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Cathu

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Reply with quote  #1 
Well...Hi there every one. I hope today is a good day for you all.
Today the power is out. I always thought that my house was buzzy after micro suction. I would turn everything of that I could..and still was buzzy. But today with absolutely ZERO POWER within kilometers, My head is still SCREAMING. So it all is in my head.
ENT reckons my Anxiety has triggered my T and H and the Micro suction not to blame. He tells me to * take drugs and enjoy life..* Will be seeing my 4 th ENT in December. Hopefully they will b e a bit more constructive.

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janeygirl

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Reply with quote  #2 
I went through the same thing and for a long time. I wish I would have gone ONLY to those who were familiar with Hyperacusis and I know I was able to get a list of good folks from this message board but also the Tinnitus Association. I still had to call around and talk with each one to find out if they did TRT and all. I understand!


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Jane Parks-McKay
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Cathu

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Reply with quote  #3 
Hi Janey Girl
How are you?
Hope you are having a good day.
I am up to my 4th ENT coming up in December.
Hopefully he will have some constructive ideas and not to  just say."enjoy life  and take drugs.."
With my new GP I have a Mental health plan appnt next week  for a psychcologist
My last GP, I had  to beg and pleade fora counsellor/psychiatrist/ neurologist  and she made it very distressing. I travelled 3 hours by bus  and had to spend 500 on accmm. and when I got to appnt. my referral hadn't arrive..  great drama .
I had never met such a NON Pro active GP. Glad to be rid of them.

How did your Hyperacusis and tinnitus start Janey?
What kind of treatment have you had?
Coming up to a year for me..   nightmare.
Thanks goodness  there is this forum  to meet  and chat  here.!!
Cheers
CATH


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janeygirl

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Reply with quote  #4 
Hello there: good to hear from you and I'm sorry it took me so long to respond. We have had a death in the family. The Hyperacusis began from staying in a motel room in Long Island with a malfunctioning alarm right outside the room, for well over 24 hours. There was literally no place else to stay as it was Christmastime and there was a blizzard. Oh how I wish we would have just gone back home! After trying all sorts of things (including having a white noise machine next to the bed to relax me, trying valerian, forcing myself to be around loud noises, pink noise tapes, etc) I decided to go the gold standard rate and do TRT. At that time, now retired Dr. Susan Gold was running the program, they used the P. Jastreboff model. I did call and consider others but one I decided closer to me was not as experienced and only did an occasional TRT case. As it turned out, we became good friends and he was always interested in hearing about what I learned. In fact it's time I probably got back to him, some had taken the training to make a lot of money but soon learned that we Hyperacusis patients were pretty time intensive. University of Maryland was where it all happened and it was a great choice. It was not that pricey either in he whole scheme of things. I caution you on any psychologist, it has to be someone who is experienced with tinnitus and Hyperacusis and does CBC, cognitive behavioral therapy. Many therapists do it but find out if they have worked with people like us. There is a site you can look at to locate clinicians who are trained by the creator of CBC. I talked with him too. I talked with everyone including P. Jastreboff and his wife. I hear she does TRT in Maryland at another university last I heard. Yes Cath, it can be nightmare but there is hope for sure. There are many ways of treating this and I also think that if people don't try TRT, trying some of those modalities but do try and see if you can work with someone trained in TRT if you can. The Tinnitus Association can help with that, you'll still need to do your due diligence and call around and find out how often they work with patients for Hyperacusis, and how knowledgeable they are and if they use the Jastreboff method. For me I started at the University of Maryland but a year and a half later when it was time for another Loudness Tolerance Test, i found someone out here on the west coast not far from me. I understand from one of our fellow network members that she is no longer there. 


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Jane Parks-McKay
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janeygirl

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Reply with quote  #5 
Cath, I forgot to mention that I too went to the ENT route, you'd think they would know about it, maybe they know more about it than when I was trying but one I met with and he said all I had to do was to drink hot milk at night and then he smacked his lips and said yum, yum and that was it. When I got the brochures on the network and the tRT protocol, I went into his office and hand delivered with brochures with a note to him that perhaps he may start learning about TRT and not just hot milk...
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Jane Parks-McKay
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Cathu

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Reply with quote  #6 
Quote:
Originally Posted by janeygirl
Cath, I forgot to mention that I too went to the ENT route, you'd think they would know about it, maybe they know more about it than when I was trying but one I met with and he said all I had to do was to drink hot milk at night and then he smacked his lips and said yum, yum and that was it. When I got the brochures on the network and the tRT protocol, I went into his office and hand delivered with brochures with a note to him that perhaps he may start learning about TRT and not just hot milk...

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Cathu

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Reply with quote  #7 
Hi Janiegirl
how are you sorry to hear about your loss I just had to move away from my home because we've got serious bushfires and I'm home tomorrow night so I hope to write you a long message then take care and I hope you're feeling better
Cheers
Cath

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