Hear No Evil

|

When I was in junior high, my family moved to a house in the country. The dining room table sat beneath a vent designed to allow heat to rise from the main floor into my mom’s bedroom upstairs. Unfortunately the vent also served as a conduit for noise. The soft clink of metal spoons against glass bowls as my stepbrother and I ate cereal in the morning drove my mom nuts. So she instituted a new rule in the house. Thou shalt not eat your morning cereal out of glass bowls. Use the plastic ones.

This didn’t seem all that peculiar to me. My mom has always had weird issues with noise. Dinnertime was the worst. Forks scraped plates, mouths slurped, teeth crunched, lips smacked even when they didn’t mean to—something was always bothering my mother. I used to think she was just easily bugged.

But last week my mom forwarded me a New York Times article about a disorder called misophonia. The article begins like this: “For people with a condition that some scientists call misophonia, mealtime can be torture. The sounds of other people eating — chewing, chomping, slurping, gurgling — can send them into an instantaneous, blood-boiling rage.” She added a short note: “I think I have some form of this.”

According to the article, misohponia or “fear of noise” is a recently recognized condition in which small sounds like chewing or slurping cause major annoyance, even rage. The New York Times was short on specifics. No one seems to know how many people the condition affects, what causes it, or how to treat it. One neuroscientist, Aage Moller, thinks misophonia might be the result of a “‘physiological abnormality’ that resides in the brain structures activated by processed sound.” The author hinted at a genetic component, writing, “Family links are common.” She followed that statement with an anecdote about a woman with the disorder who thinks her father may have had it too. Not exactly hard evidence.

The Times article, published last September, sparked a media frenzy. Since then, the disorder has been featured on WNYC’s Soundcheck (twice), the Today show, the Huffington Post, and Fox News. Misophonia even has a celebrity spokesperson. Kelly Ripa diagnosed herself with the disorder after seeing the Today segment.

Because I’m a science journalist, I plugged misophonia into PubMed to see what I could find in the published literature. Not much, it turns out. I came up with just seven hits. One article, intriguingly titled article —“Fear of the Yawning Mother”— was published and then retracted. Another article, “Hyperacusis and misophonia: the lesser-known siblings of tinnitus,” appeared in a regional medical journal called Minnesota Medicine that describes itself as “a cross between a magazine and a medical journal.” I wanted to see something in Science or Nature, or at least an article that seemed peer-reviewed.

It’s not that I don’t believe that misophonia exists. I know my mom is overly sensitive to certain sounds. And no doubt there are others out there like her. But what constitutes a disorder? How many people must exhibit symptoms before their “condition” merits a name? And who decides? Do the audiologists get together at their annual meeting and put it to a vote? I would like to think there is some system in place. I would also like to know that a diagnosis of misophonia is based on some accepted criteria. But the only vaguely quantitative thing I found online was a scale that attempts to help clinicians assess the severity of the disorder. The so-called Misophonia Activation Scale (MAS-1) appears on the Web site for Misophonia UK, a misophonia advocacy group. It was drafted by a lawyer, not a doctor.

Audiologists still disagree about what to call the disorder. According to Paula Schwartz, who appeared on WNYC’s Soundcheck and also co-authored the Minnesota Medicine article, misophonia is a general term that means a fear or dislike of certain sounds. Schwartz said that the disorder we’re talking about is actually a kind of misophonia called Soft Sound Sensitivity Syndrome — 4S for short — a term coined by Marsha Johnson, clinical director of the Oregon Tinnitus and Hyperacusis Treatment Center. But type “soft sound sensitivity syndrome” into PubMed and you get zero hits.

Maybe this is what bothers me: The published literature contains little to no information about misophonia and nearly all the mainstream media articles say that scant research has been done. Yet if you visit www.misophonia-provider.com, you can find a list of audiologists who will treat people with misophonia. According to the site, “while there is currently no cure for misophonia, there are very helpful management and treatment programs available and new ones emerging. Please take advantage of our providers listed on this site to find our more about what you can do.” But don’t you need to conduct research to figure out which treatments work? Am I missing something?

