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stresseemoijms

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Reply with quote  #1 
I can't take it anymore.
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bananacupcakes

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Reply with quote  #2 
You said the text below to me back in October. So what changed your mind?

Quote:
Originally Posted by stresseemoijms
Look, I briefly dealt with these kinds of feelings early on. I question constantly what makes life worth living, in and out of H. Meaningful relationships and a sense of purpose are what makes life worth living. It is all about finding the right ones and then you can get through anything. For me, art, music, and love are what makes my life worth living. So yes, when I first got this I couldn't listen to music again so I thought I could never be happy. It's not true. I've had it for a year and a half. You simply have not had this long. Already I am playing music again and listening to it every day. I wear ear plugs to play it but I am so thankful I can do it at all. I decided I loved music too much to give it up. Meaningful relationships are rarer. If you find one, cherish it and don't take it for granted.
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stresseemoijms

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Reply with quote  #3 
Banana pancakes: All of what I said is still what I believe in terms of what makes life worth living, and I am light years ahead of where I was a year ago in terms of pain levels, but what changed my mind is basically that I'm having more ear pain with music practice because I started playing again more because I was getting so much better and getting scared that it will get worse if I keep practicing more. (I've been playing a band and it's the greatest cause of happiness for me.) Also in terms of relationships, I am losing my patience with other people's insensitivity. So basically now I feel like music and meaningful relationships are possibly unattainable and that gives me little left to live for. I know for certain that perspective has a lot to do with it in terms of getting better, in terms of if you think you won't get better you won't because you'll stop trying, so don't be too influenced by my feelings of frustration.
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DanMalcore

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Dan
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Reply with quote  #4 
Please correct me if I am wrong but have you done any sound therapy at all (TRT or pink noise)?

Dan

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"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
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stresseemoijms

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Reply with quote  #5 
All the time re: pink noise
Don't worry about it Dan, I just needed to vent and I am too stubborn to give up the violin, I am sure it'll improve if I take a break from music yet again...
It's hard to feel confident when you think you're almost completely better and then you find yourself back to square one.
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stresseemoijms

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Reply with quote  #6 
Admittedly although the pain can be unbearable at times I can probably handle any level of physical pain but the worst part
from an emotional perspective is the effect it has had on my relationships and my ability to do what I enjoy doing and it's really that that I can't take anymore, more than anything.
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stresseemoijms

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Reply with quote  #7 
List of things tried: TRT, acupuncture, acupressure, gingko biloba, hypnotherapy, yoga, meditation, binaural sounds, desensitization.
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DanMalcore

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Dan
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Reply with quote  #8 
How long did you do TRT?
Was it with one of the clinicians listed in the referral list?
How many hours a day did you do sound therapy?

Dan

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"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
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Rick

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Reply with quote  #9 
Quote:
Originally Posted by stresseemoijms
I can't take it anymore.


I can totally relate. Sometimes you just need to vent. In particular, I can really relate to your situation. Music and relationships are the two most important things to me. I am a songwriter and music producer. Although I am wondering if I should start saying I WAS a songwriter and music producer.

I, too, was starting to get better after several long years of thinking my music career was totally over. So of course I went right back to the only things I truly love – the piano, the guitar, and the recording studio. I overdid it. Now I am dealing with a setback. I am not going to give up, but it does get depressing. But it's the hand I got dealt, so I will keep trying to play it the best I can. I will keep trying to work around this miserable disability.

And I will keep following the research. They are making progress. There is hope.
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WhatHappenedDenis

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Reply with quote  #10 
I am in the same boat but feel no shame using earplugs in loud places and listening/ playing on low volume Have u tried that? A setback that can be avoided should be avoided to prevent one from reaching to square one IMHO
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stresseemoijms

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Reply with quote  #11 
Thanks for your replies. 

Denis, When I practice I always wear ear plugs and a practice mute. I listen to music on low volumes. I wear ear plugs in noisy areas but not all the time, though I do live in a loud city so sometimes they are necessary. People are always shouting drunkenly here, or children are screaming, and there is literally construction outside my apartment non-stop since this summer. 

Dan, When I say TRT I mean TRT-style pink noise, I've been using pink noise pretty much since I got this a year and a half ago. I have improved drastically to the point where I thought I was about 70% cured but then setback. When I say 70% I am just making that up; it's a meaningless percentage. But 70% of statistics are made up anyway. I mean I was feeling a lot more confident and also learning to separate what pain was misophonia and what was hyperacusis. I haven't had much luck with doctors here. I am also not in a great financial situation so I tend to DIY my healthcare and research as much as I can. The hours are variable, depending on what I'm doing but I alternate between pink noise and binaural sound therapy. It definitely helps a ton. 

Rick, Thank you for relating. I appreciate your input. Yes, it is really hard when you think you're almost better and you feel on top of the world for a bit only to have a setback. Hyperacusis has been a journey to say the least. I'm used to feeling totally different from everyone else, there aren't many people I relate to (rarest personality type) but this really adds on to it. One of my friends, when I mentioned my hearing a year later, said "Oh you still have that?" I was like "umm yeah I will probably always have it." People close to me get annoyed when they have to remember not to do things that hurt my ears when they are around me. I have found certain relaxing music to be a refuge. I really do not want to have to give up music.


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bananacupcakes

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Reply with quote  #12 
This is indeed a miserable disability. Improvement takes years but that can be all undone by seconds or minutes of noise exposure. The key here is to avoid getting worse.

I want to put my hope on research for hyperacusis, but realistically, it's just wishful thinking. Research for hyperacusis doesn't get enough funding. It took more than a decade for scientists to discover pain receptors in the cochlea. It will probably take another decade to confirm that these pain receptors cause hyperacusis, and then two decades to come up with medication for it. That's at least 30 years of waiting.

I know I sound pessimistic, but I prefer reality over false hope. Nevertheless, I support Hyperacusis Research and donate a small amount every month. I may not be able to live long enough for the cure but at least, future generations will have it better.
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Lorrie

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Reply with quote  #13 
Dear Stressee..

I understand your despair, although I am not that far gone ...yet?

I am not a musician, but music was  always  an important part of my life, and over my 22 years of H. I was able to mostly listen. But I had a very bad setback last january, and i can no longer listen. That could change. But something very  important went out of my life, especially since music was becoming even more important over the last 5 years. I even wanted to learn music theory.I had a whole stack of books prepared to study, and then WHAM! unexpected terrible setback, from which I have partially recovered, but not enough to listen to music on cheap systems, all that is available to me.

I can also understand what you mean about insensitive people. Nothing like having a bad H day to see  how ignorant, selfish, corrupt ,and heartless most people are. The attitude is : you are on your own . baby, donÈt bother me. There are exceptions but , in my experience ,they are rare.

So where is the quality of life in all this? Almost nowhere!


Lorrie
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rodmccain

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Reply with quote  #14 
I really hate to say this....but you many need to give up the violin, if you do not want to get permanently worse. 

I had severe burning pain with the onset of my enclosed MRI induced T and LOUDNESS H.  Well...the horrible pain has subsided, but I am left with several T signals, and most all environmental noise is still too loud for me.  I am practically a recluse.  

I am  assuming you can get out and be around people?  This is good!  You are not home bound?  If that is correct, I would certainly consider giving up the violin, and finding another passion you can indulge in. 

My thoughts.......

God bless
K M
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