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jackid

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Reply with quote  #1 
Hi, my first post after I discovered this site and I am desperately hoping someone can help me or recommend someone here in the UK I can talk to who can help as I have drawn a blank and feel the ENT department I visit either does not understand or is not taking my symptoms seriously.


My story starts 4 years ago, I worked at a large toy store as a Supervisor. I was in work early one morning and the store alarms were going off as normal, but whereas they were usually turned off after about 5 minutes, this particular day they were going on for about 40 minutes. In this time I was in a small enclosed room with an alarm system inside. My ears started to hurt and my eardrums were pulsating with the noise. In hindsight I should have come out until it stopped but me being me I just carried on. After a while it stopped but the pain in my ears carried on gradually getting worse through the day.

Over the next few days my symptoms increased (dizziness, feeling and being sick, tinnitus) and my hearing had changed as well, it got to the stage where people sounded as though they were on Helium and very muffled. My GP had given me some anti dizziness tablets and told me to go back in two weeks. During this period my ears deteriorated, more sounds were painful, not uncomfortable but very painful but even now where there is no noise I still have pain in my ears.

It got so bad I went to the hospital and was sent to the ENT department, after a few tests I was told I had nerve damage to my inner ear and not much could be done. I was given steroids to try but this didn't help. I was also given hearing aids which only made the pain worse due to the increased sounds, so I couldn't wear them. I was sent to another ENT department and was told the same that it was nerve damage and not much could be done.

Due to the incident happening at work and feeling the store manager was negligible in allowing the alarms to go off whilst he sat around eating I placed a claim against the company (I am still officially employed by them but have been off work sick since the incident). As part of the claim I was sent to see an independent ENT consultant who stated I had nerve damage and hyperacusis. With this info I returned to the ENT department who referred me to the Audiology department and gave me some noise generators and told me to get on with it.

I am however really struggling with this and cannot manage more than 10 minutes with them in, my appointments at the Audiology are only on average 6 months apart and have been much longer to the extent I had to get the Medical board to help get me a quicker appointment as they don't even return phone calls. With the generators the noise even on the lowest setting is still distressing.

Now I am being told that my problems could be psychological and am finding it hard to come to terms with that. I've always been a strong minded determined person and I know the pain is real, as real as someone with a broken leg.

How do I fight something that I cannot see ? my life has stopped but not only that my husband and daughter are suffering as well, we don't go out as a family. My daughter and me don't go girly shopping. I don't want to live (exist) like this any more. I really feel like i'm drowning in despair. How do I beat this ?

Before this happened I went to concerts, football matches with my husband, the lot. Now getting up in the morning is a struggle. I am desperate.

Please help.

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saab1216

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Reply with quote  #2 
Dear Kid, Don't give up. When I got the hyperacusis and tinnitus a year ago,things were pretty bad for me as well.This is a misunderstood anomaly of the auditory system. What proof does your ent Dr. have that you have nerve damage? You need to go to someone who specializes in TRT . The Jasterbroff model of treatment is most effective in reestablishing your sound sensitivities.You need to be patient with the sound generators and build up your time frame of treatment each day. When I started it was very painful as well but I gradually built up where now I can wear them all day long.With proper application,you will see improvement like so many others here on this site. I know how alone and desperate you feel and it is a struggle everyday. You are not alone.Please stay here on this site and you will get the help you need! Paul
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markbergemann

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Reply with quote  #3 
Jacki,

There is hope and this network should be of great help.

I suggest two things:

1.  Keep looking for a TRT trained doctor.

2.  In the mean time, read everything on the http://www.Hyperacusis.net site.  Download and read the pdf file mentioned in the welcome part of this forum.  While waiting to find a TRT doctor, try self treatment using what you learn on this network.  It sounds like you may have a long wait for a TRT doctor.

I have successfully self treated my hyperacusis with great success using what I learned from this network and using the pink noise CD sold here.  That was 2 years ago.  If I had not had quick results, I would have gone to the nearest TRT doctor who is several hours drive from where I live. 

