I Have Misophonia, And We're Being Exploited

Disorders should not be cash grabs.

07/16/2016 04:49 am ET | Updated Jul 21, 2016

Shaylynn Hayes is an advocate for her disorder and helps run the news site and magazine Misophonia International. A resource that helps sufferers connect to researchers.

There is no official treatment for misophonia.

Many sufferers are scared, confused and living with a disorder that has taken over several aspects of their life. Unfortunately, there are little to no available options. Doctors may be confused about treatment and whether or not the disorder exists. For some one with misophonia, this is a terrifying reality.

For those who don’t know, misophonia is (most-likely) a neurologically based disorder that causes an aversive reaction to audial and visual stimuli. In laymen’s terms, this means that noises like tapping, whistling, crunching and chewing can cause a fight/flight/freeze reaction. There is no cure or treatment. For more info, click here.

Several doctors and other professionals have decided, without much medical merit, that certain treatments may be beneficial to misophonia. However, misophonia has not been classified as a disorder (nor has it been effectively researched to the point of understanding origin, let alone treatment). Cognitive Behavior Therapy (CBT), neuro-feedback, hypnotherapy, a “Trigger Tamer App” and other treatments have been used with little to no regard for the origin of the disorder. This, of course, is worrisome.

In a recent article via the NY Observer, Dr. Jennifer Jo Brout talks about her worries for the disorder. Dr. Brout has been an advocate for over-responsivity for the past two decades:

Misophonia has been hijacked by a bevy of charlatans, many with spurious credentials, selling “cures” for the disorder. On social media and on the internet, “specialists” of various kinds with no apparent expertise deluged me, selling misophonia “apps” and potions that promised to “calm misophonia rage.” 

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When you Google misophonia, you get them. When you read mainstream articles about misophonia, you see their treatments and groups referenced in the articles. Instead of informed doctors or researchers, you find people promising “cures” to desperate sufferers. I know people who have been have bilked out of over $10,000 (and more), nevermind the emotional cost incurred.

Dr. Pawel Jastreboff, who coined the disorder in 2001, has worries about doctors jumping the gun and moving on to treatments so fast. He asserts that when it comes to the toted treatment methods that, “we do not have any clear clinical data.” Since there is not enough clinical data, this furthers worry when it comes to misophonia providers.

As of now, misophonia seems to be worsened by exposure.

The program at Duke University (Sensory Processing and Emotion Regulation Program) furthers this sentiment by saying, “[t]here is no evidence-based behavioral or device-based treatment for misophonia.” The program, run by Dr. Rosenthal, urges sufferers, “[a]t this point, there only are early small scale uncontrolled and pilot studies that have not yielded definitive results.”

screen568x568When asked specifically about the “Trigger Tamer App,” by Tom Dozier, Jastreboff had his doubts. While the trigger tamer app claims to be different from CBT, it involves exposure to sounds. This exposure is theorized to help users become “immune” to triggers. Despite lack of clinical trials, the description reads, “This (patent pending) app lets you ‘rewire’ or “repattern” your brain to reduce or eliminate reactions to your misophonia trigger.” Retail price of the app is $39.99. The Google Store ad for the product suggests that the “treatment” will be beneficial to misophonia sufferers, however it featured this warning: “AS OF THE END OF 2013, THERE HAVE BEEN NO SUCCESSFUL CASES OF ‘REWIRING’ A GENERAL TRIGGER SO THAT THE SOUND NO LONGER CAUSES A PROBLEM RESPONSE IN A REAL LIFE SITUATION.”

In Dr. Jastreboff’s opinion some of the available treatments may not only be false promises, or unable to help, but they may actually be making the condition worse.

Since he does not have the clinical studies and data to refer to (due to the providers failing to provide results that have been scrutinized in an ethical lab situation), Jastreboff makes his remarks based on what he has experienced. In regard to the Trigger Tamer App specifically, Jastreboff says, “I am familiar with this application, and I am concerned that it actually may make misophonia worse.” In regard to other treatments proposed, he believes neurofeedback is “neutral ― it will not help, but it will not harm” and that hypnotherapy is, “rather neutral, but with potential negative side effects.”

Right now patients should be cautious when approaching treatment providers. Doctors can be informed about the disorder via an information packet. This packet will explain to your doctor what misophonia is and any available coping methods. While there is no official treatment, the world of research is ever-evolving and there is great hope that research studies will lead to a better understanding of the disorder.

For sufferers an exploitative approach to medicine has led to turbulence across all aspects of the board. Some doctors have been fighting out against this (like Dr. Linda Girgis, The Healthcare Apocalypse) ― but that doesn’t mean that it’s going to change any time soon. While misophonia is just one lesser-known disorder, every day patients are struggling with the guides, diagnostics, and boxes that insurance companies and current health care systems have scrunched them in.

“People’s health and lives are at stake here. Those responsible for damaging the way healthcare is practiced in this country must turn over the reigns. The very hearts of the American people stand in jeopardy.”

— Dr. Linda Girgis, The Healthcare Apocalypse

Unfortunately, patients have been placed in a terrible position. Since medical providers aren’t given the proper tools to assess new conditions and connect properly with researchers, we are left in a disconnect. This has left us at prey for those that want to take advantage and earn a dollar off our misery. Disorders should not be cash grabs. We are human beings and we all, no matter our condition, deserve ethical care.

If you think you may have misophonia, feel free to check out this resource.

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