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Anyone experience rapid progressive hearing loss in one ear?

Posted by btpanda @btpanda, Dec 18, 2019

Hello everyone. I am new to this group. I am having rapid progressive hearing loss, and I really hope I can talk to folks who has hearing loss experience and get some advice and learn how to deal with it. I hope someone can share what they know and their experience with me. I had sudden hearing loss 10 years ago on my left, it was mild, and it was stabilized until this September. One day at work, I suddenly noticed my hearing changed. Saw ENT 3 days later, my hearing on my left has dropped about 20 decibel. ENT said sudden hearing loss usually does not repeat. I took prednisone, the standard procedure. It did not work for me. Few weeks late, hearing test result showed the same so I thought it's stabilized. Unfortunately, Dec 9, I felt another drop. Went to ENT, again another 20 decibel dropped. I tried intratympanic inject to that ear, did not work. I feel my hearing is dropping daily now. Does anyone has this progressive hearing loss experience? ENT thinks maybe autoimmune disease but so far the blood work showed negative. We don't know what is the cause of this rapid progressive hearing loss. I will probably go deaf pretty soon in that ear. I am scared. Is there any test that I should ask the doctor to run? I am worried that it will spread to my other ear. I am a healthy person, don't smoke, do exercise. Hearing is the only issue I have.

My another question is that with one-sided hearing loss, I feel my left ear is very blocked, actually, my whole left side feels blocked (my head, areas around my left ear and face. When sound is loud enough, I feel like the sound bounced back out from my ear instead of going in. I hearing the sound like boin boin boin, bouncing in my outer ear. With one bad ear, I think it is affecting my hearing in the good side. Can someone tell me how they feel when they have one side hearing loss? Is this blocked feeling usual?

I have ordered a CROS hearing aid and should be coming in January. I hope it can help to get rid of this weird blocked feeling. One of the audiologists told me that since CROS does not do anything to the bad ear, so it probably won't help the blocked feeling. Whatever I feel, will probably stay. Anyone has experience with one-side deafness using CROS?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 19, 2019

Hi @btpanda, welcome to Connect. That must be scary to experience rapid hearing loss in one ear and not to even know the cause. I'd like to bring in fellow members like @golden418 @sarasally2 @imallears and @judysmayo to share their knowledge and experiences. Several members who have had acoustic neuromas also experience one-sided sudden or rapid hearing loss You may also be interested in this discussion:

– Cochlear implant for single sided deafness https://connect.mayoclinic.org/discussion/chochlear-implant-for-single-sided-deafness/

REPLY
muffincat | @muffincat | Dec 20, 2019

I feel for you. Do you have any balance problems also. Like first thing in the morning.? I went 12 yrs with balance and face and earache before finally having total deafness in my right ear.
I consulted prof Google and came up with either MS or AN as the cause so when the doc went to flip me off again I demanded that he prove it wasn't one of those diagnoses.
It turned out to be an AN. it seems mine might have emploded itself and symptoms are back to those of 6 yrs ago. I was diagnosed back 2015.
I haven't bothered with any hearing support.
But do have an MRI if you haven't already.

REPLY
1 reply
btpanda | @btpanda | Dec 20, 2019
In reply to @muffincat "I feel for you. Do you have any balance problems also. Like first thing in the..." + (show)
@muffincat

I feel for you. Do you have any balance problems also. Like first thing in the morning.? I went 12 yrs with balance and face and earache before finally having total deafness in my right ear.
I consulted prof Google and came up with either MS or AN as the cause so when the doc went to flip me off again I demanded that he prove it wasn't one of those diagnoses.
It turned out to be an AN. it seems mine might have emploded itself and symptoms are back to those of 6 yrs ago. I was diagnosed back 2015.
I haven't bothered with any hearing support.
But do have an MRI if you haven't already.

Jump to this post

I truly appreciated your reply. I had MRI with and without contrast. Reviewed by neurologist, things looked good he said, no tumor. I had blood test for ANA, Rheumatoid Factor, C-reactive Protein, Lyme disease, Sedimentation Rate, Antibodies (SM, RNP, RO, LA), and Anti-Neutrophil Cytoplasmic Ab. They all showed within the standard range. They said I don't have Multiple Sclerosis.

I don't have vertigo, so they said I don't have Ménière's disease.

I also read from Google, it seems if it is autoimmune disease, it will spread to the other ear. I don't know if I have autoimmune or not but I am very worried losing my other ear. My ENT said there is no true autoimmune tests to confirm or deny the disease. Some clinicians (I read it online) advise just letting the disease run its course and follow up with a cochlear implant.

How long did it take for you to go from some hearing loss to totally deaf? Mine is decreasing in weeks, so I might go total deaf soon. Do you use hearing aid? Do you feel blocked on your right side? I don't understand how not able to hear in one side causes such blocked feeling, heavy head, and neck tightness/sore. I went to chiropractor to check my cervical spin, no issue there. I don't know what else can I try.

Did they find out your AN by viewing the MRI?

REPLY
1 reply
muffincat | @muffincat | Dec 20, 2019
In reply to @btpanda "I truly appreciated your reply. I had MRI with and without contrast. Reviewed by neurologist, things..." + (show)
@btpanda

I truly appreciated your reply. I had MRI with and without contrast. Reviewed by neurologist, things looked good he said, no tumor. I had blood test for ANA, Rheumatoid Factor, C-reactive Protein, Lyme disease, Sedimentation Rate, Antibodies (SM, RNP, RO, LA), and Anti-Neutrophil Cytoplasmic Ab. They all showed within the standard range. They said I don't have Multiple Sclerosis.

