Category Archives: stories

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?

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.

Therapy for misophonia will be a work in progress

I finally got set up with a therapist to talk about some coping strategies for misophonia. This therapist does not specialize in misophonia; in fact she hadn’t even heard about it until I stepped into her office on the morning of my appointment.

She gave me the same puzzled look my primary care doctor had given me, but being a therapist, she was respectful and willing to learn more. I gave her a list of articles to read up on the topic, the New York Times article in particular (one reason why coverage of misophonia is so important).

During our appointment, she explained cognitive behavioral therapy. Essentially, it’s the idea that situations outside of our control can impact our thoughts and our emotions and ultimately our behaviors. But if we try to recognize negative thoughts and interrupt them, then we can replace bad thoughts with good ones and start to get a grip on our emotions and behaviors that are typically caused by an unpleasant situation. Please understand, this type of therapy is commonly used for anxiety and depression, and it’s use to treat misophonia is experimental only. As far as I know, it hasn’t cured a single person. It’s strictly a way to make it a little bit easier to cope.

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

At the end of that initial appointment, my therapist gave me an assignment: write down my thoughts every time I hear a trigger sound. What am I actually thinking? I had never done this before, and I honestly didn’t want to face the reality of it because my thoughts had become so awful. I came up with a system of texting myself my thoughts while I was at work, and recording them one a piece of paper once I got home.

I found brief relief initially. A coworker would pop in a piece of gum for the fifth time that day, and I would become irate, but then I would have to stop. And pay attention to my thoughts. It interrupted my anger for a bit, maybe a few seconds. It didn’t make the problem go away, and eventually my physiological responses to the sound would, nonetheless, cause a wave of panic, disgust and contempt to rise up from within. In the earplugs would go. Or I’d make a trip to the bathroom to give myself a break from the sound.

My thoughts that I recorded made me feel completely ashamed and disappointed with myself. The “C” word used toward a woman I find to be quite pleasant. Complete revulsion. Words like “gross,” “disgusting,” and “sick” would pop into my mind. Feelings of self pity: “Again?” “Of course she’s going to eat that apple now, at the worst possible time.” “Why is this happening to me?!”

I returned several weeks later to the therapist (my health care provider is overloaded with mental health patients, so therapy appointments are hard to come by). I shared my recorded thoughts with her. She said we would need to arm me with an arsenal of strategies I can use every time I encounter a trigger noise. Escaping is working for me with the ear plugs, as well as getting up to leave a situation when I can. Are there ways I could distract myself when I hear a trigger?

If I need to sit at my desk and talk on the phone and a trigger noise begins, are there ways I can adjust to make things at least a little better? Maybe put an ear plug in the ear I’m not using?

Another interesting suggestion the therapist had was to replace the negative thoughts I have in response to a trigger with a positive thought that I know to be true. For example, people use this cognitive behavioral technique if they have problems with road rage. Instead of blowing up when someone displays horrible driving techniques, which might be true, try to replace it with something like: “Everyone does the best they can.” Or: “This too shall pass.” The trick is that it has to be something that is true to you, and also positive.

When I get triggered at work, I’ve been trying to focus on the person and the traits I like about them rather than on the noise they are making. I try to think things like: “So-and-so is a nice person. He is not trying to hurt me. He doesn’t know any better.” I’ve also been trying to use: “This noise cannot harm me. I am not in danger. My body is functioning just fine and I am going to be OK.” I then try to take a mental inventory of the different parts of my body, noting that my arms are OK, my legs are not hurt, my torso is just fine, my head doesn’t hurt, etc.

The therapist also suggested I get familiar with relaxation techniques such as deep breathing and yoga, and do all the other basics such as make sure I’m eating right and getting enough sleep.

Have any of these methods truly helped so far? Not really. It helps a tiny bit in the sense that I feel more empowered against my misophonia. I have named the enemy, and I have some allies who want to help me fight it. But in another sense I remain powerless. I cannot think my way out of getting triggered. I can attempt to rationalize with the fight or flight instinct that has taken control of my brain.

Perhaps these are coping skills that need to be strengthened over time, so I’ll keep at them to see if things get any better, and I’ll try to do a better job of keeping everyone updated. If you’ve come across a good coping strategy, please share it in the comments section below.

My next appointment is in a little more than a week with a new therapist, because unfortunately my other therapist got transferred somewhere else. I imagine that meeting won’t be too productive, because I’ll be explaining misophonia again to someone new.

Medical field: get with the program on misophonia

I recently went to my primary care doctor to get a referral to a cognitive behavioral therapist. We did the usual listen to my heart thing, blood pressure and temperature checks, etc. Then I got to the uncomfortable part of telling her that I need her to refer me to a therapist.

