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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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Getting back into the swing of things... Literally!

6/25/2013

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Hooray! Yesterday I got the "go ahead" from my doctor to start working out my upper body again (as long as I didn't push it too hard.) It felt so good to start hitting the kickboxing bag again. Granted, I still didn't do much with my bad shoulder (coach's orders), so simple jabs on that side and no push-ups or even jumping jacks. Did a bunch of extra sit-ups/crunches instead. Ugh! I did have a LOT of pent-up frustration/energy from last week's headache with the car; so I'll admit that I compensated by wailing on the bag with my right side instead. It felt *so* good to finally be able to release all that energy.

I noticed something interesting this morning with regard to my misophonia triggers. I usually put the morning news on the TV as I'm getting ready and more often than not, I find myself scrambling to find the remote to mute or change the channel anytime a commercial with whistling comes up - even to the point of running from the bathroom to get the remote on my bed. (Whistling is my absolute worst trigger.) This morning, a commercial with whistling came up and even though it was a bit annoying, I didn't rush to mute or change the channel.  I thought to myself, "I wonder if the Pristiq is finally starting to kick-in..." It didn't last though. By the time noon came around and the firm got together for our monthly staff meeting over lunch,  I found myself being annoyed again by some of the whistlers waiting on line to get their food. I even had to take my ponytail down to create a hair "blinder" to shield my peripheral view from on of my coworkers a couple of tables away from me who was bouncing his foot.

I'm not sure why I seemed to be okay when I woke up this morning but not a couple of  hours later.  I take the Pristiq in the morning so it should be the most potent then, not weakening by lunchtime. The only explanation to me seemed to be that, since I still have trouble waking up in the mornings due to the pain killer that I've been taking for my shoulder (albeit half pills now, instead of whole pills), perhaps the drowsy effects of the pain killer were lessening the effects of the whistling triggers. I've been taking them before going to bed because my doctor warned me about their drowsy side effect. Once I had my morning latte and wasn't drowsy anymore, my misophonia reactions to triggers were back to the way they usually are.

Might be something to ask my doctor what she thinks... If I'm onto something, I'm not sure what that'd mean. There's no way I'd be able to function if I'm constantly in that drowsy state, even if it did lessen trigger reactions.
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Dogs in the Workplace

6/21/2013

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Yes, you read correctly... My office is kicking off the Dog Days of Summer with "Bring Your Dog to Work" day at the office. For the most part, the dogs are well behaved (even while most of them run loose) but every now and then, one triggers my misophonia. With all the exposed wooden architectural beams/structure, I hear the clickity-clack of their paw nails on the wooden floor above my head / desk, the high-pitched whining of the dogs trying to get their masters' attention (I can just picture the dogs crying, "Stop working and play with me!!!)  I couldn't believe it but I even heard my old pod-mate's dog loudly lapping his water bowl in my old location a floor below. (Thank goodness I moved up to the mezzanine level, otherwise that water bowl would've been right next to my desk!)

All this week, I had been so distracted with what was going on with my car that I kept forgetting my
favorite, noise-cancelling earbuds. (I put them in my jeans pocket when I scrambled to collect the stuff from my car on Saturday before the body shop owner drove me to pick up my rental car.) For the most part, leaving my earbuds home hasn't been too much of a big deal. Much of the office has been out this week, either on business trips or on an early summer vacation, but as soon as I heard my coworker's dog lap up her water this morning, the trigger noise was so loud and annoying (she was a very thirsty dog), I was thankful that I finally remembered my earbuds today.

That in itself created a funny situation because, as I mentioned in previous posts, those earbuds are so good that I don't hear anything around me. Unlike my previous location where I faced people as they approached me, now my desk is situated so that I face away from the entrance of my area. I have a tiny, convex mirror just above my computer monitors that, when I actually look at it, I can see people behind me. For the most part though, unless someone stands in my peripheral view or taps me on the shoulder, I'm completely oblivious to my surroundings. So, this morning, after the dog started lapping away at her water, I plugged myself into my Lita Ford album and a little while later, I sort of barely heard one of my coworkers behind me try to get my attention. I unplugged myself and before he asked me what he came up to talk about, he asked what is the best way to get my attention, since I don't like sound. I told him that it's not that I don't like sound, only certain sounds, but he could either wave his hand in my peripheral view, tap me on the shoulder, or even toss something above my head. (I said the last thing in jest, because I had friends who would throw a crumpled up piece of paper or a rubber band at me to get my attention.) Again, all I can say is that I'm glad that my coworkers are very understanding of my condition. He could have just as easily gotten annoyed that I was "plugged in" and walked away in a huff, instead of asking the best way to approach me.

