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keith

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Posts: 45
Reply with quote  #1 

I finally made it to London yesterday for an appointment with Jacqui Sheldrake at the Hyperacusis Centre.

 

What a wonderful experience it was meeting someone who understood what I was talking about. We did some hearing tests beginning with the standard audiogram that showed no hearing loss and then the loudness discomfort test that came in around 60dB.

 

Jacqui remained positive throughout and after explaining the results said she was very confident about being able to help me and improve my sound tolerances. Her diagnosis was hyperacusis and phonophobia.

 

Moulds were taken of my ears and I will go back in a few weeks for a fitting of sound generators.

 

An invoice for the initial appointment will be sent out but I am told it will be around £300. The next appointment will be about £140. The sound generators are to be on loan to begin with but will be around £500 if I decide to keep them.

 

I wish I had made this appointment before now as I have lost so much time with doctors in my area who have been unable to help me.

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Rob

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Posts: 4,049
Reply with quote  #2 
Great news, Keith.  Good for you. 

Rob
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RJ

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Posts: 17
Reply with quote  #3 
sounds good Keith! 
did Jacqui also give you directions about what kind of sound to use at night or how fast to turn up the volume of the WSG's?
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Kendall85

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Posts: 7
Reply with quote  #4 
Hi Keith,

I also had my first appointment with Jacqui Sheldrake yesterday, i got the train down from the North-West.

Although the clinic is not cheap, i think the payment for the first appointment was worth every penny to meet someone who has first class knowledge and interest in Hyperacusis. My girlfriend also sat in the meeting and now has a far better idea of my condition and the treatment which is available to me.

After months of being told by GPs that my problem was due to an ear infection and the NHS ENT consultant who showed no interest in my condition, i left the clinic yesterday with my spirits uplifted and confident that my condition can be treated. Jacqui even took molds to get me a set of musicians ears plugs made up for events which require 'hearing' protection in the future.

I felt so positive after my appointment that we headed into London after wards for a meal outdoors at a quiet restaurant, something i have not done in a while!

I would also like to thank Dan for this website, as without it i would have no idea of why i have trouble with sound and even more importantly, how could i get treatment.

Many Thanks

K85.            
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Cheesecake

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Posts: 52
Reply with quote  #5 
I am seriously considering also making an appointment here. My life quality is getting close to zero at the moment. Overall is treatment costing about £1000? And do you have to pay for the sound generators straight away or can you keep paying it off.

I'm so glad you guys have found something that will help you. I guess the cost doesn't matter when it comes to health.

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aQuieterBreeze

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Posts: 2,083
Reply with quote  #6 
Hi Keith,

I've heard that sometimes the clinician one goes through for TRT can make a big difference -
Thanks for helping us see what it can be like - to go to someone who is very knowledgeable about these challenges,  really cares, and understands......


K85,

Thanks also for your post - it's good to see the positive difference a truly knowledgeable clinician can have for someone with these challenges.

Wishing both of you much improvement and as smooth a path as possible as you move forward with treating these challenges.
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keith

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Posts: 45
Reply with quote  #7 
Hi Cheesecake,
When I first enquired about treatment I was told it would be around £2500 in total but this would be over an 18 month period. I guess it depends how many times I actually need to go to London as Jacqui is happy to do some follow up work over the phone or by email.

The sound generators are on loan to begin with and I beleive I will be charged for them if I decide to keep them.

RJ.
We did not talk about sound enrichment at the initial appointment and she will give instructions on the WSG's at the next appt in September.

What do you use for sound at night?



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RJ

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Posts: 17
Reply with quote  #8 
Hey Keith, I use the Pink noise cd from the Network for sound enrichment at the night.
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Cheesecake

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Posts: 52
Reply with quote  #9 
Thank you for the information Keith. I'm going to see my ENT again in 2 weeks I'm sure nothing good will come of it but will see how I get on from there.  Really having a rough time at the moment just need a clear direction of where I should be going with treatment

Thanks again

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Rob

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Posts: 4,049
Reply with quote  #10 
Cheesecake --

If you think you have hyperacusis, go see Jacqui.  You would not be in better hands. 

*****

Kendall85 --

Great to hear.  Your experience at NHS was, unfortunately, a pretty typical one for someone with hyperacusis.  It is wonderful that you had your first appointment with Jacqui.  They do a great job there and have a very high success rate for individuals with hyperacusis and phonophobia.  Best of luck.

Rob
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Kendall85

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Posts: 7
Reply with quote  #11 
Rob/aQuieterBreeze

Thanks for your encouragement, Jacqui thinks i have mild Hyperacusis and Phonophobia (although i still find it distressing) and she was confident that i can get a good result, before we then address any residual tinnitus issues.

Cheesecake

Have you considered just visit Jacqui to determine if you have Hyperacusis or not? A diagnosis may be helpful and then you can move on from that point.

