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kmohoruk

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Posts: 17
Reply with quote  #1 

Hello Everyone, 

 

I figured that I would post my own update after seeing Sadears wonderful update (Onto the road to recovery my friend!) - especially since we developed our H (and in my case, an increase in my reactive T) around the same time. 

 

Here we go....

 

In the summer of 2014 (July) I was exposed to some gun fire with some ear protection on (but not enough) and had a increase in my reactive T and developed H over the course of the next month. In August I moved back to my parents house and have been residing there since. 

 

For most of the fall last year, I spent most of time in the house with my parents, and would only go out for runs or walks in the forests near my house. I wanted to talk to some sort of specialist before proceeding further.

 

It wasn’t until the end of the year that I was able to get into the Tinnitus Clinic at St Pauls in Vancouver BC. It is run by one audiologist named Glynnis Tidball (She’s been running the clinic for 15 years). Glynnis does the counseling part of TRT while another audiologist does the actual audio part of TRT.

 

I managed to get into the TRT clinic at the end of October for a group session, where I then proceeded to my first one-on-one counseling appointment booked (and have now had) for the end of Jan 2015. 

 

I found that once I started to get some sort of a control on my TMJ symptoms, as well as my anxiety that I then noticed that my H was less reactive to certain sounds that bothered me/ felt louder before (Scanner at the grocery store, passing traffic, some car horns).

 

I tried starting the sound therapy in December and unfortunately wasn’t able to continue the sound therapy with the audiologist who does the audio part of the TRT. Long story short, she wouldn't address my concerns regarding how the sound devices would cause my T to spike dramatically after taking them out at the end of the night (after wearing them all day). So I had to give back the devices before the refund period was up.

 

I have now had my first counseling session with Glynnis, and I can see see why thats such an important part of TRT. 

 

We talked for 3 hours (while my mom took notes very nicely in the corner [smile]

 

  • She addressed all my questions, and was very honest which I REALLY appreciated. At times she would just have to say.... example: “While some research shows that it may be because of this, we still don’t have a firm answer just yet”

 

  • We did some special sound testing which really didn’t bother my ears - a couple of times it felt a little uncomfortable but she was very careful not to do anything to cause pain. She came to the conclusion at least regarding the testing that was done along with all my 3 hearing tests that I have quote “beautiful inner ear hairs”. That made me laugh a bit. 

 

  • She actually thinks that my T may have actually originated in my TMJ, which I have had lightly when I was younger, and only got worse in the summer after being exposed to the gun fire in the summer.

 

  • I have always been a bit more of an anxious child, and she figures that my anxiety played a big role in bringing on my H. As at the time of it in the summer, I was so stressed out for a month as being exposed to the guns, that I had a mental break down and wasn’t eating for almost about a month and was only getting about 3 hours of sleep a night.

 

  • She explained to me that she doesn’t like doing LDL tests for the most part because it stresses and causes a lot of pain to patients. If they insist, she will do it. She says she gets a better idea by spending the time talking with the patient, and thats a better way for her to find out how severe the persons H is. I explained to her that my sensitivity is with high frequency sounds, as well as loud bursts of sound like car horns.  

 

We came up with a way to keep enriching my environment with sound. A good way for me is to have some music playing through my ipad. But the big one is listening to podcasts through my ipad - as they give a nice clear and consistent sound. I sometimes listen to about 5 or 6 a day! [smile] 

 

At the end of the session, she listened to my concerns regarding the audiologist who does the audio part of the TRT. We came up with a plan, Which is:

 

  •  Trying to get out and stay active

 

  • Protect my ears when I am on public transit in the form of using my light over ears Bose head phones

 

  • Continue to see the TMJ specialist that she referred me to, to help my TMJ issues (So far, I’ve learned lots of stuff to help keep my jaw loose)

 

And finally....To try pushing myself a bit by getting out into the world (going to malls, walking down the street etc..) and changing my views and feelings on sound. But if certain sounds get to uncomfortable then its ok to take a step back and take a break from that sound.

 

I am seeing her in about 2 months for an hour follow up, where I will fill out another Tinnitus questionnaire and maybe do some minimal testing or adjustment to the plan. 

 

In regards to my T, its still there. I think its maybe gotten a bit worse since the summer, but then again its hard to tell because mine fluctuates a lot due to sound and other factors. For the most part, it doesn’t bother me as much, and I try to remember that my situation could be a lot worse and that I’m lucky to have such wonderful parents who are looking after me.

 

I have also just thrown in an inquiry to a “TRT Clinic” on Vancouver island (1 hour drive and an hour ferry) to see if they deal with sound sensitivity as well. If they do, then that may be a plan B if my H doesn't get any better and I need to try sound therapy again.

 

Currently I am aiming to return back to my school program in the Fall of 2015. While I still have my bad days here and there, I am definitely feeling like I have a bit better outlook towards the future. 

