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Barre

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Posts: 4
Reply with quote  #1 
Hello ,

I started TRT some weeks ago and was fitted with the sound generators that played what I believe was some sort of pink noise .

My clinician told me that most people find that these things give some form of relief but also warned me that the tinnitus can react initially to the new sensation and input .

I expected alot of these generators , ReSound is the brand name , but after wearing them an hour my tinnitus really started to scream above everything else , but I endured as my therpaist said this could be 'expected' , instead of the relief of wearing them I found great relief at the end of the day when I could stop wearing them, my tinnitus immediatly dropped to a more mangable level and I went to bed , I have not used them since .

What is worse is the fact that all my symptoms seems to have exacerbated since that day (3 weeks ago) , that is both T&H , and I am starting to worry I made things alot worse permanently and I allready start to regret ever wearing this stuff in the first place. 

Did I make the mistake of wearing them for 5 or 6 hours straight ?

This particular passage in the TRT book by Jastreboff is disconcerting .

"when (cat.4) patients are exposed to continuous high levels of pink noise therapy , cumulative effects occur and T&H are set permanently to a much higher level than before treatment began "

Anyone here with similar experiences that eventually turned out to be ok ?

Thanks !
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EDogg

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Posts: 167
Reply with quote  #2 
Hi Barre,

You will undoubtedly get a number of opinions on this. These questions are best addressed to your clinician, to whom I expect you paid good money to receive treatment.

I can’t entirely explain what they mean by that sentence. Maybe someone else better understands this. There are a number of folks here who were Cat 4 who fully recovered and all had bad setbacks throughout the process. The way I read it, the key is “high level” as in high volume and “continuous”. I think they also may be referring to an older version of pink noise, on tape cassette, that was of poor quality, although I’m not certain of that. If you read the rest of the paragraph, it states that “using low levels of broadband noise just above threshold avoids this effect; over prolonged periods of time, this approach produces compensatory changes that result in a reduction of hyperacusis and tinnitus”. I’m assuming your clinician appropriately instructed you to wear your sound generators as such, and if so, you do not have to worry about permanent damage.

Many hyperacusics cannot tolerate the pink noise, or broadband noise, of TRT sound generators. It is well known that these will often initially cause an increase in tinnitus (especially if you have the sound “reactive” type). That apparently will calm down as the hyperacusis becomes more desensitized. At least that is how it was described to me by my audiologist. You may need to try wearing them for much shorter periods of time, at the onset, and work your way up, like weight training. You could also consider having your audiologist customize the sound presentation so that it is more comfortable for you, based on your LDLs (assuming those were assessed).

Pick up the phone and raise these questions with your audiologist. If you do not get a satisfactory answer, find an audiologist who will. This may take a lot of leg work and persistence on your behalf, but you should be able to find some form of sound presentation that works for you.

Best,
EDogg
0
Barre

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Posts: 4
Reply with quote  #3 
Thanks alot for the reply , 

Quote:
you paid good money to receive treatment


Actually the treatment was free as it was part of a clinical trial , where they used TRT combined with EMDR , and I feel like the treatments where not very personalised at all but they where following a stricter protocol .

Quote:
The way I read it, the key is “high level” as in high volume and “continuous”. I think they also may be referring to an older version of pink noise, on tape cassette, that was of poor quality, although I’m not certain of that. If you read the rest of the paragraph, it states that “using low levels of broadband noise just above threshold avoids this effect; over prolonged periods of time, this approach produces compensatory changes that result in a reduction of hyperacusis and tinnitus”


Yes , they gave me some sort of soundcube that has pre programmed notched sounds on it, I believe 4 or 5 samples of 30 minutes each that I used at night for sound enrichment , 1 of these samples is the sound of the sea and sounds very much like pink noise , after letting the samples play for the entire night on repeat, one after the other , I woke up with my tinnitus being worse off, maybe the 30 minutes that plays, and repeats after the other samples are played, is considered prolonged use and high level , as it is obviously 'louder' than the sound generators . This is the part that has me worried abit .

I contacted my audilogist but she seems to minimise my concerns or just ignores them.


0
Aplomado

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Posts: 642
Reply with quote  #4 

If the noise bugs the heck out of you, you probably need to start at a lower level.

When I first got my wearable sound generators, they made my ears hurt.  I had to turn them down really low to tolerate them. I was able to slowly turn them up to a higher level as my ears adjusted.

Your results may vary.

