Mysterious hearing loss, what could have caused it?

Posted by megwest512 @megwest512, Aug 2, 2021

I am a 27 year old, healthy woman with no health conditions. Last September I woke up one day and thought I had wax buildup in my left ear because I could barely hear….long story short after many specialists, scans, and failed steroids, nobody has been able to tell me how I lost my hearing.
My audiograph results show conductive hearing loss, yet I had no trauma whatsoever that could have caused it. CT and MRI scans are all normal and none of the ENT specialists that I have seen in Denver and Atlanta can give me any answers.
I am posting this simply to see if anyone has or knows someone that has experienced anything like this, and maybe can give me some insight or theories.
Thanks in advance!

-Meg

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So sorry you have sudden single side hearing loss a such a young age. Even though at a much older age I went though the same experience after a return flight from Lao 8 years ago.

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@megwest512 I imagine that this is frustrating. We expect medical science to have answers but there is much that is not known about the causes of hearing loss. What has been suggested for treatment? A conductive loss can sometimes be helped with a bone anchored device or replacement of one of the bones in the ear.
Tony in Michigan

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I do know somebody who had perfect hearing and woke up one morning with profound hearing loss in both ears. She has no clue why this happened. Although she had been back in Canada for several months she worked for Oxfam in Burkina Faso. Could she have picked up a virus or bacteria over there that was the cause. She never did find out but it might be a clue. Have you been overseas in the past year?

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I lost my hearing in one ear quite suddenly four months ago. I didn’t fully realize it until four days later. Since it was a Friday but I realized it, I didn’t get into an ENT until Monday which I know now, was already too late.I did the 10 day steroid prescription, then the ear injections and MRI. At my first visit, I was told there was only about a 30% chance that anything would work at that point. And of course, nothing helped. I am left with 4% hearing in that year along with a lot of distortion. I am a musician but now unable to conduct or sing because I can’t always match pitches.I have done some pretty extensive research on SSHL and no one really has any answers for us.

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The most "real" report I've ever had following a hearing test is when the tech said, "You aren't hearing anything with your right ear, and your left isn't so hot either." At that time, I knew that all the loss was due to Meniere's. However, during the intervening 35 years, I've lost additional hearing in my left ear…until 6:45 May 24, 2019, when I went bilateral: Meniere's had invaded my "good" ear. I was functionally deaf for a year while I sought a doc willing to prescribe mega-doses of hormones. After two weeks of HRT, hearing in my left ear returned to nearly what it had been prior to going bilateral, my balance improved, and I quit the perpetual hours of vomiting. I now have both recruitment and distortion in my "good" ear, but most of the time I can tolerate wearing an aid now. I can't begin to explain how exciting it was to hear things I hadn't heard for a year, even though my hearing is still very compromised.

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@musicislife

I lost my hearing in one ear quite suddenly four months ago. I didn’t fully realize it until four days later. Since it was a Friday but I realized it, I didn’t get into an ENT until Monday which I know now, was already too late.I did the 10 day steroid prescription, then the ear injections and MRI. At my first visit, I was told there was only about a 30% chance that anything would work at that point. And of course, nothing helped. I am left with 4% hearing in that year along with a lot of distortion. I am a musician but now unable to conduct or sing because I can’t always match pitches.I have done some pretty extensive research on SSHL and no one really has any answers for us.

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I had a very similar situation seven years ago and the same follow-up.

My case was diagnosed as « delayed contra lateral endolymphatic hydrops » in the inner ear. I have been taking hydrochlorothiazide and a potassium supplement to reduce sodium in my inner ear, and Betahistine to increase circulation in my inner ear for the past seven years. This has helped a little. I suggest you talk to your ENT about these medications.

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@musicislife

I lost my hearing in one ear quite suddenly four months ago. I didn’t fully realize it until four days later. Since it was a Friday but I realized it, I didn’t get into an ENT until Monday which I know now, was already too late.I did the 10 day steroid prescription, then the ear injections and MRI. At my first visit, I was told there was only about a 30% chance that anything would work at that point. And of course, nothing helped. I am left with 4% hearing in that year along with a lot of distortion. I am a musician but now unable to conduct or sing because I can’t always match pitches.I have done some pretty extensive research on SSHL and no one really has any answers for us.

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@musicislife I'm sorry to hear this as I know first hand that hearing loss is a life changing disability. There are three people in my HLAA chapter who have had SSHL with no help from treatment. All three have become cochlear implant recipients and are doing well a decade or more after getting the implant. This may be a future consideration for you. If the hearing in your other ear has remained normal, there are other solutions. Did your medical team mention anything about bi cross hearing aids? Or bone anchored hearing aids (BAHAs) that transmit sound from one side to the other. Both are for single sided hearing loss.

