Tag Archives: disorders

Melbourne researchers seek Misophonia participants for survey

If you have the time and would like to help further Misophonia and sound sensitivity research, consider participating in an online survey being conducted by psychology researchers in Melbourne, Australia.

The survey takes about 20-30 minutes and asks questions about how you process sounds. You also might be asked to listen to certain sounds and rate how you feel about them.

Here’s a link to the survey: http://hearing.sollysweb.com/

Click here for more information about the researchers and the study.

Experiments in ‘trigger taming’ and new Misophonia triggers

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.

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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.

snoring1During 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.

Next Misophonia conference is mid-October in Florida

The second-ever Misophonia Association conference will be in Orlando, Florida this year, and organizers say it will likely take place October 10-11.

I can’t attend this year, but I had the privilege of going to the first-ever Misophonia Association conference last year in Portland. I found it extremely beneficial to learn from the specialists of varying backgrounds about what they think might be causing Misophonia and how they are helping patients find relief.

Of course, nobody has all the answers about Misophonia, and there is no silver-bullet cure. But it’s nice to see the commitment of some specialists who are trying to help Misophonia patients. It also was a very supportive environment, and it was pretty amazing to meet and talk to other people with the condition.

Here are the details about this year’s conference, including a registration page. I believe the registration fee is $125 per person, but that the conference is free for ages 16 and younger.

Also, here’s the post I wrote about last year’s conference. It looks like this year’s lineup of speakers will be similar to those who spoke last year.

ASMR: the opposite of Misophonia?

A while back, I was listening to a National Public Radio program, and the hosts began talking about a condition called Autonomous Sensory Meridian Response (or ASMR). As I listened, some things started to sound oddly familiar.

People with ASMR respond differently than the average person when they hear certain sounds, such as the sounds of soft voices (think Bob Ross), pages turning in a book, the clicking of a pen, or silverware clanking. The condition develops in mid-childhood, and many with ASMR report being anxious people.

rsz_asmr

An example of an ASMR-triggering video on YouTube.

But people with ASMR don’t respond to trigger sounds with anger or disgust. People with ASMR seek out trigger sounds because those sounds give them a pleasurable, calming feeling in the brain.

The woman on the radio program described it as almost going into a trance, with her head tingling and “aglow” in a way that worked to calm her anxiety. She sought out television programs and online videos of the sounds she enjoyed, and said her obsession with certain triggers had an addiction-like quality.

Here’s the definition of ASMR, courtesy of Wikipedia: “Autonomous sensory meridian response (ASMR) is a neologism for a perceptual phenomenon characterized as a distinct, pleasurable tingling sensation in the head, scalp, back, or peripheral regions of the body in response to visual, auditory, tactile, olfactory, and/or cognitive stimuli.”

As I listened to the radio program, some of the sounds that triggered a pleasurable response in ASMR people were triggering feelings of disgust in me. Here’s the radio program I heard, but be warned, there are some sounds in the program that may trigger a Misophonia reaction.

I also recently received a comment on this blog from someone who seems to have elements of Misophonia and ASMR. In some cases, trigger noises are upsetting; in other cases they are pleasurable. This has me wondering if people with Misophonia and ASMR have very similar sensory conditions, but we just process trigger noises differently and therefore have different outcomes.

There are apparently studies being done about ASMR, including a small study at Dartmouth College. You can read updates about that study here. I’m hoping the study of ASMR can benefit Misophonia research, assuming the two conditions share similar sensory wiring abnormalities.

Besides the one commenter I heard from, does anyone else out there experience both Misophonia and ASMR responses?

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.

Not much success with CBT, triggers evolving again

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.

My misophonia triggers have changed over time — have yours?

One thing that has been particularly frustrating about my misophonia is that the trigger sounds I’ve had have increased and evolved over time, and I’ve even developed certain visual triggers. When I was in middle school, it seemed like the only thing that really triggered my condition was the sound of people smacking their lips when they ate. I was mostly bothered by people who didn’t chew with their mouths closed. If they ate something crunchy but their mouth was closed, that was fine.

