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SandyTH

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Posts: 363
Reply with quote  #1 

Marilyn, Breeze and Everyone,

 

I have no problem with anyone bringing forth old links from years ago which contain some of my story.  Obviously, I am not very good at it myself.  This board seems to have changed somewhat since I was last here more than a year ago.  In fact, it seems many of my posts have disappeared completely for some reason, unexplainable to me.

 

I will be happy to answer any questions anyone has.  For what it is worth, in addition to having category 4 tinnitus and hyperacusis plus vertigo the first year, I also had fluttering, spasms, vibrations, snapping, clicking, popping, aural fullness, and pressure. 

 

For those folks who are considering making their kitchens more noise friendly, it is my recommendation you not do that.  If one cannot tolerate the standard sounds found in a kitchen, it will be very difficult to live in a world jam-packed with noise.  I would suggest moving toward the sound not away from it.  Sound is not the enemy; loud noise and silence is the enemy.  Ours ears crave sound.  

 

I walked in your shoes many years ago and did just as you are doing.  I sat in my kitchen wearing earplugs because the sound of the refrigerator was too loud (or so I thought).  I positioned towels on my countertop to absorb the noise of my dishes, used plastic ware instead of my usual cutlery, and dashed to the microwave to turn it off before it beeped.  I did that until I decided I wanted my life back.  Instead of running from the cutlery, I walked right up to it and threw the knives, forks, and spoons into the drawer.  I did that everyday, until one day it no longer bothered me.  I employed that strategy of desensitization with everything I did in order to regain my life.  I walked in the direction of the sound not away from it.

 

I am telling you this because there is more than one way to make progress and to recover.  I am also stating very clearly that we are all different and we all heal differently.  This worked for me and I pass it along for those who do not see TRT as a viable option.  I became hyperacusis free seven years ago without it.  I wish you well in your recovery. 

 

Sandy

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saab1216

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Reply with quote  #2 
  Great to hear!
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Debbie

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Reply with quote  #3 
Hi Sandy,

Congratulations on getting past hyperacusis and thank you for sharing your experiences.

This basic idea is what I began following about 1 year after the onset, then profound worsening of my auditory conditions (due to continued and some very loud, unexpected noise exposures during the acute, early phases) until they reached category 4.
At one year in, as opposed to the very early days and months of my conditions, I felt that I was 'stable' enough in my conditions that I felt I had more to gain by moving back into the world and my life than what else I might lose by risking setbacks.

I have followed basically what you describe for the past year, at first I came home daily and cried with fatigue after hearing overhead projectors and the whir of computers and laptops all around me, and the voice of one particular loud, shouting lecturer who I had for about 4 hours at a time in a given day.
And all the driving.

As a result of re-joining the full stream of life, I had the experiences of laughing with friends at least as often as the setbacks to my ears caused me to cry at home.

My tolerances did rise over this last year, my lifestyle is now basically normal.
But the amplification of ear fullness/tighness/muscle cramping sensations and tinnitus symptoms (not so much the hyperacusis any more, I am virtually free of hyperacusis now in terms of loudness perception) is so strong for weeks and more after attempts to go to very loud music venues etc. that I choose not to do such loud things. I still go about my business when the symptoms get kicked up like this and take it easier but it is very uncomfortable and it always feels so good when the fullness and tinnitus ease again.

Are you able to do everything including amplified music venues?
Do you still experience ear fullness and tinnitus or has all of that gone away?

Is that what you mean by 'hyperacusis free?' That you can do everything you want to do without any major lingering consequences to the comfort within and around your ear(s)?

I would love to know that someone has already fully and completely 'escaped' from all of these types of symptoms.

Thanks again, and congratulations for whatever level of recovery you have because it seems like it is very significant to your life.

Sincerely,

Debbie








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Rob

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Reply with quote  #4 
Good post, Sandy. 

Rob
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aQuieterBreeze

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Reply with quote  #5 
Hi Sandy,

It may take me a bit to reply to your post, but  thank you for it - and for starting this thread.
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SandyTH

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Posts: 363
Reply with quote  #6 

Paul,

 

I had planned to answer your questions but I no longer see them.  I would be happy to do so if you want to rewrite them.  If I have read your posts correctly, you are much-improved LDL wise.  You can also overcome those soft sounds that seem to be plaguing you at this time.  You seem to be a very determined man and that is half the battle.