Anyway... Going back to "Bring Your Dog to Work" day... Don't get me wrong about what I said earlier. I like dogs and my coworkers' dogs are really cute and friendly. If it weren't for the fact that my shoulder has been bothering me after the accident, I might have even brought my cockatiel into the office for today's event. I can just imagine how popular my remote location would have been with all the dogs in the office if I had done that. Then again, whereas all the dogs have been relatively quiet (other than a random whine or slobbering here and there), I don't see how I could've brought my little guy into the office. As small as he is, he's got a BIG mouth, especially if I leave him alone for a few seconds. I'm not kidding. When I lived in the DC area, I was able to hear him "yelling" after me while I was at the strip mall behind my apartment... I was fifteen floors below him!!! With all the walking around I do at the office coordinating with coworkers, not to mention with all the water I've been drinking for my fitness class, I wouldn't be able to leave him for even a few seconds. He's actually very quiet when he's on my shoulder. I just don't trust that the dogs in the office wouldn't try to jump up near him and freak him out.

Oh well... Maybe one day they'll have a "Bring your Bird to Work" day. LOL!


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Trying to move onward and upward

6/20/2013

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If I wasn't already exhausted trying to deal with my misophonia on top of a very busy professional life, dealing with the car accident on top of all that just makes it that much harder. Being under doctor's orders not to work out my upper body (due to my rotator cuff injury) is very frustrating. I could sure use some good rounds on the kickboxing bag to release some of my pent up energy / annoyance over the past week's events. I haven't stopped working out altogether. My coach has me walking a couple of miles a day (which doesn't require swinging my arms like jogging would), walking up/down stairs, and keeping up with my regular eating routine. It's still not quite the same as the workout that I'm used to doing.   :-(

The pain killer/anti-inflammatory meds that my doctor gave me are pretty intense. They've helped my rotator cuff, but getting up in the mornings to go to work has been very difficult. (I've become very attached to my snooze button over these past few days.) I asked my primary's nurse if I can get off of the meds entirely, but she said to try cutting the pills in half first. Oh, and I forgot to mention that when I did see my primary at the Urgent Care on Sunday, she said that she hadn't found any fMRI locations or other pertinant misophonia studies in her research of the medical references at her disposal. I told her about the fMRI study in London, and asked her to let me know if she does come across anything or any other physicians who might be interested in investigating my misophonia condition.

Tuesday, when I was walking one of my miles per coach's orders... I remembered that an old college friend has an uncle who is a neurologist (or neurosurgeon) and my friend became a doctor too. Athought it has been a couple of years since we last spoke, I emailed him in the hopes that maybe his uncle, or even one of his fellow colleagues, might be interested in exploring my misophonia. Haven't heard back from him yet though. Hopefully, soon. (I figure since summer starts tomorrow, many people are going on vacation now.)

Other than those updates, it looks like I'm going to be driving a rental car for a while. The other driver's insurance adjuster hasn't been to my car's body shop yet. (Evidently, there have been a LOT of car vs deer accidents lately, and this guy's the only adjuster for his company in the entire state.) The body shop did give me a preliminary estimate of the body damage, and my jaw nearly hit the ground. They hadn't even taken into account the damage to the rear  wheel / alignment / axle(?) but just the amount that they showed me so far, it won't surprise me if the final amount ends up being in the five digits. That doesn't even include my medical expenses and the car rental that her insurance is also handling. Oh yeah... As far as the car rental is concerned, I've already had the rental for about a week and the body shop said that once they finally get authorization to go ahead, it'll take them two weeks from that point to complete the work. Ugh!
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Snag to my workout release

6/16/2013

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Yesterday ended my first week doing the Farrell's extreme body shaping... In more ways than one...

It was a good, lower body resistance-band workout and I've been pretty excited about the past week in general. As tough as the classes are, the coaches, and even my fellow classmates, are very supportive and make it fun. I had a lot of errands planned for after class, in preparation for my best friend coming to visit me next weekend, but you know what they say about the best laid plans...