Millions of Americans experience hearing loss; some sudden and some gradual. It's important to be open to learning how to live well with it. Sounds like you're doing research. I hope you have discovered the Hearing Loss Assn. of America along the way. HLAA provides a lot of information, besides being the only consumer organization for hard of hearing people. HLAA pushes for research in medicine and technology while providing excellent opportunities to learn from people who understand the problems. http://www.hearingloss.org

There are a couple of organizations for musicians with hearing loss that you might want to check out. http://www.musicianswithhearing loss.org is one of them.

Let me know if this is helpful to you.

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Meg! I'm so sorry about the hearing loss. It's super frustrating that it's a common problem that nobody can confidently diagnose and treat. I'm going to tell you what I've tried because something helped my situation, so perhaps it can help yours.

A) One of my ENTs did a 90-minute vestibular test including electrocochleography and otoacoustic emissions. You might ask for that kind of testing. That test concluded that I most likely have outer hair cell damage in my left cochlea.

B) One of my ENTs squirted steroids directly into my inner ear (by poking a hole in my ear drum) and it fixed my hearing for a few days. That suggested to me that the damage was not permanent. It showed me that I need to reduce whatever inflammation is happening in my cochlea.

C) The only recommendation from all my fancy ENTs was to go low-sodium (less than 1000mg per day) and I did.

D) One non-ENT said she's fixed people's hearing with ten one-hour sessions of hyperbaric oxygen chamber therapy at 2.0 ATA. But she said you gotta treat it soon after the hearing loss starts. I tried it and it did not seem to help. But maybe it's worth trying!

E) Then I started taking the following daily supplements: 500mg Niacin (don't buy no-flush; you need the flush event to get good vaso-dialation to boost blood flow through your body), 1280mg of Nordic Naturals Omega-3 (because one doc said the outer hair cells are made of the same materials as fish oil), Zyflamend by New Chapter (because it's a good general anti-inflammation), and a high quality multivitamin. I also started acupuncture once per week and also craniosacral therapy once per week. It took about three months of this and my hearing gradually started to improve.

The doctors say they can't be sure that what I'm doing is actually causing the healing, and it could get worse again in the future. But my hearing is much better!

F) I also found a functional medicine doctor who did a major review of my blood. He took ten vials and sent them to Helix Health and the Cleveland Clinic and carefully studied everything, and recommended other supplements and some hormone replacement therapy. He believes that hormone balancing can affect so many things in your body including hearing. My hearing started improving before I did this, but this seemed like a great step to improving my overall health.

And that's it! I pray for your hearing, and please don't hesitate to private message me with any questions.

I wish you a speedy recovery!
Dan

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Ugh–not knowing makes a really bad situation even worse. I had a bad experience with the ENT doctor that I visited when SNHL made me lose all hearing in my right ear. Not being able to have anyone with me at that appointment because of COVID was really tough too. Not knowing what caused it and realizing that I'll likely never know the cause was the cherry on top of a really depressing sundae. I wallowed for a few days as I hoped that the steroids would work–I didn't believe that they would since the doctor with no bedside manners had already popped that bubble as he wrote the prescription–and then I had to turn my focus to solutions that would help me make the best of what functionality I had left. It would really be nice to know what happened, but I've accepted that I'll never know. I hope the medical field will work toward giving us these answers one day.

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Update on my hearing: I went in for surgery so my doc could look in my ear to see what was wrong. Turns out my incus wasn’t touching my stapes and he just put in a prosthetic incus. Hopefully that works! My tinnitus is gone so I am hopeful

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@megwest512

Update on my hearing: I went in for surgery so my doc could look in my ear to see what was wrong. Turns out my incus wasn’t touching my stapes and he just put in a prosthetic incus. Hopefully that works! My tinnitus is gone so I am hopeful

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Happy to hear that, Meg! Sending best wishes your way!

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@megwest512

Update on my hearing: I went in for surgery so my doc could look in my ear to see what was wrong. Turns out my incus wasn’t touching my stapes and he just put in a prosthetic incus. Hopefully that works! My tinnitus is gone so I am hopeful

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This is very good news.

I'd like to point out here that @megwest512 told us in her original post that her hearing loss was conductive. I'm thinking that most of us here have sensorineural hearing losses associated with the cochlea in the inner ear. I include myself in the latter category. I have a sensorineural loss in the high frequencies of sound and have hearing aids that work really well for me.

Meg, did your doctor tell you what happened to the incus and why it wasn't connecting with the stapes? It's sounds like the little bones in the middle ear were disconnected? I'm so happy to hear that the surgery worked so well for you.

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