Thoughts on the 20/20 segment on misophonia

A few weeks have passed since the misophonia segment aired on 20/20, and I have been reflecting on the episode. Overall, I thought it was thorough and accurate, but I always think there could be room for improvement when it comes to media coverage of this condition. Because we don’t get much coverage, it’s crucial for the pieces done on misophonia to be particularly informative and fair. If you missed the episode, here’s the link to view it.

THE GOOD:

* Massive audience: 20/20 reaches a huge audience, and one that’s different than those who read the New York Times or who watch morning talk shows.

* No-trigger version: How thoughtful was it that the producers made a version that eliminated all of that torturous background sounds of people chewing? I watched the “trigger” version live with my partner, and I had to yell out from time to time because there were so man horrible sounds. Now I can go back and watch it again online with less trouble.

* Johnson interview: They interviewed audiologist Marsha Johnson and pieced out some good quotes from her about the condition. Johnson is doing a great service to us by articulating the facts about misophonia in a respectful and honest way.

WHAT COULD IMPROVE:

*Visual triggers: The segment makes no mention of visual triggers that exist with misophonia. Yes, we seem to all have certain sounds as triggers, but many of us are just as bothered by repetitive visuals, such as foot tapping, nail biting, or watching someone eat. (At least those are my experiences with visual triggers, anyway.)

* Generalizations about violence: The 20/20 segment opened with, in my opinion, an extreme case of misophonia. The father of this teenage girl with misophonia played a recording of her blood curdling screams following a trigger. The mother of this girl said she feared for her life and had been physically abused by her daughter. Then, a voice comes on to preview an upcoming part of the show by saying viewers should expect to see “the violence of a trigger caught on tape.”

Yes, misophonia does trigger a “fight or flight” response, and fighting is violence. Yes, this teenage girl used as an example has misophonia and has been violent. I just wish 20/20 could have pointed out that not every person with misophonia is violent. Many of us choose the “flight” route, and many of us might have angry thoughts but are still able to refrain from acting upon them. I would hate for the general public to get the impression that all people with this condition should be considered a danger to themselves and others.

What were your thoughts on the 20/20 segment? Is my critique fair?

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Did you watch? Misophonia featured on 20/20 tonight

  1. All right, I just got done watching the 20/20 segment on misophonia. My family and partner watched too. What did you think about their coverage? I made a quick Storify thread about what I saw on Twitter as the segment aired.

    I’ll try to write a post with better analysis of the segment later. If you missed it, you can watch a version of it here. In this version, the trigger sounds have been stripped from the segment.

    First on Twitter, a link is revealed for the show, with the hash tag for the Twitter conversation:

