Hearing Loss: Come introduce yourself and connect with others

Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.

Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?

@judithmct

I had mild hearing loss starting as a child and into middle age. At age 50 I started wearing hearing aids and adapted quite well to them. I have had a number of brands including Widex, Resound and Oticon. About 6 years ago I switched from in the ear to behind the ear hearing aids. The last in the ear pair I had were Oticon. These were followed by Oticon behind the ear and I was unhappy with them for the entire three years. I simply did not hear, whatever adjustments were made. I am now at the point of having to decide whether to accept new Oticon S1 (major problem of noise in noise) or to reject the Oticon and find a replacement. I am hoping participating in Mayo Clinic Connect will help me make this decision..

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Can your audiologist not make a recommendation of a hearing aid with a trial period of from 30 to 45 days so that you don't get stuck with one that you are unhappy with?

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Don't accept them if you're not happy with them. I had some ReSound that the audiologist struggled to adjust well beyond the trial period and there was no question that they took them back because they simply didn't work for me. It wasn't my fault they took so long to attempt adjustment. The same may apply to you.

More recently I've had Oticons which were pretty mediocre as have been all of my hearing aids. Then the audiologist installed some different (more powerful) receivers and WOW. They worked much better. Because of the nature of my hearing loss I still can't understand speech very well but I can hear birds and crickets and those annoying beeping alarms I'm not used to hearing. I just discovered that I can hear the pedestrian tones at intersections. I guess I knew they existed but I had never heard them before. It's hard to know what you're missing.

Your audiologist should be able to find you a good solution for you. Keep at it till you they get it right.

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@judithmct

I had mild hearing loss starting as a child and into middle age. At age 50 I started wearing hearing aids and adapted quite well to them. I have had a number of brands including Widex, Resound and Oticon. About 6 years ago I switched from in the ear to behind the ear hearing aids. The last in the ear pair I had were Oticon. These were followed by Oticon behind the ear and I was unhappy with them for the entire three years. I simply did not hear, whatever adjustments were made. I am now at the point of having to decide whether to accept new Oticon S1 (major problem of noise in noise) or to reject the Oticon and find a replacement. I am hoping participating in Mayo Clinic Connect will help me make this decision..

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@judithmct Hi Judith, welcome to Connect.

Keeping in mind that hearing aids will never replicate natural hearing, if your audiologist is good he/she should be able to provide better hearing than it sounds as if you have gotten. My hearing loss has advanced to having trouble with speech comprehension, which is impossible for any hearing aids to compensate for, but some are better than others.

I did have Phonaks but three years ago I changed to Oticon Opn 1 HAs because at the time they were the best in providing the best speech recognition. They were definitely than Phonaks. I did love the Phonaks for restaurants, etc., they were very directional.

I had some problems for a while with my Oticons that my audiologist was not able to fix so she called on Oticon twice and the representative from there came to help. They finally decided to return those hearing aids and get me replacement hearing aids. Problem was solved. I understand that the newer Oticons are even better with speech recognition.

As others have said, you always have a trial period during which you can return the HAs. There may be some charge but it is not nearly the cost of the HAs. Also, how confident are you of your audiologist? Have you considered getting a second opinion? I trust my audiologist and I trust her to know my hearing well enough that she will make the best recommendation.

If you are in or close to NYC I would highly recommend Dr. Ellen LaFargue at the Center for Hearing and Communication. My daughter was working there at one point and when I needed new HAs she convinced me to go to her (I live in NH) so I did. Her recommendation turned out to be exactly what my audiologist here recommended, and Dr. LaFargue is very good and very highly regarded. She was the audiologist who recommended the Phonaks, that was quite a while ago.
JK

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@contentandwell

@judithmct Hi Judith, welcome to Connect.

Keeping in mind that hearing aids will never replicate natural hearing, if your audiologist is good he/she should be able to provide better hearing than it sounds as if you have gotten. My hearing loss has advanced to having trouble with speech comprehension, which is impossible for any hearing aids to compensate for, but some are better than others.

I did have Phonaks but three years ago I changed to Oticon Opn 1 HAs because at the time they were the best in providing the best speech recognition. They were definitely than Phonaks. I did love the Phonaks for restaurants, etc., they were very directional.

I had some problems for a while with my Oticons that my audiologist was not able to fix so she called on Oticon twice and the representative from there came to help. They finally decided to return those hearing aids and get me replacement hearing aids. Problem was solved. I understand that the newer Oticons are even better with speech recognition.

