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The "Butterfly's Whisper" Blog

Welcome to my blog. I hope by sharing my own misophonia experiences, others who are frustrated with misophonia sensitivities will discover that they're not alone. I also hope that people who may not have misophonia will gain some insight about what it's like to have this condition.

Please feel free to post any comments or use the "Contact Us" page if you have any questions/comments you don't want to post online.

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Early results of 2014 fMRI study

1/30/2016

7 Comments

 
I know I've said this a lot of late but again I must apologize for the long lapses between these blog posts. I've actually been quite under the weather since the Wednesday before Christmas. (I've had a cough for nearly five weeks that I can't seem to shake.) I seem to always get a prolonged cough within about 6 months after moving to a new city but for some reason, this time it's knocked me on my butt for WAY longer than any previous experience. Very frustrating.

On a good note, the break in rain and bright sunshine this morning inspired me to attend my first writing MeetUp near where I live and I'm so glad I did. I met so many friendly people and hopefully this will be the spark that gets me writing more regularly again. I do have some exciting misophonia news to share and now's the perfect time to do so...

I've tried to keep in contact with the London researcher to find out about the results of the fMRI research study in which I participated back in February 2014. After reaching out to him again to see if there was any news to share, he told me that although he's still in the process of writing the formal paper, they did come up with some interesting findings. To quote him (since some of this is a bit over my head and I'm going to have to do a little more research before I'd be able understand it well enough to try and paraphrase what he wrote...):

     "To give you a short summary of the fMRI data we found  higher activity in anterior insula in misophonic participants (compared to controls) when they are listening to trigger sounds and not when they are listening to other sounds. We also found that a part of the frontal lobe called vmPFC (ventromedial prefrontal cortex) has higher myelination in misophonic compared to controls. 

     Now the anterior insula is known to be involved in feelings of the body and is known to map physiological state of the body.I think our data clearly establishes misophonia as a disorder and I hope that our paper should settle this issue (and hopefully the medical community will start taking it more seriously.)"   - Dr. Sukhbinder Kumar

Hopefully this bit of news will give hope to other misophonia sufferers (along with friends and family who also care about the people they know with misophonia) that misophonia is not just in our heads (psychologically) but is a real, physiological condition that needs more research!!!

I'd like to thank Dr. Kumar and his team for not only taking a chance to research misophonia when so many others in the scientific community still don't recognize it as being worthy enough of a condition to warrant research. I'd also like to especially thank Dr. Kumar for allowing me to participate in the study despite my being from the United States. I know that they were hesitant to include me since they could not reimburse me for my travel expenses; but I wholeheartedly believe that misophonia research is so important in this journey for relief for all sufferers that I'm willing to do whatever I can (even if it means traveling out of pocket) to help bring more awareness about misophonia to the general population and offer assistance to the scientific and medical professions whenever I am able. I feel honored that my contribution to the study was able to help with these exciting new findings and look forward to reading the published report when it is complete.
7 Comments
Dave
1/30/2016 06:31:28 pm

Interesting snippet from Wikipedia regarding the anterior insula:

The anterior insula processes a person's sense of disgust both to smells[49] and to the sight of contamination and mutilation[50] — even when just imagining the experience.

Reply
Michael sharkey
1/31/2016 05:49:02 am

I have no idea what this info means other than they think they found irregularities in miso brains compared to the control group. Thank you very much for participating in the study and sharing the information

Reply
Jim
1/31/2016 10:40:50 am

Dr. Kumar presented over Skype at the Misophonia conference in Chicago this past October. What his data suggests is that there is a "short circuit" to the amygdala with people suffering from misophonia. This is what he's talking about with the unusual connection between the vmPFC and the left anterior insula.

How we react to unpleasant sounds is very different from how people without misophonia react. And that increases over time in that we also react less to pleasant sounds than others. In other words, the short circuiting is what makes us vigilant. And when we're vigilant, we can't relax and enjoy what we should be able to enjoy.

This gives me some hope that there is a potential physical cure for this disorder in re-establishing whatever natural pathways should exist in the brain for sensory input.

So I thank you, Emlyn, for taking part in the study. You're helping establish that this is neurological in basis and not some psychological choice we've made. We can use cognitive therapy - but only in helping us cope and in helping us deal more positively with the emotional stimulus.

Reply
Annie Kemp
1/31/2016 03:08:59 pm

Hi Emlyn,
Thank you for your blog,and with that, giving me some hope that someone is researching misophonia in the UK. I am 58 and have suffered from this condition for fifty years. My triggers are such that being able to anywhere is becoming quite a challenge ! Thank you also for taking part in the study, you have given me some hope that misophonia may start to be recognised in the UK

Reply
Emlyn
2/6/2016 12:54:57 pm

Thank you Jim and Annie. Yes, I too saw these results as very hopeful. Too often I've experienced doctors who focus on the death of my parents as possibly being a psychological cause of my misophonia - putting aside the fact that I experienced misophonia triggers long before they passed away.

I also notice how the majority of discussion about misophonia is limited to aural triggers, yet so many people like myself also experience visual, tactile, and other sensory triggers not having to do with sound. That's one of the reasons why, even before this study, I was convinced that misophonia is a neurological issue. It affects more than just the auditory system!

Annie: Your comment about misophonia only starting to be recognized in the UK intrigues me. I've always felt that the UK was way ahead of the pack in acknowledging misophonia. The UK Misophonia MeetUp is very well organized and the person who created it (his name is Guy), also created the informative misophonia website that was the first one I found when I learned about misophonia. (http://www.misophonia-uk.org/)

I think misophonia is a condition that medical professionals and the general public are not fully aware about yet, since the term was only coined in 2001. In some ways it may be a condition like ADHD or Autism where little was known about the conditions early on but once it becames more known in the mainstream public, more sufferers will realize that they're not crazy... There is a medical reason for their sensory discomfort.

Once that happens, doctors and scientists will recognize the need for more research and once that happens, misophonia will be a much more recognizable condition and more people will realize they have it. At least, that's what I'm hoping will happen. I believe scientists won't spend time or money on research unless they know there's a demand for it and they won't know about the demand until it's seen as a prevalent condition.

Just my two cents though...

Judith Krauthamer link
2/22/2016 05:36:44 am

Wow! I had suggested that the insula (anterior cingulate cortex) and sub-cortical region of the limbic system, the hub for anger, pain, and sensory processing, would be implicated. This is really exciting!

Reply
Emlyn
2/22/2016 08:48:38 pm

Hi, Judith. Glad to hear these results back your theory. Maybe when the study is officially published there'll be a push to do more research along these lines. :-)

Reply



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    About the Author

    Emlyn Altman has been suffering with misophonia for over 35 years, even though she only found out about the actual medical condition much more recently. As frustrating as the condition has been over the years, her heightened sensitivities across all the senses considerably influenced her talents within the visual fine arts (particularly sculpture), music (singing, piano, and many other instruments), writing, and culinary backgrounds, as well as professional achievements as an architectural lighting designer. Her goal in developing this website is to promote more awareness about misophonia and help other sufferers as well.


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