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Meeotch

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Posts: 4
Reply with quote  #1 
Hello all, first time poster here and I've really enjoyed both the site and this board so far. I have significant hyperacusis and mild tinnitus. After considering all my options, I finally decided to go through TRT with a qualified audiologist.

Well, after 2 days of trying to "tough it out", I had to put a pause on my treatment due to a flare up in all related symptoms. I am concerned that it is both the nature of the broadband noise, and the implementation, that is backfiring on me, so I am seeking perspective on my clinicians strategy:

1. The noise being used is technically not pink noise, but apparently fine tuned to my hearing tests. If I were to describe it, it sounds like a hissssss, lacking in low frequencies and very prominent in the highs, which seem to be the most aggravating.

2. I am using fancy $6k sound generators, but even the minimum volume setting feels too loud. My audiologist described the process of setting the volume as: "raise the level until the sound is annoying and uncomfortable, then back it off one notch". Well, using this strategy sets the volume louder than my tinnitus, and may be why my overall symptoms have gotten worse.

I thought the general strategy was to start with extremely low volumes an gradually work your way up? I'd love some perspective on this, thank you so much.
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EDogg

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Posts: 174
Reply with quote  #2 
Hi Meeotch,

I have experienced a very similar issue with my TRT broadband generators (Amplisound) with marked exacerbation of my tinnitus and ear fullness/pain after wearing for even a short period of time. Did you have LDLs tested and if so, do you mind sharing? I have very low LDLs in the higher frequency range: from 70 dB at 1k to down to around 40 bB at 8 kHz. I determined the higher end presentation was exacerbating my symptoms and asked my audiologist to have the top end cut out after 2 kHz. They are much more comfortable and do not appear to cause the same issues. They went from a intense SHHH sound to more of a cat purring sound.

Sound generators should be “set it and forget it” devices. They should be comfortable. If not, you need to address this with your audiologist, perhaps with a similar strategy as proposed above, based on your LDL profile. Others have also been down this road (search Rob x2 posts).

Best,
EDogg
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Meeotch

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Reply with quote  #3 
Thanks so much EDogg. Perhaps you have a more specific link to Rob's discussion on the topic?

Despite my hyperacusis feeling significant, my LDL's are generally in the 80's and 90's across the spectrum. I explained to my audiologist that my symptoms tend to manifest post exposure as opposed to during exposure, and so I may play guitar at 80db for 30min - 1hour, and be left with symptoms of hyperacusis for days.

I have read Rob's success story, and that helped cue me in on the possibility that the higher frequencies could be the culprit. I will definitely be working with my audiologist to address both the volume and frequency issues, but just wanted to reach out to see if others had problems starting TRT.

I am questioning her instructions on two counts:

1) Setting the volume of the broadband noise to just under the threshold of annoying, even if that still means higher than my tinnitus level.

-As a result, in 2 days of TRT my tinnitus has been the highest I have ever experienced. Tinnitus treatment specifically indicates the broadband noise should not be used as masking. However, since my chief complaint is hyperacusis, my audiologist has chosen this approach.

2) Starting TRT at this upper threshold with no taper in volume or duration.

-Other success stories mention beginning with extremely low volumes, and perhaps only 30min/day at the start.

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EDogg

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Posts: 174
Reply with quote  #4 
Hi Meeotch,

Glad to see you are reading success stories. That’s a great way to approach this.

What sort of symptoms are you having post sound exposure, if you don’t mind me asking?

Also glad to hear you will be bringing these questions to your audiologist. Make sure you get them answered to your satisfaction so that you can proceed forward in treatment with confidence that you are on the right track.

I very much concur with your impressions re: the initiation of sound therapy. I’m no audiologist, but I’ve spent enough time learning about this and speaking with many professionals and patients, to have a good idea of how treatment is approached. The key to treating hyperacusis is desensitization. This occurs slowly, over months, with purposeful re-introduction of sound, along with counseling (TRT program). I have had it explained to me that it is like weight lifting.. you don’t start of benching 500 lbs, rather you start low, increase your reps, increase weight, increase reps, and so forth. Same goes for sound therapy. Start low volume and comfortable maybe for 20 min twice a day x1 week. Slowly increase wearing time over weeks until you can tolerate 8 h. Then maybe bump up the volume a little and wear for shorter periods again.. increase time slowly until you reach 8 h, and so forth. Pushing your limits at the very start does not seem like a good idea.

I also read somewhere that treating hyperacusis is not like giving a shot or vaccine. It’s more like custom tailoring a suit or dress (maybe my audiologist told me this!). Each patient is unique and requires a personalized approach.

Best,
EDogg
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Meeotch

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Posts: 4
Reply with quote  #5 
Thanks again EDogg, I just wanted to post an update.

I visited my audiologist a couple days ago, and she helped me lower the volume and adjust the high end frequencies of the broadband sound. The changes have made everything more tolerable, but I will be going in again next week for more tweaking.

Basically, I need to lower the high frequencies even more (think brown noise). I have the volume set quite low, so low in fact that I'm unsure if it is therapeutic. I can hear the noise if I'm in a quiet room, but in all other situations it is drowned out. Does this sound about right, at least for starters? I think with brown noise, I'll be able to get the volume up a couple more notches. Cheers!
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EDogg

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Posts: 174
Reply with quote  #6 
Great news, Meeotch!

Clarify the volume question with your audiologist when you see them next. The low volume you describe sounds fine though, for starters. Some folks wear them turned off at the beginning to get used to having stuff poking in your ear! It’s an odd feeling for me, at least. Once you work your way up on the volume, the broadband sound should act as a nice sound “cushion”, helping you better tolerate external sounds. I am still at the very low volume stage too. Sounds like you are on the right track.