A very major part of therapy is to not be afraid of noise and of potential noise.  Most noise is your friend, as it will help train your hearing to ignore sounds that it should ignore.  The process is to slowly reintroduce sound into your life and think about sound as good.  Read everything carefully.

God bless

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Mark Bergemann
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markbergemann

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Reply with quote  #4 
There are several TRT trained UK doctors listed at the website.  Just follow the
"TRT Sound Therapy" link on the left of the screen.  Scroll past the USA doctors down to the UK doctors.

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Mark Bergemann
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DanMalcore

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Reply with quote  #5 
This is the link that Mark is referring to:
http://www.chat-hyperacusis.net/post?id=3334680

My heart just aches for you.  It is critical that you see a clinician from the referral list. 

Dan

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Debbie

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Reply with quote  #6 
Hi Jackid,

Wanted to second that things can probably improve quite a lot.
I would suggest doing the route others here have already.
Also, I want to note that I took a very different route but seem to have had success on the par of many of those who could be called a 'success' with TRT.
The hyperacusis was intense but is much improved, & not so much my problem;
still working through the ear fullness & tinnitus which has become intermittant vs. mostly untennable.
My ear issues also began with an over-exposure to an alarm sound.
We have gone round with discussions of 'non-Jastreboff' approaches including such meds as Gabapentin (Neurontin)
& such central nervous system intervention body therapies as cranio sacral work.
I feel both, & some other approaches, can have their places in adjuncting & possibly further increasing the efficiency of TRT
or, for some, even being a different route, as long as one also uses some sort of sound judiciously & therapeutically and learns to discern between fear & true (even if temporary) limitation.
I have not done broadband at all, instead nature sounds & music, plus various styles of cranial therapies, some with greater direct physical results than others, plus short-term small-moderate dose GABA meds at certain, limited times.
I am not using such meds now & am back to relatively normal activities after severe debilitation in which I was not able to ride in a car nor even sit in my livingrom due to the rattling of traffic & planes through the walls ceiling.
It was about 1 year from onset before I was able to resume normal activities, and now a bit over 1.5 years in, I am even more free, & rarely using ear plugs...unless for things I would have before h/t.
I maintain hope of even further improvements.
No, this is not psychological, med science does not yet understand what causes these auditory system responses but they are physical.
I have presented my thoughts in other posts on the role I think the interconnected system of nerves, muscles & other soft tissues, even into the linings around the central nervous system can potentially play.
In any case, wishing you the best, I know what it is like to be so out of the loop & not even understood medically.
With prudence & patience I think you can both take care of yourself & improve.

Sincerely,

Debbie

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Johnloudb

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Reply with quote  #7 

Hi Jackid, sorry to hear about your experience.

The Network is a great resource of information and I second Markbergemann's advice about reading the information here. Learning all you can about this condition is very important. Another good source of information, that was particularly helpful to me is Dr. Hazell's site ( http://www.tinnitus.org ). 

Like Mark said, complete avoidance of sounds is not recommended, at least not sounds that you can tolerate okay, even for short periods. Sound enrichment is very helpful, and is there is a nice article on how to use sound enrichment on  Dr. Hazell's website. It has to be a sound you have no aversion to and you should approach new sounds gradually. And please try to get to a TRT doctor. 

Staying optimistic about your situation, is very important as is not getting distressed over you symptoms.

Best Wishes,

John

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jackid

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Reply with quote  #8 
Thanks for replies it's good to know i'm not alone and that there is light at the end of this long tunnel

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Rob

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Reply with quote  #9 
jackid --  
 
Welcome to the board.  It isn't unusual for ENTs to be ill-equipped to diagnose or treat hyperacusis, and many ENTs aren't knowledgeable with respect to managing tinnitus.  Your experience sounds very disheartening, and many of us have had similar experiences with clinicians who weren't well-versed in treating hyperacusis.  
 
Having said that, you can turn things around.  
 
