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Stubbyj

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Posts: 26
Reply with quote  #1 
Greetings!

I have a question for you all regarding new negative symptoms I'm having in light of what I believe over-all progress.

Progress:

1. TTTS down 80-90% of onset
2. Setback recovery down to 2 weeks opposed to months
3. Setback symptoms more localized around ear and not so painful
4. T not impacted by setbacks
5. TTTS mildly impacted by setbacks

New Symptoms (right ear only):

1. Menthol/wet feeling on what feels like the ear mechanism (just inside)
2. Burning/sizzle/vibration in what feels like a the cochlea upon hearing certain frequencies; as if I can feeling it actually moving. Presents in a "straight line," like it's a tendon or muscle...TTT?

New symptoms are a result of 5 freakishly unique noise incidents within two weeks. Noises include semi releasing air breaks (I was 20 yards away), 3 dog barks 4 ft. from my head and a metal pipe hitting a metal surface as I was bending over (2 ft. from ear). I recovered from them all fairly quickly but developed the afore mentioned symptoms after the pipe incident. 

Initial response: Typical Ear fullness and burning (went away in 2-3 days).

Question(s):

1. Could any of the described noise exposures have caused permanent damage to my ear...destroyed nerves? Does this sound like a "deal breaker" as far as a future "full" recovery? Sound kind of typical to that of what you all have experienced?

Argh, the anxiety and self hatred that comes along with this crap!

I really appreciate the help and information received thus far from all you fine folks.

Thanks so much and I wish you all the best!

Stubby






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bananacupcakes

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Posts: 60
Reply with quote  #2 
Based from my experience, symptoms just cycle. I would get new symptoms then they would disappear in days, weeks or months. Then just when I was about to sigh from a bit of relief, new symptoms would appear to take their place. Sometimes, old symptoms would reappear. It's been like that for two years.

I hate metal on metal sounds. They give me some of the worst setbacks.
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Stubbyj

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Posts: 26
Reply with quote  #3 
Thanks Cupcakes!

I really hope these new symptoms pass. I was just getting accustomed to my new baseline and accepting the fact that I'm in this for a longer haul.

At one time my T was the big issue...before H. I'm so over my T. How do I miss those days?


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Steve2017

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Posts: 176
Reply with quote  #4 
Hi Stubby,

When my wife rustles plastic say from out of the freezer for example, I smile and use it for brain retraining, this is me now at 65 years of age, and still go on push bike first thing most mornings diesel lorry's nearby and industrial lawn mowers in the park no problem... 2 -3 years ago I would have run a mile from all those sounds. BUT I never damaged my ears the sensitivity just crept up on me over a decade, it was never my ears, people who might have damaged ears, that's a specialist appointment I recon and and see from there on. But my example is SOME people can turn H around by desensitiing hearing system, worked for me, people must make their own choices though with help in many cases.

Steve.    

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s simpson
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Stubbyj

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Reply with quote  #5 
Thanks Steve. 

When did you develop H? So, no noise exposure for you?
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Steve2017

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Posts: 176
Reply with quote  #6 
I was in clubs with my son and daughter a decade ago, but was always aware not to go too near to large speakers there, I was aware then of the high volume, so no damage to my ears. H probably started a decade ago but very, very mildly at first - at its worst probably 4 years ago now I had plugs in my ears and headphones on, never both at the same time. Once I realised I was improving with de-sensitizing I got rid of the ear plugs within weeks, then it was a slow process 1-2% improvement a week I expect, still avoiding certain sounds at first... I think, check other problems out with specialists at first, THEN just have a think could it be the brain giving issues, if so use the power of your mind to retrain it. I am a big believer in the power of positive energy to help heal...
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s simpson
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EDogg

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Posts: 174
Reply with quote  #7 
Hey Stubbyj,

My answer for Question 1) No, I don’t think you have caused permanent damage. No, it’s not a deal breaker, it’s a setback. And yes, this sounds all too familiar and is part of the rocky path of recovery.

Those of us with hyperacusis spend so much of our energy trying to avoid sounds and setbacks. Ironically, sound will always find us. It’s part of the process; it’s a constant in our life equation and it helps to come to terms with this reality. There’s a great thread a little while ago about learning to forgive ourselves. I personally think this is crucial to recovery. I raise this because you mention of “self hatred and anxiety” with these sound incidents. I recommend you read through that thread. It’s full of helpful tips.

In essence, though, it’s ok! You are going to make it through this. You are going to have setbacks. Your ears will do weird things and make you question everything.. but in the end, like you said, it’s all about the LONG GAME.

PS- I really dislike metal on metal sounds too! Leaf blowers are my kryptonite tho.

Best,
EDogg



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balloonboy

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Posts: 10
Reply with quote  #8 
Hey! Thanks for telling some of your story. What does “desensitizing” look like? What exactly do you mean? Thanks so much!
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TrishB

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Posts: 5
Reply with quote  #9 
Hi Stubby,
I’m not sure if this will make sense but I feel vibrations deep down in my ear and it causes horrible pain. It’s not just sound that hurts but vibrations also. I’m talking about vibrations that no one else around me can feel or hear. For example, our refrigerator is very quiet but there are days when I don’t hear it I feel it in my bad ear. I have H with pain in one ear only. I was in a car accident which caused it. It’s like the tiny bones are vibrating in my ear. Sometimes I’m feeling better and don’t have the vibrations but then there will be a setback and I’ve got them again.