  2. ABC2020
    Do you think you have misophonia? Here are the major symptoms: http://abcn.ws/Ko8JCx #2020MakeItStop
    Fri, May 18 2012 22:20:02
  3. SutherlandPhD
    RT @EVargasABC: So many people seem to relate to those who struggle with misophonia. Very happy to bring awareness to this impt condition #2020MakeItStop
    Sat, May 19 2012 01:20:30
  4. Several people react with happiness that the show is spotlighting their condition. Others are realizing that their personal hell has a name.
  5. LouTomsAndSwag
    @chrystallclearr omg I just read the symptoms for this and it described me exactly like spot on I think I have this omg http://en.m.wikipedia.org/wiki/Misophonia#section_
    Sat, May 19 2012 01:06:28
  6. starkidriddle
    Apparently I have misophonia. Didn’t know until today. #2020MakeItStop
    Sat, May 19 2012 01:29:20
  7. missodessa
    watching 20/20 & I forreal think I have misophonia hatred of certain noises eating, smacking, breathing heavy, coughing & certain ppls voice
    Sat, May 19 2012 01:25:11
  8. Joejoelle
    Thank you, 20/20. Thank you so much for doing an episode on misophonia. No one takes it seriously and it’s so frustrating and I hate it.
    Sat, May 19 2012 00:49:53
  9. DanJohnsoninc
    @KellyRipa: Wow! The Misophonia piece was a HUGE eye opener! I just thought it was my OCD. THX! (Don’t listen to the Kit Kat commercial. 😉
    Sat, May 19 2012 01:23:11
  10. berrydelicious
    Yes! I hate the sound of chewing, sniffling, and coughing!!! #2020MakeItStop I’m so glad 20/20 is doing a segment on misophonia.
    Sat, May 19 2012 01:05:46
  11. neurp
    omg, i have misophonia. seriously. a very mild case. but mouth noises really freak me out. http://en.m.wikipedia.org/wiki/Misophonia #2020makeitstop
    Sat, May 19 2012 01:17:09
  12. Others are shocked at the existence of the condition. Some doubt it exists or think that everyone has the condition.
  13. KellieKells86
    I’m bored….. Watching 20/20 this shit suuuuper cray! People with misophonia. Wooooooooow
    Sat, May 19 2012 01:07:18
  14. AshRagutero
    Omg @ this episode of 20/20. I feel so bad for these people’s friends and families. #Misophonia #2020MakeItStop #2020
    Sat, May 19 2012 01:19:13
  15. JennsAdventures
    Watching Medical Mysteries on #abc — I’m going to diagnose EVERYONE w/Misophonia. Google it. We all suffer from it to some degree!
    Sat, May 19 2012 01:26:50
  16. aeiouandalsoy
    I think this girl is bull shitting. She says she has misophonia and that One Direction is the only thing that makes her feel normal -_-“
    Sat, May 19 2012 01:08:41
  17. juliedemdam
    Misophonia and Pica. I’m all types of baffled
    Sat, May 19 2012 01:09:15
  18. pdxali
    #2020MakeItStop is .. interesting. I’d never heard of this before. #misophonia
    Sat, May 19 2012 01:09:34
  19. DAElaSOUL
    I have misophonia… I hate the sound of stupidity leaving a person’s mouth.
    Sat, May 19 2012 01:20:34
  20. karvisais
    Your lesson for today: Misophonia, literally “hatred of sound,” is a form of decreased sound tolerance. It is a… http://fb.me/1DCFibbxC
    Sat, May 19 2012 01:21:47
  21. Other notable tweets sent out as the segment aired. The misophonia segment was followed by a segment on a condition called Pica, in which people are compelled to eat objects such as rocks.
  22. CaptainDMo
    Wonder what the misophonia people would do about this lady eatin rocks #2020makeitstop
    Sat, May 19 2012 01:29:10
  23. eLmONd310
    #2020makeitstop y would they put a person that eats rocks don’t they know I just found out I have misophonia
    Sat, May 19 2012 01:28:47

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…

Cognitive behavioral therapy, white noise generators used as defenses against misophonia

I finally went to my misophonia appointment, where I received some good news, and some bad news. Let’s have the good news first. As I mentioned in a previous post, I wasn’t sure what to expect, and this was my first time seeking help for misophonia.

Although misophonia is currently incurable, I learned about cognitive behavioral therapy, as well as a new technology I wasn’t aware of for blocking trigger noises. Apparently, people with misophonia generally do about 12 visits with a therapist to go through the CBT, which helps them develop coping strategies for dealing with trigger sounds.

I could definitely use that. The bonus is that CBT can be done with any therapist, as long as they get educated about misophonia as they are working with you.

I have a doctor appointment with my primary care physician this week, and I plan to ask her to refer me to a good cognitive behavioral therapist so I can try to start that. I haven’t checked with my health insurer to see how much of that therapy would be covered, though. That might be an issue for me if it costs too much.

This resembles the in-ear white noise generator I saw during my appointment with a misophonia specialist.

Then there’s the bad news. Sort of. I also learned about in-ear white noise generators. They were pretty amazing. They are like hearing aids, but instead of helping you hear, they help you NOT hear your trigger noises. They emit white noise into your ear, which helps drown out trigger sounds while giving your ears something constant to engage with. They also can be turned up and down with a small wheel that hangs over the back of your ears, and the device is nearly invisible.

The bad news is they cost $2,400. So… that won’t be happening for me any time soon. If someone with misophonia can afford this type of white noise generator, I’d be really curious to know how they work for you. Would they really drown out all the triggers — even loud pops made by chewing gum, or a metal spoon clanking against a ceramic bowl? I’m a bit skeptical.

I found some less expensive white noise generators online, but some appear to block the entire ear canal; they seem basically like an ear plug with a white noise speaker in them. Those seem cool, but the beauty of the pricey in-ear white noise generator is that it doesn’t block the entire ear canal — meaning you can still hear the noises you want to, such as a friend talking to you.

The closest alternative to the $2,400 model I found online costs around $400 for both ears. I am not sure whether they are near the same quality as the $2,400 model recommended by the misophonia specialist I saw.

Here are some other models I found online. I honestly have no idea how well they work, but I figured I pass the information along anyway.

I also had my hearing checked and discovered I have impeccable hearing, which is fairly common for people with misophonia, according to the specialist I saw. I was surprised by this because I’ve spent many years blasting music into my ears through headphones, and I’ve attended countless concerts that have left my ears ringing for hours. I never cared about damaging my ears, and I secretly hoped I would make myself slightly hard of hearing as a way to help me escape my condition. I guess that didn’t work.