I don't have vertigo, so they said I don't have Ménière's disease.

I also read from Google, it seems if it is autoimmune disease, it will spread to the other ear. I don't know if I have autoimmune or not but I am very worried losing my other ear. My ENT said there is no true autoimmune tests to confirm or deny the disease. Some clinicians (I read it online) advise just letting the disease run its course and follow up with a cochlear implant.

How long did it take for you to go from some hearing loss to totally deaf? Mine is decreasing in weeks, so I might go total deaf soon. Do you use hearing aid? Do you feel blocked on your right side? I don't understand how not able to hear in one side causes such blocked feeling, heavy head, and neck tightness/sore. I went to chiropractor to check my cervical spin, no issue there. I don't know what else can I try.

Did they find out your AN by viewing the MRI?

Jump to this post

Ok so you had full work up to discount the physical possibilities. In my case apart from getting the MRI diagnosis nothing else has been done. My hearing on that side went from zero to slight sound. And the bell palsy type facial paralysis has gone with some sensory dullness and intermittent movement loss. My severe headaches and facial pain have also reduced.  I just go to bed when bad. I did wonder why I had the head neck heaviness and realised I had my head turned to try and balance up the hearing. That also has improved since I reset my head to stay straight on my shoulders. I am presuming your B 12 is ok and you are not on any ototoxic meds or environment. Hope someone can come up with a suggestion 

REPLY
joyces | @joyces | Dec 20, 2019

This is only a way to treat one of the symptoms, but it IS important. Combat balance issues by actively working on balance a few minutes EVERY DAY. Start by standing with your feet fairly close together, eyes closed. At first, you'll begin to "wobble" quite soon, but you should be able to be stable for a minute or so with practice. Then, walk a short safe distance with your eyes closed. While you're doing that, think about what your feet tell you, because they know a great deal more than you'd expect. You can walk in your house at night with all the lights out (there will be a little ambient light), instead of walking with eyes closed. You can also walk outside in low light situations (no street lights, for example); this is especially helpful if uneven surfaces are involved. If you walk without using vision for even a few minutes every day, you'll see a big improvement in balance and eye-hand coordination within a month or less. You can also practice dressing while standing next to a counter or table without touching the counter or table. Putting on your socks is especially good to learn better balance. What you are doing is avoiding using your second balance system (vision), replacing it with proprioception (the info offered by your feet, ankles, knees, hips, etc.). It's natural to use vision when your primary inner ear balance system isn't working well, but every time you move your head your focal point changes and you're disoriented--imbalanced. I know this sounds too simple to work, but, trust me, it really, really does work.

REPLY
1 reply
btpanda | @btpanda | Dec 20, 2019
In reply to @joyces "This is only a way to treat one of the symptoms, but it IS important. Combat..." + (show)
@joyces

This is only a way to treat one of the symptoms, but it IS important. Combat balance issues by actively working on balance a few minutes EVERY DAY. Start by standing with your feet fairly close together, eyes closed. At first, you'll begin to "wobble" quite soon, but you should be able to be stable for a minute or so with practice. Then, walk a short safe distance with your eyes closed. While you're doing that, think about what your feet tell you, because they know a great deal more than you'd expect. You can walk in your house at night with all the lights out (there will be a little ambient light), instead of walking with eyes closed. You can also walk outside in low light situations (no street lights, for example); this is especially helpful if uneven surfaces are involved. If you walk without using vision for even a few minutes every day, you'll see a big improvement in balance and eye-hand coordination within a month or less. You can also practice dressing while standing next to a counter or table without touching the counter or table. Putting on your socks is especially good to learn better balance. What you are doing is avoiding using your second balance system (vision), replacing it with proprioception (the info offered by your feet, ankles, knees, hips, etc.). It's natural to use vision when your primary inner ear balance system isn't working well, but every time you move your head your focal point changes and you're disoriented--imbalanced. I know this sounds too simple to work, but, trust me, it really, really does work.

Jump to this post

Thank you @muffincat and @joyces. The balance exercise sounds interesting, I am going to give it a try. I just came back from ENT and now I officially have an un-serviceable ear. ENT said there is nothing he could do. Just have to hope whatever happened that caused my hearing loss on one side, will not spread to the other side. There is no true test for autoimmune disease but if hearing loss spreads to the other ear, he said that is autoimmune. It's like a time bomb and I don't know when it's going to trigger. I am very depressed and at the same time I am trying to digest the information. I need to learn how to live with one ear hearing. The options for me are: don't do anything, use CROS hearing aid or cochlear implant. Does anyone has experience with CROS?
Can someone tell me if the blocked feeling and heavy head on the bad ear side are common for unilateral hearing loss?

I could not hear from my left side unless they are really loud but I can't understand a word, but for my right side, some sound (like silver dining ware hit the table) is too sharp for my ear now. Hearing test did not show any issues on the right so I don't understand why my brain perceives sound differently now.

REPLY
rossfee | @rossfee | Dec 20, 2019

I’m just starting to experience rapid and now almost complete hearing loss (I estimate around 80% now on my right ear. August 21 st I finished proton treatment but I’m just now beginning to experience significant change. I’m glad to be rid of the neck cancer even if I lose some hearing. Ross

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