 

Debbie,

 

I felt that I was 'stable' enough in my conditions that I felt I had more to gain by moving back into the world and my life than what else I might lose by risking setbacks.

 

……………….

 

I like this attitude. 

 

………………………..

 

For the most part, unless as I said there is one that is particularly, very loud, these types of noises are not discomforting to my ear at all any more.

 

……………….

 

Congratulations, this is excellent news it sounds like you are making progress. 

 

………………

 

I still seem to conduct through my skull when I try to go 'all the way' with freedom, such as when I have tried to spend time in highly amplified music when out with friends.

 

…………………

 

I moved much slower than you did.   My slow and steady made the tortoise look like the hare.

 

The only thing I did the first year was stay home, cry, and isolate myself.   I went down to 88 pounds; my hair fell out in clumps from all the stress and anxiety and I was not able to talk on the phone or do any of the things that used to be a natural part of my day.  I knew my life was over.  At the same time, I knew it was necessary to regain my tolerance and very slowly entered the world around me.  I went to the mall, stayed one minute and left.  I did this daily for a few weeks until I could build more time.  I did the exact same thing with the freeway.  I got on one entrance and off the next exit.  I did this daily as well.  Eventually, I was able to stay at the mall for hours and the same with the freeway

 

……………………..

 


Are you able to do everything including amplified music venues?
Do you still experience ear fullness and tinnitus or has all of that gone away?

 

………………..

 

I have attended five weddings, driven four hundred miles in one day to reach my destination, have been to live theater to see very loud musicals, enjoyed concerts in the park, and noisy restaurants. 

 

I have not had ear fullness since my second year but my tinnitus has changed to the garden-variety type at this time or maybe it is still intrusive – I am not sure.   My experience with the fullness was very terrifying.  As I was sitting with a friend one day, something in my ear began to inflate very strongly and increase with such intensity and force that panic and fear immediately took over my being. It felt like a balloon was being pumped with air at which time the pressure began to increase and increase at such a steady pace to a point I thought my head was going to pop off and burst.  I was sitting feeling enormously frightened as it was happening having no idea where it would all lead.  Eventually, I heard a loud bang and explosion in my ear and to be very honest, I didn’t know for a split second if I was dead or deaf as the explosion itself was deafening.   After that event, the fullness and pressure disappeared and did not return.  

………………….

Is that what you mean by 'hyperacusis free?' That you can do everything you want to do without any major lingering consequences to the comfort of your ear(s)?

 

……………………….

 

I consider myself hyperacusis free because my LDL’s range in the 100’s which are judged to be normal.  I do everything I want but still exercise caution, not fear, but caution when things are over the top loud, such as weddings.   What has changed is spontaneity.  I lost that for so many years as I felt everything had to be so planned and choreographed.   Now I can go out for the day and not worry about where to stop to eat or have fears about motorcycles or screaming children, etc.  I have become a person of no thought where my ears are concerned.   My thought is pre-tinnitus and hyperacusis.    I feel liberated.

 

Folks, you are on this board at an excellent time.  When I joined the end of 2001 the information disseminated was full of inaccuracies, and scare tactics.  Had I listened to the absurdity those folks were trying to impart, I would still be at square one.   While reading some of your posts, I notice when erroneous and incorrect thoughts arise now, some very wise and knowledgeable members challenge them immediately.  

 

This is something big to confront but nothing that is insurmountable.  I know how difficult it may seem but continue to put one foot in front of the other and keep moving forward as you seem to already be doing and you will get there.  You will get there!

 

I wish you well in your recovery.

 

Sandy

 

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Debbie

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Posts: 1,512
Reply with quote  #7 
Hi Sandy,

Thanks so much for your posts and responses to my questions.
Your description of the 'inflation' process in your ears that you experienced is very familiar to me - I used to describe it in terms of a bicycle pump feeling, something progressively pumping my ear fuller and fuller and fuller....
When spec. I as around humming appliance noises.
This pattern is much less defined now for me. I'm glad to hear yours went away.
Your description of your first year is familiar to me too...believe me.
It was not until after the 1st year that I moved back into the world.
It's fantastic you feel so liberated now, in your mindset, as if pre-h pre-t.
Thank you again for taking the time and energy to write your inspiring posts, and again congratulations on your progress, sounds like you have come a very long way.

Sincerely,

Debbie

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marilyn

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Posts: 131
Reply with quote  #8 
Hi Sandy,
Thank you for this thread.  It's music to our ears.  

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