Not sure if I’ve explained it very well but I understand what you’re feeling. Also you shouldn’t be so hard on yourself. None of us asked for this, we just have to do the best we can each day and protect our ears the best we can so that we don’t do more/permanent damage. I’ve been dealing with this for 8 years. I had three year old twins when I first got this, they are 11 now and I’m just getting to a place that I can spend any time with them beyond a few minutes. Their voices caused so much pain that there would be days sometimes weeks I couldn’t be around them at all. The guilt and pain of not being able to be apart of their lives was horrible but I just try to remember that I’m doing everything I can and I give them as much of me as possible.

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Trish Burckard
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Stubbyj

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Posts: 26
Reply with quote  #10 
TrishB

Sorry about the H in relation to your twins; what a stupid situation (technical term). 

Vibrations: makes perfect sense...sound is frequency/vibration. Lower, bass frequencies make my inner ear mechanism vibrate what feels like a good 1/8th inch. Just unbearable. At this point in time I can't imagine being able tolerate such noises ever again. 

Thanks for your input.


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smuth

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Posts: 11
Reply with quote  #11 
Hi

This is just a setback, these sounds is not loud enough to cause damage, not even to us.....😉
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Stubbyj

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Posts: 26
Reply with quote  #12 
Smuth

Thanks so much for your comments as they are reassuring. 
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smuth

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Posts: 11
Reply with quote  #13 
Advice:
Do not assume that increase of hyperacusis symptoms is due to damage, it is not.

Tinnitus may be a symptom of any damage caused by loud noice, but not only increase of Hyperacusis.

You can get new symptoms of H from whese sounds, because your sound sensitivity can not tolerate these sounds at this point, but it is just a setback. It is everyday sounds....

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WhatHappenedDenis

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Posts: 46
Reply with quote  #14 
Have u guys tried Tebonin? IT made things better for me as did Niacin
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Stubbyj

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Posts: 26
Reply with quote  #15 
I have not.

I use fish oil, magnesium and a multi vitamin.

You mention it made things better for you. Can I take this a past tense, meaning you have recovered? If so, how long did it take. Major setbacks?


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WhatHappenedDenis

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Posts: 46
Reply with quote  #16 
It's gotten a lot better after about a year and half Tebonin is prescribed for T in Germany and I feel it helped - I tried every vitamin for the first 3 months with no progress
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balloonboy

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Posts: 10
Reply with quote  #17 
Quote:
Originally Posted by WhatHappenedDenis
Have u guys tried Tebonin? IT made things better for me as did Niacin

Hey Denis,
I would love to try these. Where did you get them? Thanks for sharing what has helped!
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WhatHappenedDenis

Registered:
Posts: 46
Reply with quote  #18 
Pharmacydirect.co.nz
They sell at 30 % discount over Amazon
Super Customer service
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WhatHappenedDenis

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Posts: 46
Reply with quote  #19 
Niacin - buy the one 'with flush ' 250 mg take half tablet on empty stomach
Available at GNC
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Phillychris1

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Posts: 13
Reply with quote  #20 
Quote:
Originally Posted by TrishB
Hi Stubby,
I’m not sure if this will make sense but I feel vibrations deep down in my ear and it causes horrible pain. It’s not just sound that hurts but vibrations also. I’m talking about vibrations that no one else around me can feel or hear. For example, our refrigerator is very quiet but there are days when I don’t hear it I feel it in my bad ear. I have H with pain in one ear only. I was in a car accident which caused it. It’s like the tiny bones are vibrating in my ear. Sometimes I’m feeling better and don’t have the vibrations but then there will be a setback and I’ve got them again.

Not sure if I’ve explained it very well but I understand what you’re feeling. Also you shouldn’t be so hard on yourself. None of us asked for this, we just have to do the best we can each day and protect our ears the best we can so that we don’t do more/permanent damage. I’ve been dealing with this for 8 years. I had three year old twins when I first got this, they are 11 now and I’m just getting to a place that I can spend any time with them beyond a few minutes. Their voices caused so much pain that there would be days sometimes weeks I couldn’t be around them at all. The guilt and pain of not being able to be apart of their lives was horrible but I just try to remember that I’m doing everything I can and I give them as much of me as possible.



I have the same sensitivity to vibrations. For me they are worse than loud sounds. And yes I can sense vibrations no one else can. My inner ear can pick up mild vibrations That aren’t even audible and if I don’t get away from them it starts to cause pain leading to a setback. The worst part is that even with the best ear plugs and best muffs on at the same time. The vibrations can still hurt me easily. On a more positive note, I’ve had a few decent weeks in a row and “knock on wood” my ear pain isn’t too bad today. I still get end of day pain and some pain from driving, but otherwise feeling ok!
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TrishB

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Posts: 5
Reply with quote  #21 
Philly,
The vibrations are worse for me then loud sounds. Riding in vehicles is torture especially when my husband hits those ruts in the road! I have noticed the weather can also effect the vibrations, make the effects stronger more painful and the setbacks longer also. I can say that for the 8 almost 9 years that I have had H, nothing that happened since has caused any permanent damage, some setbacks can just take a very long time to recover from.

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Trish Burckard
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