Ever since I learned I had misophonia, I've been looking back at my past to try to figure out when the condition really kicked into high gear. Although I can recollect occasional instances throughout my teenage years and twenties, I found myself more and more sensitive when I left Philadelphia to move to DC. There are a lot of things that happened during that time: becoming older into my (gasp!) thirties, dealing with much more stressful work situations (including getting laid off three times over a period of ten years  and working for a bully of a boss at one of them), but I think one of the biggest changes had to be going from the most fit time of my life to the worst shape of my life in only a couple of years. Yes, part of that had to do with those work stresses but it also had to do with a drastic drop in my exercise habits.

So over the past year, I've really been working hard to get back into shape in the hope that maybe getting back into better physical shape could help me deal better with these misophonia triggers. In addition to getting a new bike to take advantage of all the great trails in the area, I've also been exploring various gyms to find a good fit with one of them. (It helps being able to take advantage of the LivingSocial,com deals, since I really didn't know any of the gyms in the area and the one where I belonged in the east coast didn't have locations here.) A couple of months ago, I tried one gym and I wound up having to walk out in the middle of a spin class because one of the songs on the instructors playlist had a LOT of whistling. I wasn't prepared for that trigger and it was too much for me to focus on the class.

Yesterday, I was in the middle of a personal training session at a different gym and a song came on with lots of whistling. Even with all the fans and other gym noises around me, it was very frustrating. When I mentioned it to the trainer (because it's very hard to do bench presses when all I wanted to do is put my fingers in my ears), she said she thought the song was actually called "The Whistling Song," or something to that effect. It wouldn't have been so bad once I could get past that song until a little bit later, I heard one of the other trainers whistling that same song. Arrrrgh!!! She could tell I was having trouble focusing on my reps and offered to ask the other trainer to stop. I was so grateful, although a bit embarrassed too. I said that I'm going to remember to bring my earplugs to my next session (tomorrow). Hopefully, they'll help...

Okay, I'm long overdue to post a blog entry, but I have a good reason... From two Thursdays ago until last Tuesday, I was at a writer's conference and between the jet lag coming back and immediately trying to play catch-up at work when I got back, I got a little side-tracked from this blog. It was an amazing conference with wonderful, NY Times best selling authors and such creative writers... Very inspirational for my own writing endeavors, which lately have been focused on writing a book to help promote better awareness about misophonia. I even pitched my book idea to two agents, both of whom were interested in what I was trying to convey. Their feedback from our 10 minute pitch sessions, as well as what I learned from the conference, gave me even more ideas to better reframe my book. So now I'm taking a step back to do some rewriting, now even more excited than ever...

Even the moments when I wasn't at the conference allowed me time to do some introspection about my misophonia, and reflect upon how it's affected my life over the years - even before I knew what I had was an actual medical condition. Typically, these thoughts occured in the wee hours of the morning, when my body woke me up shortly before the sun was about to rise.  It was during those quiet moments, when I sat on my hotel room's balcony listening to the ocean's waves and watching the early morning light pierce the dark night's sky, that I thought about what I learned in the various classes, keynote speeches, and even in general conversation with some of the other writers.

Many people with whom I shared my story were very intrigued about misophonia - some even commented how the condition seemed very similar to the sensitivities by other people they knew. At the end of the conference, I even had a conversation with one of the volunteers who suggested I look into some special teas including: Camomille (one that I do enjoy), "Tension Tamer" (I think I may have had that one once), as well as something called Valarian tea. I will admit that I am more of a tea drinker than coffee, so if it might help me cut some of the edge off of the triggers, I will certainly try it.

I will say that something funny happened during the last couple of hours at the conference, when I had dinner at one of the restaurants recommended by the shuttle driver when I first arrived. The restaurant was located right on the edge of the ocean and I was able to watch one last sunset over the water before heading back to the frigid weather of the Midwest. Sitting there in the last few warm rays of the sun, listening to the ocean hit the rocks was very relaxing and my mind started flowing with many ideas for the book - memories of times that I hadn't thought about in years. I knew I had to write everything down in my little black book before I forgot. Just as I was finishing up my dessert and jotting down a few more thoughts, one of the hostesses came over to me and asked about what it's like to be a critic. I can certainly see why she made the assumption that I was a food critic, since I was eating alone at a nice restaurant and writing in a little black book, but that was definitely a first for me. (I've traveled alone a great deal when attending conferences or other business trips.) I explained to her that I was there for a conference, but if I had been a food critic, they would've gotten high marks across the board for food, service, and atmosphere. It was the perfect way to end my trip. I hope to do it again next year! 

Please excuse the delay in this latest blog update. For the past week, I've been feverishly trying to wrap things up at work and prepare for a writer's conference, where I am right now. Given the time zone difference, my body woke me up early, so I decided to enjoy the scenic ocean view and the sounds of the waves crashing upon the shore while playing a little blog catch-up... (More to come about this conference in subsequent posts.)

