Anxiety and disbelief over sudden hearing loss and tinnitus

@judysmayo I think sudden hearing loss is a great one for a Chapter meeting as many people don't know what to do if it occurs. I learned about sudden hearing loss 2 years ago. It comes in several forms. I was at the convention in Salt Lake City and got an urgent text from my wife at home in PA to call her ASAP. She woke up friday morning and couldn't hear in one ear. She previously had perfect health and hearing (she could hear anything I whispered under my breath from the other room!). Fortunately I was at the right place as I had someone from HLAA track down a nationally known audiologist to talk to me. He said with sudden hearing loss the first thing to do is immediately get to an ENT or emergency room. I called my ENT back home and he agreed to see her. Put her on steroids and something else right away and had her get an MRI. It turned out to be an acoustic neuroma, a benign tumor on the hearing nerve. By getting her on steroids immediately, the inflammation went down and within a week most of her hearing came back. And the neuroma was small enough that they could just watch it every six months since neuroma's are slow growing. Two years in and she is doing well. Next MRI this summer.

I just want to say I am very sorry for your hearing loss and increased tinnitus. Is it possible the hearing loss is conductive and may reverse? I know it is easier said than done, but stress and tinnitus go hand in hand. Anything you can do to reduce your stress level, be it speak to a therapist, be in nature, meditate,... can possibly help with the tinnitus, and hopefully, your overall well being.

"Is it possible the hearing loss is conductive and may reverse?"

I don't know what conductive means. As far as I know - I mean based on what little I know about hearing trauma - it's the hair cells in the cochlea that get damaged, and once they're damaged, that's it. They don't regenerate. At least at this point there is no treatment I know of. Maybe someday.

@mikepa
Wow Mike that’s a terrific story! I’m glad your wife is doing good. I Want to put something about SSHL now on our website.

Conductive Hearing loss means that there’s something wrong with your eardrums or middle ear not the cochlea or nerve. Although you can have both at the same time. That’s what I have in my left ear.

This is just venting. No reply expected. I just need to vent. I'm at work and I am constantly noticing the hearing loss. I had interviewed someone on the phone this morning and I had extraordinary difficulty understanding them. I had to keep asking them to repeat themselves ("Say again?" "Please repeat that."). If a phone call isn't crystal clear that's what's happening. I NEVER had that problem before. I just keep ... I can't wrap my mind around this. It's so monstrous I can't believe it. It's surreal that this happened. I keep having these weird moments of disbelief. What makes it even weirder is that it's completely invisible. I sustained this horrible damage and it's invisible. Even my own voice at times sounds different, tinny for some reason.

If the ear drum is damaged it might be repaired. Also some people posted that they had ossicular chain reconstruction which repairs or replaces the 3 tiny bones in the middle ear that attach your ear drum to the inner ear.

@chuckm, my hearing loss forced me to retire because I simply could not hear people on the phone, many of whom became irritated when asked to repeat what they just said. Terribly disheartening. Even friends and family frequently become impatient. The worst are those who say, “Never mind...” when I cannot hear them. Trust me: I feel your pain...

I've been living with hearing loss since the 60s. Had I not discovered Self Help for Hard of Hearing People, Inc. (SHHH) in 1983 I know I'd be expressing the same things here. SHHH changed its name to The Hearing Loss Association of America in 2005. Its mission has always been to make hearing loss an issue of concern by providing information, educational opportunities, peer support & advocacy. I was a member of the first elected national board of the organization, and ultimately served two terms as president. I have watched the development of technology; the metamorphosis of people with hearing loss, the identification of a population separate from the culturally Deaf population, and a movement to change the stereotypes that hard of hearing people are often pegged with. You know; absent minded, not smart, snobby, anti social, reclusive, no fun, etc. We allow those labels to define us when we hide our hearing loss and stop doing things because of it. There are many excellent hearing assistive technologies that can cut out noise in restaurants and at social gatherings, but the reality is...we do best when we can talk one on one with people. Our disability is invisible. We often choose to keep it that way by not using the assistive technologies because they show. Nearly every ad you see on TV or in print media pushes the 'invisibility ' of hearing aids. They all market denial, and we embrace that concept without realizing it.

Yes, I hid my hearing technologies for years. Way back in the early 90s I discovered a hand held microphone that would plug into the direct audio input of my hearing aid. I didn't even know my aids had that feature. I learned about it from another member of the SHHH board. It was a Phonak device. It changed my life. I even went back to school and earned a masters degree in my 50s because of that device, along with others I learned about afterwards. The funniest experience I had when using it, happened early on. I was in a social group where people were talking about the recent election...Ronald Reagan to date myself. I was participating in the discussion freely because of that microphone. One of the ladies in the group took me aside and said something that I will never forget. "Whatever that is that you're using is amazing. I've known you for years and never thought you were smart." I am sure she wanted to swallow her tongue after saying that, but it gave me the opportunity to explain what it was. And I've been sharing information ever since.

SHHH/HLAA has had such an impact on my life that I decided long ago to give back however I could. I've remained involved. I've helped develop new chapters, I've advocated and I've learned from others. I continue to do a lot of presentations for service organizations, schools and anyone who is interested, even now that I'm retired. I'm in my 70s. Speaking of retirement... I retired from a job I loved when I was in my 30s because of my hearing loss. I went back to a similar job in my 50s because of technology. That hand held microphone worked for years until I decided to get a cochlear implant. That too was a game changer.

I am thankful that devices that work like that old DIA hand held mike did are now wireless. They keep me going socially. It isn't always easy. Some people avoid me because they have difficulty understanding that I miss things. It's their problem, or at least that's how I try to look at it. I can only do what technology allows me to do. I use it all the time. I know I'm smart. I love it when I have the opportunity I tell people what it is. Young people are fascinated by it and often ask for more information...because their parents or grandparents 'really need to know about this'. These same young folks should know about captioned telephones and speech to text options on cell phones. It's all out there, but so few who become hard of hearing even know it's there. What a shame.

As long as I'm writing a dissertation here, I want to say more about HLAA. HLAA needs YOU. It's a membership organization. It advocates for you. If everyone who was concerned about hearing loss joined HLAA, the legislators would open their ears a bit more about hearing aid costs, Medicare not covering them, medical research, etc. If there isn't an HLAA chapter in your area, start one. Go public with your hearing loss and set up a discussion group. Talk about it. It's only invisible because we allow it to be. No doubt it hurts. It leads to depression, and now they are saying it can lead to cognitive decline due to isolation. Stay involved. Do things even if you have to do them differently. Find new hobbies; meet other people with hearing loss who 'get it'. You will not regret it. http://www.hearingloss.org

LOL. After that one, I think I'd like a glass of wine with my Wisconsin cheese!

I'm sorry that happened to you. I'm just 55. I have bills to pay. Retirement is not an option. Not even close.