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Help: Sudden Sensorineural Hearing Loss (SSHL) - very scary

Posted by ed140 @ed140, Sep 6, 2019

I just got diagnosed with hearing loss by My ENT. Woke up and hearing was gone in my left ear. I'm being treated with oral and ear injected steriods. Becoming anxious and panicked about recovery. Hoping someone can offer advice or someone who has story of recovery success. I went to an urgent care the day this happened ,the doctor gave me oral steriods and I followed up the next day with an ent. At this moment I feel the sense of sound but its not clear also hear rapid tones , pops and clicks. Previously I heard nothing at all . hope this means the trearment is working.

Interested in more discussions like this? Go to the Hearing Loss Support Group.

mtnyankee | @mtnyankee | Sep 16, 2019
In reply to @joyces "This isn't what you really want to hear, but you can function quite well with only..." + (show)
@joyces

This isn't what you really want to hear, but you can function quite well with only one ear...once you get used to it. Worst problem is that you can never figure out where sound is coming from, which leads to lots of exercise for your neck muscles as you swivel your head around. I once was walking on a city street with a friend who also can't hear on one side, when a fire truck was a couple of blocks away. We caught each other swiveling our heads around in an attempt to determine where the siren was coming from...and almost fell over we laughed so hard.

The noise is tinnitus, which is nature's way of giving you something to hear. Yeah, it's definitely NOT what you want to hear, but it is intended to fill the void. I refer to it as my "radio station from hell." A hearing aid brings in useful sound (if that ear is "aidable") so that the tinnitus is far less bothersome. Over time, you also really do get used to it. I don't even notice it until someone mentions it. I've had no useful hearing in my right ear for over 30 years.

If you have even a small amount of hearing (not necessarily discernable by you), the left ear may be aidable. I found that the audiologist at Costco has been extremely helpful and able to adjust my one aid to maximize what I can hear, and Costco aids cost far less. I have a Bernefon Zerena, which is made by Oticon, has accessories available, and is designed to be paired with an IPhone (conversation is delivered directly into your ear). The audiologist I've seen at the CI doc's office gives Costco high marks, BTW.

If you have hearing in your right ear, you may not qualify for an implant. I just went through the testing and got a 55% grade, which means that I can hear a bit more than half of simple sentences in a sound booth--50% is the level necessary for an implant. To help you learn to maximize what you hear, you can do exercises in listening at angelsound.com. There are no lip reading (now called speech reading) classes in the US, but you can buy a manual online from Amazon: Learn to Lipread by Virginia McKinney. I'm working on the listening exercises, but haven't yet received the book (just heard about it).

You will need to position yourself so that your hearing ear is always toward the sound you want to hear. Because you can't hear on the left side, you'll always want to be on the left side of the speaker, the auditorium, etc. As you age, you may need an aid for your good ear (age-related deafness), and, eventually, you may well qualify for a CI. One good thing is that, unlike organ transplants, really old people can qualify for CIs. Another good thing is that technology is moving quickly to produce better aids, better accessories, etc.

It's really dark for you right now, but it will get better. It's a terrible shock when it happens; it takes some time to get used to. Good luck!

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Thank you for this information. Lost hearing in left ear suddenly 4 yeas ago. Went through all treatments suggested and acupuncture. Nothing helped. It is as it has been described above. I think i have started lip reading but i also just tell everyone i meet so they will understand. I do neck exercises because it sure does get a work out.

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bgbg | @bgbg | Oct 2, 2019

SHL is scary and frustrating and uncomfortable and embarrassing..... such a burden. I have been suffering bouts of SHL for about 3 years. I’ve seen numerous ENTs, allergist, and an otoneurologist. ENT’s are often undereducated in SHL and the otoneurologist who treated me injected steroid into the middle ear. But once that procedure was done, he let me know that he had done all he can for me and suggested I go to Cleveland Clinic. Each time this hits me I lose most of the hearing in my left ear and each time the episode eases, my hearing is a little worse. I am wearing hearing aides now but the tinnitus and pressure in my head is so severe, again, during episodes, and the sound distortion is so severe that I feel I could go crazy. I am wearing only one hearing aid in the better ear right now. Seems to help a little. Sometimes I know an episode is coming because I have severe allergy symptoms. This makes me think that this might be a histamine overload. (Allergy testing, for me, is inconsistent and doesn’t cover anything but basic environmental exposures.). Yesterday, I was being seen by a cardiologist and just because I was having such a hard time with this SHL episode, I discussed it with him. He too encouraged me to go to Cleveland or Mayo. But I have read so much about this and there doesn’t seem to be any cure or long lasting treatment. Mayo is supposed to be #1 in ENT. Are there any success stories at Mayo treating SHL? I would love to think so but I am skeptical. Anyone?

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mtnyankee | @mtnyankee | Oct 2, 2019

It has been five years since I lost my hearing in my left ear. It seemed sudden and it was complete. I am not sure Mayo or Cleveland Clinic could have helped but if you do go do it ASAP before your loss is total.
For a long time, and now occasionally, I heard noises in that ear. It seemed like my brain was playing pinball trying to hear. I have come to except it is permanent. It is frustrating. I think it is impossible for anyone without this condition to understand even those who are very hard of hearing. Good luck.

