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TundraStar

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Posts: 15
Reply with quote  #1 
Hi guys. I began TRT about two months ago, and posted something a while back after i had been to my 1-month checkup. I have slight Tinnitus and Hyperacusis in my right ear. The results after the first month was that my LDL's had gotten slightly worse after beginning TRT. I had been using in-ear white noise generators for 8-10 hours each day during that time. A couple of days ago i went to another checkup, and my LDL's had gotten worse again. Not immensely worse, but indeed worse than they were before treatment began. I have also noticed im slightly more sensitive to loud sounds than i were before. We talked for a while after that and she said in these cases we should turn up the volume slightly on the noise generators to "initiate" treatment, but now im a little nervous that this would actually make me worse. When i wear my noise generators i can hear the noise clearly. Its not bothering me, and i can still hear other things good.

What should i do at this point? Any tips?

Should i just be patient? :-/

I greatly appreciate any answer to this post. :-)
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ontario78

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Posts: 186
Reply with quote  #2 
I am no expert and have not begin TRT, but I did see a few people say, they got worse before better.

Good Luck! (I am sure other experienced folks will chime in)
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phacker

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Posts: 143
Reply with quote  #3 
Hi Tundra,


I am sorry that you are not improving with TRT. There is something clearly going on with your hearing and your noise sensitivity is getting worse with TRT.  You started with normal hearing LDL's 100db L and 95db R, one month after TRT 95db L and 90db R after two months with TRT your LDL have decreased again.  

If I had your LDL's and after two months of decreased levels, I would not increase the generator volume level as something is not working to improve your LDLs. You need to consider if the TRT treatment is working for you? If you have the sound generators at the correct level, they should not lower your LDLs. If your LDLs drop below 85db, it will start to effect your daily life. 

How was the volume level of your noise generators determined? Was it based on the mixing point of your mild tinnitus or something else? The sound generators should be putting out a sound level around 10db, so it does not interfere with normal hearing and does not suppress tinnitus. The goal is habituation for this sound.

You may want to consider reading Tinnitus Retraining Therapy Patient Counseling Guide or Tinnitus Retraining Therapy by Jastreboff and Hazell. 

I would get a second opinion from another TRT audiologist before turning up volume on your noise generators after two months of lower LDLs.  

PH
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ontario78

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Posts: 186
Reply with quote  #4 
Quote:
If your LDLs drop below 85db, it will start to effect your daily life.


I guess so! My ldls are 65 (right) and 75 (left) Life is pretty tough!
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phacker

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Posts: 143
Reply with quote  #5 
Hi Ontiaro,

How are you doing?  Have you made that trip outside again? I have taken 3 weeks vacation from work because of the H & T and I have spent most of my first two weeks in my house. I also have started yoga to help with the stress.

I am having trouble from the noise when driving my car. I put on the Rain CD when driving and it helps but it is not enough.  I am going to rent the 2014 Chevy Impala today to see if it helps.  I test drove one and I liked the noise level, but I need more than a test dirve to know if the Impala would help.

PH 
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TundraStar

Registered:
Posts: 15
Reply with quote  #6 
Quote:
Originally Posted by phacker
Hi Tundra,


I am sorry that you are not improving with TRT. There is something clearly going on with your hearing and your noise sensitivity is getting worse with TRT.  You started with normal hearing LDL's 100db L and 95db R, one month after TRT 95db L and 90db R after two months with TRT your LDL have decreased again.  

If I had your LDL's and after two months of decreased levels, I would not increase the generator volume level as something is not working to improve your LDLs. You need to consider if the TRT treatment is working for you? If you have the sound generators at the correct level, they should not lower your LDLs. If your LDLs drop below 85db, it will start to effect your daily life. 

How was the volume level of your noise generators determined? Was it based on the mixing point of your mild tinnitus or something else? The sound generators should be putting out a sound level around 10db, so it does not interfere with normal hearing and does not suppress tinnitus. The goal is habituation for this sound.

You may want to consider reading Tinnitus Retraining Therapy Patient Counseling Guide or Tinnitus Retraining Therapy by Jastreboff and Hazell. 

I would get a second opinion from another TRT audiologist before turning up volume on your noise generators after two months of lower LDLs.  

PH


Hi Phaker. Thanks for your reply to my post. Im really starting to get anxious about this therapy (and clearly, that is not good). I thought it was supposed to be without side-effects. I have now turned down my sound generators to the level they were before the 2-month checkup, disregarding what the audiologist said. I definitely dont want the LDL to drop below 85db. Its not easy to talk to another expert here in Norway, as she is one of the only "experts" in the country. We've not embraced TRT here as much as you have in the US unfortunately.

So now i really don't know what to do. :-/

I cant hear my tinnitus in the daytime, only when its almost completely silent so its very mild. She didn't say anything about the mixing point or nothing. She said i should set the volume so i could hear the white noise, but barely. I have a wheel on my noise generators with 4 numbers. Mine is set to 2. After the 2 month checkup she said I should turn it up to 2.2. Should i turn it down? I can clearly hear the white noise as im sitting here in my office typing on my computer.