The key to working with broadband noise -- which is what you are using when you wear the generators they gave you -- is that the patient has to be able to tolerate it.  There are different types of broadband noise, with different characteristics, and some is easier to tolerate than others.  One reason you might be struggling with the generators is that the broadband noise they have given you to use is difficult for you to tolerate.  If that is the case, you have other options.  That is just one reason why it is essential for you to find and work with a clinician who is knowledgeable in diagnosing and treating hyperacusis.  The use of broadband noise is part of an overall strategy we use to become less sensitive to sound.  Unlike what some of your doctors have told you, you can do something about hyperacusis.  It is also possible that the pain you're experiencing is also reversible.  I'm speaking from experience.  I had severe constant pain, terrible hyperacusis, and very intrusive tinnitus.  Like you, I wondered if I'd ever be able to do things I enjoyed doing.  I turned things around by educating myself about my condition, finding an approach to help me re-establish my sound tolerance, and working hard and consistently to do so.  As disheartened as you feel right now, don't let that stop you.    
 
It is probably true that there are psychological elements involved, in addition to the very real pain you're experiencing.  But that is usually the case when our tolerance of sound is decreased.  In response to physical pain which is part and parcel of hyperacusis, we become fearful of some sound and may grow to dislike being exposed to it.  The challenges you're facing with sound and with the pain in your ears have to do with being exposed to extremely loud sound in a very small, enclosed space, for a long period.  And as you learn how to treat your decreased tolerance of sound, by working with a knowledgeable clinician and using a strategy that is well-suited to your particular needs, you can begin to re-establish your tolerance and, in addition, employ an approach to help you become less fearful or concerned that exposure to sound could cause additional harm.  
 
I suggest you contact Jacqui Sheldrake at the Tinnitus and Hyperacusis Centre, London, at 44+ (0)20 7487 2701.  Jacqui is extremely knowledgeable about hyperacusis diagnosis and treatment, and I am certain she would be able to help you. 
 
Rob    
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Violinist

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Reply with quote  #10 
Hello jackid !  I really feel sorry for you ! Struggling with this for 4 years without getting proper help must be really difficult.

Of course your pain is real ! I have also been misunderstood and have not been taken seriously, and because of that it took me over 2 years to get help, even if I was terribly bad from hyperacusis.
I wonder if you have got the best noise for you in your noisegenerators ?
When I finally came to an TRT-trained audioengineer he made the sound especially fitted to my hearing (I have some hearing-loss), and he asked me if I could tolerate the sound. He would have changed it if it was uncomfortable. 

It´s natural that  you are feeling down.  But in my case, just the fact that I finally was taken seriously, believed, and got treatment, made me feel SO much better !  And the treatment (first pink noise, then TRT) works ! Last summer I was so bad that I had to cut all my hair off, because I couldn´t wash it. (The sound of water was too painful.) I could not tolerate any voices including my own. Now I am able to do crosscountry-skiing ! I really hope you too will get the proper treatment and get better very soon !  Stay on the board and tell us how you are doing.
                                                   A big hug from


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jackid

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Reply with quote  #11 
Thanks for all the replies.

After reading the posts I decided enough was enough. This 'infliction' has took too much of my life already and I want it back.

I have started again with my noise generators doing it so far my way, i'm now getting upto 15 mins every 1 and a half hours. I've got a Puretone device which is on constantly. Also Saturday, we were invited to an engagement party, usually I would'nt go (friends and family know about my sensitive ears), but my husband said "no, you must go to make the first step" (rightly or wrongly !), so armed with 2 sets of ear plugs I went. I didn't set a time limit but in my head I wanted to stay for an hour. When we got there I put in a set of E.A.R.20 ear plugs and went into the room, I had to keep coming back out about every 10 minutes or so for a break and had to change my ear plugs back to my stronger ones but again came out every 10 minutes or so. I lasted the hour but I was ina lot of pain and when we got home I was sick and dizzy which has lasted for a couple of days. BUT at least I am still here and I know the noise won't kill me.

Also I have contacted Jacqui Sheldrake who has said she is happy to see me, the only problem I have is finding the costs involved. Does anyone in the UK know if you can see and be treated by Jacqui Sheldrake via the NHS ?

