Misophonia

There was a piece on NPR this week about misophonia. Here’s an excerpt:

FULTON: When researchers put people in an MRI scanner and played trigger sounds like chewing and eating, he says you could see the difference.

GANDER: In the misophonia group, the activity was far greater in particular areas of their brain.

FULTON: And they showed classic signs of stress.

GANDER: Their heart rate increased, and also, their palms were sweating more.

MARSHA JOHNSON: It was phenomenal. It was the first piece of research that showed our population that they – what they have is real.

This sounds quite serious and I wondered why I had never heard of misophonia before. But the doctor on the radio said misophonia “is real,” so it must be. I decided to learn more.

A short web search lead me to Misophonia.com which says, “Being exposed to a trigger sound creates an immediate negative emotional response. This response can range from moderate discomfort to panic or rage. Fight or flight reactions are not uncommon. During a trigger event, a person may become agitated, defensive, or even offensive.” So a person hears a particular noise, like chewing of food or a sneeze, and that person loses self-control and is compelled to run and hide, or lash out in anger, sometimes dangerously. I find this idea terrifying.

Paul Dion of Misophonia.com has appeared on the news.

I wondered if I might already know a few children who have misophonia, and I felt relieved that their unique sensitivities have an explanation, and a path to a cure.

A few clicks later and I found information on a website which offers counseling and coaching, SensitiveToSound.com:

The term “Misophonia” was coined in 2001 by Drs. Pawel and Margaret Jastreboff. Previously, the same condition was identified by Dr. Marsha Johnson, AudD, who in 1999 called it “Selective Sound Sensitivity Syndrome,” or 4S. Although there has been increasing awareness of Misophonia in both the medical community and in the public, there is, to date, no diagnostic code for this condition, either in the ICD-10 (the updated code directory used by medical practitioners worldwide) nor in the DSM-5 (the updated code directory used by mental health practitioners worldwide).

Without a code, there is no “official” diagnosis for Misophonia, and no insurance billing directly possible.

In January, 2013, a group of psychiatrists in Amsterdam who have been investigating this condition proposed a specific diagnostic picture that is unique to Misophonia/4S, which defines the disorder in the manner of any other disorder contained in the DSM (The Diagnostic and Statistical Manual) as follows…

SensitiveToSound.com continues to list out the proposed diagnostic criterion for misophonia. I emphasize the word proposed because the NPR piece left me with an impression that an impartial doctor was informing me about a disease. And now after a short search I discover that this doctor has an agenda to get the existence of misophonia accepted by her peers, and that after twenty years her efforts have been unsuccessful.

A few more clicks shows that SensitvetoSound.com is the personal website of Dr. Jaffe, who was featured on NPR’s piece, and who prefers to go by “Dr. J.” She sells in-person and video-conference counseling services, which diagnosing no “officially” recognized illness, are payable to Dr. J herself out of pocket.

Just to be sure I searched the DSM-5 and the IDC-10 and the word “misophonia” is not contained in either. It’s also not in Merriam Webster’s dictionary. This may be connected to the reason why I’ve never heard of this sensational illness before the NPR story came out.

I wish NPR had let me know that the existence of misophonia was in doubt and not accepted by the medical community at large. I feel flummoxed that they did not. It is perhaps easier to put ideas on radio waves than into scientific manuals.

I kept looking for more information on misophonia. I found that there is at least one other person who will sell you a cure, such as Dr. Tom Dozier of The Misophonia Institute. His treatment involves a small hearing aid type device which produces white noise (the shushing sound made by a radio tuned to no station). “The cost can range from $2.000 to $4,000 for a pair.” You pay for this out of pocket, and it is only available from The Misophonia Institute, which also offers hypnotherapy.

The Misophonia Institute is located in Livermore, California on the eastern edge of The San Francisco Bay Area. Unlike with Dr. J, all treatment is in person so you must travel to it. The address is listed on their website. I looked it up on Google maps.

It’s Dr. Dozier’s house? Is this where the hypnotherapy occurs? Is this the entire Misophonia Institute?

I found one other notable article about misophonia by James Cartreine, PhD who says, “it is a real disorder.” More or less all the articles I can find about misophonia contain a sentence of this nature — it is real — while leaving out the facts that World Health Organization and the American Psychiatric Association, after twenty years of consideration, do not support this assertion.

Pretty much every article I can find about misophonia also cites the MRI study that Dr. Johnson cited in the NPR piece. As far as I can tell, no other study is ever cited because their experimental results have never been replicated. “Most of the published literature exploring misophonia has been conducted using individual case descriptions or a series of case reports among small samples of adults self-reporting symptoms.

But enough of the Internet, I thought. It can be such a confusing place. I should log off and read a book about misophonia. I checked the Portland Public Library. Tragically, my keyword search results in “Nothing found for misophonia.” Perhaps my small town library is simply not sophisticated enough to accommodate the vast set of heavy tomes about misophonia. So I searched The Library Of Congress. “No records matched your query.” How strange. What about the The Ottawa Public Library in good old, trustworthy Canada? Again it’s “Nothing found for misophonia.” The London Library: “Results.” The National Library of Ireland: Nothing. The National Library of Israel: “No records found.” Could it be that I can’t read a book about misophonia because there aren’t any?

Luckily I remembered about the world’s largest book store, Amazon.com, which (a quick search reveals) has a book about misophonia! Finally. And it’s by Dr. Tom Dozier himself. Understanding and Overcoming Misophonia: A Conditioned Aversive Reflex Disorder (2nd Edition). The publisher listed is “CreateSpace Independent Publishing Platform.” A visit to their website shows that:

You can now manage your CreateSpace content on Amazon’s improved publishing services. We now offer specialized options for your different publishing needs. Login to get started with Kindle Direct Publishing, Manufacturing on Demand, or Print on Demand for publishers.

My attempt to leave the world of online and get lost in a good book has brought me right back to the world of online. The only books I could locate on the entire planet Earth about misophonia are self-published on Amazon by the same handful of people whose websites I’ve been perusing for the last hour. And there are dozens of vanity press books, funny t-shirts, self hypnosis CDs, specialty journals, novelty coffee mugs, and documentaries produced by Paul Dion, the proprietor of misophonia.com — the guy from the news! — who is not a doctor, but “Paul owns and operates Innovative Incentives, Inc., a successful corporate incentive travel company. In the past, he has operated retail travel agencies and travel accessory shops. Paul has also opened two fine art galleries in central Massachusetts.” Paul’s expertise is selling.

I decide that instead of spending money on a book by Dr. Dozier, I can just keep reading his website for free. Sadly, Dr. Dozier must note that The Misophonia Institute’s regimen has a small hitch. “Currently, about half of the people treated show a positive response to the treatment, and half have no effect. The problem is that most of those who respond positively regress. Their misophonia comes back.” While you may find these results unpromising, Dr. Dozier continues to assure you there are in fact two people who have experienced a permanent cure as a result of his institute’s treatment. He says, “It did not come back for my daughter and granddaughter.”

The National Institutes of Health says, “To date, no randomized controlled trials evaluating treatments for misophonia have been published.”