Is It Misophonia or Possibly Something Else?

4/7/2013

I'll admit, I've always had a scientific mindset and always explored as many options as possible when given a problem to solve. Sometimes I overcomplicate things, but every now and then I discover something interesting in the process. Today is no exception...

For the past couple of hours, I've been updating this SenseHaven.com website and trying to gather my thoughts before writing more in my memoir. Over the past couple of months, I've contemplated starting a local support group for people with misophonia, but I wanted to connect up with other established groups to see how they organized their meetings. I checked out MeetUp.com to see if anyone has formed a misophonia support MeetUp group and was surprised to find only one in the entire world. (It didn't surprise me that it's located in the UK, especially since the one misophonia foundation I've found is also in the UK.)

I explored the UK Misophonia (Sound Sensitivity) Support Group MeetUp site and found many interesting articles about misophonia/hyperacusis/tinnitus. The more I explored the articles, the more my curiosity was piqued and it led me to the Sensory Processing Disorder Foundation website. Could it be that what I have is actually sensory processing disorder (aka "Sensory integration dysfunction") and not misophonia?

According to the website, "While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life... [A] person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable..." (Excerpt from the SPD Foundation's "About SPD" webpage)

Part of the problem with the term "misophonia" is that the name specifically translates to a hearing issue (miso = "hatred of," phonia = "sound"), and yet so many of sufferers have visual and tactile (as well as even smell and taste) triggers too. One doctor I contacted told me he's encouraged people in his profession not to use the term "misophonia," but to use the term "Annoyance Hyperacusis" instead since their studies determined that condition includes hyper-responses to smell, pain, and vision in addition to sound.

Although I'm going to continue my investigation into misophonia, the information I found today has inspired me to open my search to other possibilities too...

4 Comments

Jenn@YouKnow...thatBlog? link

4/7/2013 11:04:21 pm

Interesting! A friend of mine is a psychiatrist down in Texas, and I had a conversation with her yesterday that dealt with this very thing. She posed the SPD suggestion, and made some valid points as you have in your post. In cases where it is so severe that the individual cannot control their rage, we suspect there is more than Misophonia at play, and they have anxiety or anger disorders as well. I think, like anything else, it can't be exactly the same for every person. Our environments, genetics, history, etc - all play a roll in determining our health overall, and things will manifest differently according to individual.

Misophonia is very likely part of a broader issue for many. In my case it's part of having Fibromyalgia. Both disorders are largely misunderstood or unknown to the general population - and doctors as well, unfortunately - so I find it's easier to discuss a single subject (symptom) by name. So maybe it's not a case of "instead of" - maybe it's a case of "as well as".

P.S. I was thinking about the list I sent you a couple days ago - the "leaning on, touch-oriented" issues would be more towards Fibromyalgia in general than Misophonia specifically in my case, but I wasn't separating the two in my head at the time. In that case, it's probable that ALL of the non-audio triggers listed could be attributed to different disorders.

Geez, it's too early in the morning to think this hard.

Emlyn Altman link

4/10/2013 11:12:15 am

Hi, Jenn. I agree that there's so many factors that could come into play when it comes to misophonia. I've certainly read many accounts of people with other conditions (tinnitus, ADD, etc.) I’m not surprised fibromyalgia might be connected too. The only research I’ve found where there are actual statistics about misophonia being connected to something else is with Tinnitus, but even then the statistics ranged from 10% to as much as 60% of tinnitus sufferers that have misophonia. That’s just tinnitus sufferers! I don’t have tinnitus, but I do have misophonia. How many more people are like me? How many more people have other conditions? How many other people may not even know they have it at all?

I suffered for over thirty years before finding out about it last year. Once I found out, I haven’t kept quiet about it and you wouldn’t believe how many people were like, “That sounds like my sister, my friend’s mom, like me!” Most of these people were strangers, but some are even family friends. A bell hop in a hotel, who was helping me move into a different room because I was being driven nuts by the housekeeping door across the hall from my room slamming every few minutes, said my misophonia sounds like what his mother goes through. My apartment leasing office representative said it sounded like herself. (She broke up with a boyfriend years ago because he would “slurp” his steak when eating it.) The list goes on and on…

BTW, don't worry about the list you sent me. I added them to the "Triggers" pages anyway because I have similar triggers. I hate the feeling of people (or their objects) leaning on me (or even barely touching me) while on the bus/metro/plane... Heck, even family gatherings over the holidays are tough for me because I am so uncomfortable being squeezed in between people at the dinner table. I like my elbow room! If the sensations bother us, I'm sure other people do too!

Jim

4/10/2013 09:44:38 am

I see the control issue as entirely separate. Depending on how we learn to function in what we perceive as an incredibly hostile world, we can exhibit different levels of control over our responses. We learn how much we can tolerate before the rage is expressed. We learn when we need to escape the situation and when we merely need to hang in there. There are many shades of grey to this disorder.

I agree that the name misophonia (which Firefox flags as misspelled) is rather misleading. My sound triggers are my strongest, but put me in a full airplane with a kicking child behind me and I'm just as bad off as if he were whistling the theme from The Price is Right (whistling is my worst trigger as well).

Emlyn Altman link

4/10/2013 11:13:29 am

Thanks, Jim. I love how this discussion is developing.

I agree that misophonia is a “grey” disorder. People have different triggers, different sensitivities to the triggers, different senses affected by triggers, even different responses to potential treatments. It’s a moving target that makes misophonia so hard to understand because it’s not a “black and white” condition. There are too many medical conditions where misophonia could apply and because of that, I think it’s hard for doctors to know how to view the condition. Is it neurological? Is it psychological? Is it behavioral?… Is it something else?

I think, once misophonia REALLY becomes common knowledge to the general public, there will be a LOT of people who will discover that they’re not crazy with their sensitivities. When that happens, I think the medical community might see there’s a greater demand to do more research to better understand the condition than they thought. Through greater research, there will be better understanding and with that, hopefully a more focused approach as to how to help sufferers.

Once that happens, hopefully someone will come up with a more appropriate term than misophonia to describe what we're going through that can be applied to any, multiple, or all of the senses.

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About the Author

Emlyn Altman has been suffering with misophonia for over 40 years, even though she only found out about the actual medical condition much more recently. As frustrating as the condition has been over the years, her heightened sensitivities across all the senses considerably influenced her talents within the visual fine arts (particularly sculpture), music (singing, piano, and many other instruments), writing, and culinary backgrounds, as well as professional achievements as an architectural lighting designer. Her goal in developing this website is to promote more awareness about misophonia and help other sufferers as well.

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Is It Misophonia or Possibly Something Else?

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