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Karen_T

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Posts: 3
Reply with quote  #1 
I've been meaning to write this up for a while for many reasons - as a recovery story, which it is, as a warning, and in the hope that it may contribute to a change in BSA guidelines.
 
I got mild tinnitus in my left ear in February 2013, triggered by a loud noise following a long period of stress. It was irritating more than anything else, and I also felt stupid because I had made the loud noise! Eventually I went to my GP about it and she advised me to have a hearing test, but not at the surgery because they didn't have proper facilities - she said there were lots of places where you could get a test done properly.
 
I'd been googling tinnitus - as one does - and read about The Tinnitus Clinic in Harley Street, who apparently had a special treatment with a scientifically proven success rate. I had already rung them to ask about the procedure, and the consultation didn't cost that much (unlike the treatment) and included a hearing test. So I booked it. The appointment was at the end of May 2013.
 
After the Tinnitus Clinic audiologist had done the hearing test, the result of which was apparently normal for my age, then 60, she asked if I would be willing to have a Loudness Discomfort Level test done. This was new to me. She explained that it would provide information that would be helpful to the clinic, but that some people didn't want to have it done because they thought it would make their tinnitus worse. "Will it?" I asked, assuming the answer would be no - I have faith in white coats in Harley Street. "Any apparent worsening will be only temporary", she replied. So I had the test.
 
The LDL test was conducted according to BSA recommended guidelines, at a number of frequencies up to 100dB in each ear. She told me to press the button when the sound became "unbearable". I asked her to explain what she meant, and if it was intended to find the loudest sound that I could tolerate, and she said yes. Well, it was unpleasantly loud at 100dB, but it wasn't "unbearable"; so I bore it.
 
As soon as I took off the headphones I realised that something horrible had happened to the hearing in my left ear. The audiologist's voice resonated like the scream of a microphone playback. When I emerged onto Harley Street ten minutes later I was surrounded by frightening sounds, which it took a few seconds to realise were passing cars. Eventually I discovered that I now had severe hyperacusis in my left ear.
 
A great deal of emailed correspondence with The Tinnitus Clinic followed. The hyperacusis went on for days, stretching into weeks, and eventually into months. The British Society of Audiology (BSA) guidelines permit testing up to 100dB. At the end of the summer I wrote them a letter explaining what had happened to me and eventually received the following reply: "I refer to your letter dated 27th August to the British Society of Audiology.  The Society is unable to comment on specific clinical cases.  However, I will pass your correspondence to the Officers of the Society and should they have any comments I will direct these to you." That was the last I heard from them. In my case, testing up to 100dB was clearly, disastrously, too high.
 
The severely worsened tinnitus that resulted from the LDL test was insignificant beside the hyperacusis. My own voice was unbearably loud to me. Any social activity was out. I couldn't listen to music, watch television, go to theatre - normal life was basically at an end. I have my own mail order business, but had to disconnect my phone line. Thank goodness for email. I went back to the GP who was sympathetic to my whispered agony and made an appointment for me at RNTNE in London.
 
At that appointment I was given another hearing test which showed a new and dramatic dip in my hearing at 2000 Hz in the left ear. The consultant dismissed the hyperacusis as "just in your mind" - the reason I had been referred to RNTNE! - and recommended an MRI to investigate the new hearing loss (of which I had been unaware). But I'd read online about how MRIs could make hyperacusis worse, and declined.
 
After many months of isolation and depression (during which I missed all my closest friends' 60th birthday celebrations) the hyperacusis began to fade. It has now effectively gone. The worsened tinnitus remains, but I have to a large extent got used to it - it is only really troublesome at night, which the tinnitus I had prior to my visit to The Tinnitus Clinic wasn't. An audiologist I saw a year ago at the John Radcliffe in Oxford clearly thought that the hyperacusis would never go away, but David Baguley at Addenbrooke's in Cambridge, whom I also went to see, thought that I should be "cautiously optimistic", and he turned out to be right. So this is a story that I hope will cheer others suffering from this terrifying complaint. I don't use the word "terrifying" lightly.
 