I’ve been to therapy before. Depression. Anxiety. Stuff like that. She asked me all about those and ruled out that I did not have depression at the moment, but I do have generalized anxiety. Then I started: “I, uh, also have this thing. This thing where I get really freaked out when I hear certain sounds. Like, I panic. It’s called misophonia?”

Blank stare. The chirping of crickets.

Me again: “It’s a real thing. There’s been a lot of news about it lately. And I know I’ve had it for years…”

At this point, my mind is racing and flooding with self doubt. I see through my doctor’s puzzled look that she is trying to decide whether I’m some sort of hypochondriac who thinks I have every disorder under the sun.  The doctor asks a question: So, really loud noises hurt your ears?

No, it’s soft sounds, like the sound of people eating and chewing.

At this stage in the appointment, I think she just gives up and tells me how to get in touch with the therapist. She also tells me a bunch of stuff about anxiety that I already know.

My doctor belongs to a reputable health care network, and the company is really great about giving me printouts each time I go to the doctor. For example, the printed out information I got about anxiety went on for a couple of pages. A definition of anxiety, the symptoms and the  many ways to deal with it.

Misophonia must not exist in their system. I’m not surprised, because the condition is not well known, but that didn’t make the situation any less frustrating. Once I saw press coverage on misophonia, I got my hopes up. I wanted information about this to explode overnight. It’s been in the news — can’t all doctors know about it already? I know, I know. I’m being completely unrealistic.

Change is slow, and it takes the commitment of many people. So, I think I’ll try to do my part and write a letter to my health care provider to see if they will consider researching misophonia and providing information about it to everyone who works for them.

I’m curious if anyone reading this has had a good experience talking about misophonia with a health care professional? Did I just get a dud of a doctor? Are others in the know? How have you approached talking to your doctor or therapist about misophonia, and how were you received?

I have my therapy appointment soon, and I’ll probably have to get my therapist in touch with the misophonia specialist I saw earlier, just to make sure we’re all on the same page. Once again, I’ll keep you posted…

Taking the first steps to getting help

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

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

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

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

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

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

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

The short answer: No. They won’t.

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

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

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.

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:

___

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.

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.

Misophonia awareness matters

I discovered I had misophonia in 2008, more than a decade after I actually developed the condition. I was probably around 12 or 13 and I was at the breakfast table eating cereal with my brother before heading to school. As we sat there eating, I simply began to notice something. My brother was smacking his lips as he chewed his cereal — Frosted Flakes, if I remember correctly. I felt so uncomfortable by the noise that I felt compelled to ask him if he could chew with his mouth closed.

Then I started noticing the noise with other people in my family. My mom smacked her lips while eating, too. She chewed a lot of gum, and I had to leave the room to avoid hearing certain eating sounds. I would want to spend time downstairs with my family, but the second someone went to grab something to snack on, I was walking briskly up the stairs to my room, like clockwork.

Trapped in a car with a gum chewer was torture. If a classmate chewed gum next to me in school, I missed the entire lecture because I couldn’t stop focusing on the noise as resentment and anger bubbled up inside. I cried myself to sleep at the sounds of a muffled television coming from my parents room after my father refused to turn it off.

But possibly the worst part of all, I thought I was the only one. This was before I knew how to browse the Web. All I knew was that nobody else appeared to share my problem, and that my family seemed to regard me as whiny and manipulative. I kept things bottled up inside and suffered silently during everyday events. When I went to the movies with friends, I’m sure they had no idea that I couldn’t wait for the movie to end and that I was obsessing about all of the people eating popcorn or chewing on the ice from their sodas.

I especially made sure not to tell anyone I dated. Finally, when I was 23, a boyfriend and I went on a road trip. We stopped at a gas station, and I saw him head inside and purchase a bag of Doritos. I was overwhelmed by panic, and I was especially concerned because I was the one driving. I tried to remain calm as we drove back onto the highway. He grabbed the bag of chips and opened them. He crunched down on chip after chip and I felt as if I wanted to drive off the road. I came clean with him, and he was the one who looked up my condition online.

I found a Yahoo group of people who had my exact same problem. I read about one woman who had to eat at the far end of the dining room table with music blasting if she wants to dine with her husband. One member of the group said her mother used to chew ice all the time while watching television in the living room, so as a girl, she spent most of her childhood in her bedroom. I spent hours researching what I had and learned there was no cure, and that just a few doctors were starting to research it. But it was amazing to know that I was not alone. I could name what I had and find a support group made up of people like me.

It sounds simple, but knowing I had misophonia changed my life.