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emily

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Posts: 28
Reply with quote  #1 

 OK, Im confused, how is it when I feel pressure and lose hearing with E/Hdrops do I still feel extremely sensitive to sound which exaggerates the loud rumbling noise in my ear. Its hard to explain that Ive suddenly gone deafer yet Im more sensitive to sound? Ive noticed the H/E is worsening and Im scared of losing my hearing completely..........any tips good folk before I lost the plot ? Emily.
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kimberleydust

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Posts: 91
Reply with quote  #2 
Hi Emily - the rumbling noise sounds to me like Tinnitus not Hyperacusis.  Sounds like you have that as well as Hyperacusis and E/H??  My brother is deaf (born deaf) and he has Tinnitus - apparantly a lot of deaf people do...these noises are going on inside the head and the sound is conducted through the bone - different to hearing noises from outside...
I haven't looked up E/H yet but will do a little study on it - in the meantime could you explain a little more about what it is and why there is no treatment for it? 
Are you able to play background sounds or listen to them through an MP3 player?  Or is this upsetting for you?  I am ok with background noise if it is very soft (at this stage)  Too many different noises are a problem for me....

Feeling for you - know what you are going through - albeit I don't have the fear of losing my hearing (some days I wish I could! but no wouldn't like to really).  Is hearing loss part of E/H.  If not you don't need to fear it happening because of  T or H - they don't work in that way....

Hope your day gets a bit better...let us know how you go - don't worry about how many times you have to post...this is our safe place to share....
hugs
Lou

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aQuieterBreeze

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Posts: 2,083
Reply with quote  #3 
Hi Emily,
I don't know alot about hydrops or meiners disease (sp?)
but wonder from what you have said previously if you were diagnosed with hydrops?
Or meiner's - or are they the same?
 (I am under the impression they MAY be different, though I am not sure )

You mentioned-
Its hard to explain that Ive suddenly gone deafer yet Im more sensitive to sound?

Have you talked to your clinician or specialist about the hearing loss you mentioned?

Does your hearing return to baseline or what is "normal" for you at this time
after these episodes you mention? (If there has been more than one?  Or is the hearing loss  you notice  increasing overall?

Sorry to hear what you are going through -

you mentioned -
Ive noticed the H/E is worsening and Im scared of losing my hearing completely

Are you saying your hyperacusis and the hydrops are both worsening?

Hyperacusis can be affected by sound, being around sound that is too difficult can make one even more sensitive -- to sound, though i do not know if you have been around sound that is too difficult / loud  for you?

If you are noticing hearing loss - I wonder if it is possible that you are turning up the other sound around you to a point or volume level - that it is uncomfortable and more difficult for your hyperacusis? Though I don't know. (And would have no way of knowing)

Though I do not know much about hydrops and meiners, and how those conditions would affect things.....with hyperacusis, in general  using gentle sound (such as sound enrichment) that one IS  able to tolerate, and finds tolerable and pleasing
at a low volume that is comfortable and tolerable, for background sound  can be helpful ..
but being around sound that is too loud, for someone with hyperacusis to tolerate - can make one's hearing/ears more sensitive to sound for awhile,
and when that happens it's best to take it a bit easier around sound )
Improving ones tolerances with hyperacusis is a gradual process.

If you have been around Loud  sound lately, it may explain increased sensitivity  - to sound (as far as hyperacusis goes)  But as i have mentioned i am not in the medical field, and do not know much about the condition you mention -
And I think  it would be a really good idea to discuss what you mention with your doctor or specialist.

Wishing you much better days.

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emily

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Posts: 28
Reply with quote  #4 

Hi, Kimb

  Hi, Kimberly,

Hi, Kimberly Thank you for replying. Yes I do Have Tinnitus (for nearly30yrs) various sounds and    one particular dominant one is the   high pitched pulsatile ringing. As I mentioned I also have sensitivity to certain sounds(Hyperacusis ) but the EH episodes drop on me suddenly , instantly my hearing is affected  and  a  roaring noise starts inside my ear .It is a more extreme form of sound sensitivity, where the sound becomes magnified by the ear and it reverberates inside my head and this becomes far louder than the original sound. It usually last around two to three days (and nights) builds up to a crescendo then eases off then returns every few days. In between those days I am trying to recover while coping with the Tinnitus and Hyperacusis. My weight has dropped dramatically these past few months. I eat a well balanced diet and I keep occupied etc to keep the stress levels low.

I have researched as much info as possible and last week found a name for the latter condition. I believe is called Recruitment!! Now I see it in print I know what I’m dealing with.

On my Birthday (yesterday) I decided to set myself a goal and invested in a “Sound Therapy” program and also started on a high protein diet. The sound therapy is quite hard to adapt to with EH even though I have it on the lowest volume level. I am starting slowly with two hours daily. This roaring and reverberating noise is unbearable but I am determined!  I appreciate your caring thoughts, I feel for you too and sincerely wish you the very best, God bless you Lou.

  Keep smiling, Emily

Than

Hi, Kimberl

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emily

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Posts: 28
Reply with quote  #5 

Quieter breeze.

