After many attempts at trying to curb my Misophonia, I decided to try my most expensive option yet: neurofeedback.
I’m apprehensive to even write about neurofeedback because I don’t want this post to seem like an endorsement of the method. But basically, the neuro process works like this: you relax in a chair with a few electronic sensors attached to your ears and scalp; the sensors read your brain waves as you listen to music and watch a light display on a computer screen; the music and light display are interrupted ever-so-slightly when the sensors detect that your brain is deviating from a happy and healthy state; these slight interruptions – or ‘feedback’ – are believed by some to rewire your brain to achieve some level of normalcy.
I’ve read about a handful of people online who say the method has cured their Misophonia or has at least reduced their symptoms.
There are a number of computer programs out there that provide this service. I tried Zengar’s Neuroptimal after the creator of that particular program, Val Brown, spoke at the first Misophonia conference in Portland a couple of years ago. There also was a man at the conference who said that after trying neuro, his Misophonia completely vanished. One couple there said they were about to purchase their own neurofeedback machine to use whenever they wanted, at a cost of about $10,000.
Neuroptimal is a one-size-fits-all approach to neurofeedback. It claims to help with a whole host of problems, including ADHD, autism, Alzheimers disease and post-traumatic stress disorder. It claims to help you sleep better and to increase your ability focus at the office.
I found someone in my area with a Neuroptimal machine and met her for a consultation. She administered neuro in an office-like setting; it felt like I was going to see a therapist and there was even a reception desk. My practitioner told me she had treated one other person with Misophonia, and that Neuroptimal reduced that person’s Misophonia triggers. I was asked to commit up-front to 24 sessions at $75 each – an $1,800 investment. I agreed.
I started weekly sessions and hoped for an improvement, but ultimately I saw none.
My practitioner, who does not have Misophonia, seemed to truly believe in the power of neuro, almost to the point that it seemed to cloud her judgement when I told her that I wasn’t seeing any improvements. She would ask me questions such as, “Is there anything at all that you’re noticing that’s different? Are you sleeping better? Are you able to focus better at work? Are your relationships better?”
Was she actually encouraging me to seek out a placebo effect? It seemed unscientific and unprofessional. She also told me that it was OK if I fell asleep during my neuro sessions and that it would be just as effective either way.
“Wow… It’s working,” she’d say after pointing to the analytics spit out by the neuro program following a session. “Stuff’s moving.” That was her way of telling me my brain was creating new pathways; it was being rewired to find a different response to triggers. Despite her take on what was happening to my brain, my Misophonia remained the same. I declined further neuro sessions.
My provider said I should see some changes during those 24 sessions. In the rare endorsements I’ve read online about using neuro to treat Misophonia, people have said it can take many, many more sessions than 24 to start seeing an improvement. I simply didn’t have the financial means to continue, nor the ability to suspend my disbelief any longer.
If you have unlimited time and money, or if there’s a practitioner out there willing to treat you for free, I suppose you could give it a whirl. In that case, I also would suggest trying a neuro program that is more targeted than the one-size-fits-all approach. It would be wonderful to be able to hear that the method is working for more than just a handful of people with Misophonia.
If money is tight, I would strongly urge you not to try neurofeedback until there is insurmountable evidence that this method does help people with Misophonia. It’s simply too expensive, and having a practitioner tell you that you probably just need more sessions before you see improvements? It leaves too much room for the possibility that you’ll be taken advantage of.
If you disagree with me, or if you’ve come across any peer-reviewed studies or scholarly articles that suggest neurofeedback provides more than a placebo effect for any disease or disorder, could you let me know in the comments section?
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.
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.
During 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.
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.
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.
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.