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sueichner

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Posts: 1
Reply with quote  #1 
IF ANYONE OUT THERE HAS HAD AN IDIOPATHIC SUDDEN SENSINEUROL HEARING LOSS, THEN PLEASE REACH OUT TO ME. I WOKE UP ONE MORNING 2 MONTHS AGO AND I COULDN'T HEAR OUT OF ONE OF MY EARS. I HAVE EXTREMELY BAD T & H ALONG WITH IT AND FEEL LIKE I AM THE ONLY ONE IN THE WORLD. I HAVE AURAL FULLNESS AS WELL. I FEEL LIKE I COULD HANDLE THE HEARING LOSS BUT I CAN'T HANDLE THE OTHER SYMPTOMS OF THIS ACUTE EVENT. NO ONE SEEMS TO BE ABLE TO HELP ME. PLEASE HELP ME TO KNOW I AM NOT THE ONLY ONE IN THE WORLD WITH THIS. I AM DESPERATE.
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Susan Yoke
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Beebee

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Posts: 1
Reply with quote  #2 
Hi there,
This is the first time for me on this site, you have my sympathy because I am exactly the same. I feel like I am in some bubble that I cannot escape from, no one realised how serious this is and how desperate I feel...but there seems like there is no help out there at all. I am finding simple daily tasks so difficult to keep up, and the panic attacks I'm having are awful. Some days I just feel like if this is how it's going to be for me for the foreseeable future I would rather not be here! All I can say is if there is us then there must be so many more. ...I just wish I had some answers and tips on how to get through the this.
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aprilwine

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Posts: 8
Reply with quote  #3 
sueichner and Beebee, I'm so sorry you're going through this. You're not alone. I don't have the hearing loss, but I do have hyperacusis. Sometimes it does feel like your world is getting smaller. I wish I had advice on how to deal with the sensorineural hearing loss, but at the very least I can tell you it hurt to read your post. You're both in my thoughts and prayers tonight. God bless.
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Peter
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sheep

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Posts: 9
Reply with quote  #4 
Hello there Sueichner, Beebee and Peter.  This is my first attempt at using the message board.  I am in the UK and there is nothing like this that I can find here and I have to say, trying to get help and effective medical advice with my composite problems of severe hearing loss, eustachian tube dysfunction, severe tinnitus and now terrible hyperacusis, has been and still is a real nightmare, which I would not want to inflict on anyone.  My battle carries on and I was very sad when I read your messages.  I empathise with you so much and fully understand the frustration, anguish and above all - I am finding more and more now - the loneliness of having to cope with an awful multiple condition whilst everyone around you has absolutely no idea of what life is like for you.  So it won't help you much, but my thoughts are with you and I hope something comes along for you which will at least provide some help.
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Lorraine shearing
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judie

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Posts: 7
Reply with quote  #5 
I'm so sorry that you all are suffering. I suffer from the same things. I do wear ear muffs and ear plugs, sometimes together. They help me in the outside world. If a place is to loud, then I leave. You are not alone. Sending hugs to all. Judie Kevany

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supra97

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Posts: 16
Reply with quote  #6 
Hello Sueicher and Beebee, I also am very sorry to hear what you are both going through. I have severe hyperacusis 4 yrs now. Don,t give up! ENT,s are not so educated in this. A Neuro-ontologist may be of more help. For hyperacusis alway,s be prepared for anything but don't anticipate it,you stay in anxious state if you do. TRT does help either nature at a park and or sound therapy. I hope the best for both of you.
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Mark Fiorenza
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gardennut

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Posts: 140
Reply with quote  #7 
My sympathies are with you. Even though there are many people on this network it still seems it's an extreme minority in the world. My suggestions are to use earplugs and muffs to survive. Search out possible treatments as suggested by others, e g pink noise Cd  through this network, TRT training if it can be found.
Also seek out quiet activities if possible. The reason my handle is gardennut is for that reason. A quiet community garden or back yard is my savior. People who garden are generally understanding I find, and it gives a sense of accomplishment. It's no really that hard. Also reading is a good way to take your mind off your situation and be immersed in the problems of ohers.
Continue to post to this network so you will not feel so alone......   Donna Keddie

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Donna Keddie
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