                              Thank you for your interest and input,I was informed by a  DR that  a person can have Endolymphatic Hydrops without the dizziness- according to what I have read it is a form of Menieres.Yes, I’ve spoken to the ENTS and my Dr about the loss of hearing during the EH episodes and (as I stated in a previous post) I was informed that unless I had extreme vertigo the ENT can do nothing.  When the episodes of EH ease my hearing does return to normal (whatever that may be as my hearing is slowly deteriorating due to EH) but I still have the Hyperacusis and Tinnitus. With the Hyperacusis It took me 16 months to adapt without ear plugs and I avoid loud places and when and if possible I have the TV and radio low. The hyperacusis has improved slightly through hard work and information from this site. It’s the EH which has the worsening affect on me. The sound therapy helps to ease the stress of the Tinnitus and Hyperacusis but during an EH (which I have now) as I sit here in typing all I can hear is a roaring in my head which worsens with EVERY external sound.. I have only one hearing ear and this is the one affected! 
 I wish you better days too. Keep smiling, Emily.

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kimberleydust

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Posts: 91
Reply with quote  #6 
Hi Emily - I just can't imagine what that would be like - to have that noise constantly in your head with H & T.  There would be no escaping.  You are doing well and have a great positive attitude - I try to but it sure gets you down, daily...I have started making a butterly jigsaw puzzle and am enjoy that - trying to keep my mind busy on something else.  It is 1000 pieces but I seem to be getting through it pretty quick - I get hooked and can't stop!! I have another one coming! 
Yes - better days ahead for you too...

Hugs
Lou.
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aQuieterBreeze

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Posts: 2,083
Reply with quote  #7 
Hi Emily,

you mentioned -

The sound therapy helps to ease the stress of the Tinnitus and Hyperacusis but during an EH (which I have now) as I sit here in typing all I can hear is a roaring in my head which worsens with EVERY external sound.. I have only one hearing ear and this is the one affected!

Does that happen even with very gentle nature sounds .....like the sound of a very gentle breeze blowing through the trees, or the sound of a soft or light rainfall - or the sound of a gentle stream ...

Though we are all different in what we are able to tolerate ..... and some of us  have different challenges
Sometimes the more gentle natural sounds may be more easily tolerated and even soothing when other sounds are too difficult to tolerate.

Someone else on this board who has pulsatile tinnitus (which i do not have) seems to find many sounds seem to compete with her tinnitus  (instead of blending in with it in the way I think masking can help make tinnitus less noticeable ) and she mentioned some things awhile back in conversation on the board .....

I had written  (to Liz) -

From what you had said (in the other thread) I had gotten the impression that the sounds of nature (at least in some cases) may be ok, where other sound is more difficult.......

and in this thread you mention-
(Liz mentioned )
I do sometimes use a nature cd, but I was interested in the programable s/g's because s/g's go with me wherever I happen to be.  Sometimes when I am outside I get the original nature cd(!) but moving around indoors as I do, I wouldn't always be within earshot of the cd player.


and Liz also mentioned -
what I meant when I wrote about the 'original nature cd' outside, was that when outside I hear the real thing, birds, insects, wind in the leaves etc.  No need for a recording outside.

Having a cd playing in every room means buying more cd players!  Maybe I'll go to a garage sale or something.


And I wrote -
It's good to hear that you have a nature CD that you find tolerable, and hopefully soothing  :-)
Nature can be very soothing ........



You mentioned -.

..... I avoid loud places and when and if possible I have the TV and radio low......

Though I have no idea if some gentle nature sounds would be tolerable and soothing  for you or not - perhaps if you have not yet tried something in the way of gentle  nature sounds (something  you find soothing and pleasing, and easily tolerable ) for background sound at times - maybe it would be worth considering?

Thanks for the good wishes.....and Happy Birthday to you....
May the year ahead, bring you more happiness than you can imagine.
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emily

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Posts: 28
Reply with quote  #8 
 
 Hi Lou,
I have to admit to days when I still have negative feelings too but then another day arrives with new challenges. What was the most distressing was the lack of help/advice from the ENTs and Drs. I felt as if I was up against a brick wall but due to searching the internet and pushing for answers slowly the bricks are falling one by one. We still have a way to go but like the Butterfly in your jig saw we will find the wings to fly..by the way..have you finished it yet?
p.s. Im researching Niacin and tomorrow have an appointment with a doctor to pick up Serc. I also take calcium/magnesium, B-Complex,Omega 3 and multi-vitamin. I have reduced salt, sugar and chocolate in my diet
 Keep thinking forward...its not always easy but here we are in another day. Emily
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kimberleydust

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Posts: 91
Reply with quote  #9 
Hi Emily,
good on you for the positive changes you have made...it all helps...
Yes I have now finished the butterfly puzzle - it is beautiful and going to mount it and hang it up...just waiting for the next one to arrive...also in the shape of a large butterfly with butterflies, birds, dragonflies and waterfalls in it. 

When was your birthday? 
aQb quoted
Quote:
Thanks for the good wishes.....and Happy Birthday to you....


Mine was today! 

Lou
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