Often I am emailed, messaged, and generally bombarded with messages that ask: “Should I try experimental misophonia treatment?”. People are willing to fork up thousands of dollars for these treatments, and sometimes more for plane tickets across countries, and even across oceans. I by no means want to insult these people – it’s their money, their life, and their choice. I understand that misophonia is extremely polarizing, difficult, and essentially life-ruining. I get that these treatments offer some hope – if so and so on an internet forum found relief, than why not you? However – there’s a great likelihood that the persons on internet forums haven’t found relief for misophonia. In-fact, how do you know they have misophonia at all?
I don’t want to get into a conversation about how people on the internet can be liars. I’m not your grandmother, and I’m certainly not conversed that every person I’m talking to is stranger that hides in dark corners and waits to take advantage. Except, sometimes people are trying to take advantage. Whether these treatments are available for insurance or not, and most often are not, the person providing your ‘treatment’ is making money off every session. Sometimes they make money off ‘consulting’ about your case. Basically – your pain, suffering, and legitimate illness, are making them serious money. Maybe they do care about you – maybe they do think that their ‘cure’ is going to change the world. Fine. Then they should have it tested, thoroughly researched, go through clinical trials, and then – and only then – should they be charging you for their “treatments”.
The Duke Misophonia and Emotion Regulation program has a disclaimer about experimental misophonia treatment.
On Allergic to Sound, Tom has some great thoughts about these so-called treatments. In his article, he suggests the practice of selling these treatments, “is unacceptable because the patient has no way of knowing whether they’re buying from someone who’s interested in making money…. or an individual who genuinely believes in their misophonia treatment… or a combination of the two. In each scenario the outcome for the patient is potentially the same.”
Even if your treatment provider has “Dr.” in-front of their name, that doesn’t mean that their treatment is viable. It also doesn’t mean their treatment is viable if they are a behavioral analyst. As Dr. Brout, founder of the IMRN says in her Observer Article, “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.”” Real treatments take time to develop. They’re not as fun and as intriguing as the promise of an instant cure. Research, essentially, is a boring practice that takes place in a lab and numerous studies. People often google and search “quick misophonia cure” “misophonia treatment” or “get rid of misophonia now”, but, if they were searching “misophonia research” they would see that a potential cure is possible, and that’s because of real research – at universities. Instead of blowing $4,000 on false hope – sufferers have the very real possibility of investing in research that can yield real results. For me, that kind of power is exciting. You can find more about the potential treatment study here. This study is not the first, and was first examined at NYU by top neuroscientist Joseph E. LeDoux on rats. Research takes steps.
I can’t tell you what to do. I can’t tell you not to try these experimental misophonia treatments. I can say that there’s no evidence that they’re going to work. Evidence takes more than anecdotal studies and people saying that it worked on the internet. Testimonials are not the same as research studies, as clinical trials, and evidence. In my opinion, we’re being taken advantage of. Apps, sprays, and neuro-whatever treatments aren’t going to help you with your misophonia. Coping tips, a sensory diet, and stress management can be helpful, but as of yet there is no clinically proven treatment for misophonia.
At the end of the day, if you want to spend your hard earned money on false hope, I can’t stop you. I really can’t. I can tell you all day long that it won’t work. I’m not saying this just because I feel it won’t. There’s simply not enough evidence to say it will work. If some mild coping is what you’re looking for – there are much cheaper, more efficient, and less worrisome ways to do so. These false treatments could cause more damage, especially since we don’t know exactly what they do -again, not enough research. It’s your risk to take – but, it might very well be too much of a risk. Instead of paying people for treatments, I urge you to consider the possibility of funding research – or, at the very least, holding off until your money can go to a real, medically-proven, safe treatment.
Want to learn more? Join a Workshop with Dr. Jennifer Brout or Duke CMER at Misophonia Education.