The dip in my hearing in the left ear at 2000 Hz has remained (I've had my hearing tested twice since the RNTNE test), and I continue to be unaware of it: I can't find it running up a piano keyboard, and I therefore interpret is as being confined, very narrowly, to that specific frequency. Might it be the result of the LDL test? The test was conducted at a series of frequencies, including 2000 Hz. The hearing test done at the clinic immediately prior to the LDL test showed no such dip.
 
So I have a further reason for wanting to write up my story. Might it be that hyperacusis results from hearing loss at a specific, narrow, frequency, possibly unnoticed by the patient and undetected in a hearing test because it isn't usually at a frequency that is specifically tested - unlike mine?
 
I also finally want to recommend a CD that I found hugely comforting as the hyperacusis began to fade and the tinnitus became more obtrusive. It came from the Hull Tinnitus Group, see http://www.tinnitusexplained.org/,
and is called "Seashore Sounds". The sounds are entirely natural. Nothing else has provided such relief, and I've tried just about everything: Mindfulness tapes, self-hypnosis, progressive relaxation, the lot!
(Also posted on the Action on Hearing Loss tinnitus forum)
 
 
 
 
 
 
 
 
 
 
 
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Aplomado

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Posts: 711
Reply with quote  #2 

Thank you for your story.

I am surprised an LDL test at 100 decibels did this to you, but hyperacusis is a weird phenomenon.  I'll tell my doc to stop at 90 from now on.

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Rob

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Posts: 4,049
Reply with quote  #3 

The loudness discomfort test you were administered was not done according to BSA guidelines.  Here are your doctor’s instructions. 

 

She told me to press the button when the sound became "unbearable". I asked her to explain what she meant, and if it was intended to find the loudest sound that I could tolerate, and she said yes.

 

Here is the BSA guideline.

 

“This is not a test to find the loudest sound you can tolerate; it is a test to find what level of sound you find uncomfortable. You should press the button (or raise your hand) only when the sound becomes uncomfortable; but make sure you press (raise) it as soon as the sound reaches that level.”

http://www.thebsa.org.uk/wp-content/uploads/2014/04/BSA_RP_ULL_FINAL_24Sept11.pdf

Rob

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Cheryl_K

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Posts: 101
Reply with quote  #4 
Thanks, Rob. That's good to know. I had a similar experience when I was tested.

Cheryl
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Tensor187x

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Posts: 18
Reply with quote  #5 
so the main thing that helped your hyperacusis/sound sensitivity go away was just time right? And the CD you purchased helped with your T?
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Karen_T

Registered:
Posts: 3
Reply with quote  #6 
Hello,

Thanks for the replies!

Yes, I had the impression that the chief reason for my recovery was the passing of time, although I did also move to a peaceful place by the sea for nine months. However, even peaceful places have noises that can be uncomfortable if you have hyperacusis - I had a big problem for instance with one of the children in the village who screamed a lot. In fact I had just left because of the screaming and come home before I noticed the improvement really taking off. But it is true that I had gradually, while away, been able to listen to more and more music, string quartets largely, in an environment that was very quiet. The first time I found I could listen to a CD without discomfort - which was Haydn's Seven Last Words played by the Lindsays, maybe I should recommend that on this website! - was a very moving moment. So I spent a lot of time on my own listening to more and more music, as my tolerance seemed gradually to increase. I think I was hugely fortunate in working for myself and not having children.
.
The CD I recommended from the Hull Tinnitus Group is basically free, although you can give a donation if you want to. It really was hugely comforting, and their website is also very helpful.

Thank you, Rob, for your comments about the test. The audiologist used the word "unbearable" more than once in explaining the test, but I think a fundamental problem may have been her poor command of English. Most of the emails I sent to her at the Tinnitus Clinic were fielded by other people; the only reply she sent me directly was this:

"All the test result are on the printout that I post it to you include the loudness discomfortable level.

If you show the result to the audiologist, they will full understand."

I think that is a sufficient reason for the limits of the LDL test not to be left to an individual, either to the tester, who may not give the correct advice, nor indeed to the person being tested, who may misunderstand. Is there really any need to test above 90dB?

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Aplomado

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Posts: 711
Reply with quote  #7 
No, I don't guess there is any point to testing above 90...

I am very glad you are better!  That is wonderful!!!
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Paulbe

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Posts: 176
Reply with quote  #8 
A bit like punching someone in the chest to see how bad their angina can get.


The defense rests.
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