I’ll post an update once I know about any cognitive behavioral therapy sessions I might have. Thanks for all of the comments on my posts. It’s been really great hearing other people’s experiences with misophonia.

The science behind misophonia, and possible treatments

NOTE: Much has changes since I wrote this post. Please see my blog’s home page for updates on what I’ve learned about this condition and the experimental treatments I’m trying. 

————————————————————————————————————-

I was poking around on a website that helps link misophonia sufferers to doctors who study the condition, and I found a document on the site that gives a thorough explanation of misophonia and its associated conditions, including phonophobia (fear of sounds).

The explanations were so good, I thought I would share them here. For more information, visit the 4S provider network website.

According to the document, this is how you pronounce the condition:  mis-ō-fō′nē-ă (MISS OH PHONY UH)

Theory behind why it happens: “The auditory pathways may be functioning normally, but there is an abnormally strong reaction of the limbic (emotional system) and autonomic nervous system (body control system) to which the auditory system is intimately connected.”

Several definitions are listed for the disorder, including:

1. “Abnormally strong negative reactions of the autonomic and limbic systems to specific sounds resulting from enhanced functional connections between the auditory and limbic systems for these sounds.  The auditory system works in a normal manner, without abnormally high activation.  At the behavioral level, sounds specific for a given patient evoke strong negative reactions.  This situation may cause general negative attitude to sound as well.  When fear is dominant emotion (patient is afraid of sound) phonophobia occurs (phobia – fear).  Phonophobia is a specific case of misophonia.”

2. “Selective sound sensitivity should be considered a type of misophonia, where soft sounds (typically eating and breathing sounds made by emotional attachment figures) are the focus, and the quality of those sounds causes annoyance and rage in the listener.”

3. “Pre-puberty seems to be a very common age of onset for the majority of those with misophonia, with lifetime persistence for most cases, and there appears to be a genetic component.”

4. “Misophonia can be considered abnormally strong connections between the autonomic and limbic resulting from enhanced connections between the auditory and limbic systems.  These connections encompass both a high level of cortical level loop with involvement with cognition as well as subconscious connections, most probably involving the link between the medial geniculate body and the amygdale. The functions of these connections are governed by the principles of conditioned reflexes.”

The definitions are super technical, but I thought I would share them anyway in case someone wanted to understand just what was going on with the wiring in their heads. Looks like misophonia happens when the wires that affect your hearing get crossed with the wires that affect your emotions. It’s pretty fascinating, really. But I’d be much more fascinated if I didn’t have to deal with it every day of my life.

OK, so what about the current treatments?

According to the document, all of the following are being used to help treat (not cure) misophonia:

  • Tinnitus retraining therapy has been tried using bilateral sound generators and directive counseling
  • Earplugs are often prescribed to help block out intruding sounds
  • Cognitive therapy
  • Desensitization therapies including adversive exposure therapy, sensory integration auditory programs, and many others
  • Counseling therapies
  • Rotating cycles of pleasant sound therapy paired with unpleasant sounds
  • Psychoanalysis

My appointment with a misophonia specialist is happening soon, so I’ll be sure to discuss these treatment options at that time. Stay tuned…

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.

New site locates medical providers who can help with misophonia

Although the current consensus is that misophonia has no known cure, that hasn’t kept people from trying to stop the disorder in its tracks or from trying to find a way to develop coping strategies for those with the condition. As a person with misophonia, I applaud this effort — and now a new website has launched to help people like me find a medical provider in their area.

The site, titled “Misophonia 4s Provider Network USA,” allows those living in the United States to give their contact information to professionals who can help with the symptoms of misophonia. I’ve taken a screen shot of the contact form, where I was asked to provide my first and last name, address, phone number and email. I’ve offered myself up as a guinea pig and submitted my information through the website. I’ll report back on how it turns out. I think somebody from my region will contact me soon about resources in my area.

misophonia-provider.com

According to the site, which was launched this summer, it offers “seven regional centers in the USA that specialize in assessing and managing those who suffer from misophonia/4S symptoms. All ages accepted. Sorry, USA only for now.”

If you don’t want to enter your contact information, there is a page on the website that simply lists the regional offices. Some of the professionals are audiologoists, experts specializing in tinnitus (a condition similar to misophonia), as well as ear, nose and throat doctors.

The creators of the site acknowledge recent national news coverage about misophonia and add that there are steps one can take to get a better handle on their misophonia. As someone who has never received help for this often infuriating disorder, I think finally seeking help will be the next step in my journey. Stay tuned.

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:

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

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