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theworldonmute

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Posts: 6
Reply with quote  #1 
Hi everyone,

I hope you're all having a nice day.

I am SO glad I found this site. I've been struggling with hyperacusis for 8-10 years but it's got progressively worse in that time and since I've realised what it is (I used to just think it was me being a grump!) I've realised that my situation is really quite severe.

Bit about myself... I'm a 30 year old woman from the UK. I live with my partner of 9 years in a suburban area. I work for myself, from home. I do a lot of distance running and I'm a vegetarian.

My noise triggers are (main ones first) - traffic (so cars moving along the road in general), children - crying, screaming, even talking - the wind - then just more general ones like dogs barking, TV adverts/radio adverts etc.

There are some sounds I quite like, I like the sound of the rain (lightly) and I like windchime/peaceful sounds. I think that I associate certain sounds with danger/threatening situations but I know it's completely illogical because the cars aren't on the road to run me down and children aren't put on the planet to annoy me (although it certainly feels that way with this condition!)

I've read a few of these messages and I seem to have the same coping mechanisms - ear plugs, noise-cancelling headphones etc.

I spend almost every day wishing I was deaf and fantasising about a world on mute - hence my name! I know that's a terrible thing to say but I really do feel that way, like it would be such a burden off my shoulders.

I've tried to explain this to a doctor years ago but he didn't understand. I tried to explain about a week ago to a new doctor and again, they didn't understand. I feel like I'm just hitting my head against a brick wall all the time as no one really gets it (Apart from this board!)

My distance running is the only thing that keeps me going. It's a huge passion but even the happiness of that gets destroyed as in races, I'm not allowed to use an iPod (I use one in training to block out traffic noise) so I have to endure the sound of all the cars going past. It's been so bad sometimes I've been on my knees crying which isn't exactly great when you're running for a position in a road race....

I get frustrated, depressed, feel empty and very angry about the noise. It's isolating and scares me a lot because I don't like the person I have become because of it - but then, it's not like I asked for this.

I have been referred to an ear, nose and throat specialist but I'm wondering what that will do? Has anyone had an appointment what happened? I have had CBT for depression before but I found it completely useless.

Anyone else in the UK?

Would be great to hear everyone else's stories :] really look forward to hearing from some like-minded people!

Katy
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Aplomado

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Posts: 711
Reply with quote  #2 
I recommend getting an appointment with an audiologist in the UK that does tinnitus retraining therapy (at the top of the board there is a listing of audiologists).

In my experience, ENTs were not helpful at all.
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theworldonmute

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Posts: 6
Reply with quote  #3 
Thanks for your post. Why was it not helpful?

What is the difference between the two?

Thanks
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Aplomado

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Posts: 711
Reply with quote  #4 
ENTs are surgeons, and aren't trained to deal with hyperacusis.  I saw 4 ENTs and none of them helped.  Now, maybe you have some problem an ENT can deal with, I don't know.  If you have typical hyperacusis caused by loud noise exposure, I doubt they will do anything.

If you do a test of your loudness discomfort level (LDL test- it is standard for diagnosing hyperacusis) make sure you tell the audiologist when the noise is uncomfortable to stop it.  Don't let it get painful.

A few audiologists are trained to deal with hypearcusis.  Not all are equally good though.  I know there are trained audiologists in the UK.
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theworldonmute

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Posts: 6
Reply with quote  #5 
Thanks, I'm going to ask to change my referral to an audiologist, not ENT then. Will see how I get on from there...
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Aplomado

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Posts: 711
Reply with quote  #6 

Here's an audiologist in the UK that deals with hyperacusis:

http://www.tinnitus.org/

You should see an audiologist trained in TRT for sure.

Thinking it over it MIGHT be a good idea to sometime visit and ENT to rule out an obvious ear abnormality causing your problems.  For most of us, ENTs are useless though.  Typically there is nothing for the dr to see.

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saab1216

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Posts: 400
Reply with quote  #7 
Yes,I Concur. See an Audiologist. TRT helped me to beat hyperacusis.
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Laurac1960

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Posts: 16
Reply with quote  #8 
My H became much worse this year after a session with my dentist. Six months prior to this, an ENT doctor confirmed Hyperacusis and sent me away with mild sleeping pills.

I had 3 months of hell, not sleeping, running away from the house to get away from the boilers, fridges and other buzzes in the street. I cancelled 2 holidays and numerous nights out, became isolated and had to rely on friends and family to feed me as I became so weak. I was prescribed various drugs with nasty side effects, told I was depressed (I'm not) and when my doctor prescribed pills for bi-polar and schizophrenia, I realised this was not the way forward.