EDogg
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Meeotch

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Posts: 4
Reply with quote  #7 
Another update for the thread:

I had another appointment with my Audiologist, and again we tweaked the broadband noise to have even less high frequencies. This has uncovered a potentially troubling issue: reactive tinnitus. Throughout these first couple weeks of TRT, I have been noticing a high-pitched ringing in my ears. Initially, I thought it was coming from the tone of the sound generator, since it would go away when I took them out. So we reduced the high frequencies, and we reduced them some more...

Now I am still hearing this ringing with the modified tone, and my Audiologist said it could be reactive tinnitus: perhaps the broadband tone is triggering the ringing tone, which is actually tinnitus and not the sound generator. This is a strange concept to me, since I have had mild tinnitus for years now, and it has always been a constant background ringing tone that pops out in quiet environments.

I'm hoping that if I just continue to keep my sound generators at low volumes, eventually this reactive tinnitus will go away? Can anyone comment or relate with this issue? Thank you!

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rodmccain

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Posts: 225
Reply with quote  #8 
Dear Meeotch,

I have both reactive and kindling T with H.   I tried the generators and seemed to have the same problem.  My ears did NOT like them!   I stopped using them.

This is my personal experience. 

Take care,
Kathy McCain
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EDogg

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Posts: 174
Reply with quote  #9 
Hi Meeotch,

I have sound reactive tinnitus as well. I believe, at least in part, mine is somehow linked to my hyperacusis. To me, they seem to get worse or improve together. My sound generators also cause my tinnitus to react a bit, although less than before when I had them at factory settings. My tinnitus pretty much reacts to all sounds, yet is also present in silence as well. Super high pitched.. metallic crickets is how I describe them. I believe my audiologist said not to be too concerned about the tinnitus reacting..it apparently can rev up a bit, particularly when you start treatment. The reactivity, if you will, of the tinnitus likely will improve with desensitization process. It can take some time and always good to remind yourself to be patient with the process. It takes time for the brain to rewire. Definitely a good question to bring up with your audiologist though.. for clarity sake.

For encouragement, you should search for Laurene’s old posts in the archives. She had very severe hyperacusis and reactive tinnitus and successfully treated it, after years of hard work, with TRT. I found her success story to be incredibly encouraging, she no longer actively posts, but the good info is all there in the archives. I’m sure there are many more who have overcome similar challenges and are archived in there as well.

Best,
EDogg
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rodmccain

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Posts: 225
Reply with quote  #10 
EDogg

My T is similar, but i have up to 7 different sounds. 

May I ask when you say H, what are your symptoms?  I do not have real pain with sound now.  I had the burning pain for about one  year....all the time right after the noise trauma. it slowly got better.   

My H is a hearing problem.  The whole world is on HIGH VOLUME.  It is not emotional it is REAL.  I have no hearing loss per regular hearing test.  It is my understanding there are two types of H,  loudness and pain.  There may be people that have both.  It seems to manifest itself a bit differently with each person.  Both are very horrific conditions.

It would be helpful for people like myself,  when posting on the board to be specific regarding symptoms. 

Thank you and God bless, 
Kathy Mc
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EDogg

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Posts: 174
Reply with quote  #11 
Hi Kathy,

First of all, I find it so encouraging to hear that your burning ear pain slowly subsided over a years time. I hope mine follows a similar course. My ear pain can be described as a mixture of intermittent sharp stabbing like sensations and slow, constant burning pain in both ears.. just like Dan Malcore described his.. like acid poured into ears. My ears are usually better in morning and get more painful throughout the day with additive sound exposure.

As for my hyperacusis symptoms: I have both loudness problems and pain. I don’t have hearing loss either, except for ultra high frequencies. The world to me also seems very very loud, hence my LDLs dipping into the 40 dB range at higher frequencies. Higher frequency sounds obviously are much worse, especially water faucet, beeping machines, yapping dogs, talking to people, car horns, fans, refrigerator buzzing, screeches from trains, shower head, I could go on and on. Those sounds are all uncomfortably loud to my ears. I also get pain in my ears from exposure to loud noises or exposure to normal volume sounds over a period of time. The ear pain also seems to get worse when my allergies flare and when my anxiety is high. In addition, I also get thudding feeling in my ears when exposed to sudden sounds.. I think this is a tensor tympani issue. All the above seem to be fairly common issues for a lot of hyperacusics, even though not much is known about this condition from the research end. I agree that categorizing folks into a certain group, pain or loudness hyperacusis, is difficult and somewhat arbitrary as we all are so individual in our personal experience.

I agree that hyperacusis is a physiologic condition, yet it also, quite understandably, creates collateral damage within the psychological realms (for me it’s fear, intense anxiety, panic, depression).The auditory system is very much hard wired into the limbic/autonomic brainstem.

Hyperacusis affects our lives in many ways. I have been really gentle on my ears.. so never ever expected to be struck by such an odd problem. I love music and play multiple instruments, none of which I have been able to continue since this began. I am responsible for the care for my wife, who is severely disabled, so hyperacusis has made an already difficult task into an exceedingly difficult one. I am trying to hold down my dream job and am finding the “normal” workplace sounds incredibly uncomfortable and painful at times. My coworkers do not seem to understand and I fear my limitations are often misinterpreted as disinterest, when it couldn’t be farther from the truth. There are many days where I just want to give up, yet I am doing my best to remain in life, as best I can. I am determined to overcome this, and not allow it to define me. I am undergoing a sort of TRT (modified with custom sound generators with counseling) to help desensitization along, similar to how Rob x2 approached this. I frequently read success stories for encouragement, try to get in touch with folks who have overcome this to get their personal advice, and have regular contact with my audiologist with any questions I have.

Best,
EDogg
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