 

I am trying to just take it one step at a time, and have been getting a lot of support by some close friends, my girl friend and my parents. I have been trying to stay as active as I can and hope to get back into running once my foot heals up. 

 

Currently, I am spending a lot of my time trying to stay focused and start brushing up on my school work for the fall and get used to studying with this new T.  I have started taking some transit again and so far its gone pretty well.

 

I’ve been startled about 5 or 6 times since i’ve been home. Its been nothing crazy, but I try and tell myself that these sounds didn’t bother me before, so its not doing any damage now. I’ve had some setback here and there, but I’m trying to push forward.

 

I have seen some improvement, and hope to continue down this path and will hopefully return to as close of a normal life as I can. Thanks again for everyone on this board for helping me out in those early months, especially Dan Malcore [biggrin]

 

I am wishing you all very well, and am sending out so many positive vibes! I hope everyone is able to find some sort of healing from this very challenging condition.

 

Cheers,

 

Kris

 

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Sadears

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Posts: 62
Reply with quote  #2 
Hey Kris,

Very glad to hear about your progress! How crazy is it that we both developed H at almost literally the same time..and to think I thought (and I'm sure you did) that we were alone in this struggle..it's a small world after all!

Kudos to you for seeking professional help. There isn't any clinics specialized in treating Hyperacusis or even Tinnitus in my area for that matter, so I did the Pink Noise on my own. But it sure is nice to see advice from a professional! Seems like the kind of things you mentioned are the kind of things people on here told me to do, like not being fearful, slowly entering back into the noisy world, etc.

As far as your Tinnitus, at least in my case, I find that it is in a way, in sync with my H; the more the H is aggravated, the more the Tinnitus is as well. Luckily, my T is very mild, but I figured I'd mention that as maybe you are having the same kind of sensation.

It makes me happy to see my post has had a positive influence on others going through this struggle, I'm glad to hear about your progress and your post! I'm no professional but if you have any questions or comments I'd be happy to bounce back and respond or discuss them. Good luck with your healing! Stay positive!

-Adam (or Sadears)
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Paulbe

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Posts: 176
Reply with quote  #3 
Kris, that's amazing your story could be mine as well, except for the part about gunfire and.  I still don't know what my trigger really was, but I suspect music and poor PA placement over a couple of years did their bit.  For me, the biggest help was getting back to work, and having a new boss who had had a real live acoustic neuroma and has real understanding of my situation.  Overcoming "that" fear and anxiety that forms a central part of this disease process is at least as central to regaining control of your life as any physical therapy may be (in fact I don't believe one can work without the other working).
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Cheryl_K

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Posts: 101
Reply with quote  #4 
Hi Kris,

Thank you for the very detailed, totally upfront accounting of what you have been through, and the time you took to write a most invaluable review of your counseling session. It is a great help to me to read about what to expect from a really competent and caring TRT therapist.

I wish you healing and success in school. It's great you're going back. That's progress.

I have long stretches (meaning one to three days) of no H and no T, while engaging in the "outside world". The cue for me to pace myself (meaning rest and avoiding outside auditory stimulation other than music, pink noise, and/or TV on low, sometimes two or three of these at a time, is when the tinnitus begins, at first low in volume, not so intrusive. If I ignore that, it gets worse, and if I let it go too long, which I sometimes do--when I am enjoying myself, then hyperacusis sets in, and I really have to go back a few notches.

You will have a cue that works for you. You might not want to escape--it may be an important class, or wonderful group conversations with other students.Sometimes I distance myself physically, just so I can be there. I've been known to listen to concerts from the lobby, not the concert hall. I don't do it that often, as too many people think they have to ask why I am in the lobby, and then tell me which way to the concert! What a pain. Just make up for it later, with relaxation techniques, pink noise, soothing music or nature sounds, and anything else you use to quiet your response. Pacing is key.

I hope you make these transitions smoothly. Don't worry so much about setbacks, focus on the lessons they teach you, so that your nonlinear healing process will be progressively onward and upward!!!

Cheryl
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Aplomado

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Posts: 711
Reply with quote  #5 
I got hyperacusis from gunfire also.  Firing one shot with a shotgun, while wearing earplugs.  I forgot to put on my muffs just once in my life, and that did it.
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Tensor187x

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Posts: 18
Reply with quote  #6 
It seems like H/ear sens is more common nowadays. What about all the soliders that fought during ww2 with no ear protection?! I blows my mind how just one simple mistake can cause that...my H is from 1 night at a club with no ear protection. [frown]
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Paulbe

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Posts: 176
Reply with quote  #7 
I think many WW2 survivors just didn't talk about it.  In WW1 they were often shot as "cowards", such was the towering wisdom of the day.  You would think, if Governments were sincere about caring for vets, there would be a whole lot more research into these conditions.  Thing is, we know they aren't sincere about very much at all.
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kmohoruk

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Posts: 17
Reply with quote  #8 
(Apologizes for taking so long to get back here! I had some family down for the weekend and missed all these awesome responses)

Haha yea I know eh Adam? I was amazed at how small this world was - especially when it came to the audiologists who help research and treat both of these conditions. I would say "Well I was talking to Audiologist X and they said blah blah blah...." and they would say "OH I know that audiologist" - It always makes me laugh a bit.