After another appointment with an ENT consultant, my hearing was described as perfect and because of some pain in my left jaw, realised I probably had TMJ which also causes Hyperacusis. My dentist has been great and made a mouth guard in case I'm grinding my teeth at night. This has helped and I'm now awaiting another appointment with Maxillofacial to further investigate my jaw.

I am also paraplegic and use a wheelchair to get around, I hand cycle when I can to tire myself out. I use Bose in ear headphones to distract me from noises when out and about. At night, I play a waterfall and bird singing download on my Ipad, via a Bose speaker as a distraction.

The good news is, that I managed a music festival in August and will be flying to Egypt this weekend. I will use Bose quiet headphones on the journey. I had to learn to tolerate the noises which freaked me out and not be scared by them. I even laughed when helicopters spent an hour above my house one evening.

I have to keep my mind distracted from the buzzes and have music on constantly in the background, I am relying on pills to sleep and some Valium at night but have a much better quality of life now I regularly sleep for at least 4 hours each evening.

I still want to find a "cure" for my H, but am learning to live with it and trying hard (mentally) to distract myself from it and would say life is good again. Dealing with this has been harder than my spinal injury 20 years ago, there is certainly less support and knowledge around Hyperacusis from the NHS.

I have found a local support group too who have been great.

I wish you well and maybe the above story will give you some hope,

Laura



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Aplomado

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Posts: 711
Reply with quote  #9 
Laura, have you tried TRT with an qualified audiologist?
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Laurac1960

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Posts: 16
Reply with quote  #10 
I am trying to find someone trained in TRT in the South of England, preferably Hampshire.

Unfortunately the Audiologist I saw didn't refer me as the ENT consultant had already sent my files to Pain Rehab for them to assess if I needed a Psychiatrist or Psychologist. They referred me to a Neuropsychologist but he wouldn't see me as I don't have a brain injury.

After a few more weeks and assessment by Talking Change, I was offered Mindfulness but this would be for depression and anxiety which I don't have.

I have been back to Audiology but my next appointment is in December, I have asked if they would look into referring me for TRT at reception but have had no reply.

I'm now using the PALS service to get some assistance but have been waiting 3 weeks for a reply.

Fortunately I have been able to find plenty of information online and have a local Tinnitus support group so I am coping and sleeping better.

My Doctor has also referred me to Physiotherapy and Maxillofacial but I've been waiting since 2nd June for a Physiotherapy appointment and Maxillofacial don't have the X-rays of my jaw so I have to go back in November.

I'm off on holiday Monday and will deal with this when I return but thanks for getting back to me[smile]

Just wish the NHS had the funding it needs to ensure people with this condition are dealt with more effectively and not waiting months to get the help needed.

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Aplomado

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Posts: 711
Reply with quote  #11 
Laurac1960, if your hyperacusis is not responding to your TMJ treatment, you should make it a priority to start TRT.  (Sometimes hyperacusis is treatable by TMJ treatments and / or wisdom tooth removal, but most is not).  Hoping things will get better on their own generally doesn't work well.
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whale

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Posts: 23
Reply with quote  #12 
Quote:
Originally Posted by Aplomado
I recommend getting an appointment with an audiologist in the UK that does tinnitus retraining therapy (at the top of the board there is a listing of audiologists).

In my experience, ENTs were not helpful at all.



TRT can help, also don't give up on treating your depression.  Depression can be the root of al this.  Your mind needs to have a certain plasticisy and clam to heal. its not a quick fix and there are ups and downs but it the long run our mental health is essential for coming out of this. 
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jimmybpowell

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Posts: 27
Reply with quote  #13 
Good luck on ENT and Audiologist ! and the other suggested gadgets.

After three and a half years i am having some success and wanted to wait a little longer before I talked about it.  But after hearing your story I will write some.  

My Mom had Meziere's disease in 1964 and they gave her Librium.  As a young 25 year old I took it occasionally for anxiety.  Now I have noticed in the literature it has a Metabolite  that last 400 hours in the body (having a half life of 200 hours!). The Librium itself has a half life of about 12 to 24 hours and I am taking 10mg  twice a week and having some success.  I am thinking the second metabolite helps the most. Does it stop the loud noises?  NO!  But it is helping me handle them much much better. Even my wife's screaming during her TV football watch did not drive me away yesterday.  Will this keep up  I don't know.  Since we are all different, whether it would help you I can't say, but for the first time I am doing better.  I may try that new surgery discussed in this Message Board if this fails but I would rather not - till I know more.  

Jim

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