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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.

Contact ME

My Inquiry to an NIH researcher about his brain imaging study...

1/11/2013

5 Comments

 
Having lived for 12 years just a couple of miles up the road from the National Institute of Health (NIH) medical campus, I had an idea to see if there were any doctors/researchers at NIH studying misophonia - or if there were any similar studies. I was excited to find a study about "Neural Modeling and Brain Imaging of Tinnitus" that's currently in progress. It seemed very interesting and, given the connection between tinnitus and misophonia sufferers, and even though the study is closed to new participants I contacted the chief researcher to see if he might know of any other studies/researchers at NIH that might pertain to misophonia.

He replied very quickly and confirmed my understanding that there isn't much research being done on misophonia in general. (He only found 8 scientific articles on misophonia.) Although he said he didn't know anyone doing misophonia research at NIH, he suggested that I look into some of the research being done on synesthesia, "... a neurological condition in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a secondary sensory or cognitive pathway." (Evidently, there is a lot of research being done on synesthesia.) I can certainly see how synesthesia could have similarities to what happens with misophonia - since misophonia sufferers do experience emotional responses to triggers stimulating any (or all of) the five senses (in varying degrees). 

I'm always open to any suggestions that leads to even a hint of relief from this condition, and will definitely contact synesthesia researchers to learn more about their studies. (Of course, I'll post any new information I find.)
5 Comments
Jade link
2/26/2016 02:56:05 pm

I have misophonia, synethsesia (sp?), and tinnitus. I'm really enjoying reading your blog. <3

Reply
Emlyn
2/27/2016 01:33:08 pm

Hi, Jane. Just a follow-up to my previous reply (which may be below this one)... I was just looking at the International Misophonia Research Network Facebook page (which I just joined) and noticed they had a post regarding a synesthesia researcher that was supposedly approached by someone in their network to do a research study connecting synesthesia with misophonia. You may want to check out the IMRN Facebook group. :-)

Reply
Emlyn
2/27/2016 11:34:53 am

Hi, Jade. Thank you for your kudos. Your feedback means a lot to me. :-)

A couple of years ago another person emailed me through the site saying she had synesthesia on top of her misophonia too. It must be a very unusual experience for you.

I'm curious... Do you find that misophonia triggers create synesthesia experiences/sensations and not just annoyance or anger? What kinds of sensations trigger your misophonia? (I ask about "sensations" because my misophonia is triggered by certain visuals, tactile sensations, and even smells - not just sounds.)

Reply
Jade
5/5/2016 09:09:35 am

Sorry for replying so late! I was going through my e-mails and noticed you had posted. My misophonia triggers do not cause any synesthesia experiences at all. Synesthesia is pleasant and artsy, misophonia is hell.

Reply
emlyn@sensehaven.com
5/21/2016 01:39:57 pm

No worries. I've been quite busy lately too (hence the long gap between my recent posts). Interesting that the misophonia triggers don't cause synesthesia experiences. Hopefully there will one day be a cure to the misophonia trigger hell we experience. :-)




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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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