I also have an appointment on Friday to see a different Audiologist.
Again thanks for all your help.

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markbergemann

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Reply with quote  #12 
Hi Jacki, it is so great that you have decided to take back your life.

You said regarding sound exposure at a family gathering, "I was in a lot of pain and when we got home I was sick and dizzy which has lasted for a couple of days."  As you mention, such exposures will not cause damage to your hearing.  Yet it is important to know that such exposure can cause a setback in your improvement.  Such exposure is not making headway in the right direction.

The protocols (confirmed by my personal experience) recommend against exposure to sounds that are loud enough to cause such discomfort and pain.  I recommend using heavier hearing protection at such gatherings.  Even though I am fairly far recovered, I still wore earplugs this last Christmas and New Years at several such gatherings, where many people are talking in small rooms and it is very noisy.  (Way noisier than at a movie theater.)

Here are some thoughts I posted in the current "Setbacks" thread:
    "I try to NOT push myself PAST my current tolerance levels.  I expose myself to all sorts of sounds that are near my tolerance levels several times each week as a part of daily life, some for seconds and some for a minute or two.  I then relocate or put in earplugs.  Exposures at that level are not fun, and it is difficult to keep a positive attitude.  Simply keeping myself from getting upset with the situation seems to be OK, but having a positive attitude would be better, I think."
    "If a sound level for a given length of time causes my ears to feel numb or hearing at all distorted, than that is above my tolerance level.  I try to never expose myself to that level at all."


Jacki, please keep up your ambition to improve and read the material on this board for ideas on how to go about that, while you seek professional advice (and in addition to that professional advice).  Encouragement of others and proper technique is the way to go.

Mark

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Mark Bergemann
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markbergemann

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Reply with quote  #13 

 

I'm new too, joining the message board about 12 days ago.  Parts of my story are scattered throughout my posts to date.  Here is a more thorough version.

 

My problem started at about age 16 (I'm now 53) from a fire cracker exploding in my face in an enclosed area.  A self inflicted disaster.  My doctor told me to live with it.  His ears rang for 25 years from a New Year's Eve cannon, and mine would probably ring for the rest of my life.  After a few weeks of agony, my tinnitus went away for a few years.  By my early twenties my ears would ring in the evenings, then after a few more years all day long.  By age 30 I always put my fingers in my ears when someone blew a whistle.  Attending grade school basketball games to watch my children play was not easy.

 

Things slowly got worse, but were still livable, until May, 2007.  We had a dozen people at our house for a party.  We talked in a small room for several hours.  My hyperacusis got significantly worse that day.  After a few weeks I started wearing earplugs every waking hour.  By December, 2007 I wore earplugs AND ear muffs at church.  I could take the muffs on and off quickly as needed, but it was becoming hard to hear the sermon and still protect my ears.  I could no longer eat anything crunchy, even lettuce was too noisy.  I did not wear earplugs while sleeping.  I clearly remember washing my hands under slow running water and hearing the water drops hitting the sink.  They sounded like a chorus of bells with so many different sounds.  I could hear sounds (with 31 DB ear plugs fully inserted) as well as my wife could hear the same sounds, yet she was NOT wearing ear plugs and had perfect hearing. 

 

One interesting thing was that sometimes for a minute or two after removing earplugs, my tinnitus was completely gone.  That was an unusual feeling after so many years with continuous tinnitus.  It was though little comfort, as my hyperacusis was getting steadily worse.

 

I had been receiving the ATA newsletter for at least 10 years, so I knew there was no cure for tinnitus.  The newsletter reports on masking and TRT were not very positive.  I had not heard the word "hyperacusis" and simply thought that my sensitivity to sound was another aspect of my tinnitus.  I did not bother with contacting a doctor, as I thought it would be worthless, due to what I had read for many years in the ATA newsletter. 