This picture accompanied a story about misophonia published in The Sun in April.

I can’t remember the precise order, but eventually crunching bothered me, and gum popping, and then even the sound of a food packaging rustling. Perhaps because I associated that noise with the trigger noises of eating that would soon follow? Then there was nail biting, then anyone picking at their fingernails.

One day I sat by my mother in church and just began noticing her foot tapping as she had her legs crossed. I found this incredibly disturbing because I was feeling the same emotions I would feel from hearing a trigger noise. But this wasn’t a noise. At that point in my life, I did not know about the condition I had and that others had it. I was certain that I was losing my mind, and I worried about what could possibly be next for me.

I’ve since learned through research that many people with misophonia also have visual triggers like foot tapping or seeing people put their hands near their mouths. Others have reported particular trigger feelings such as having one’s chair kicked repeatedly in an auditorium. That last one is another trigger I have.

This year, breathing noises have started to bother me. Learning this was devastating. You can still have normal interactions with people if you’re bothered by chewing noises; people are not constantly eating. But they are constantly breathing. So far, the only person whose breathing upsets me from time to time is that of my partner. I started to notice it one night when I was trying to fall asleep next to him, and I panicked. It doesn’t bother me all the time, but I’m worried about what it could mean if my breathing trigger worsens.

Having sounds that trigger anger and anxiety seems bad enough, but when those triggers evolve or get worse, it makes it harder to cope. I’m curious: have others with misophonia found that their triggers evolve? Have the triggers gotten worse? Have they ever gotten better?

Hey, I can dream.

If you’re curious about the story that goes with the photo in this post, read that story here.

Ordering earplugs, the Today Show covers misophonia, and more

I ordered some musicians earplugs online yesterday in the hopes that they will be more effective than the foam earplugs I currently use at work. Someone suggested musician earplugs in the comment thread to the New York Times article earlier this week about misophonia.

Musicians earplugs

I should get the earplugs in the mail this week, and I’ll write a review of how they work. I’ve noticed my foam earplugs become less effective over time, and it’s not that hygienic to reuse them over and over again. My hope is that these new earplugs can be washed and reused, and that they will block out a lot of the soft sounds I hate while still allowing me to hear people clearly when they talk to me.

Also, I found a Misophonia Support tumblr (which has linked to my blog – thanks!) that informed me the Today Show did a segment on misophonia this week following the New York Times article. You can watch it here and I’ve also embedded the video below. Please be aware that a lot of the b-roll and natural sounds added to the segment are very triggering — a person eating an apple, a woman chewing gum, etc.

There is a great interview after the segment that filled me with hope to watch. The television journalist was treating the interviewee with misophonia in a respectful way, with belief and understanding. After receiving very little respect and understanding throughout my life in regards to my misophonia, this was an uplifting sight.

I was a little irked by the phrase “for people who think they have misophonia” when the journalist described the Internet support groups that exist. But all in all, I enjoyed the Today Show’s coverage of misophonia. Hopefully this week does not simply represent misophonia’s 15 minutes of fame, but instead is the beginning of a movement to help the medical community realize that this is a serious condition for many people.

Here’s the video on YouTube:

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Today at work, a colleague of mine who sits a few feet away was chomping down on some candy, so I instantly put in my earplugs. Another coworker came over to discuss something important with me. I had to remove my earplugs and talk to the woman who had come over. The entire time, I was agitated by the sounds going on around me, and I think that irritability came out while I was talking. I was short, I didn’t fully listen to what was being said to me and I tried to end the conversation as soon as possible. I was experiencing several emotions: intense anger at the person eating candy, worry and fear that I could not immediately escape the noise, and guilt that I was taking my anger out on an innocent bystander.

It’s just another example of how misophonia can make everyday human interactions difficult.

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.