Sudden Hearing Loss: Want to connect with others

Posted by eileen123 @eileen123, Jul 22, 2020

Hello, I am new to this group. At age 56, I recently suddenly lost all hearing in my right ear, and I am trying to process this significant impact and find support from others who have experienced the same sudden hearing loss. I welcome your feedback. I am in good hands with very experienced doctors at Mass Eye and Ear in Boston, but my treatment plan has not worked to date (oral steroids and ear injections). I have profound loss in right ear, and above average hearing in my left ear. Thanks for your insight and support. Eileen

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nla4625 Possible suggestion about a search for an audiologist in PA. If you contact or join HLAA in PA, you could pick up some tips about audiologists. HLAA doesn't officially endorse, but through informal chats (in person or via online) you might get some good recommendations.

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Thanks for this good idea. After reading through a lot of these posts, it was definitely on my list to check out HLLA, which I hadn't known about. It sounds like a wonderful organization and source of great information. I read about the Cros B Protek? hearing aids a previous gentleman recommended, which sound amazing, and downloaded a list of places they are sold near me to check them out. It will be wonderful to see if someone from HLLA can recommend a good one to visit next spring or summer when it will hopefully be safer to venture out. I feel as though a whole new world of possibilities is opening up before me while I've been hibernating under a rock. Thanks again! Nancy

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@nla4625

Thanks for this good idea. After reading through a lot of these posts, it was definitely on my list to check out HLLA, which I hadn't known about. It sounds like a wonderful organization and source of great information. I read about the Cros B Protek? hearing aids a previous gentleman recommended, which sound amazing, and downloaded a list of places they are sold near me to check them out. It will be wonderful to see if someone from HLLA can recommend a good one to visit next spring or summer when it will hopefully be safer to venture out. I feel as though a whole new world of possibilities is opening up before me while I've been hibernating under a rock. Thanks again! Nancy

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@nla4625, Great that you're coming out of hibernation! 🙂 What part of PA will you be in or near, if you don't mind my asking?

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There are several HLAA chapters in PA. I hope you might be near one of them. The website has a list of chapters. http://www.hearingloss.org You might get good info about finding a good audiologist from them. While HLAA does not endorse or recommend products or providers, members are encouraged to share their experiences with them from a personal viewpoint.

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@nla4625

Thanks a million for this information. I'll definitely check it out and other interesting things I'm learning from these posts about technologies that might help me. I'd never heard about many of the things Julie has mentioned in several of her posts. I've moved from southern MN to PA so will have to find a new audiologist to visit this summer. I'll go armed with good information. Thanks again! Nancy

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This isn't a reply to a specific post, but an observation. My daughter has normal hearing, does series of Zoom meetings all day every day. She commented recently that all the meetings simply exhaust her. Prior to Covid, she did in-person meetings most of every work day, so she's not spending more time meeting, but doing all of it ELECTRONICALLY. I thought that only those of us with various losses have a much harder time with electronic voices (phone, Zoom mics, even commentators on TV), so I was really surprised to learn that people with normal hearing find electronic transmission tiring: auditory exhaustion. I think electronic devices alter the sound enough to make discrimination more difficult for everyone...and especially the HOH. I certainly experience exhaustion during person-to-person meetings, but not nearly as quickly or as much as during a phone call or Zoom meeting. Of course, the phone call means that I cannot read lips, but when the speaker's webcam provides a decent image without strange hiccups Zoom calls do offer lip reading, plus the speaker is full screen, often much easier to "read" than during a meeting around a large table.

One thing that I've tried and found unsuccessful for the most part is speech-to-text apps and TV captions. I wind up missing more by trying to fill in gaps I didn't hear by checking my phone, which means I can't see what the speaker is saying at that moment, while I'm trying to catch up on one or two sentences earlier. I do use TV captions, but live programs fall far behind, often miss entire sentences. Programs recorded earlier sometimes have captions that are not only correct but appear at the same time the person is speaking so that you aren't seeing current speech and reading previous speech, which is very confusing.

With Covid, I haven't experienced a face-to-face meeting for months, but I had determined to just put away my Android phone and Live Transcribe: too much lost by trying to find what I've just missed...meaning lots more missed. Most of the meetings I've been involved in are quite technical, lots of jargon and acronyms, important to "get" all the words. Those meetings are far more difficult than meetings of volunteers where we're deciding what we should do, as not every word is terribly important and it's possible to "get" the gist of the discussion without hearing/understanding every single word. Participating in a meeting about, say, water supply means that missing just one mention of a specific cfs (cubic feet per second) will make it impossible to understand fully the import of what the speaker's trying to get across. For me, it seems that I can "get" more of the discussion by watching speakers than by watching delayed words on my phone. Am I especially dense?

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There is an additional choice for communication that I use and thankfully do not find it exhausting. That is the Captel phone. (There is another company that functions the same as Captel but at the moment I don't recall the name.) While the transcription on the Captel phone is not perfect, I am satisfied with its functioning. I can always ask the person speaking to repeat what they said, speak slower, or whatever, and sometimes I say to them "I'm relying on transcription, here's what they claim you said - could you correct it, if needed?"

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@barbb

@nla4625, Great that you're coming out of hibernation! 🙂 What part of PA will you be in or near, if you don't mind my asking?

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I'm about 45 minutes north of Pittsburgh, where there is a HLLA chapter. It's nice to be near my 2 brothers and their families, although I haven't gotten together with them in almost a year because I'm in 3 high risk groups for Covid and am taking it quite seriously.

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@barbb

There is an additional choice for communication that I use and thankfully do not find it exhausting. That is the Captel phone. (There is another company that functions the same as Captel but at the moment I don't recall the name.) While the transcription on the Captel phone is not perfect, I am satisfied with its functioning. I can always ask the person speaking to repeat what they said, speak slower, or whatever, and sometimes I say to them "I'm relying on transcription, here's what they claim you said - could you correct it, if needed?"

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The other best known captioned phone is CaptionCall. Both Captel and CaptionCall are good quality.

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@wendymb

So well put, thank you. That is a huge issue, the social aspect. I will avoid crowds, loud restaurants, movie theaters, most group settings. I forgot about that, having been home for the last 10 Covid months!

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@wendymb @nla4625 The social aspect of hearing loss is not something that was part of my awareness. My training and permanent Mayo Clinic is in Behavioral/Mental Health. Moving forward I will certainly remember to use this new awareness forward, especially during social gatherings and group work of any kind. I really do appreciate your teaching me this.

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@golden418

if I am not to forward here, I think you should explore the B-Cros option. I too am deaf in my right ear (since 4 years of age- almost 60 years and have profound loss in the other - related to aging / perhaps overuse) and got my first pair of Phonax Bi-Cros 6 years ago. That did not work out well and I was going to give up. However, I did op, as a trial, for the next generation of Phoinax Bi-Cros (upgraded technology) and the difference is night and day. Although I still cannot echo locate, I can hear in the vehicle while driving (good ear was always to window), no longer search for "seating" that gave me the best chance to hear and other benefits. I am kind of bewildered that your audiologist would recommend nothing - my audiologist was insistent that my quality of life would improve and she was right. I am fortunate that my wife's health insurer pays for hearing aids (every four years).

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@golden418. I read about the Phonax BiCros and think getting it when it's safer to venture out will dramatically improve the quality of the rest of my life. Engineers did finally design something that could help me...I just didn't know about it. What a wonderful gift you have given me. Thank you so much for telling me about it! Best wishes, Nancy

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