 

My wife did not like the purple Wal-Mart earplugs I was wearing, so she searched the web for flesh colored ones.  She found the Hyperacusis website in early November, 2007.  I read everything on the site and ordered the pink noise CD (not the earplugs).  There were no (and still are no) TRT trained doctors in Wisconsin, so I decided to try self treatment and seek professional help if that failed. 

 

I had just retired in June (nothing to do with my hearing, but it would have been very difficult working when my hyperacusis was at its worse).  Retirement allowed me to listen to pink noise at home for as long as I needed to.  My only protocols were what I read on the network website and the write-up provided with the pink noise CD.

 

In mid December, 2007 I started fairly aggressively with about 2 hours of pink noise daily, as I listened to music and worked at my computer.  The music and pink noise were played on separate stereos in the room.  The pink noise was fairly loud, but at a level I could easily ignore.  In about 2 weeks I had significant hyperacusis improvement, enough that I attended a family gathering (at which I used earplugs).  Within several more weeks there was additional progress.  After that things improved slowly.  Since March, 2008 I have had pink noise playing continually in my office, where I spend many hours daily.

 

During the first months of therapy, my tinnitus was significantly worse.  Now it is probably back to where it was, but that is pretty much impossible for me to measure.  What I can say with certainly is, I can easily ignore my loud tinnitus, which has always been the case, except for a several month period after starting treatment. 

 

This past summer I had become sloppy in managing my fear of sound and my hyperacusis started getting worse.  I rededicated myself, made quick hyperacusis improvements, and am now in the best condition I've been in years.

 

mark  


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Mark Bergemann
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LynnMcLaren

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Reply with quote  #14 
Yes, (((( Smiles ))))

I agree with what Debbie expressed..

No, this is not psychological, med science does not yet understand what causes these auditory system responses but they are physical.

Yet...
I also agree with what Mark expressed.. 

Simply keeping myself from getting upset with the situation seems to be OK, but having a positive attitude would be better, I think."

A healthy balance.. (((( Smiles ))))

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saab1216

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Reply with quote  #15 
Mark, Thanks for sharing your story and your long recovery. Is it at best, a small sound sensitivity that you now have? Is it really possible to have NO hyperacusis? It seems to be treatable to an extent but some problems still linger in my case. I still have tinnitus but the hyperacusis is at a steady low profile for me. I know its still there while listening to audio and television equipment the most.
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markbergemann

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Reply with quote  #16 
Paul H,  I suppose comparing my current hyperacusis to the worst level I once had, it might be considered small today, but compared to normal hearing, I still have a major issue.  I cannot have anyone speaking toward my more sensitive left ear.  I cannot be in a small room with several conversations going for more than a few minutes.  High pitch sounds like a female soloist or bells are still a disaster for me.  So even though I had no problem at a movie theater and (with earplugs) can be at hour long fireworks, I still have issues.

I assume that my hyperacusis will be with me for the rest of my life, but I know how to minimize its effect, and have a normal life.  It does stop me from doing some things.  I have not played my trombone for years.  I have found plenty of other things to take the place of those things I have lost. 

mark 



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Mark Bergemann
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whf

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Reply with quote  #17 
jackid, I don't know if I can add much to what has already been said by sharing my story, but don't give up.  I am new to this site, but my hyperacusis and tinnitus started 21 years ago, and I was lucky that I found one ENT who actually knew what was going on, as he was on the board of advisers of the ATA.  Even with a excellent ENT, there was basically no information available at the time and for the most part I was alone with this condition.  I gave up looking for answers years ago.  I managed with earplugs and hearing protectors for almost 20 years and gradually the hyperacusis improved to where I could have a conversation without earplugs and I could tolerate the tinnitus, even listen to music.  Late last year, I suffered an awful setback, because of alarms, like you.  I have felt devastated and completely lost in the last month, to the point being unable to function because of lack of sleep and the thought of having to go through it all over again, with the tinnitus much worse this time.  The difference is that I have found and made use of this site and with it, much more information than I ever had before, and others who can help.  I still have a few tests at the ENT to go, but I have made an appointment at the nearest TRT office in 2 weeks.  I am glad that you found this site too and have decided not to be beaten.

Bill

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