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frododorf

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Posts: 4
Reply with quote  #1 
I read somewhere "Our most important advice: Don't make it worse. It is imperative to avoid or protect oneself from noise that causes pain or discomfort." Is it true that being exposed to sound that causes discomfort will make the situation worse ? If this is true then surely it is impossible not to get worse since just the noises of people in my house are "uncomfortable" let alone when I go out in the street. I don't wear ear protection because I have heard that lowers your tolerance and also I experience more discomfort than pain (I guess that makes me "lucky"). What am I supposed to do ?
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bohmaniac

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Posts: 11
Reply with quote  #2 
Battling with this question myself... Just made a thread about similar issues. Let's hope for some replies. People claim no sound whatsoever below 80dB can make you worse and while that may be true, the question is what level of exposure is optimal for recovery in relation to one's LDLs? 
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Cheryl_K

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Posts: 101
Reply with quote  #3 

You sound like an intelligent person. Do some reading. There are plenty of resources on this website, and now lots of books on Amazon and other online booksellers.

I may sound harsh, but I've been trying to get the message across for awhile that you need to use your own good sense, in addition to following a well constructed, multi-modal healing protocol. The hyperacusis person must lead the way, or at least be an equal participant if the process. But there are so many opinions, so many "specialists" saying such contradictory things, that you can really get confused!

Read "Success Stories" and "need encouragement" strands on this website.

Before my accident I had several specialties, including pain management. I worked on a pain management team in a hospital and mentored other therapists. My training and areas of specialization (cognitive behavioral therapy, biofeedback, neurofeedback, hypnosis) gave me a very healthy respect for individual differences. Even people with similar brainwave patterns required individualized approaches. I have a very healthy respect for neuroplasticity and our capacities to heal (unfortunately, not all of us--there are so many causes).

I am not able to work now, as I cannot watch moving computer screens without having a setback (I also have visual processing problems from my accident). I cannot work with clients who raise their voices and gesticulate at times--which is just about anybody who is in therapy. I cannot always be available to keep appointments due to my own hyperacusis as well as head, jaw and neck pains (I really did a job on myself).

I was not able to find anyone in my profession who could help me, or even want to learn how to help me. There is no TRT provider nearby. One of my really biggest difficulties is riding in cars, even as a passenger. The noise of the road, cars passing by, and the visual stimulation are too much for me. I've tried visiting therapists and doctors at a distance. The travel experience more than negates and washes out any gain that might have been made. It is far better for me to avoid setbacks and follow a home-based protocol.

I found a wonderful acupuncture doctor who is also board certified in internal medicine. He brought himself up to speed in hyperacusis.  He went to a conference on Sound Therapies, and made a recommendation based on his assessment of my holistic mind-body needs. It could be done over the phone and internet. It was very healing for other symptoms, but did not do enough for the T and H. My doctor had already treated people with Meuniere's and plain tinnitus. There are letters of gratitude hanging on his walls. I'm much better than I was when I went to him, but not ready to go out on main streets unprotected. I am still working on it, but this just may be the one thing that results in continual setbacks.

When I was feeling somewhat better and able to read without the letters swirling around and causing me pain, I began to really read on this website, other websites, and books on T and H. Since I had a career which involved designing treatment protocols, I designed my own. Instead of devices to measure decibels, I monitored my psychophysiological reactions myself and was able to sense how much I could tolerate. I designed meditations for healing.

It's been a long healing process. I don't know how far it will go.

You better believe that I avoided sounds and protected my ears until I was able to tolerate them. If you're comfortable in your own body, you'll know

I went from not being able to watch tv, listen to favorite music, or have more than one source of sound send me into a reaction which included vertigo and loss of balance, to being able to tolerate almost all the noises in my house, vacuum cleaners, lawnmowers from inside my house (can't be outside my house at those times),symphony orchestras on PBS, and last week, the first time I was able to listen to Pavarotti for a few minutes. I'm listening to a symphony right now, with Pink Noise in the background. My left ear is beginning to ring, which is usually a signal for me that I've had enough exposure, and it's time to take a rest from stimulation. In pain management jargon, it's called "pacing yourself."

I'm not out of the woods yet. I've had two very bad setbacks this summer--one when I went shopping (small stores, pre-order by phone if they'll do that for you). While I was going from the car to the store, a very large truck with one of those awful horns, got impatient and just leaned on the horn, banging away because there was a red light.As I had felt well enough to not do my usual preventive protection for outdoors, the sound caused me to immediately fall, and I was back to "high T" and intolerable "H." I've had a few serious setbacks from unexpected noises, one with reactions so severe that my doctor put me in the hospital to rule out stroke. But each time, the reactions are not as severe, and it takes less time to recover--although I was pretty much out of commission for at least a month after these two.

But there are so many ways in which I am better that I am not giving up. It is slow and tedious. And the process must be respected.

So, find someone who can help you with this. Make sure they are qualified. If they tell you something that really does not make sense to you, and you seem to be getting worse, find someone else.  It's a long and nonlinear road to healing. Best of luck to you.

