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gregg

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Reply with quote  #1 

Hi all,

I’m just writing this to share my own story. I want you to read what I’m writing so that I can genuinely help someone having difficulty. I’m very conscious of the fact that many people get tinnitus and hyperacussis from different situations. I can only speak for myself. I got Tinnitus and hyperacussis over being overly exposed to loud noise. It is important for me to mention that I posted a similar post on here many years ago and people got a bit upset with me because I generalised as to how people got hyperacussis. I got it from loud noise. From the outset let me just say this, Hyperacussis was much harder for me to deal with than the tinnitus. It is no longer an issue to me. I am completely over it.

So how was I affected by hyperacussis? I’ll explain this by giving a synopsis of a typical week in my life (back then).

Would get into my car to drive to work. Couldn’t do it without earplugs. I used to consciously speak low because my own voice used to pierce my ears, particular S words. This even influenced the names I gave my children. I always liked the name Sam but I hated saying it. I watched TV down low. Couldn’t turn the page in a book because the piercing noise from the page bothered me. Carried earplugs everywhere in case I would need them. Going into a bar, restaurant or any social situation where I couldn’t control the sound I would immediately scope the place to see where the speakers were. I always had fullness in my ears accompanied by clicking, fluttering and a tickling burning sensation. I was very depressed in general about this noise sensitivity and permeated all aspects of my quality of life and relationships. This weekly scenario went on for well over ten years in my case.

So what changed?

Well I think I always knew that stress wasn’t helping my case, it’s a vicious circle. The more I stressed the worse it seemed to get. I started noticing very subtle little things that I couldn’t explain for example. One day while driving a long distance I pulled over for fuel and got two chocolate bars to eat along the journey. Got in the car and drove off enjoying my beloved chocolate only to realise that I had driven about ten miles without my earplugs in with no adverse side effects. Why no adverse side effects because I wasn’t thinking about the sound I was too busy enjoying my chocolate. And silly me, on realising I hadn’t put the plugs in I immediately did so. Also in the car I would notice that the only time the radio ever bothered my ears was when I was stuck in traffic with no engine noise. When I was on the open road I would turn up the radio so I could hear it just enough with my earplugs, however, when I would be stopped in traffic the noise from the radio really hurt my ears and I would have to turn it down. So why didn’t it hurt my ears as I was driving. The reason was my brain only perceived it as noisy when I was stopped with no other car noises keeping my brain entertained. I was focusing too much on the normal radio sound.

I have now come to the realisation that normal sounds do not damage my ears. Before this realisation I believed that every sound that hurt my ears was also damaging my ears. NORMAL EVERYDAY SOUNDS DONT DAMAGE YOUR EARS!!!! I think this for me is the defining statement and mantra that got me over hyperacussis. For years I believed my ears were irreparably damaged because I had this full unbearable physical feeling in them. I now know that this feeling of fullness and discomfort in my ears was my brain telling my ears (bones and eardrum) to tighten up and not let sound in. An unconscious and natural reaction. The body trying to protect itself. However, I didn’t need this protection; it was stress playing tricks on my brain. I was absolutely terrified of normal everyday sounds and for absolutely no reason. These realisations literally with no exaggeration changed my whole outlook on hyperacussis within a period of days. I can’t remember now what that feeling of fullness feels like anymore. I go to nightclubs and concerts. I sing with my children in the car. Life is good. For me hyperacussis was definitely a physical problem created only from my psychological relationship with sound. NORMAL SOUND IS NOT YOUR ENEMY, IT WILL NOT HURT YOU OR DAMAGE YOUR EARS.
I am happy to answer any questions about my experience and please remember I don't mean to trivialise anyone elses experiences. Only that I have to say that if somebody like me who suffered with this for so many years can get over it so can you. I t requires a change of perception and attitude. (Again I got hyperacussis from loud noise exposure)

Yours sincerely,

Greg from Ireland.

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Aplomado

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Reply with quote  #2 
I know everyday sounds don't hurt my ears.  That doesn't stop my ears from hurting though.
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gregg

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Posts: 8
Reply with quote  #3 
Be open to the fact that your symptoms are stemming from your irrational fear of normal sound. You are caught in an irrational loop of stress which is causing your body to overreact for protection
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gregg

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Posts: 8
Reply with quote  #4 
Ps I hope you don't feel like I'm trivialising your pain, I just know what attitude worked for me, 100%. Because of the various ear sensations your probably feeling, I know you probably find it hard to believe a word I'm saying, but it's true.
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Aplomado

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Reply with quote  #5 
I am glad it worked for you.
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janeygirl

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Posts: 143
Reply with quote  #6 
it is so encouraging to see success stories here. I know a lot of the established members know my story but for me, after ten years of suffering, I ended up doing TRT (Tinnitis Retraining Therapy). At that time, the University of Maryland was the gold standard but I ended up finishing my work here in my state. The American Tinnitis Association really helped me find someone but I did have to take their list and call each to find out who had been trained in the P. Jastreboff method AND asked each one that was no too far from me if they worked with Hyperacusis patients frequently. Those are important questions. It is a 3 component protocol: noise enrichment a tiny bit at a time (listening to non lyric music); wearing the in-ear generators (turning that on a tiny bit of time up) and also very important, cognitive behavioral therapy for the fear of sounds. I was happy with a 15% success rate. I'd say I got far more than that and I got my life back.

