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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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What a week!!!

8/1/2015

4 Comments

 
Yes, it was quite a week of misophonia experiences and new endeavors. I'll start from today and work my way backwards...

Right now I'm back in Vegas sitting at one of my prior regular coffee place hangouts waiting to meet with a former colleague. I only landed about an hour and a half ago and yet it feels like I never left here. As much as I'm enjoying the northwest, just driving from the airport to the coffee shop made me realize how much I like the environment out here.

The plane ride itself was pretty turbulent (it was the closest I've gotten to becoming air sick in a long time), but for me the worst was just as we were about to land, someone started whistling. I could even hear it through my earplugs and for the life of me, no matter where I looked around me, I couldn't see who was whistling. It was the weirdest thing, and not something I've had to deal with on a plane, but between the rough weather and the whistling trigger, I was not a happy camper as we landed. As we debarked and we 
were walking down the bridge from the plane to the terminal, I heard a person whistling directly behind me, so I stepped aside and let him pass so the sound would be traveling away from me instead of directly at my ears. I bet he was the one who was whistling when we landed...

On a happier note, Thursday I joined an acapella singing group - and will be one of the founding members. Everyone was so nice and towards the end of the meeting, we all started to sing random songs and it was wonderful how, despite no one having met each other before, we sounded like we had been practicing together for a while. Very cool.

The group was established through a MeetUp.com activity and what I found to be very interesting is not long after I rsvp'd that I was attending, one of the other members emailed me to say he saw that I was connected to the UK Misophonia MeetUp group and that his daughter may have misophonia. Needless to say, I wasn't expecting a misophonia connection to come out of joining the singing  group - but I was hoping that perhaps getting back into the swing of singing might help alleviate the intensity of my misophonia sensitivity.

Unfortunately for me though, this first meeting wound up being a BIG source of triggers. When I arrived, there was only the organizer and one other person. I soon realized that the other person, who I sat next to, was chewing gum AND twirling a pair of earbuds in his fingers over, and over, and OVER! I tried blocking the visual triggers using my hair, but it was hard to feel like I was paying attention to him as he spoke when every time I looked in his direction, I was distracted by his gum chewing and earbud twirling. A few more people came in and when the woman who sat on the other side of me started bouncing her leg, I got up and shifted to the other side of the table. The visual triggers were too much!

As the meeting went on... I experienced more visual triggers, to the point where I actually shifted my chair back to try to use the person next to me as a visual blinder to the trigger. I'm sure I looked weird doing it but I felt I didn't know these people well enough to ask them to stop triggering me. It's funny... The gum chewer/earbud twirler at one point left the room (I thought "Yay. A little break from being triggered," and although he must've put away his earbuds... He started flipping a hard eyeglass case in his fingers over and over... It's like no matter what he had in his hand, he had to fidget with it. AAArrrggghhh!!!

I guess that's one of the things I'm going to have to deal with when being a part of a musical group. Musicians are always tapping their fingers/feet to the beat, whistling, or otherwise doing something rhythmic - even if the music is only in their head. It's going to be tough for me for a while but I'm hoping over time, once I get music back in my life the way it was when I was in school, that my sensitivity to triggers will decrease. (I posted a while ago about a Harvard study where they found there were neurological benefits to community singing - which is what I think I experienced back in my college/grad school days.) Time will certainly tell!
4 Comments
Alice Jackson
8/16/2015 08:28:53 am

I have misophonia well I'm actually recovering from it. I had cognitive behaviour therapy for it and I do know this won't work for all people and yes it hasn't cured me but it has made me so much better to the point of being in the cinema and not being annoyed by the person eating popcorn next me, by watching the TV with family when they are eating and no longer hearing them. I still haven't sat with my family eating without having music on yet but it's only time. I do know it wouldn't work for everyone but have you ever tried it or would you consider it? I also want to say my therapist did say I was the first person she has ever treat with the condition and that I did have it very bad.

Reply
Emlyn
8/18/2015 12:18:23 pm

Hi, Alice. Thanks for the email. I'm happy that you've been able to cope better with the cognitive behavior therapy. Last year I met with a therapist who had never even heard of misophonia before. I chose him because I saw in his website bio that he did CBT but also did a different type of therapy with his PTSD patients that, when I investigated further, I thought could be worth a shot for my misophonia. (Unfortunately, I don't see the doctor's bios on their website anymore, so I can't see what that unusual treatment was.)

When I first spoke to him on the phone to see if he'd take me on as a patient, he was very intrigued about my misophonia and I was impressed with how much he researched on his own in his interest to help me. We wound up working more with mindfulness meditation instead of CBT, and it helped with my stress somewhat, but then I moved out of state and stopped practicing my exercises. (I've got to get back into the swing of things again...)

Thanks for replying to my post. Best of luck with your misophonia journey for relief. :-)

Reply
Bonnie link
9/16/2015 06:49:51 am

Mindfulness is a great technique. If you have a chance for reading, I recommend, Hardwiring Happiness by Neuropsychologist Rick Hanson.
http://www.rickhanson.net/writings/books/hardwiring-happiness/

I wonder if the PTSD therapy you are referring to is EDMR. I've heard it mentioned before and am curious if it would have any effect on Miso.

Reply
Emlyn
9/16/2015 08:03:19 am

Hi, Bonnie. You may be right. EDMR does sound familiar. I never got a chance to explore that with the therapist back in Iowa but, since I haven't had a chance to investigate treatment options out here yet, it's something I can look into. Thanks for mentioning it!

I'll definitely check out that "Hardwiring Happiness" book too. Sounds like something I could use right about now. :-)




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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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