Right after class, I got into my car that was parked right in front of the entrance to Farrells, started it up to get the A/C going to cool off, opened my protein shake and just as I was drinking it... WHAM!!! A car side-swiped the entire left side of my new car. My car was PARKED and it wasn't even three months old!!! I can't even begin to tell you how angry I was. Nearly 30 years without an accident and this happened. The woman finally moved her car in front of mine and I got out saying, "Are you #@@%!%$@  kidding me?!?!?!?" I was so shaken up, a guy from Farrells actually called the police from my cell phone because my hands were shaking too much to touch the right areas of my screen.

When the police finally came, I told him what happened and then he spent nearly 30 minutes talking with the other driver- even putting her in the back seat of his police car. As they were talking, the woman's friend drove up and handed a wallet to her, right in front of the policeman. (Was she driving without a license?) When the policeman asked the guy when was her last drink, the guy said around 4 a.m. I was so annoyed at the whole situation, I kept pacing back and forth while they were in the policeman's cruiser. The policeman finally came out and handed me a paper with all the key information (name, DOB, address, insurance, case #... etc.), and said to me that charges will likely be filed. He also said she seemed under the influence of SOMETHING. Just my luck. I knew I should've tried to go to the earlier 6 a.m. class.
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I thought the damage to my car was just superficial body damage but when I drove to the body shop for an estimate, I could tell there was definitely something wrong with the car. I heard a slight grinding and even the wheel didn't feel right. The guy at the body shop that helped me, whose name is Junior and is the Owner's son, told me that because she hit my rear wheel and bent it inward at the top, my car is unsafe to drive. I had to leave the car there and Junior drove me to the airport to pick up my rental.  

On top of my car's damage being worse than I thought, at the time of the accident, I thought I wasn't hurt but later that afternoon, my left shoulder started bothering me. I took some naproxen and took it easy but even this morning, my shoulder was bothering me and the naproxen didn't even help. I called my primary, hoping to leave a message asking to see her tomorrow afternoon, and found out she was working the Urgent Care Clinic this morning. I immediately went over and after examining me, she gave me anti-inflamatories and pain killers for my rotator cuff and then told me I couldn't work out my upper body for the rest of the week. I was so bummed!!! At least while I was there, I took the opportunity to ask her for a prescription for the Pristiq samples she gave me for my misophonia when I saw her a couple of weeks ago for my annual physical.

[Sigh...]  As much as the whole situation is frustrating, I'm very thankful that I didn't hang out after class like I usually do. If I went to my car a few minutes later than I did, she would've squished ME, instead of just messing up my car. I am still annoyed that I can't continue with my workout this week. At least dealing with my car/shoulder issues might help direct my focus away from misophonia triggers. (One can hope...)

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Work and Working Out

6/13/2013

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Well, today is my fourth full day of my 10-week "extreme bodyshaping" class (I don't count Saturday's day of  body assessment tests). They are definitely tough workouts and I really love the kickboxing classes. Being one of the only "newbies" in the group, I have MANY coaches keeping an eye on me to make sure that my form is okay. From what they tell me, I've picked up the routines a lot faster than many people. (One coach told me yesterday that my kicks were much better than hers during her first week of training.) It's pretty exciting and as long as I stick with it, I'm optimistic that I should achieve the results I hope to see.

Unfortunately, I haven't noticed any improvement with my misophonia trigger sensitivities since starting the intense workouts. In fact, just yesterday I had to walk out of a team coordination meeting barely 15 minutes after joining everyone. There was only one seat open in the room and when I sat down, the person to my left was biting his nails, the person to his left was drumming his fingernails on the table, and the woman to my right was incessantly clicking her ball point pen. I wasn't able to ask the person to stop drumming his fingernails since he was so far away and I felt uncomfortable asking the guy to stop biting his fingernails. It was also hard for me to ask the woman to my right to stop because  she was talking as she was clicking her pen but at one point, when the conversation switched to the other end of the table, I whispered to her, "Can you please stop clicking your pen like that?" She stopped for about 5 minutes but then she began clicking away the moment she started talking again. There were just too many people around me creating various triggers, so I quietly collected my things and walked out of the meeting.

About a half hour later, I noticed the people who were at my end of the table (the ones creating the triggers) left the room but the project manager and a few other people continued discussing some items. I went back into the room to hear their discussion and catch up with anything I may have missed. There was a moment when I was able to discretely speak to the project manager alone and since I had already told him about my misophonia a couple of months ago, when I started to apologize for leaving the meeting early, he smiled at me and made a indirect comment that indicated that he understood. (I forgot what he said exactly.) It's nice to know that most of the people here are very understanding of my situation.
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Frustration release?