I will look into the book, but I thought the expert was the expert if you know what i mean.
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TundraStar

Registered:
Posts: 15
Reply with quote  #7 
Quote:
Originally Posted by ontario78
Quote:
If your LDLs drop below 85db, it will start to effect your daily life.


I guess so! My ldls are 65 (right) and 75 (left) Life is pretty tough!


Thats tough to hear Ontario. Maybe you should begin with TRT? It might and should help you? Mind me im no expert and my first 2 months with the Training haven't been uplifting, but maybe my audiologist is doing something wrong? :-/
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phacker

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Posts: 143
Reply with quote  #8 
Trundra,

It appears that you would be classified with in the 0 category with mild tinnitus and normal LDLs when you started TRT: The following is from the book Tinnitus Retraining Therapy by Jastreboff and Hazell: "All that is required for category 0 is simplified counseling with information about the neurophysiological model, together with instructions about avoidance of silence and non-specific advice on the use of background sound enrichment." 

"There is no recommendation to use sound generators in category 0.  Nevertheless, there will be some patients who strong believe that it is necessary to use sound generators to achieve control of tinnitus. There is no fundamental problem is using sound generators for category 0 problems." 

Please keep in mind that LDLs of 85 to 90 db are considered normal. 

Do you have the perception that sounds are louder (brain turned up the central gain) when your LDL's decreased?

I am concerned that you are getting worse with the TRT treatment.  I know how difficult my life has been with dealing with H & T and I would not want you or anyone to have to deal with this condition.

I do not want to get between you and your audiologist or give you direction on the sound setting as everyone is different, but I was astounded by the lack of knowledge in the health care community about H. I took it upon myself to start reading and do my own research, so when I talk to my health-care provider I have as much information as possible. 

PH
 
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TundraStar

Registered:
Posts: 15
Reply with quote  #9 
Quote:
Originally Posted by phacker
Trundra,

It appears that you would be classified with in the 0 category with mild tinnitus and normal LDLs when you started TRT: The following is from the book Tinnitus Retraining Therapy by Jastreboff and Hazell: "All that is required for category 0 is simplified counseling with information about the neurophysiological model, together with instructions about avoidance of silence and non-specific advice on the use of background sound enrichment." 

"There is no recommendation to use sound generators in category 0.  Nevertheless, there will be some patients who strong believe that it is necessary to use sound generators to achieve control of tinnitus. There is no fundamental problem is using sound generators for category 0 problems." 

Please keep in mind that LDLs of 85 to 90 db are considered normal. 

Do you have the perception that sounds are louder (brain turned up the central gain) when your LDL's decreased?

I am concerned that you are getting worse with the TRT treatment.  I know how difficult my life has been with dealing with H & T and I would not want you or anyone to have to deal with this condition.

I do not want to get between you and your audiologist or give you direction on the sound setting as everyone is different, but I was astounded by the lack of knowledge in the health care community about H. I took it upon myself to start reading and do my own research, so when I talk to my health-care provider I have as much information as possible. 

PH
 


Much appreciated Phaker. Does the book say how to set the sound generators right? They shouldn't be too loud right? I seeked treatment with TRT because i had problems with my right ear in certain situations. The audiologist recommended to treat me with noise generators and said that i should feel better soon because i was only slightly hit with H and T. Now that im on a downspiral, this makes me nervous. Its not like the brain turns up the sound. Its more like loud sounds or high frequency sounds distort in my right ear. Its like they are not muffled like they are in my normal ear. Its strange, really. :-/

Maybe I should read that book, and become an expert myself.
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phacker

Registered:
Posts: 143
Reply with quote  #10 
Tundra,

With a normal hearing person when the average sound level increases then the brain gain decreases, loudest sounds potentially having the greatest effect. If mechanisms controlling this gain modification are producing high levels of amplification when it is not needed, then over stimulation occurs with the auditory system, resulting in the perception of sounds as abnormally loud, even painful.  This phenomenon is called hyperacusis. 

TRT treats hyperacusis and tinnitus. Your audiologist is treating you with TRT for H with normal LDL's of 100dB L and 95db R and I do not understand why because you note no central gain of the brain. I do know it not working for you. It appears that you may not have H.  I understand your complaint to be distortion in your right ear to loud sounds and HF. 

I do not know who, how or where, but you need to get a second opinion about your treatment plan.  You may want to start over again and find an ENT that specializes in hearing sound distortion.

I truly wish you the best.

Warm Regards,  

PH   
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TundraStar

Registered:
Posts: 15
Reply with quote  #11 
Quote:
Originally Posted by phacker
Tundra,

With a normal hearing person when the average sound level increases then the brain gain decreases, loudest sounds potentially having the greatest effect. If mechanisms controlling this gain modification are producing high levels of amplification when it is not needed, then over stimulation occurs with the auditory system, resulting in the perception of sounds as abnormally loud, even painful.  This phenomenon is called hyperacusis. 