If my mom does have this disorder, it’s a relatively mild form. Yes, her husband’s chewing drives her crazy. And swallowing sounds make her nuts. But she manages. For her, having a diagnosis — even if it is just a self-diagnosis — has been an immense relief. Her condition has a name. “I’m not a freak,” she says. “Real people have this.”

***

Image courtesy of a is for äpΩL † on Flickr

Share Button

Categorized in: Cassandra, Health/Medicine, Mind/Brain

Tags: , , , ,

15 thoughts on “Hear No Evil

  1. Yes – I have a mild form of this, as well.

    People eating loudly, snoring, making weird noises, whistling, persistent coughs etc, all drives me nuts.

    Sounds like the refrigerator or air-conditioning humming become earworms for me. I have to consciously fade them out, or introduce another sound (white noise?) to counteract their influence.

    I’m forever turning down the TV or stereo volume because it’s always too loud for me.

    I’ve always been like this – since I was young. Sudden and unexpected loud noises can also frighten me to the point of panic and crying, or send me into a mild state of shock.

    I wear earplugs to sleep and when I’m in confined public places for long durations – such as on an aircraft – simply to filter out the noises which would lead me to “kill someone” or get me thrown off the plane. ;.)

    My tinnitus didn’t set in until I was 41 – I’ve had it for the past 9 years now. I noticed its arrival around the time that my workplace was dealing with the death of a colleague from cancer. As I was the GM, it was me who had to lead my team of workers through this particularly stressful time.

    It’s a constant high pitch sound, only in one ear, thankfully. Strangely, it doesn’t affect me as much as other noises because I have learned to tune it out and live with it. It’s my noise!

    This is interesting to read that it may be a condition. I, and others around me, have always thought that I’m too over-sensitive with exceptional hearing. ;.)

  2. If this exists, I have it, though I’ve got better with dealing with it over the years. When I was a teenager it was horrible. I also have tinnitus (very mild and infrequent) and some other odd sensory reactions to smells and textures, so if there is proper research on it and related conditions, I’d love to read it…

  3. Thanks for your comments! QoB, my mom tells me that she has the texture and smell issue too. My own sense of smell has been getting keener as the years pass. I now clearly smell odors my husband can’t even catch a whiff of, even when he tries. But I don’t seem to have any symptoms of misophonia, beyond the normal annoyance lots of people experience when someone is doing a lot of smacking, slurping, or gum popping.

  4. This kind of article is so important, because it reveals the total lack of basis often required for a mainstream news story. Writing these is a little akin to the importance of publishing null results.

    You can see the story-generating process really clearly in small towns, where if you’re in the little press circles, you realize so many local news stories can be traced back to items on the reporters’ facebook newsfeeds.

    I guess for diagnoses of this kind, assuming it’s a primarily psychological disorder, the DSM manual would be the final arbiter of whether or not it merits the status of a syndrome…

  5. Wait a minute. Of course all of those sounds are annoying if it’s the only noise in the room! Does your family talk a lot during dinner, is there music or a tv on? If there are no other sounds in a room except an annoying one obviously a person is going to get angry (especially when trying to sleep). Another thing is whether the sound is rhythmic or not. I hate the sound of traffic at night because there is no pattern, but I don’t mind trains because they have a steady beat that simply gets louder.

    This whole thing is just another example of ‘making mountains out of mole hills.’

  6. Someof these comments make me think of a situation that is becoming better known in last several years called Sensory Processing Disorder or Sensory Integration Disorder…attempts are being made now to separate SPD from the autism specturm disorders, although it is true that some people with autism also have some of these issues with sound, textures, tastes. Adults who have these issues often just experience themselves as “too picky” or “too sensitive” – and may be told that they are. However, it is a real condition that causes a lot of heartache.