As others have said, you always have a trial period during which you can return the HAs. There may be some charge but it is not nearly the cost of the HAs. Also, how confident are you of your audiologist? Have you considered getting a second opinion? I trust my audiologist and I trust her to know my hearing well enough that she will make the best recommendation.

If you are in or close to NYC I would highly recommend Dr. Ellen LaFargue at the Center for Hearing and Communication. My daughter was working there at one point and when I needed new HAs she convinced me to go to her (I live in NH) so I did. Her recommendation turned out to be exactly what my audiologist here recommended, and Dr. LaFargue is very good and very highly regarded. She was the audiologist who recommended the Phonaks, that was quite a while ago.
JK

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Don't overlook, ahem, Costco. Their Bernefon aids are actually Oticons, but at half the price. In addition, you have 30 days to try them out. If you're not satisfied, you get your $$ back. In addition, you can go back for adjustments as often as you need to at no charge whatsoever. While it's true that Costco generally doesn't have audiologists, some of their fitters are exceptional. The one I go to keeps abreast of what's new and knows more about speech-to-text apps and new apps for aids than some audiologists. She also has taken the time to learn about Meniere's, which is a particularly tricky disease as far as hearing is concerned. Again, she knows quite a bit, while I've yet to find an audiologist who knows much (if anything) about the disease. So, in my book, Costco gets really high ratings, both for value and service.

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@contentandwell

@judithmct Hi Judith, welcome to Connect.

Keeping in mind that hearing aids will never replicate natural hearing, if your audiologist is good he/she should be able to provide better hearing than it sounds as if you have gotten. My hearing loss has advanced to having trouble with speech comprehension, which is impossible for any hearing aids to compensate for, but some are better than others.

I did have Phonaks but three years ago I changed to Oticon Opn 1 HAs because at the time they were the best in providing the best speech recognition. They were definitely than Phonaks. I did love the Phonaks for restaurants, etc., they were very directional.

I had some problems for a while with my Oticons that my audiologist was not able to fix so she called on Oticon twice and the representative from there came to help. They finally decided to return those hearing aids and get me replacement hearing aids. Problem was solved. I understand that the newer Oticons are even better with speech recognition.

As others have said, you always have a trial period during which you can return the HAs. There may be some charge but it is not nearly the cost of the HAs. Also, how confident are you of your audiologist? Have you considered getting a second opinion? I trust my audiologist and I trust her to know my hearing well enough that she will make the best recommendation.

If you are in or close to NYC I would highly recommend Dr. Ellen LaFargue at the Center for Hearing and Communication. My daughter was working there at one point and when I needed new HAs she convinced me to go to her (I live in NH) so I did. Her recommendation turned out to be exactly what my audiologist here recommended, and Dr. LaFargue is very good and very highly regarded. She was the audiologist who recommended the Phonaks, that was quite a while ago.
JK

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JK has said exactly what I was thinking about your audiologist should have been able to provide you with a better hearing situation. I also agree 100% with JK about Ellen LaFargue who was my audiologist until I got a cochlear implant a few years ago. Ellen is Director of Audiology at CHC (Center for Hearing and Communication), formerly known as the League for the Hard of Hearing, an agency which is now more than 100 years old and I think the oldest agency in the country serving those with hearing loss. I could go on and on about what terrific services CHC offers those with hearing loss but I won't indulge!

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@joyces

Don't overlook, ahem, Costco. Their Bernefon aids are actually Oticons, but at half the price. In addition, you have 30 days to try them out. If you're not satisfied, you get your $$ back. In addition, you can go back for adjustments as often as you need to at no charge whatsoever. While it's true that Costco generally doesn't have audiologists, some of their fitters are exceptional. The one I go to keeps abreast of what's new and knows more about speech-to-text apps and new apps for aids than some audiologists. She also has taken the time to learn about Meniere's, which is a particularly tricky disease as far as hearing is concerned. Again, she knows quite a bit, while I've yet to find an audiologist who knows much (if anything) about the disease. So, in my book, Costco gets really high ratings, both for value and service.

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I know a variety of people who are happy with the service they have gotten from Costco, although I think it is best suited for those with Mild to Moderate hearing. I do hear that some Costco's do have audiologists so I just want to say, don't assume that a given Costco does not have an audiologist.

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@barbb

I know a variety of people who are happy with the service they have gotten from Costco, although I think it is best suited for those with Mild to Moderate hearing. I do hear that some Costco's do have audiologists so I just want to say, don't assume that a given Costco does not have an audiologist.