Yea that was the main part. The audiologist who helped with the "talking part of TRT" was very helpful, kind and genuine. I feel that unfortunately many people in the medical field forgot that notion when it comes to helping people, and what an important role that it plays

I'm glad to hear that you're doing so well as well my friend. As I've heard from many people on here, baby steps is key - but long as you keep moving towards that goal, then it usually happens. [biggrin]

_______________________________________________________________________________________________________________________________

Hello Paulbe,

It's funny you mention that. I found that to be my experience too. When I would get startled a little bit by like...a car horn...or somewhat of a louder sound. I would have to just calm myself, and remember "this never bothered me before...it's ok...." and not check my T. Once I started doing that then I noticed some form of progress. 

It's good that you now have a boss that understands (thats the hardest part)! I hope he is doing better now though. 

_____________________________________________________________________________________________________________________________

Hello Cheryl,

Yes, I was amazed at how big of a difference it makes. I think a lot more doctors, audiologists...restaurant servers....pretty much ANYONE that has a job that involves some sort of customer service should realize the importance of treating people like human beings and being empathetic and how it can make such a difference. 

Thats good that you're able able to realize when you need to take breaks. I do that as well sometimes too, when you can feel your ears starting to get a little "tired"

Thank you Cheryl for the kind words. It seems like you're doing better yourself which I am glad to hear [biggrin]. The fact that you are going out and seeing concerts  (even from the lobby) amazes me. You are a very strong woman, and quite the trooper! I also now take no shame in having to protect in certain situations, and use it as a time to inform the public if people ask me why I'm wearing my headphones in certain situations sometimes. 

Keep it up. and like you said...pacing is the key [smile]
_______________________________________________________________________________________________________________________________

Thats a real bummer to hear Aplomando. It always amazes me how some people can go out there and only use ear plugs when shooting and be fine. While others all it takes is one shot and thats it. This T and H is quite the mystery.....

How are you doing now?
_______________________________________________________________________________________________________________________________

Thats a real good question Tensor187, I won't lie I often wonder that myself! I can't hep but wonder if those people were even helped back then. But I figure I would pass along this little tidbit if it makes you feel better....

I remember when I first went to see one of the audiologists to help me with the audio part of TRT, and I mentioned that I felt embarrassed that I was so young and I have T and H and am in THIS situation. She just smiled and said:

"Well, just so you know...before the end of the day I will being seeing at least 5 or 6 more kids half your age (I'm 26) who have T and H and some are worse then you. So it's very common"

BLEW.ME.AWAY! My generation will have many hurtles for it's time. Obesity, income inequality....and T and H. It is becoming much more common...so if there is any silver lining then hopefully it will bring more attention/research to both of these conditions.
___________________


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Paulbe

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Posts: 176
Reply with quote  #9 
He's a she, and yes she's doing well.  She has no hearing in her right ear now, but she's still alive, vital, and very skilled.  Her compassion, understanding and sympathetic intolerance of wussiness is inspirational. 
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Aplomado

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Posts: 711
Reply with quote  #10 
I recovered once, and had a relapse.  I'm a lot better now, but still have a long way to go.
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Paulbe

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Posts: 176
Reply with quote  #11 
Aplo, what form did your relapse take, and how would you compare it to the initial injury?
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Aplomado

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Posts: 711
Reply with quote  #12 
Six months of TRT "cured" me after developing hyperacusis.  Close proximity to a bagpipe player gave me a relapse three months later.  It was unpleasant, but not as bad as it was originally.  In two months I was close to being recovered again after re-starting TRT.  Then a car horn in my ear relapsed me again.  I've been recovering ever since then.  I still have a ways to go, but am much better than I was a few months ago.  None of my relapses were as bad as my original, though horrible in their own way.

Let's just say I hate car horns and pipepipes.
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Paulbe

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Posts: 176
Reply with quote  #13 
I don't think there's a lot of difference between car horns and bagpipes.  Car horns are more musical but apart from that...
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Aplomado

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Posts: 711
Reply with quote  #14 
Well, they are both the devil, as the Waterboy's mama would say...
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Cheryl_K

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Posts: 101
Reply with quote  #15 
Hey Kris--

Thank you again for the kind words and words of wisdom. I've been noticing how our viewpoints and perceptions of our own places in the world change so much after becoming hyperacusic. It brings out different things in different people. It's an opportunity to become more thoughtful and helpful in ways we never needed to experience before. Having this website is a great way to bring out the best of us in a challenging situation which we have no idea why or how, or if and when it will ever end.