  7. I have the same experience with certain sounds, eating and chewing being at the top of the list. I can’t stand the faint sound of someone else’s music bleeding out of their headphones on the subway, any kind of crinkling of paper or plastic.

    The eating thing is so bad that I’ll go to a different room when my family eats something crunchy, like chips or croutons and it does stir up an immediate irrational flash of anger in me that I’ve learned to control. It’s my problem and I keep it away from other people.

    But I’ve noticed that there are exceptions: it doesn’t bother me when children or my dog eat even though it’s the same noise.

    I’ve chalked the whole thing up to two things. First, I have ADD and my mind tends to race then settle on strange things and I think that those noises are part of that, and I also think it’s a deeply rooted control issue.

    I also had a stepfather who was quite insane and he had noise issues, so I grew up being sensitive of the noise I made so I wouldn’t get in trouble. It could run in families because it’s a learned behavior.

    But a stand alone disorder? Beats me.

  8. The DSM (http://en.wikipedia.org/wiki/DSM-5) lists mental disorders. Originally, someone asked a bunch of doctors what might go into such a manual. Most suggestions made it in. Not very scientific. And pharmaceutical companies are happy to sell you something for lots of stuff in there.

    I figure that the brain has to have at least hundreds of specialized bits. There’s a huge visual center, a language bit, a math bit, something to help you with directions, a face recognition bit, and lots more are known. There are probably lots that aren’t known.

    We know about lots of these because of things like epilepsy, and neural surgery, and so on. When a bit of the brain is removed or disabled temporarily, you can see how it affects the patient. But in real life, some people have better bits than others. It’s not generally on or off, but some sort of continuum.

    The brain is incredibly complex, and from an evolutionary perspective, it has changed rapidly. But the environment we live in isn’t the environment our ancestors lived in a million years ago, or even a hundred. If you look around, there’s always someone who is better at -pick any skill- than you are. That doesn’t mean that you have some sort of disorder. Giving it a name may help you talk about coping strategies.

    And, just because there are lots of brain bits doesn’t mean that you can’t spell because your brain is broken. It might be that you had an annoying kid sit behind you in 2nd grade and you got put off the subject ever since. Or it might be that your peers use a spelling checker religiously, and you don’t.

    My ex accuses me (and others) of having autism, or other disorders. The claims are silly, but they’re not meant as aids in coping. These claims are meant to hurt.

  9. OK OK. I know if you cannot identify with Misophonia/4S specifically, you’re not going to understand and you will feel an incredible urge to call it something it’s not. You’ll call it an attention-getting fluke, you’ll call it psycho-learned behavior, you’ll call it SPD, you’ll call it an auditory disorder, you’ll even call it nothing.

    But (and you know there’s a “but”) if you identify, you feel an immense amount of relief and validation that you are not alone with the rage/panic you feel instantly when exposed to certain innocuous sounds. You’ll understand that you have no control over the anguish reflex you feel and you’ll see that you spend a lot of time just talking yourself down or self-medicating or trying to survive while avoiding situations (depending on your triggers) where people are walking, eating, playing music, TV’s, talking, etc.
    You may even recognize that you have family members who are just acting out violently or are self-medicating and/or suicidal.

    You’ll know to think for a moment: there are no random acts of kindness OR violence. All acts come from someoone’s intention.
    You’ll know that if a sound is repeated often enough it will probably eventually become a trigger. You’ll recognize the average age of onset and the “samenesses” amongst us that are too bizarre to allow for this to be anything but a “real” disorder. A real neurological disorder.

    I have suffered with Misophonia for 45 years and I have had to become a lay-researcher to get some answers.

    I may have discovered a few things . . .
    The 8th cranial nerve goes through: the Pons, right? Hmmmm.
    Emotions are not some ethereal-self-indulgent-nothings: they are produced in the brain.
    And since we ALL feel a sense of personal affront and insult and indignance: right temporal lobe? Hmmmmm.
    And since it might be related to a type of sensory-specific autistism: Fragile X inheritability? Hmmmm
    And since it might be a type of Syneasthesia caused by overactive neurons? That’s also got a genetic link. Hmmmmm.