6/10/2013

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Today I begin a 10-week, six days a week, cross training regime at Farrell's Extreme Bodyshaping. (I bid on the program at a silent auction last month and won. Little did I know what I was getting myself into.)

This past Saturday we had our initial fitness assessment for the program where they tested our flexibility, how many situps/pushups we could do in a minute, as well as a timed mile. (I really don't like running!) My coach is very energetic and friendly. He's supposedly one of the top kick-boxing instructors there too. Tonight's our first kick-boxing session and I'm hoping to see if perhaps venting some of my misophonia trigger frustrations on a padded punching column might help give me some relief. (It couldn't hurt. LOL!)

On another note, I've been on the Pristiq for over a week now. Haven't really noticed any significant changes, but at least it hasn't been making me groggy like the clonazepam did.
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Misophonia fMRI Research Study

6/7/2013

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I'm finally back in the Midwest (almost didn't make it with the tropical storm cancelling/delaying my flights). Hopefully, I'll be grounded here for a while, so I can play catch-up at work and home.

Anyway, I wanted to follow-up my previous post with some additional information about the fMRI study that I mentioned. On the "Scientific Research" section of this website, I've put a link to download the questionnaire for interested candidates. The study organizer, Dr. Sukbinder Kumar, also wanted me to convey that, due to the time commitment and limited funding for travel expenses for the study, it may be difficult to accept volunteers who reside far away from the facilities - which are located in London.

In addition to the addition of the fMRI study information on the "Scientific Research" page, I also included a link to a Journal of Neuroscience research paper that presented results from a research study on the amygdala part of the brain. (The amygdala processes negative reactions to trigger sounds.) It's interesting to see some of the brain scan images in the article that highlighted some of the areas of the brain that responded to unpleasant sounds. Hopefully, with more research like this one, scientists may help target a physiological cause of misophonia - which ultimately can lead to sufferers being able to one day find relief.
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Doctor's visit and more misophonia research

6/3/2013

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Well, here I am on yet another business travel adventure, this time in North Carolina. The flight over wasn't too terrible, Misophonia-wise. I wound up getting to the gate right about the time they were about to board the plane, so I didn't have to hang out at the gate too long. Usually, I like to get to my flight early but the closeness of my arrival was partly due to the fact that I didn't realize I had a very long screwdriver in my computer bag from when I was wiring up a custom light fixture sample. I was so embarrassed when TSA pulled me aside to go through my bag (I swear I didn't realize it was there), but since the screwdriver was part of a set that belongs to my company, I asked if I could bring it back to my car. (Thank goodness my home airport is very small.)

Anyway, just an update after my annual physical with my primary. We have a very interesting talk about my misophonia. She had received all the reports from my visits to the Mayo Clinic and to the Neuro-otologist and I also brought the DVD with my 3D brain scan, and the associated reports from the radiologists, that I got from my trip to the MRI specialist back in March. I mentioned my thoughts about trying to have an fMRI scan done to see if it can detect areas of the brain that become more active when I'm exposed to triggers. She said she'd have to do a little more research first (since she has access to many more resources in the medical industry than I do) and would get back to me. She mentioned she wanted to be aware that some of these procedures may not be covered by my insurance, but I told her since my company signed us up for a high deductable plan, anything that's not preventative medicine would come out of my pocket anyway, so I wasn't as concerned about it. I know this is not going to be an easy, or inexpensive, journey for relief.

One thing that she offered was a medication that's used for anxiety and muscle issues. (I had explained to her my triggers are really bad at the office.) I mentioned that the Neuro-otologist had given me a prescription for clonazepam, but I didn't like it because it made it very hard to wake up in the morning. My primary said she wasn't surprised because that medication is a sedative. She offered me some samples of Pristiq, which she said is not only non-sedating, it also doesn't have any weight changing side effects - which I was happy to hear. She said that it would take a couple of weeks for it to take full effect. I'm only on day six, so hopefully I'll have something to report in another week or two.

On another note, I recently learned about a new study in the UK where they're going to use an fMRI to study the effects of triggers on people with misophonia. (As mentioned above, that's something of interest to me.) I immediately contacted the researcher as soon as I heard about the study, and very shortly after my initial email, he sent me a questionnaire to fill out. I've got my fingers crossed that they'll accept me as a candidate for the study.
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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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