Today I wanted share some of my favorite tools for helping to deal with my misophonia trig gers. For a while, I thought I had lost one of them, but found it right before I left on my trip... My Jabra Rhythm noise cancelling headphones! (See the black headphones next to a set of my earplugs in the photo to the left.) What's funny is that I originally purchased those headphones from a Verizon Wireless store near where I work because I damaged one of the wires in my old cell phone hands-free set, which I used all the time to have phone conversations with my very close, but physically long distance, friends. I told the salesperson that I needed a good new set of headphones because I frequently damage the wires on all my past headphones (I haven't found a Bluetooth wireless set that feels comfortable to me yet and has good sound.) He suggested the Jabra Rhythm because of it's noise cancelling capabilities. I love it for so much more (and not just because I seem to recall they didn't cost much more than $35 at the time...)

The device has three sizes of paper thin rubber sheaths to put on top of the speaker portion so the person can use the one that fits most comfortably in their ear. The solid portion is barely bigger than that metal screen disk at the top earpiece in the picture. (There's actually an air cavity between that disk and the outer rubber surface, so it squishes down to less than half of the diameter of one of those earplugs. They are the most comfortable earbuds I've *EVER* found and the salesperson wasn't kidding when he said they were noise-cancelling. I wear them at work all the time to block out the multitudes of misophonia triggers surrounding me and I swear... I don't hear anything outside my music! Sometimes even when my phone rings - which is only a couple of inches away from my computer monitor. (That only happens when I listen to a song very loudly because the triggers at that moment were loud or frequent.) It also has great sound clarity for my cell phone conversations too. Even the people on the other end say they can hear me very clearly through the earbud microphone.

So, when I misplaced those headphones, I tried to use one of my old, non-microphoned, earbuds from an old music-only device. It made me realized how spoiled I've been with those little Jabra gems... I couldn't get the old, solid plastic, music-only earbuds to sit right in my ears. They were extremely uncomfortable and kept slipping out too. They didn't even block any of the trigger sounds at work, probably because they didn't sit well in my ears to begin with. Let's just say that those first few weeks of the New Year were very frustrating ones to me. I even went back to my foam ear plugs (the version in the photo is the only type that I like for it's comfort and noise cancelling ability) because if I can't have music as my background "white noise," no sound at all is better than having to deal with the open office triggers surrounding me.

Right before I left for this conference though, I started to clean my car out a bit so there'd be nothi. I was thrilled to find my little Jabra headset in the shadows right underneath the front edge of my driver's seat. It must've fallen out of my purse pocket. What a relief to find them again. It sure made the long hours on the plane much more enjoyable.

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.)

Yesterday was a very exciting day for me with regard to my misophonia relief in the workplace... The HR person in my office said that they were willing to relocate me to help minimize my exposure to misophonia triggers. When I first approached him a couple of months ago, I was hesitant to even mention the condition and didn't think the firm would be willing to help address my frustrations but boy was I wrong. The firm wants employees to be comfortable in their work environment and was willing to work with me to help find a solution. From our conversation, I realized that the firm would be devistated if I quit because I was uncomfortable in my work environment if there was something that could've been done to make my situation more bearable.  Very different experience from my dealings at prior firms.

I almost wonder if it's not just the attitude of the firm but the Midwest "culture" out here in general. I just moved here at the end of 2011 when, for 40+ year prior to that, the furthest WEST I've ever lived was DC. (Essentially, I've lived in major cities between DC to Boston.) Life out east was very intense compared to the Midwest, and I can recall many times where I politely (even meekly) asked someone if they could stop doing something that I now know was triggering my misophonia. Most of the time they responded with a stern, "Why?" or kept doing the trigger even more; but ever since I moved to the Midwest, I find that when I'm in the same situation, people are much more understanding about my request. (Heck, one gentleman in a window seat across the aisle from my window seat switched sides with me because I nearly died by the perfume scent trigger from the woman sitting in front of me.) The sincere generosity and kindness of the people I've met since moving out to the Midwest isn't lost on me, and I think it's why I felt I could approach my firm with how my misophonia has been affecting me in the workplace. I'm glad my instincts were right and I did not hesitate to let them know that their concern about my situation is VERY much appreciated.

There aren't too many areas in the office where I'd be completely removed from triggers, but the one place where I'll be relocating is an area that I suggested. It will keep me fairly close to my team, it is has fairly good sound obstructions (including higher partitions), and it distances me from general circulation traffic as well as some of my known triggers. There may still be some exposure to triggers, as it does bring me closer to the reception area, but I think the space is enclosed enough that I should be buffered from the majority of my workplace triggers. Only time will tell...

My appointment with the Neuro-otologist was certainly the most interesting doctor’s visit pertaining to misophonia so far. It started with a preliminary hearing test by his audiologist, that was the most comprehensive one I’ve ever had in my entire life. In addition to my pressing a (very ergonomic) button to let her know when I heard soft beeps of various pitches in either ear, she also did several other ear tests that I’ve never had before:

     ·   An eardrum pressure test

     ·  An Otoacoustic Emission (OAE) test – Which was an echo test to determine the quality of the cilia in my cochlea. (As above average as my hearing is, there were still a couple of low frequencies that evidently didn’t bounce back, signifying that some of those cilia may be damaged.)