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Barre

Registered:
Posts: 4
Reply with quote  #5 
Small update :

After having discussed my concerns in length with my audioligist/therapist she was able to convince me that the spike from using the sound generators is temporary , they do not even use pink noise and she explained the settings they use in length to avoid the stochastic resonance and the kindling effect .

She is also not convinced that I am a category 4 patient, although she admits it is very hard to make the distinction between Jastreboff's category 3 and 4 , and even for category 4 patients the approach for treatment is basically the same, with the exception of more extensive counseling .

I am diagnosed with strong phonophobia however, an extreme and irrational fear of sudden loud sounds , they evoke a very strong emotional respons from me and is a form of hyperacusis, but I probably do not have to expalin here with phonophobia is ,  that must be treated first before they can attempt to tackle the tinnitus itself .

However , there is still a thing that worries me , she gave me a device that playes nature sounds, short 30 minute samples with nature sounds , it had 4 or 5 samples on it I believe, and they where designed for people with tinnitus and hyperacusis, they went through a filter that removed the high frequencies that can aggravate some peoples tinnitus .

A couple of those samples where "pink noise like" , they sound of rolling waves and/or waves crashing on rocks, rain sounds , my audiologist advies me not to let them play all night long, however one night I fell asleep with the sounds playing all night long, I woke up and my tinnitus was aggravated and has not really come down yet. Obviously that sound was not very high but naturally higher than that of the sound generators .

Is this what Jastreboff wrote that category 4 patients need to be carefull when using pink noise therapy at 'high levels and prolonged continues use' , as this can trigger a kindling effect and make category 4 patients permantly much worse ?


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EDogg

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Posts: 167
Reply with quote  #6 
Barre,

So glad to hear you reached out to your audiologist and had your questions and concerns addressed. That is exactly what you need to do.

My answer (my opinion) to your question in bold, is no. If your tinnitus is anything like mine, and thousands of others with this, it just got a bit aggravated by the sound and will calm down with time. One thing I have noticed, particularly with tinnitus, is that it literally seems to get louder, or my perception of it, when I perseverate on it. It’s sort of like the sensation of pain, in some sense. There’s a stimulus, and a response. We can choose to give (or not give) importance to these sounds. My advice is to accept this as temporary, recognize it, validate it in your mind, and move on with your life. The less importance and attention you give it, the better. I will be meeting with a well known and respected clinician soon and might bring up this quote to them and will share the response, if so. I think Jastreboff is referring to loud volume, static pink noise tapes of poor quality, over a long period of time. The sound of waves, although likely sharing some similarity in frequency to pink noise, is dynamic. I am assuming, also, that you are not blasting it directly in your ears at high volume. Hope this makes sense.

EDogg
0
Barre

Registered:
Posts: 4
Reply with quote  #7 
Quote:
Hope this makes sense.


Yes it does, thanks for the reply .

Quote:
I will be meeting with a well known and respected clinician soon and might bring up this quote to them and will share the response, if so


If you would be so kind to do that, that would be absolutely wonderfull, thanks !
0
jmlr

Registered:
Posts: 1
Reply with quote  #8 
Quote:
Originally Posted by Barre
Hello ,

I started TRT some weeks ago and was fitted with the sound generators that played what I believe was some sort of pink noise .

My clinician told me that most people find that these things give some form of relief but also warned me that the tinnitus can react initially to the new sensation and input .

I expected alot of these generators , ReSound is the brand name , but after wearing them an hour my tinnitus really started to scream above everything else , but I endured as my therpaist said this could be 'expected' , instead of the relief of wearing them I found great relief at the end of the day when I could stop wearing them, my tinnitus immediatly dropped to a more mangable level and I went to bed , I have not used them since .

What is worse is the fact that all my symptoms seems to have exacerbated since that day (3 weeks ago) , that is both T&H , and I am starting to worry I made things alot worse permanently and I allready start to regret ever wearing this stuff in the first place. 

Did I make the mistake of wearing them for 5 or 6 hours straight ?

This particular passage in the TRT book by Jastreboff is disconcerting .

"when (cat.4) patients are exposed to continuous high levels of pink noise therapy , cumulative effects occur and T&H are set permanently to a much higher level than before treatment began "

Anyone here with similar experiences that eventually turned out to be ok ?

Thanks !
Pink noise is changing the wiring in your head. It will increase the sound
. Don't stop. I am starting with 10 min at a time 4 timed a day.

__________________
john rutherfurd
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Aplomado

Registered:
Posts: 642
Reply with quote  #9 
You are getting good advice.  Don't worry about a temporary increases in tinnitus due to lowish pink noise.  
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