Tag Archives: disorder

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.

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.

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.

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.

Today’s number one enemy: candy in the office

Every day at work is a bit of a struggle for me, but today was especially bad. In the area where I sit, my coworkers have decided to place a candy bowl, to boost morale in the office I suppose. They have no idea, but it has the absolute opposite effect on me. This has been going on for quite some time, and I usually just wear earplugs. But there were a couple situations today that caused me to feel a rush of panic.

Let me start off by saying that the candy in today’s bowl were caramel apple pops. I agree that they are delicious, but they are perhaps one of the noisiest, triggering foods I have ever encountered. The sucking sound associated with any lollipop has always been bad for me. To make matters worse, these apple pops are coated in caramel, meaning they are very sticking and lead to constant lip smacking.

The ear plugs were working fine, as usual, but then the time came to attend another training. That meant I couldn’t wear earplugs. Several of the people in my training noticed the candy. My instructor commented that she would surely have to try one, but that she wouldn’t at the moment because she would need to speak during the training. I felt some relief knowing she would refrain from eating for the moment. About half way through the class, a few of my coworkers approached the bowl with eager smiles. I felt disgusted with them and resented their happiness. My instructor caved and grabbed one as well. As she talked, the din of lip smacking and sucking magnified in my mind.

I decided to flee to the restroom to control my emotions because I was on the verge of tears. I came back to the training after a few minutes, obligated to return to the cloud of horrible noises once again. I put in earplugs and tried to stay alert to whether someone was trying to talk to me. I’ve been doing this more lately — gauging from a coworker’s body language when they might be addressing me, then quickly removing one ear plug. Once the ear plugs were in, the class went more smoothly and I was able to partly follow along.

At the end of the work day, a coworker decided to stick around and walk out of the building with me. She was eating some other candy she had. As I was trying to gather my things to leave, I wanted to tell her to just take off without me because my panic about the noises she was making was beginning to elevate. I told her I might be a while. Through a mouthful of crunching candy, she said she would wait for me. Instead of being happy to have a friend who wanted to walk me outside, I was wishing she would just disappear. I felt as though I was moving as fast as a Nascar pit crew while I grabbed my belongings to head out the door with her. I wanted the experience to be over as soon as humanly possible.

I hate how misophonia makes me panic, how it makes me feel hatred toward others, and how it makes me treat others.

I also would like to apologize for the delay in blog posts. I have been doing some traveling lately (an activity that comes with its own set of misophonia challenges), but I am back now and ready to write more. If there is a particular misophonia issue you would like me to cover, please let me know.