     ·  A word repetition test – I had to repeat the words I heard in from a recorded voice in each ear. Evidently, a person could still have difficulty understanding speech even if (s)he has excellent hearing.

 Luckily, I passed all my hearing tests with flying colors and it was fascinating to see the results on the computer screen behind me in the sound booth. After going back to the waiting room for a little bit, I was brought into another examining room where I described my misophonia  experiences to the neuro-otologist’s nurse and then waited for the doctor. I didn't have to wait too long. He was a very nice gentleman who, to my relief, had other patients with misophonia. We discussed my triggers, and I even relayed my thoughts on the drive back from the Mayo Clinic where I realized that perhaps my misophonia isn't as situational as the prior neurologist thought. I explained that although I don't react the same way when I do the triggers than outside sources of my triggers, I do react - usually by stopping myself when I realize I'm doing them.

He asked if I had ever tried medication as a means to find relief. I explained that my learning of the condition was so recent, no one had ever tried prescribing anything. The main treatment  suggested to me was to get noise cancellation devices (similar to hearing aid devices, but producing  white noise "static" in each ear) for about $2,000. I said I didn't want to spend that kind of money at this point, especially when it would only address the audio triggers I have, not any of the visual/tactile triggers (which are just as severe for me as the audio ones), or even my smell/taste triggers. The doctor  gave me a prescription for the lowest dose of clonazepam possible, and even suggested that I cut those pills in half. He said to try them for a couple of days and if they don't seem to help my triggers, or if I didn't like the side effects, to stop using them. I've tried them for the past five days and I find no hint of relief from my triggers. The only thing I've noticed since taking them is that it's harder for me to wake up in the mornings. Oh well. I can only keep trying...

Happy New Year everyone! I'm really looking forward to putting last year behind me and starting with a fresh outlook in 2013. I'm not one for New Year's resolutions but I did have an "aha" moment this morning about an area of discomfort in my life...

In recent years, I've become uncomfortable around large dogs. I'm not afraid of dogs, and little dogs don't bother me. (My family used to have terriers and I've had no problem playing with my friends' little dogs.) It didn't even phase me when my office had "Bring your dog to work day" since most of the dogs were fairly small and pretty much avoided my desk area. In recent visits home though, I've found myself overwhelmed by larger dogs. As a result, I know that some people in my family think I hate dogs. Needless to say, coming from a family of dog lovers, it's not something about which I'm happy, especially when it's announced that "Emlyn hates dogs."

You may be wondering what this all has to do with my misophonia. In earlier posts I mentioned that my triggers aren't limited to sound. Sound is certainly the biggest source of my triggers, only slightly greater than visual triggers, but tactile triggers are a close third. When I feel the vibrations of people resting their feet on the chair on which I'm sitting, I react by scooting my chair further away from them. Sitting on a bus, I'm always annoyed when a person's coat or bag touches my leg. Even the feel of certain fabrics against my skin aggrevate me.

So, this morning as I laid in my bed reflecting on years past and the many exciting happinings that I already have planned for the new year, a thought occurred to me about my discomfort with dogs. I don't hate dogs. I am just extremely uncomfortable by many of the tactile sensations I experience with larger dogs - like them licking me, drooling on me, putting their wet nose against my skin, jamming their nose up my crotch, or jumping on me with their full weight. Yes, I understand that's dogs way of showing affection, but I don't like those sensations. They annoy the heck out of me and when I can't get dogs to stop, even by pushing them away,  I usually just get up and remove myself from them altogether. (Very much like my reaction to sound and visual triggers.) The only time little dogs lick me is if I hold out my hand to let them know I'm friendly and they're not very slobbery. They don't shove their nose up my crotch either (and size isn't the issue when we're both on the same couch). Larger dogs seem to want to express their affection to me, maybe as a new person to get to know, and as much as I wish it didn't bother me, their means of affection really make me uncomfortable. Even now my skin is crawling from remembering those tactile sensations.

Maybe it is related to misophonia, and maybe it isn't. I'm sure not many people enjoy having a dog's snout jammed in their crotch, but even putting that experience aside... Knowing that many of my misophonia triggers are tactile and that I do enjoy playing with little dogs, it may not be such a far fetched idea either. 

I'm sure the more I learn about misophonia and apply that information to my past, I'm sure I'll discover other connections. Hopefully, this coming year I'll be able to get closer to finding some relief from the syndrome too - or at least promote more awareness about the condition to inspire some doctors/researchers to investigate it further. I'm especially looking forward to meeting with the Neuro-Otologist tomorrow. It will be very interesting to hear what someone who specializes in both the ear and the brain has to say about misophonia. (I'm told that he's seen other patients with it before, which is promising.)