I do find I don't think I rest on my laurels. I still should be listening to some type of non lyric music. We live in a construction zone here and I think I've gone back to when the crews are gone, having as much quiet here as possible so this reminds me I need to go back to that!!

I also have loudness tolerance tests each year at the local Audiologist, they don't usually do that with the hearing test checkup but I ask for it. It's definitely slipped a bit since TRT so valid reasons for me to do the music enrichment as I say. Thanks for the reminder!


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Jane Parks-McKay
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Nedcrouch

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Posts: 6
Reply with quote  #7 
I have found a treatment that works for me. Working  with my physician, I described the phenomenon. I told her I felt it was nerve-related, as opposed to auditory-related. (There's nothing wrong with my ears, it's just that when there is a sudden, or unexpected sharp/loud noise, I go nuts.) In discussing it with her, it sounded to her like "over-active" nerves, somewhat the same phenomenon as happens with people with migraines. She prescribed NEURONTIN. It works. Neurontin has relatively few side-effects, is cheap, and has a track record calming nerves in such problems as fibromyalgia. She prescribed up to nine pills a day. I take only three. I can now take those sharp noises as I have not been able to for twenty years (since I was first diagnosed with hyperacusis.) It works for me. 

I suggest you try it. I found a chart on line that proposed neurontin as a last resort, after all the other black magic stuff. The chart was enough for both of us to conclude that we could go straight for neurontin. I've also found that if I go on it for a couple of weeks, I settle down a lot, and don't live in dread that something else is going to happen. I take two with breakfast, and one more with lunch or dinner. that's all. 

Good luck (no, I don't represent neurontin!)



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ned crouch
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saab1216

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Posts: 400
Reply with quote  #8 
I'm not doubting your story. I just found it strange with your misspelling of hyperacusis. It's one word I will never forget. I too overcame this by the same rules of thumb. Noise could not damage my ears. It helped me tremendously to try and enjoy things and not dwell solely on me. I hope many will heed to your suggestions.
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Nedcrouch

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Reply with quote  #9 
How and when did I misspell 'hyperacusis?'
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ned crouch
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saab1216

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Reply with quote  #10 
Sorry..not you,gregg
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rodmccain

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Posts: 225
Reply with quote  #11 
Greg, first off I want to say congratulations on your recovery!  I am very happy to hear this, believe me. 

I do believe everyone does have different symptoms though.  I have both severe H and chronic T.  The worst of the T being that when I try to get out in public to do something "normal" I have amplified hearing, and environmental noise actually INCREASES my T to an unexceptable level!  I  have had this rare hearing disorder for four years now, since an  enclosed MRI with 30 decibel hearing protection.  I did see improvement within the first two years.  I have not continued any improvement.  I of course can tell by the way I am hearing. 

I have come to the conclusion,  that possibly people with kindling T, and/or  reactive T,  do not recover as well as others.  I also would like to say my problem is not mental/emotional.  I was fine before this happened to me.  This is a PHYSICAL PROBLEM, that of course has some emotional componets, when you have been dealing with it for several years, and you still don't see a significant improvement.  

If anyone on here has had severe H with these types of tinnitus, and HAS RECOVERED TO A NORMAL LIFE.  It would be good to hear from you!

Again, thanks for your post!  I believe it is very positive and gives hope to so many people!

Kathy Mccain
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rodmccain

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Posts: 225
Reply with quote  #12 
Hi Ned!

Can you tell me if you had chronic or bothersome Tinnitus along with the H ?

I am asking, because I have to be very careful regarding which drugs I take, as they make the T worse.  

Actually, I have heard of this drug helping with T before. I also know someone that takes it for chronic back pain, and it is very helpful, so I am not dismissing  your claim.  I believe it has merit. 

Thank you,
Kathy McCain
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janeygirl

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Posts: 143
Reply with quote  #13 
Kathy: I recovered definitely with the help of the TRT protocol. If you get a chance, look up my posts and you will see some of my discussions on this, I don't think it was all that long ago even though I've been with the Network a very long time. The old timers (Rob!) will well recall the difficulty I went through and I'm so very glad I did the TRT protocol. As far as Neurotin, I'm sorry I probably have that misspelled, this was something that years ago people were talking about using. However, I recall looking up the side effects and not liking what I saw. But I know that everyone is different and there is a whole tool chest of things that we can select from to use to cope and manage and recover from Hyperacusis and Tinnitis.

Jane

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Jane Parks-McKay
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