We do not now, or have we ever, allowed the suggestion of treatments, violence, or medications in our discussion threads. These will be deleted. While we encourage a discussion of the merits of research studies on treatments (ie, this may be used in a trial, etc) we do not list names of drugs, nor do we suggest persons use trial and error. While coping methods are accepted (yoga, etc), as they are non-invasive, we do not wish to provide “medical advice” as we are not experts. Furthermore, if you see a post that discusses a treatment, it is likely it is about research or written by a doctor. Ethically
I touched on this on our Facebook page, but I think it’s important to explain. We are by no means suggesting that we don’t want persons with misophonia to cope and recover. In-fact, we are actively pursuing research that can remedy this condition. Through science, we are closer than ever before to a misophonia treatment. It’s important, however, that people are their own advocates when it comes to potentially dangerous and false cures. Discussion of non-tested methods on the internet can go haywire since scientists are not sure what will harm the disorder.
As of now, there is no evidence that CBT will help misophonia, and more importantly, it is likely to cause harm. Misophonia is not the same sort of disorder as OCD or a cognitive illness, whereas CBT would thrive. Misophonia is a neurological disorder, and with that comes a different set of potential treatments. Memory Reconsolidation is likely to help, and the studies on this are active.
In the mean-time, you can view coping tips, and share what has and has not helped with you. Coping tips will not “remove” misophonia but they can lower your over-all tolerance and threat threshold. The calmer you are, the less time you spend trapped in fight flight. A sensory diet (designed by OTs, activities that replenish sensory integration) is also massively beneficial to misophonia. You can find materials such as weighted blankets that help with sensory integration, and there are many other meaningful ways that you can help yourself with misophonia, including holistic life-changes that reduce threat levels. We also share tips such as user-submitted headphone reviews for misophonia. If you have some to submit, please do!
There is a large difference between promoting coping skills and offering potential treatments. We do not, nor have we ever, advocated for untested treatments. In-fact, if somebody is suggesting that they can treat your misophonia they are likely taking advantage of you. Please also be weary of support groups that advocate for “treatment” as they are likely only trying to sell their false cures. This isn’t science, this is exploitation.
Since we do not advocate for these treatments it is often said that we are “blocking the discussion” but that could not be further from the truth. We support a full scientific advisory board and work actively with the International Misophonia Research Network to ensure that research on misophonia is taking a cross-disciplinary approach and that a treatment is within our reach. We are not selling snake oils, false cures, or encouraging persons to become their own lab rats. We hope that an informed scientific approach will help individuals feel hopeful for their future, but we also hope that they will take their health into their own hands, and not try potentially dangerous or outrageously expensive cures that will not help.
If these methods had worked, there would be many more people screaming from the rooftops that they were cured. The lack of enthusiasm is not because we are blocking anything, it is because there is frankly, nothing to be excited about, except for research. Misophonia research has taken leaps and bounds in the last few years. The Duke Misophonia and Emotion program, as well as NYU, and the wonderful work of Dr. Sukhbinder Kumar of Newcastle University and Miren Edelstein (PhDCan) has awakened a scientific enthusiasm that continues to foster.
If you are interested in helping studies, you can donate to the Duke program – a study that includes Dr. Kumar and Duke University is underway (The sound study), including the Memory Reconsolidation Treatment study that incorporates the work of brilliant neuroscientists Joseph E. LeDoux and Lorenzo Diaz-Mataix.
To be frank, we don’t suggest treatments for misophonia because they do not exist. We want to foster truthful information about misophonia, and we certainly don’t want anybody to be harmed by false advice. Furthermore, do not use the internet as your doctor!
This year, let’s help encourage research by sharing studies, information, and by helping bridge the gap in the scientific knowledge and false reports by being critical of what we read!
