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

Posted by ed140 @ed140, Fri, Sep 6 2:59pm

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.

@ed140 Hi. I posted this a week ago for someone else, but I will repeat it for you as your loss sounds like my wife's. She woke up one morning 2 years ago with no hearing in one ear. I got her into my ENT the same day and he prescribed steroids like yours did. But he also had her get an MRI, which showed that she had an acoustic neuroma (non-cancerous tumor) pressing against her hearing nerve. It was small. Within a week of drugs, her hearing was back to normal and she has been normal for 2 years. However, even though acoustic neuroma's are typically slow growing, we go back for follow up MRI's each year to make sure it isn't getting too large. She might still need to get it surgically removed in the future if it grows too big. Hope this helps. I would get an MRI if I were in your shoes so you could confirm what it is. Good luck.

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@mikepa

@ed140 Hi. I posted this a week ago for someone else, but I will repeat it for you as your loss sounds like my wife's. She woke up one morning 2 years ago with no hearing in one ear. I got her into my ENT the same day and he prescribed steroids like yours did. But he also had her get an MRI, which showed that she had an acoustic neuroma (non-cancerous tumor) pressing against her hearing nerve. It was small. Within a week of drugs, her hearing was back to normal and she has been normal for 2 years. However, even though acoustic neuroma's are typically slow growing, we go back for follow up MRI's each year to make sure it isn't getting too large. She might still need to get it surgically removed in the future if it grows too big. Hope this helps. I would get an MRI if I were in your shoes so you could confirm what it is. Good luck.

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Thanks for the response. The ENT ordered blood work and MRI just to cover all the bases. I'm doing the MRI this week

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@ed140

Thanks for the response. The ENT ordered blood work and MRI just to cover all the bases. I'm doing the MRI this week

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Hi @ed40, you may also be interested in this discussion:
– Sudden Hearing loss–options after steroids are ineffective? https://connect.mayoclinic.org/discussion/sudden-hearing-loss-options-after-steriods-are-ineffective/

Please let us know how the MRI goes this week.

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I’m 6 weeks since the same thing happened in my left ear. I’ve seen 3 specialists and they all say give steroid injections one last chance but none think it will work. It is a real phenomenon that happens to many people! Since I’ve told friends…3 admit that they’ve had the same thing and just wear hearing aids. So sad that this can’t be cured.

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It has been 5 weeks since I suddenly lost total hearing in my left ear. I've seen 2 specialist. Same treatment, oral steroid and steroid injections in my eardrum, MRI and CT scan. The hearing loss was so severe the doctors don't think I will regain any of my hearing back. I'm waiting for another hearing test in a few weeks. I was wondering if anyone has had cochlear implants, hearing aides….if so, does this help with all the noise I'm hearing in my left ear. I'm also wondering if it has helped anyone to be able to go out in public places and to be able to tolerate all that noise. Right now, I'm home bound because I can't tolerate the noise the noise level when I go out. How soon were you able to begin this treatment? I'm ready to get my life back.

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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!

Liked by imallears

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@lfoster10 and @joyces lfoster I’m not sure that what you’re experiencing is tinnitus because I’m not understanding why sounds would get worse outside your home. Tinnitus does seem to be less noticeable when I’m around other sounds I barely notice it. I might be miss understanding what you’re experiencing.
Joyces I too have single sided deafness and it does get dicey not being able to locate the direction of sounds. I have a hearing aid called a BiCros that picks up sound from my deaf side and sends it to my hearing aid in my good ear. I still can’t tell where sound is coming from but it does increase my ability to hear more sound. My husband can tell the minute I don’t have it in. Without it I can’t even hear some sounds. It really does round out the richness and clarity of sound. I have a Phonak. Here’s some info re BiCros.
https://www.hearingtracker.com/ask/i-am-looking-for-a-bicros-hearing-aid-currently-on-trial-with-audibel-a4i-platinum-and-trying-to-find-the-right-hearing-aid-what-manufacturer-is-recommended-any-other-suggestions

Liked by imallears

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Thank you so much for all the useful information. I'm learning to deal with SSD. It wasn't bad at all when it first happened. I was not experiencing all the extra noise. Now I'm hearing all this noise. I can't handle the noise/feedback I hear in my deaf left ear when a lot of people are talking or a lot of background noise is happening. It sounds like a loud honking sound. It gets so loud I can't hear anything but honking. It startles me because I don't know when it's going to, happen. I guess certain pitches set it off. I try to cover both ears to block the noise to make it not as loud and stop. That doesn't help. At night when I'm trying to sleep, it's a crunching, pulsating sound. Sometimes I hear what sounds like a radio that needs tuned in. When the sound around me is loud, these sounds gets louder in my ear causing me increased vertigo, headaches and anxiety. Is this what tinnitus is? I was under the impression tinnitus was a ringing in your ear. Could this be me ear trying to regain hearing? I have the same problem with trying to figure out which direction noise is coming from. The noise can be happening on my left and it sounds like it's coming from the right. So scary when I walk through parking lots. I'm also having trouble adjusting to the dark. When I turn the light off and start walking into a darker room my body almost freezes up and I lose my balance causing me to fall all over the place. It's almost as if my body is scared of the dark. It really throws my equilibrium off. This is getting better. I just have to remember and be prepared for it. My friend just told me about Costco. I will definitely go there. The hearing devices are a lot less costly. Good to know they are highly recommended. I have read a little about BICROS and will be sure to read the link. Thanks again. I was hoping to be able to cope without any hearing devices but if I'm going to be out and around in public areas, I think I'm going to need a hearing device that hopefully helps me deal with all my issues I'm having. My work place is loud and I would like to have something in place before returning to work so I am able to keep my job without being miserable throughout the day with all these added noises.

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Gosh, I am so sorry you are having to go through that. I hope you get your hearing back soon. Sounds like your ear is trying to respond. Unfortunately, I don’t have any experience with that type of hearing loss. Mine is a profound hearing loss since childhood. My sister-in-Law woke up one morning with no sight in one of her eyes. It did come back. So, I am thinking that with your senses, like your hearing, can repair themselves and return. Wishing you all the luck and beyond.

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@joangela

Gosh, I am so sorry you are having to go through that. I hope you get your hearing back soon. Sounds like your ear is trying to respond. Unfortunately, I don’t have any experience with that type of hearing loss. Mine is a profound hearing loss since childhood. My sister-in-Law woke up one morning with no sight in one of her eyes. It did come back. So, I am thinking that with your senses, like your hearing, can repair themselves and return. Wishing you all the luck and beyond.

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Thank you

Liked by joangela

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@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!

Jump to this post

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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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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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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@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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@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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