Yes, the "talking" part of the therapeutic protocol is essential. It's a shame that so few therapists are really studying about how to go about it. I have to confess that I had no idea about how it really felt when people used to come to me for help with tinnitus and chronic pain from injuries in the affected areas.

I read the books available at the time, but with far less understanding than I have now. I now have to remind myself to be more patient with "healing" professionals with "credentials" who haven't a clue when it comes to certain conditions, don't admit it, and don't make referrals to someone who might do a better job. Or people would chose to stay with someone because they took their insurance, and someone who might have been better qualified (notice I wrote "might have) did not. The decision to remain with a therapist who was not the most qualified is often a forced choice for fianancial reasons. Insurance practices need to change. In circumstances like that, a less qualified therapist for any specialty is ethically required to obtain supervision from a therapist who is known for this work. Sometimes easier said than done. What do we do if we can't find one?  

I remember, at the time of my accident, I thought to myself: "Now I'm going to better understand some of the things that people tell me." That was because, immediately, from ambulance attendant, onto the emergency room, then to the "follow up" in the doctor's office, nobody got it. In addition to hurried medical personnel trying to rush through the process (the ER waiting room is usually filled, sometimes really overwhelmed), insurance rules can be really wacky. There is often a restriction on how many injuries can be attended to in one visit, so the injuries to my face, ear, and neck, along with many of the symptoms I was describing, were not even noted. That followed me from doctor to doctor. Go fight that one!

It's very frustrating to go to someone for help and find out that they don't really understand, especially when they say they do. To make things worse, as patients we generally don't present exactly the same way as other patients with the same or similar diagnoses. Even for ourselves, we can experience different symptoms and frustrations from session to session. As baffling as we are to therapists just beginning with this specialty, we can also baffle ourselves. It's a lot to take in. I applaud those therapists who can put themselves in our shoes without having actually gone through what we have. It's also difficult for many therapists to deal with our seemingly slow progress, or lack of progress, and our setbacks, even if they know in theory that they occur. Doctors and office personnel can lose patience as well. It's kind of like my bright son with dyslexia and dysgraphia--in ninth grade, he was finally given the proper support and modifications (same work, different methods of organizing and handing work in). The powers that be decided to remove all support after one year of success, as now that he knew how to do well, he lo longer needed the supports and modifications that helped him to do well.

From what I've been reading on this message board, I've come to suspect that this is endemic in hyperacusis practice--not totally pervasive, but perhaps a major factor in actually setting up so many of us to experience setbacks. The therapist Kris described sounds like one who really understands. She appears to include prevention of setbacks in her treatment plans from the very beginning.

And Paul--

I love the way you described your therapist:

 "Her compassion, understanding and sympathetic intolerance of wussiness is inspirational."

It should be quoted in every "how to" book for any type of therapist. Heck, it should be a whole chapter. I especially loved the irony in the phrase "sympathetic intolerance."

Best,
Cheryl



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kmohoruk

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Posts: 17
Reply with quote  #16 
Thank you Cheryl for the very deep response. You always put so much thought and care into the messages that you post on here - I really appreciate and look forward to them.

I know exactly what you mean regarding "therapists who don't know about the conditions that they claim to help treat". When I originally went for TRT (the audio part at a separate clinic) to help with my H, the clinician who was helping me never listened to any of my questions, thought I didn't trust her, and wouldn't listen to my concerns when the sound devices that she prescribed caused my T to sky rocket when I took the devices out at the end of the night. I took them back and she essentially banned me from ever coming back since she only makes money on the sales of the devices at her clinic. It was extremely depressing.

I am however lucky that there is another TRT clinic about 3 hours away (that includes an hour ferry). This woman seems like the real deal and gave me an hour of her time by phone, answered all of my questions, and uses a wide variety of devices to help her clients (The previous clinic only used one type). I was almost awe stuck by how nice and genuine she was. Right when I was thanking her she just sort of said...

"I'll be honest Kris. If you are willing to cross a body of water to come special to see me at my clinic... then you better bet that we will try and do everything that we can to help you and try as many different plans of actions that we can. I hope you DON'T have to come all the way to my clinic, but if you do then the door is always open for you"

So it seems that there is still some good clinicians out there, they are just a little few and far between...which is sad. But I think that many more people are getting involved with study, research and treatments for many auditory conditions - so I think theres hope for the future. 

I can defiantly say that I have met many role models of people who have T, H, or both along this journey that it now seems that I am taking. I am trying to take it one step at a time, and just enjoy each day as it comes.  But *knock on wood* it seems that sunnier days are ahead for me. I hope the same fate for everyone on this board as well.

Thanks again, Cheryl!


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