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plumfarmer97

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Reply with quote  #1 
For a couple of years I've been trying to rebuild an existence that has made social life impossible. As hearing in left ear shut down, an acoustic neuroma was discovered, and since it was aggressively growing, I underwent Gamma Knife Radiation surgery. Only 5% hearing left now, an aide is no help. I have had tinnitus for a long time, but over the years new layers have popped up: a men's chorale constantly humming, an AM radio station with interviews, arguments, singers... Hearing is slowly reducing in right ear. I have vertigo/imbalance.  Oh yes, and hyperacusis. All sorts of sounds, such as crackling salad or cereal bags, tires on the road, dishes clanking, certain voices, music rhythms ...on and on. No escape.

I spend most of my time now at home (or at Dr appointments), I read, I work at computer. My phone is a "CapCall," a poor substitute for hearing voices directly.  So many voices, and most music is unintelligible.

I also have rheumatoid arthritis, so don't do a lot of walking as I used to. 

Is there anyone else in the world with this combo of ailments???

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JKS           [sleepy]
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Steve2017

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Reply with quote  #2 
When I was at my worst with H a few years ago I couldn't stand the dishes clattering.
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plumfarmer97

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Reply with quote  #3 
Steve,
Oh yeah - those deadly dishes.  Has it improved?

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Steve2017

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Reply with quote  #4 
I'm 65 yeas old and my hearing is 95% as good as it was at 25 - a few years ago when my H was bad, I was walking through our park to go to a hearing specialist and a small tractor pulled over and the driver waved me past, I couldn't even pass it. Its all in my posts how I corrected my H - it won't apply to everyone, I never damaged my ears so I worked out IN MY CASE it was the brain fussing, so I retrained it with music.
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anniekin

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Reply with quote  #5 
Hello Plum Farmer,
I have hearing problems and H, and at the moment I'm dealing with a series of chronic foot problems that has kept me from walking like I usually would. That has been going on for a couple years now. I also have other chronic joint and tendon problems that crop up all too frequently and get in the way of other forms of activity or exercise I might like to do. My life has also shrunk down radically since my noise injury. So I have a bit of understanding of how you can feel trapped having multiple things wrong, it is like being in a maze and hitting a dead end whenever you think you want to do something other than stay in your house. 

My version of these problems seems like a "lite" version of what you are dealing with, in that my musculoskeletal problems are not an auto-immune thing, it probably stems from osteoarthritis, and there have been some treatments now and then that can help me when things flare up. And my hearing loss is only moderate. Really it is H that has shrunk my life more than anything, because I was a musician playing with a group of other people, which was also a social thing, and now none of that works.  

I have hope for the future, but it goes without saying that when your life shrinks down this much, it is hard to feel like you are actually living, you feel like you are only existing. So I think you have to be really creative to come up with something that is at all satisfying, where your life feels meaningful and you are connected to people, even if it is only for a few good moments.  

Lately I am trying to find some ways of volunteering, so that I can feel more useful in the world again. Of course it is challenging to find something I can do, what with all my restrictions, especially the H. This past weekend I managed to help out for an afternoon at a garage sale my neighbors had to benefit their cat shelter. Simple, but I was around people, which made me happy, and my ears did OK since we were outside, and whatever I couldn't do, someone else could. Most of the volunteers had something going on- a bad back, a bad ankle, hearing loss, bad memory, and many of the customers had things wrong, it reminded me that we can't afford to judge each other by how our bodies are behaving! A couple of the people involved were familiar with my ailments, so I didn't have to explain anything about myself, that always helps a lot. So I share this as just one small example of something that made me feel more connected to the world than I usually do. I am slowly learning to celebrate simple things that are positive. 

Are there any medical options that can help your RA enough that you can get some improvement? Can you get around in the world on a scooter or some other way so you can still watch people and look at scenery or whatever? What are you coming up with as you try to rebuild your life? I am always very interested to hear what people ARE doing when their lives are truncated like this. 

Being able to connect with people somehow is so important. I hope you will keep working on that however you can. 

Anniekin 










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plumfarmer97

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Reply with quote  #6 
Anniekin,
Yes, you have more than your share of stuff-that-limits-your-life!
It sure helps to have a history of creative solutions, and knowing there's more than way to skin that monster.
Rheumatoid is the least of my current issues - I've had it all my life, so adjusting to new blocks in my path just comes naturally. It is pretty much under control right now.
What has just about cut off my creative solutions are all the hearing-related things: loss of hearing in the left ear (always my "telephone ear"); much reduced hearing in right plus great distortions in what I do hear; "acoustic hallucinations" 24/7 - an AM radio station, men's chorus always humming, a generator buzzing; vertigo/dizziness; and tremors.
I tried attending a meeting of a wonderful social group my husband belongs to - a real bust. I can only converse with one person at a time, as I carefully watch mouth and body language, with no/little distracting background movement or sounds. With 10-12 people around the circle, all with different voices - I was lost.
Even shopping is a trial - too much noise and unexpected sounds (which set off my tremors).