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bgbg | @bgbg | Oct 2, 2019
In reply to @mtnyankee "It has been five years since I lost my hearing in my left ear. It seemed..." + (show)
@mtnyankee

It has been five years since I lost my hearing in my left ear. It seemed sudden and it was complete. I am not sure Mayo or Cleveland Clinic could have helped but if you do go do it ASAP before your loss is total.
For a long time, and now occasionally, I heard noises in that ear. It seemed like my brain was playing pinball trying to hear. I have come to except it is permanent. It is frustrating. I think it is impossible for anyone without this condition to understand even those who are very hard of hearing. Good luck.

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There are many clinical studies being done on this but whether or not they will help the ones of us who have lived with this for some time, I don't know but would hope. I just wanted to post something on this board to see if anyone has a success story with Mayo or Cleveland Clinic. It would be a long trip for me to go to either hospital; I would just like to know if there is a possibility. Maybe there will be a treatment for us someday. Good luck to you, as well.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 2, 2019
In reply to @bgbg "There are many clinical studies being done on this but whether or not they will help..." + (show)
@bgbg

There are many clinical studies being done on this but whether or not they will help the ones of us who have lived with this for some time, I don't know but would hope. I just wanted to post something on this board to see if anyone has a success story with Mayo or Cleveland Clinic. It would be a long trip for me to go to either hospital; I would just like to know if there is a possibility. Maybe there will be a treatment for us someday. Good luck to you, as well.

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@bgbg, you asked about stories about success stories regarding sudden sensorineural hearing loss. Here are 2 stories from Mayo Clinic

- Living and Loving Out Loud https://sharing.mayoclinic.org/2019/01/31/living-and-loving-out-loud/
- A Noise-Filled Hearing Loss Journey https://sharing.mayoclinic.org/2018/06/20/a-noise-filled-hearing-loss-journey/

I look forward to hearing more stories from members in this group.

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bobbyboomer | @bobbyboomer | Oct 3, 2019

What I learned is there are over 2 dozen causes of SSHL and you may be affected by one of the uncommon ones. Get another doctor's opinion. And another's. Choose ear specialists and don't quit until you find the cause.

It could be something as simple as an allergic reaction to dust mites.

Bob

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bgbg | @bgbg | Oct 3, 2019
In reply to @bobbyboomer "What I learned is there are over 2 dozen causes of SSHL and you may be..." + (show)
@bobbyboomer

What I learned is there are over 2 dozen causes of SSHL and you may be affected by one of the uncommon ones. Get another doctor's opinion. And another's. Choose ear specialists and don't quit until you find the cause.

It could be something as simple as an allergic reaction to dust mites.

Bob

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Thank you. You know, I read somewhere in a government publication (and it was related to this SHL) that the average person will spend approximately $500,000 before getting the right diagnosis. Guess we have to keep trying.
A fellow Boomer

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musicislife | @musicislife | Feb 25, 2022

Is there a group for sensorineural hearing loss?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 25, 2022
In reply to @musicislife "Is there a group for sensorineural hearing loss?" + (show)
@musicislife

Is there a group for sensorineural hearing loss?

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Hi @musicislife, I moved your message to this discussion group focused on sensorineural hearing loss.

Help: Sudden Sensorineural Hearing Loss (SSHL) - very scary https://connect.mayoclinic.org/discussion/help-sshl-very-scary/

I did this so you can connect with @mikepa @sjd324 @lfoster10 @joyces @judysmayo @joangela @mtnyankee @bgbg @bobbyboomer and others.

You may also be interested in these related discussions:
- Can sensorineural hearing loss be prevented? https://connect.mayoclinic.org/discussion/can-sensorineural-hearing-loss-be-prevented/
– Sudden Hearing loss–options after steroids are ineffective? https://connect.mayoclinic.org/discussion/sudden-hearing-loss-options-after-steriods-are-ineffective/

Musicislife, have you been recently diagnosed with SSHL?

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musicislife | @musicislife | Feb 25, 2022
In reply to @colleenyoung "Hi @musicislife, I moved your message to this discussion group focused on sensorineural hearing loss. Help:..." + (show)
@colleenyoung

Hi @musicislife, I moved your message to this discussion group focused on sensorineural hearing loss.

Help: Sudden Sensorineural Hearing Loss (SSHL) - very scary https://connect.mayoclinic.org/discussion/help-sshl-very-scary/

I did this so you can connect with @mikepa @sjd324 @lfoster10 @joyces @judysmayo @joangela @mtnyankee @bgbg @bobbyboomer and others.

You may also be interested in these related discussions:
- Can sensorineural hearing loss be prevented? https://connect.mayoclinic.org/discussion/can-sensorineural-hearing-loss-be-prevented/
– Sudden Hearing loss–options after steroids are ineffective? https://connect.mayoclinic.org/discussion/sudden-hearing-loss-options-after-steriods-are-ineffective/

Musicislife, have you been recently diagnosed with SSHL?

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First of all, thank you so much for moving me to this group. And yes, I was diagnosed seven months ago. when I called the ENT office and describe my symptoms I was not given an appointment for 72 hours which I now know meant that I lost that window of time when I had a chance to prevent permanent damage. I was put on steroids for 10 days, had an MRI, had 3 transtympanic steroid injections. My right ear was affected and has 3% hearing.

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