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I first went to Costco almost three years ago, when only my right ear had been affected with Meniere's and was, therefore, downright useless. I went because my "good" left ear had age-related deafness, so initially my loss in that ear was moderate. However, a year ago, Meniere's went bilateral, meaning that suddenly I heard nothing useful from either ear most of the time. I've been back to Costco several times, due to the difficulty presented by fluctuation in hearing loss (one of the really swell features of Meniere's). Every time, there's been a big improvement in my hearing as a result. The patience of the woman at Costco as my hearing has changed has been impressive. She's the only one of all the medical people I see who knows anything about the disease, which really surprised me, as I had initially gone to Costco simply to save money (at the time, my hearing simply needed a boost). She understands the two other "features" of this damned disease: distortion and recruitment, and has made appropriate adjustments. I hadn't been able to listen to music for well over 30 years (since Meniere's had affected my right ear) due to the distortion. She adjusted my aid so that, WOW, I can actually listen to music once again. She is NOT an audiologist, but she has done a lot of self learning to possess the depth of knowledge that she has.

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@joyces

Don't overlook, ahem, Costco. Their Bernefon aids are actually Oticons, but at half the price. In addition, you have 30 days to try them out. If you're not satisfied, you get your $$ back. In addition, you can go back for adjustments as often as you need to at no charge whatsoever. While it's true that Costco generally doesn't have audiologists, some of their fitters are exceptional. The one I go to keeps abreast of what's new and knows more about speech-to-text apps and new apps for aids than some audiologists. She also has taken the time to learn about Meniere's, which is a particularly tricky disease as far as hearing is concerned. Again, she knows quite a bit, while I've yet to find an audiologist who knows much (if anything) about the disease. So, in my book, Costco gets really high ratings, both for value and service.

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@joyces the thing about Costco is that the hearing aid fitters can vary tremendously from one Costa to another. Obviously you got a really good one.

@barbb. Dr. LaFargue really is excellent. As I mentioned, my daughter worked there back when I went to her, she was a grant writer there. If I lived closer I would probably use her regularly, but since she and my audiologist here were in agreement I do feel confident of my audiologist here, and of two other audiologists who work at the same practice.

If you are not aware of Doctor Cliff on YouTube you might check out some his videos, he’s pretty knowledgeable.
JK

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Thanks to everyone for their input. I actually got the Oticon Hearing Aids in February with a 30 day free trial. Then COVID 19 came along and all hearing service offices were locked down. So I have had 3 months to try these out. The audiologist did not fit my last set of hearing aids but she fitted at least 3 sets before that and has always been very good. She has given me an extra 3 weeks which run out next week. I will see if she has any helpful recommendations re the Oticons, but, if not, I think I will ask her to fit hearing aids from another manufacturer.

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@judithmct

Thanks to everyone for their input. I actually got the Oticon Hearing Aids in February with a 30 day free trial. Then COVID 19 came along and all hearing service offices were locked down. So I have had 3 months to try these out. The audiologist did not fit my last set of hearing aids but she fitted at least 3 sets before that and has always been very good. She has given me an extra 3 weeks which run out next week. I will see if she has any helpful recommendations re the Oticons, but, if not, I think I will ask her to fit hearing aids from another manufacturer.

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I know I've missed some of this conversation, so please excuse me if I'm repeating something that has already been discussed.

I encourage everyone who needs hearing aids whether for the first time, or for the 'umpteenth' time, be sure your new hearing aids are equipped with manually controlled telecoils and volume controls. To get the most from hearings aids in many settings you need them both. Don't let an audiologist or other fitter talk you into choosing one over the other.

Telecoils can connect you to so many things, including your computers, cellphones, iPads, tablets, radios, TV and any audio device that has an input jack. Don't let anyone tell you that telecoils are 'old technology'. To be in compliance with the Americans with Disabilities Act (ADA), public venues must provide communication access, just as they must provide mobility access. Many have installed hearing loops that provide wireless connection from the sound system to telecoil equipped hearing aids. All you do is push the t-coil button on your hearing aid and you will hear clearly without any ambient noise interfering. It's like having binoculars for your ears! It's almost magic when you try it for the first time.

Some places may have installed FM or Infrared technology to be in compliance. Those telecoils will let you connect in those places when you use your telecoils with the receivers the venue provides. You will need a small personal device called a neckloop to plug into those receivers, but it sure beats putting on a set of headphones or ear buds when you can use the personal technology that has been programmed for your individual hearing loss needs. The manual volume control speaks for itself. YOU should have the ability to turn it up or down. Automatic sounds good in sales pitches, but in reality there are many times when sound is too loud or too soft. YOU want to be able to make the adjustment.