TRT treats hyperacusis and tinnitus. Your audiologist is treating you with TRT for H with normal LDL's of 100dB L and 95db R and I do not understand why because you note no central gain of the brain. I do know it not working for you. It appears that you may not have H.  I understand your complaint to be distortion in your right ear to loud sounds and HF. 

I do not know who, how or where, but you need to get a second opinion about your treatment plan.  You may want to start over again and find an ENT that specializes in hearing sound distortion.

I truly wish you the best.

Warm Regards,  

PH   


Ok. So let me get it right. You don't believe i have H? I have the painful symptom you describe when exposed to loud sounds. F.ex. when i went to a football game a few months back the roar of the croud was really painful and made this ringing noise (distortion!) in my ear whenever they cheered. So with that assumption i sought help. I dont ever think im gonna find an expert on sound distortion here in Norway. We barely have TRT experts. So I don't know what to do. Now i've turned down the noise generators so its soft background noise and nothing more. Should i stop them? Maybe i should call the audiologist..
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phacker

Registered:
Posts: 143
Reply with quote  #12 
Hi Tundra,

Loud noise exposure can cause tinnitus and ear pain to people with normal hearing and the ear pain to loud sounds does not necessary mean the person has H.

When I started down my path to figure what was going on with my hearing, I searched for a Ear, Nose, Throat (ENT) doctor that treated ear pain for regular sound levels.  When I went to the ENT, I was diagnosed with H. His recommendation was to wait two months and see if the H would go away, but it did not go away. I think on my first LDL test is was some thing like 65 L and 70 R. In fact the TRT audiologist would not see me until I was cleared by a ENT to have no structural ear damage.

I had the sensation that the sound in my brain was turned up as I knew all sounds were louder not just loud sounds. I felt like if I could find the sound knob connected to by brain and I turned it down I would be OK.

Have you seen a ear doctor to check your ear structure?  I feel that you that need to see a ENT or ear specialist that understands H and get a proper diagnoses as you do not have the typical H symptoms with normal LDL's and no sensation of increased central gain.

I do not know if you have H or not.  If you do not have H and there is some thing else causing your symptoms, you are prolonging proper treatment.  

PH
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TundraStar

Registered:
Posts: 15
Reply with quote  #13 
Quote:
Originally Posted by phacker
Hi Tundra,

Loud noise exposure can cause tinnitus and ear pain to people with normal hearing and the ear pain to loud sounds does not necessary mean the person has H.

When I started down my path to figure what was going on with my hearing, I searched for a Ear, Nose, Throat (ENT) doctor that treated ear pain for regular sound levels.  When I went to the ENT, I was diagnosed with H. His recommendation was to wait two months and see if the H would go away, but it did not go away. I think on my first LDL test is was some thing like 65 L and 70 R. In fact the TRT audiologist would not see me until I was cleared by a ENT to have no structural ear damage.

I had the sensation that the sound in my brain was turned up as I knew all sounds were louder not just loud sounds. I felt like if I could find the sound knob connected to by brain and I turned it down I would be OK.

Have you seen a ear doctor to check your ear structure?  I feel that you that need to see a ENT or ear specialist that understands H and get a proper diagnoses as you do not have the typical H symptoms with normal LDL's and no sensation of increased central gain.

I do not know if you have H or not.  If you do not have H and there is some thing else causing your symptoms, you are prolonging proper treatment.  

PH


In the same building as my audiologist there is a ENT-doctor. I went to him first with my tinnitus and hyperacusis. He checked my ear and couldnt see anything wrong. He referred me to the audiologist after that. He didn't check the inside om my ear or took an MRI or anything like that though. You believe i should get that? In norway you don't get all those diagnostic tools unless there is something wrong. You see we dont pay anything for healthcare over here, so to ask for all that, I would not be succesful. If my TRT fails though they will have to explore further, but I'll just have to see. I thought that H was H, and that it all could be treated by TRT.
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phacker

Registered:
Posts: 143
Reply with quote  #14 
Hi Tudra,

I am not recommending a MRI as doctors give out MRI's like candy, and it can be very hard on anyone with noise sentivity. I do not know how the heath system works in Norway. Please be careful as I was recommending a path that is common in the United States with a second opinion that I hoped would give you the confidence that you were doing the correct treatment or could make a change.

PH  
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TundraStar

Registered:
Posts: 15
Reply with quote  #15 
Quote:
Originally Posted by phacker
Hi Tudra,

I am not recommending a MRI as doctors give out MRI's like candy, and it can be very hard on anyone with noise sentivity. I do not know how the heath system works in Norway. Please be careful as I was recommending a path that is common in the United States with a second opinion that I hoped would give you the confidence that you were doing the correct treatment or could make a change.

PH  


Ok Phaker. I understand. I will talk to my audiologist about the treatment on my next visit. Thanks buddy, and good luck! :-)
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