Cheryl




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Neil58

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Posts: 82
Reply with quote  #4 
Hi Frodo and Bohmaniac,

The generic Guidance that sound s below 80 db cannot make you worse is incomplete. What they mean is that sound sbelow 80 cannot damage your hearing. Sounds below 80 can definitle cause you a setback depending on where your LDLs are. So as Cheryl says, you have to use your best judge,ent when to protect your ears amd when not to. It is difficult at best.

Hope this helps,
Neil
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Neil58

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Posts: 82
Reply with quote  #5 
Hi Cheryl,

It sounds like you and I have similar injuries and similar treatment approaches amd results.

Did you get your H from a concussion? It sounds like it. I did.

For riding in a car, have you tried a Bose noise cancelling headset or ear defenders? They work pretty well for me. The Bose takes out most of the road noise and engine noise. For concrete roads that have alot of high pitched tire whine, the bose wont even touch it and i have to use over the ear ear defenders for those. The 3M Peltors are 33db and are excellent. But neither are a free lunch. I still get effects from a car drive, but maybe 10% with those of what i would get without. But i cam do short drives ( 20 min) with no protection now. Trying to increase that slowly.

Is your visual processing problem Nstagmus? Thats what i get but its very mild fortunately.

Most of the TRTbaudiologists that i talked to were willing to work with me via Skype. That might be an option for you and might be a good way to get into TRT.

I am basically doing s protocol of gradual desensitization by gradually adding back in sound from low db to higher db, including pink, nature, music, tv, time outside, driving, and TRT It is working well. But i am also monitoring my body's reaction to sound and backing off when the symptoms start elevating which tells me i have had too much. The symptoms now come in a predictable order so when some of the moderate symptoms start kicking in, i back off. Otherwise the worse symptoms start kicking in. Its my experience also that as you said, the body starts to tell you if its had too much stimulation - if we are listening!

Definitely non linear as my audiologist likes to say also and id have to agree.

Well, ive done my sound generators, pink, and nature sounds for the night. Some music to go, then off to bed with my sound oasis sound machine for 90 min x2. Lol. But thats what it takes. A far cry from where i was.a year ago.

Take care,
Neil

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Cheryl_K

Registered:
Posts: 101
Reply with quote  #6 
Hi Neil,

Thanks for the validation and suggestions. I do similar things, without the TRT, but I am very aware of decibel levels, as well as Timbre, tones, pitch, and squeals, which I believe are not measured in the TRT system. Please correct me if I am wrong, but I believe there are symptoms which are not addressed in the TRT protocols. Loudness is not so much the issue for me anymore, at least with many types of sounds.

I actually cannot use earbuds, as I became tactile defensive in the areas which were injured, and cannot listen to noises when presented in both ears at the same time. Some people might argue that this is proof that I need TRT, and I have been working on it, but not with earphones, I tried. I bought the noise cancelling headphones, listened to pink noise at a comfortable level, and still, it made things worse. For months. I can listen if the source of sound is farther from my ears. I can listen to stereo sound now.

I have a professional sound machine which I used in the waiting room when I worked. I like my overhead fan better. It is very soothing. I use it all year round. I even got used to the visual, which I believe helped me to read without so much discomfort. I didn't know that might be a result when I started, but it's possible that was the effect.

I have several types of visual processing problems which I did not have before my accident.  They are improving, but I still limit my reading time, although it's longer than it was a few years ago.

I also have reactions from using my jaw and bending my neck, which can start up the whole sound sensitivity cycle again.It does not have to be precipitated by noise of any kind.  Many of us who had bad accidents have what they call "Brainlash," "mindstorms," and TBI's. When hyperacusis is caused by multiple injuries, it is a little more complex, and we especially need to listen to our own bodies as opposed to someone telling us how we should be feeling. 

Best,
Cheryl

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StringBean

Registered:
Posts: 40
Reply with quote  #7 
Frodo,

I advise you think about it like this: nothing above 90dB will ever damage your hearing.

That being said, if your mind is on constant high-alert because of the outside sound around you, you will never find progress. What TRT does is re-train the brain to accept sounds it currently registers as "hostile."

It is important to cut out activities that set you back, and to constantly have pink noise in your ear. If you need to start at the softest level possible, then do so. When I started TRT, I had the volume on my ipod at 1 bar. So soft you can barely perceive it. Over time your brain will tolerate the pink noise, and you can gradually increase the volume until it is at equilibrium with the outside world.

The mental aspect of TRT is the hardest to explain and the hardest to conquer. You must understand that you are re-wiring your brain to accept sound it currently tells you to avoid. Having the knowledge that a sound below 90dB, while uncomfortable, will not damage your hearing, and that the reason it causes discomfort is because your brain is telling your body to avoid it, is very important. You have to slowly work your way up the ladder until your physical self and mental self can both tolerate louder sounds.

Good luck,
Andrew
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Neil58

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Posts: 82
Reply with quote  #8 
Hi Cheryl,

Thanks for the reply.

I was going to suggest that you get Gail Dentons book, Brainlash, but seeing that you used that term, i assume you must already have it. If not, you should get a copy. It has helped me alot in my concussion recovery. All except the hyperacusis.

Yes, many symptoms not addressed by the TRT protocol, only the decreased sound tolerance part of hyperacusis. For The rest of the symptoms there doesnt seem to be any good advice other than very general,advice which is not adequate and in some cases wrong.

Best of luck,
Neil

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