the disorder for so long and have developed my own unique coping mechanisms. One woman said she has a headache when asking people to quiet down. Another shuts the door to her office at work. I’m an earplug addict, although there are some times at work when I need to be listening to others, and I come into contact with a trigger noise. Just today I was sitting in on a training at work and a man walked up behind me to listen in on the lecture. He was eating an apple. I had to excuse myself to use the restroom, and I missed a large chunk of the training.

I’ve told one coworker — who also happens to be a friend of mine — about my condition, but I don’t think she realizes how it affects me in the workplace. She is constantly trying to talk to me while she is eating or chewing gum, and she complains about not being able to get my attention because I’m always wearing earplugs.

What is misophonia? And why blog about it?

Literally, misophonia means the hatred of sounds. But for an unknown percentage of the population, it is a diagnosis for an auditory condition that causes a person to feel strong, negative emotions in response to a specific group of everyday sounds.

 

Crunching, lip smacking, licking, slurping — the sounds people typically  make while eating or drinking.

Sniffling.

Muffled music or a television in nearby room.

Silverware clinking against bowls or plates.

The crinkling of plastic bags.

Heavy breathing.

Sometimes, the condition also includes a strong, negative reaction to the person seeing a certain motion, such as the tapping of a foot or a person biting their fingernails. These sound and sight triggers create such a reaction within the mind of the person who has misophonia, that the person may feel the need to flee from the sound, suffer quietly with their anxiety about the sound, cope by using earplugs or listening to music in headphones, or even lash out at the source of the sound (think “fight or flight” when it comes to misophonia).

There is no cure for this disorder, and it does not seem to be recognized much by the medical community. But I know all to well that this condition is real. I have misophonia. This blog space will serve two purposes. First, it will provide a first-person account of life with this disorder in the hopes of raising awareness about misophonia. Second, it will provide resources for people who have misophonia and their loved ones.

Many blog posts are to come. In the meantime, please familiarize yourself with this condition by visiting the following websites.

The UK’s site about misophonia

A short documentary about misophonia

The facebook group for misophonia

This blog will remain anonymous.