Category Archives: treatment

Serious misgivings after trying Neurofeedback for my Misophonia

After many attempts at trying to curb my Misophonia, I decided to try my most expensive option yet: neurofeedback.

BrainWaveHealthIllustI’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.

ar128231040041311My 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?

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.

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.