So - until I come up with more online ideas or.... 
I'm a retired social worker and teacher, always loved constant communication and idea-sharing. 

Glad to hear ffom you!

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anniekin

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Reply with quote  #7 
Plum Farmer,
The way I deal with social situations like you describe is I wear Bose noise cancelling earbuds. They are spendy but well worth it for the freedom they give me. I can still hear what people are saying most of the time, and they cut out enough of the background noise that I can concentrate a little better on listening to someone. Having said that, I only go to things that aren't really big gatherings, or in an echoey space, and I only go to things I really care about. Not having much of a social life because of not being able to do restaurants or parties or music in groups has been very hard on me because I am a naturally social person too. The Bose earbuds are the ONLY thing that has allowed me to even try doing certain social things. I use them if I am shopping if it is too noisy in the store. I use them in loud cars. I use them when I go to a small concert.

I know that we who have H are not supposed to use noise canceling very much because in theory it causes our hearing sensitivity to be worse, but my feeling about it has been that I am not going to give up whatever semblance of a normal life I have for the off chance that using noise cancelling now and then might slow my progress in recovering from H. I tend to think that my progress is what it is, and so far nothing I can identify has speeded up OR slowed down my recovery, as far as I can tell. And in the meantime I have to try to have a life. 

With your hearing loss, using earbuds you would probably find that you have to ask people to repeat themselves, but that is a whole lot easier than asking people to pipe down, at least it is more socially acceptable and less insulting to people. Everyone is used to being asked to speak up or repeat themselves, they don't take it personally. And you can always lift one of the earbuds out of your ear for a second to hear what they are trying to say and then pop it back in.

Have you tried this?
Anniekin


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plumfarmer97

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Reply with quote  #8 
well...I don't see how Bose would work for me. I am DEAF without the hearing aid in right ear. That eliminates ear buds.

I have, over the last year, managed to tolerate sounds in stores and outside to some degree. So as I did today pushed my cart through Trader Joe's, "ignoring" noises. But with so many irritating hearing issues I become exhausted in a short time.

We just have to keep pushing ourselves to the edges of changing limitations.

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CaraMia

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Reply with quote  #9 
If I am allowed to ask, which ones did you get? There seem to be quite a few by them.. I am considering getting a pair of these as well.
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KFOregon

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Reply with quote  #10 
Hi All, just wanted to chime in on earbuds. The conversation enhancing "Hearphones"changed my life. With sudden hearing loss (45%L and 25%R) Tinnitus and H, it allows me to cut the highs,lows or mute. Theres also a boost and amplification which I dont need. I control it with a phone app. Theyre spendy and I cant name the brand here, but look it up as I mentioned. My audiologist even has me using a pink noise app with themm.. Hope it helps, KfOregon
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CaraMia

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Reply with quote  #11 

>I control it with a phone app.

 You say you control it with a phone app? That sounds even better. I had no idea such a thing exists! Can you tell me the app name or point me in the right direction for it??? I wouldn't even know how to search for it. That would be so helpful, if it is possible to do so. I'm getting more help here than I did from an audiologist, where I got none at all.

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KFOregon

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Reply with quote  #12 
Hi Cara, Im not claiming its any kind of "cure". Its just a tool to improve quality of life. From zero to...??
Anyway, hit your playstore or whatever, and type " Hearphones. Youll see the app and will know the brand. I cant mention it hear because I cant be promoting a product. It does have a few drawbacks.. Altho muted, i still get alert tones or phonecalls randomly in my H ear, but after a couple weeks, got used to it. Hope it helps. If not you can get you money back.
Best, kf
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CaraMia

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Reply with quote  #13 

I understand, unfortunately as I found out there is no cure, and it doesn't even seem to be high up on the priority list to help those with this affliction... I just had no idea such apps even were out there and will definitely check it out. I'm not quite ready to drop the megabucks, but after recovering from taxes in November will begin to make it a possibility. So I thank you from the bottom of my heart for letting me know about apps! I found one that has ocean waves that are not in a loop and that is wonderful.

 Like the OP I also have awful T. I completely agree with the assortment of noises, like sharp voices, dishes, and crumpling paper... and earplugs seem to work on those pretty well. But the monster of them all are low-frequency humming (especially rhythmic) sounds. Those resonate off interior walls and earplugs don't work, because they also resonate off the inside of my head.

 What I did find helpful for me to block it is ocean waves. It seems be a higher frequency than pink noise, but helps to cancel that dreadful hum. I hope maybe others reading this may try that and find some relief as well, because up until now, there seemed to be none..

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