Many states have active advocacy groups through HLAA. Those states are benefiting from the education and advocacy being done to assure hard of hearing Americans have the communication access that is their right. It takes a village, right? PEOPLE who volunteer their time make things happen.

Interestingly, the ADA was written with a clause that says "In order to receive accommodations, individuals must ask for them in advance of need." That simply means that we, as hard of hearing Americans, must be proactive in requesting what we need. In order to do that WE HAVE TO KNOW what we need. I strongly recommend that you check out the HLAA website http://www.hearingloss.org and also go to http://www.hearingloop.org to learn more about why this matters. We WANT to hear.

Unfortunately, far too many people with hearing loss just stop going to places where one has to hear to be able to enjoy or participate. Bad idea. Isolation is not healthy. Be proactive. Mayo Clinic Connect provides a great place to share information. THe advocacy and information sharing beyond that lies with each of us who learn how to live well with our hearing loss.

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@julieo4

I know I've missed some of this conversation, so please excuse me if I'm repeating something that has already been discussed.

I encourage everyone who needs hearing aids whether for the first time, or for the 'umpteenth' time, be sure your new hearing aids are equipped with manually controlled telecoils and volume controls. To get the most from hearings aids in many settings you need them both. Don't let an audiologist or other fitter talk you into choosing one over the other.

Telecoils can connect you to so many things, including your computers, cellphones, iPads, tablets, radios, TV and any audio device that has an input jack. Don't let anyone tell you that telecoils are 'old technology'. To be in compliance with the Americans with Disabilities Act (ADA), public venues must provide communication access, just as they must provide mobility access. Many have installed hearing loops that provide wireless connection from the sound system to telecoil equipped hearing aids. All you do is push the t-coil button on your hearing aid and you will hear clearly without any ambient noise interfering. It's like having binoculars for your ears! It's almost magic when you try it for the first time.

Some places may have installed FM or Infrared technology to be in compliance. Those telecoils will let you connect in those places when you use your telecoils with the receivers the venue provides. You will need a small personal device called a neckloop to plug into those receivers, but it sure beats putting on a set of headphones or ear buds when you can use the personal technology that has been programmed for your individual hearing loss needs. The manual volume control speaks for itself. YOU should have the ability to turn it up or down. Automatic sounds good in sales pitches, but in reality there are many times when sound is too loud or too soft. YOU want to be able to make the adjustment.

Many states have active advocacy groups through HLAA. Those states are benefiting from the education and advocacy being done to assure hard of hearing Americans have the communication access that is their right. It takes a village, right? PEOPLE who volunteer their time make things happen.

Interestingly, the ADA was written with a clause that says "In order to receive accommodations, individuals must ask for them in advance of need." That simply means that we, as hard of hearing Americans, must be proactive in requesting what we need. In order to do that WE HAVE TO KNOW what we need. I strongly recommend that you check out the HLAA website http://www.hearingloss.org and also go to http://www.hearingloop.org to learn more about why this matters. We WANT to hear.

Unfortunately, far too many people with hearing loss just stop going to places where one has to hear to be able to enjoy or participate. Bad idea. Isolation is not healthy. Be proactive. Mayo Clinic Connect provides a great place to share information. THe advocacy and information sharing beyond that lies with each of us who learn how to live well with our hearing loss.

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This video by Dr. Cliff explains why telecoils are so helpful for hearing when the source of sound is beyond the range of a hearing aid or even bluetooth:

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Hello,

I'm new to the group and looking for support and guidance. I woke up last Monday with a lot of pressure in my right ear and by noon I was extremely dizzy and nauseous. I went to the ENT the next morning for an exam and was told my ear looked clear, but there was some concern with potential sudden hearing loss.I met with audiologist the next day and was informed that I could hear only very low tones from the affected ear, but no word recognition. I've been on a high dosage of oral Prednisone for a week now without any improvement from what I can tell. My ENT wants to see me in another two weeks for another audiology test and to try the steroid injection route if there is no change. I have a couple more ENT appointments this week, with different providers, to try and get more opinions. I'm an overall healthy, 34 year old mom with two young kids and am very anxious to say the least. I've never had any difficulty with my hearing or ears so this has come as a complete shock. From what I have read online, it seems like there is a very short window (2-4 weeks) before there can be any reversal to this so I want to be sure I'm doing everything I can to be proactive. Any advice on things I should look into? I've read a little in to Hyperbaric Oxygen Treament and wondering if anyone had any luck with this?