    My point is that we need science. If a lay person like me can piece this stuff together and at least come up with some hypotheses, how hard could it be for the real scientific community to figure it out? Why do we still have to explain it to doctors who tell us to stop using earplugs and try to psychoanalyze us?

    I cannot heal a broken bone by thinking my way out of it, and I cannot think myself out of neurological reflex recations I have as a Misophonic.
    At what point does this warrant attention? This is not something new: we can often trace it back generationally. We are only recently coming out from behind the shame and isolation.
    Can we please have some science?

  10. I read your article with great interest, as it is always amazing to see anything come out about misophonia. I can’t remember how many months ago I first heard this word, but my life has changed ever since because , like your mother, I realized that I am not a freak. Misohphonia is a very real situation that so many people suffer from all around us. At first I started talking about it to friends, etc. and realized that there are people who I work closely with or family that I did not realize suffer from the same symptoms as myself. I was most shocked when I signed up on an online support group on yahoo and immediately, my inbox was flooded with letters from others who also suffer. I did not check that e-mail for awhile and when I did I had over 1800 e-mails. It’s amazing and shocking and troubling all at the same time. There is no cure, only coping methods, and it does not get any easier with time. There is not, focusing on something else, or trying to tune it out. We cannot control out reactions and most of us are shocked at how a lot of the situations that trigger us are just results of people with terrible manners, such a popping and cracking gum in public. Please, do as much research as you can and help us get the word out there. It is us who are educating our doctors and employers about this condition and we need all the help an research we can get!!!

  11. “But don’t you need to conduct research to figure out which treatments work?”

    Yes, Yes, and Yes. We need research! Many of us have been suffering from this for 40+ years. Most all of us remember it starting when we were children, many of us have parents, siblings, aunts, cousins, grandparents with it, and all of us suffer tremendously with it and until we found each other thought we were alone. If you have this, trust me, you know it. It’s not some mild annoyance, it is a fight or flight response that has nothing to do with being picky or hyper sensitive.

    Here’s the deal, it’s a newly recognized thing, disorder, whatever you want to call it, so no one has actually researched it. Like any disorder, there’s the beginning, and you have found us at the beginning. First, we found each other (thank you, Internet) and then we set out to have our voices be heard. And the cry was finally answered by the New York Times and the Today show. Then we get science interested because people are talking. That’s the way this whole get-a-condition–researched thing works. UCSD’s neurology department has started to research (which I think is fantastic as I believe it’s a neurological disorder and not a psychological one), and many other Universities have expressed interest. Once they do proper and adequate research, we will know it’s root cause and maybe, just maybe, we can start some effective treatments. With research comes hope. In the meantime, lots of people are going to attempt to tell us how they can treat us with no research or support. And many of us will try anything, as we have been for decades, because we want better lives. This is a fact. And eventually the drug companies will get in on it and probably slap a fix-misophonia label on some dangerous drug to sell us. But we will continue to urge the Universities and scientists to please please please research us. We are human guinea pigs waiting to be tested on to figure out what makes our super-sensor-hearing-straight-to-the-lymic-system tick so that we can find proper, adequate, working treatments.

    And while writing those letters to scientist asking them to please research this “disorder,” I have started Nuerofeedback, because like I said, we will continue to try all options that are within reason to find relief, and frankly I am very very hopeful.

    Thank you for bringing more people into the fold and made aware of Misophonia or whatever any one want’s to call it. The more people, the higher chance of real research.

  12. I have suffered from Misophonia most of my life. I appreciate you writing an article about it. I disagree with the previous posts, in that it’s ok to theorize on the causes. You made a very interesting point in that it may have to do with the indignation of violating personal space. I do believe it’s neurological, but I am open-minded. Thanks.

Comments are closed.