Happy Anniversary, Sensehaven.com!

12/17/2013

(I actually wrote this post last Saturday night, but since the iPad didn't write my title correctly, the edited post date doesn't match when I originally posted it - 12/14/13)

Anyway, I don't know whether it's better to say happy anniversary or happy birthday but one year ago (12/14/12), I launched SenseHaven.com while embarking on my journey to find relief from misophonia - the kick-off post being the experiences during my trip to the Mayo Clinic. I knew my time there would be important to document in tbe blog but in my mind, the ultimate goal of the overall website was to promote more awareness about misophonia to sufferers and non-sufferers alike so that others like me wouldn't have to suffer for decades not knowing there was actually a medical reason for their selective sensitivities.

Since SenseHaven.com was launched, nearly 22,800 unique visitors have visited the site from around the world, and I have you all to thank for that. So, THANK YOU!

I have some interesting news that arrived yesterday evening and, given SenseHaven's milestone, the timing couldn't be more perfect! I received an email from the researcher conducting the misophonia fMRI study with the official go-ahead to be a participant in the study. (My official test dates are in mid-February.) I'm very excited about the news!

Hopefully, this will be the beginning of many more research opportunities to come in the near future. (I've even started developing some potential research ideas too.) More research = better understanding, which hopefully will lead to more universal awareness (not only within the medical community but also by the general public). This will eventually lead to more tolerance towards sufferers and perhaps a consensus for how to successfully treat misophonia.

Taking one step at a time eventually allows people to climb mountains!

4 Comments

Cordelia

12/18/2013 02:50:05 am

Emlyn,
Have you gone to any of the audiologists who treat misophonia? We're taking my daughter on Monday to Denver. I am buying the jabra headphones for her also! That's how I found your blog. The study in London sounds intriguing.

Emlyn link

12/18/2013 10:52:22 am

Hi, Cordelia. I was originally diagnosed by one of the audiologists on the misophonia-provider.com website and although at first I liked how she treated me; over time, I was very disappointed with her demeanor, poor communication, and in general her lack of medical professionalism. (I come from a family of physicians so I know what is good versus poor behavior.) I will not name her here, because it may have just been a personality thing between her and me that might not be an issue for you, but I would not go back to her ever again (BTW, I haven't seen anyone in Denver yet, so you have nothing to worry about from that particular doctor I saw.)

I would assume that most audiologists would have a better handle on misophonia than other physicians so I imagine you and your daughter will have a positive experience. The first audiologist I saw (the one who diagnosed me) offered me brown noise ear devices (for $900/ear) as a coping method, but since a significant number of my triggers are visual, not auditory, I couldn't see the purpose of spending $1,800 out of my own pocket for a coping tool that would only address a fraction of my problem.

A couple of months later I saw an audiologist for a hearing test as a preliminary analysis before meeting with a Neuro-Otologist, but she only gave me an assessment of my hearing abilities (way above normal). We didn't really discuss anything other than the hearing test results. The neuro-otologist was familiar with misophonia, since he had a few other patients with misophonia. He offered me a prescription for clonazipan to see if it would help with my stresses over triggers, but unfortunately that didn't work.

I had a physical with my primary physician a couple of months after that and she suggested we try the prescription Pristiq, which I did for a couple of months, but didn't really find any change in my trigger sensitivities.

In general, other than my bad experiences with the first audiologist, the other audiologists/physicians with whom I met were very nice and tried to help me with possible solutions - based on what I conveyed with my experiences. Right now though, my earplugs and Rhythm earbuds are still my coping tools of choice.

Please do let me know how it goes with your daughter in Denver. It will be interesting how an audiologist who is knowledgeable with misophonia works with a younger person. I'm also interested in hearing other people's experiences, especially if they are positive. Given how far I've traveled in my quest for relief, if you do have a good experience, I may seek out your audiologist in Denver. :-)

I am looking forward to London - although the idea of having to be completely still for a test while being bombarded by triggers makes me a little nervous. All in the name of science though, right? :-)

Thank you for your comments. Best of luck with your daughter's upcoming audiologist visit.

Cordelia

12/19/2013 08:00:10 am

Thanks for the encouragement. Cheyenne does also have visual triggers, I believe. She doesnt like it when there is a bag near a corner, or a towel hanging on a hook without space. Trigger or associated ocd.?

Emlyn link

12/19/2013 11:30:41 am

Well, we're all in this together, sufferers and connected people alike. I'm glad to be of support. The more we all help each other, the more quickly we can hope to find relief.

Even though Cheyanne is seeing an audiologist, in my opinion, I'd recommend sharing whatever triggers she may have, even the ones that aren't sound triggers. When I saw the neuro-otologist, and even the neurologist at the Mayo Clinic who I saw a couple of months earlier, I told them about all my sound, visual, tactile, and even the few olfactory triggers too. I believe in full disclosure to give doctors as much info as possible for them to help me.

In fact, I wrote out all my triggers in a notebook and grouped each trigger under those same headings so that when I went to any doctor, it was a simple matter of them photocopying the pages to easily add them to my medical file. It definitely sped up the examination process than if I verbally relayed them out loud during the exam. (Also helped me to not forget any...) The doctors were able to skim through the long list and then we could elaborate on items that caught the doctor's interest or continue our discussion onto what our next steps could be.

Hope that helps. Best of luck.

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About the Author

Emlyn Altman has been suffering with misophonia for over 40 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.

The "Butterfly's Whisper" Blog

Happy Anniversary, Sensehaven.com!

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