If that is not possible, Aintree Hospital in Liverpool has a Audiology, Tinnitus and Hyperacusis clinic which may be able to help you under the NHS. I tried to get an appointment at this clinic as i only live 5 miles away under 'patient choice', however i was told these services were available in my local area (Wirral) but i could find anything of a similar nature in my area. Therefore i just gave up on fighting with the NHS and decided to 'go private'. However, if you are seeing an ENT soon, maybe you explore if you can get a referral to this clinic (if you could travel to Liverpool).      

Best of Luck

K85

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aQuieterBreeze

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Posts: 2,083
Reply with quote  #12 
Hi K85,

You mentioned -
Jacqui thinks i have mild Hyperacusis and Phonophobia (although i still find it distressing) and she was confident that i can get a good result, before we then address any residual tinnitus issues.

When you say you find it "distressing"  ....
Are you talking about the hyperacusis, which even when mild could be distressing.for someone -
or are you referring to the diagnosis itself ?

If you have hyperacusis (even if mild) - to understand that, understand a few things about hyperacusis (and it's associated challenges) and address it in a positive manner can be really helpful. Also from what i have heard,  when someone goes through TRT and has hyperacusis and tinnitus -the hyperacusis is usually treated  first.

Wishing you the best as you go forward
P.S. Re phonophobia - When one has these challenges, to have some fear of sound is very understandable,  and something i don't think is too unusual either.
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Kendall85

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Posts: 7
Reply with quote  #13 
Hi Breeze,

It is the hyperacusis which i find distressing, not the diagnosis. I thought from my own research that i had hyperacusis but have had no proper diagnosis until i attended the clinic in London and now i have a plan for recovery. I do feel guilty sometimes as compared to some people on this site my Hyperacusis does seem mild, but it has had an impact on the quality of my life.

After attending the clinic and reading some of the previous 'good news' posts on this site (including some from a chap in the Netherlands), i am in a much more positive frame of mind and looking forward to recovery. I even think my Phonophobia has decreased to some extent from following my initial session.       

This website/forum has been vital to my understanding of this condition and how to seek help for it.

Thanks for your good wishes.

K85 
   

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Cheesecake

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Posts: 52
Reply with quote  #14 
Rob yes I agree, I need to see Jacqui, my symptoms have become worse. I was at work from 10am yesterday and did not finish until 12pm today (i do sleep-ins) felt as though I was having a nervous breakdown and have decided to hand my notice in on Monday... therefore money is even more of an issue now :s

K85 thank you so  much for that information, I am in the North West and actually paid private to an ENT in Manchester, wish I'd have known about Liverpool! I will ask my ENT at my next appointment. Patient choice just makes me mad, its supposed to give you an option but really it just limits. My choices on the NHS were I think between 2 of the top 3 worst hospitals in this country that is why I went private..






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Rob

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Posts: 4,049
Reply with quote  #15 
Cheesecake --

You will make even more progress, and faster progress, with hyperacusis therapy if you are working.  I know it's very hard and you feel like handing in your notice.  But if you can, it's real important to try to hang in there.  At least, schedule some time with Jacqui Sheldrake and go talk to her first before you make a major decision about leaving work.  I've been in your shoes, and one of the best decisions I made was to do what it took to continue working.  By doing so, I exposed my auditory system to sound on a regular basis and that is, as you will learn, an extremely important part of re-establishing our sound tolerance.  Call the Hyperacusis Centre on Monday. 

Rob
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Cheesecake

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Posts: 52
Reply with quote  #16 
Hi Rob,

Yes I do agree with what you are saying. I've however told my employer about my problems and that I cannot work in a loud environment at the moment. They are not actually listening to me though and have not accommodated to what I have said, even though they can. I believe I damaged my ears in this environment also... I know its probably a bad move but for the sake of my sanity I think it's something I'm going to have to do. I am looking for new jobs and have some interviews lined up...

Take care

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Rob

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Posts: 4,049
Reply with quote  #17 
Best of luck with everything Cheesecake.  Sorry to hear you're having a tough time right now. 

Rob
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aQuieterBreeze

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Posts: 2,083
Reply with quote  #18 
HI K85

thanks for your reply -

When sounds sound different to our ears, and sound in general seems louder -
and sometimes our hearing/ears may be more sensitive than at other times...
it would be difficult for it not to be at least a bit distressing.
Having a better understanding can help alot though.

There's nothing to feel guilty about, about having a mild case of hyperacusis -
yes, it can affect someones life  - even if it's mild
To understand more about hyperacusis can be really helpful.
Tinnitus by itself, even without hyperacusis can be quite distressing too -
but it can also become much less distressing  overtime.

When it comes to these challenges - don't feel guilty.
Treat yourself well .... understanding more about these challenges and a bit about sound
and how sound affects us - can be really beneficial.

Wishing you the best of everything as you go forward.
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