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locutus24

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Posts: 47
Reply with quote  #1 
Does anyone live in NYC area and would be interested in helping me create a hyperacusis Meetup group? Just to offer support for sufferers in local area and maybe help people make connections and friendships. 

Pretty serious post and hoping some people live here and frequent this site. 

I'm still emotionally unstable from the shock of having hyperacusis and some tinnitus when sleeping at night, but better enough now to find some outlet to ease the pain. 

: )
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locutus24

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Reply with quote  #2 
By help I just mean joining the group and participating. I can set up a Meetup page and post the link on here. 
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gvkk

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Reply with quote  #3 
I am an older woman, probably not much help, I live in New Jersey. But, you might try starting a Facebook group.Theres got to be people in the NYC area.
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gvkk
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stresseemoijms

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Reply with quote  #4 
Hi, I’m glad you’re being more optimistic. There’s a facebook group for hyperacusis sufferers - you could post on that. It’s a pretty good group of people. Not all in New York but you will find people in New York there. However I will say, amongst the New York tribe, avoid a woman named Joyce Cohen like the plague because she tries to convince everyone had recovery is only possible by avoiding sound, which is NOT TRUE, and actually the opposite of what has been proven to work. She only does this because she’s afraid her husband will leave her if he gets cured so she keeps him trapped in a padded apartment. No joke. You can absolutely recover and your best bets are TRT and desensitisation.
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locutus24

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Reply with quote  #5 
Quote:
Originally Posted by stresseemoijms
Hi, I’m glad you’re being more optimistic. There’s a facebook group for hyperacusis sufferers - you could post on that. It’s a pretty good group of people. Not all in New York but you will find people in New York there. However I will say, amongst the New York tribe, avoid a woman named Joyce Cohen like the plague because she tries to convince everyone had recovery is only possible by avoiding sound, which is NOT TRUE, and actually the opposite of what has been proven to work. She only does this because she’s afraid her husband will leave her if he gets cured so she keeps him trapped in a padded apartment. No joke. You can absolutely recover and your best bets are TRT and desensitization.


I'll post and ask if any are interested in group hangouts. I did sign up to that FB page already, but never thought of networking on there. Kind of ignorant of me! haha However, I'm not a fan of using FB to randomly text people as it feels less friendship-like and real. Joyce Cohen! Hmmm, well, I may not try to become friends with her, but I might drop her a message to see what you mean and to get some laughs (not at her). I think her scenario with husband needs to be made into a movie. Thriller/crime or thriller/comedy where once the husband finds out she is cured he confronts her for her lies, but says he will still stay with her and that it's finally time for them to see that metal concert he's waiting for which makes her gasp and dread it. She doesn't believe him about staying with her and thinks he is taunting her with his metal music obsession. The same night she has nightmares about loud metal riff guitars and drums attacking her ears and brain. She can't take it anymore. The sweats and paranoia overwhelm her whole night! Next morning husband is packing for work and she is thinking "he is leaving me now and has his plane tickets in that brief case." And before he leaves for work she incapacitates him and locks him in apt and says things like "now you'll never leave as you are bounded forever" and "sorry, but your metal garbage will ruin all my progress with my OCD avoidance of sound. Ugh how dare you ruin my progress. Never again." Not sure how movie ends. Leave it up to movie studio after I send in a script. Sorry, I'm a disturbed individual with fantasies. This is just for laughs BTW! 

I am practicing desensitization at moment and not wearing ear plugs as much. Even at evening when sleeping I am sometimes not using them and letting ears hear the outside ambience. Kind of helped! Still making appointment for TRT and hope that helps. I wished sleep and late night relaxation was better. I get anxious late at night cause I can focus more on H and T. I can distract myself with my readings from classes, but still hard. 




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Margy

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Reply with quote  #6 
Stresseemoijms,
This is rather poisonous of you, and I think Joyce Cohen deserves a lot more respect.

Question: how much improvement has desensitization brought to you?
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