Thanks for your time,
Megan

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@meganmarshall0017

Hello,

I'm new to the group and looking for support and guidance. I woke up last Monday with a lot of pressure in my right ear and by noon I was extremely dizzy and nauseous. I went to the ENT the next morning for an exam and was told my ear looked clear, but there was some concern with potential sudden hearing loss.I met with audiologist the next day and was informed that I could hear only very low tones from the affected ear, but no word recognition. I've been on a high dosage of oral Prednisone for a week now without any improvement from what I can tell. My ENT wants to see me in another two weeks for another audiology test and to try the steroid injection route if there is no change. I have a couple more ENT appointments this week, with different providers, to try and get more opinions. I'm an overall healthy, 34 year old mom with two young kids and am very anxious to say the least. I've never had any difficulty with my hearing or ears so this has come as a complete shock. From what I have read online, it seems like there is a very short window (2-4 weeks) before there can be any reversal to this so I want to be sure I'm doing everything I can to be proactive. Any advice on things I should look into? I've read a little in to Hyperbaric Oxygen Treament and wondering if anyone had any luck with this?

Thanks for your time,
Megan

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The dizziness and nausea are troubling, although you're rather young to have Meniere's, which often becomes a problem when women hit menopause. If you've been taking birth control pills or some other form of hormones and recently stopped, that would be a huge red flag. The best doc to see, if there's one near you, would be a neurotologist–ENTs only have pretty basic training in vestibular problems. Please feel free to e-mail me separately if you have questions. You can send a private message by going to the home page and selecting members. Look for JoyceS.

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@joyces

The dizziness and nausea are troubling, although you're rather young to have Meniere's, which often becomes a problem when women hit menopause. If you've been taking birth control pills or some other form of hormones and recently stopped, that would be a huge red flag. The best doc to see, if there's one near you, would be a neurotologist–ENTs only have pretty basic training in vestibular problems. Please feel free to e-mail me separately if you have questions. You can send a private message by going to the home page and selecting members. Look for JoyceS.

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Thank you for the response, Joy. No, I haven't taken birth control in 10+ years and haven't been on any kind of supplements or medication outside of a few antibiotics here and there throughout the years. I will ask the ENT I'm visiting with this afternoon about a referral to a neurologist. My initial ENT mentioned that we'd discuss the potential for scheduling an MRI in a few weeks so I'm assuming that would be after visiting with a neurologist?

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@joyces

The dizziness and nausea are troubling, although you're rather young to have Meniere's, which often becomes a problem when women hit menopause. If you've been taking birth control pills or some other form of hormones and recently stopped, that would be a huge red flag. The best doc to see, if there's one near you, would be a neurotologist–ENTs only have pretty basic training in vestibular problems. Please feel free to e-mail me separately if you have questions. You can send a private message by going to the home page and selecting members. Look for JoyceS.

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Note about sudden hearing loss, prompted by Megan Marshall's intro above:

Over a year ago, May 24, 2019, the Meniere's Disease that had ruined hearing and balance function in my right ear over 30 years ago suddenly, dramatically went bilateral. My "good" left ear had age-related hearing loss, and I had started wearing an aid a couple of years earlier, so I didn't have good hearing before going bilateral. I knew that the disease had moved into my left ear when Nancy Pelosi stopped speaking in mid-sentence that evening! For months, I had severely reduced hearing plus serious distortion and recrutiment, both "features" of MD. Christmas Day, I had the first full-blown vertigo/vomiting crisis. As time went on, I had more frequent problems with vertigo, so saw my primary doc in late Feb. She reluctantly prescribed 90 days of some HRT (hormone replacement therapy) but warned me that she wouldn't prescribe any more, as she fears cancer in older people taking HRT. I continued to get worse, with ever more frequent crises, so scheduled an appt. with an OB/Gyn in early May. By that time, I was afraid to drive on the highway lest I be forced to spend several hours parked on the side, vomiting daintily (!!!) into a trash bag. Almost every day I was forced by the vertigo to lie flat, eyes closed, not moving, for hours. Bending over or looking up or moving my head at all were all difficult. The OB/Gyn admitted to knowing zip about MD and almost nothing about HRT, but she prescribed a moderate increase in the HRT. Even so, I continued to get worse, so temporarily almost doubled the dosage for a week. I was pleased to find that the vertigo and vomiting stopped–and, as an unexpected bonus, my hearing was far, far better and continued to improve until it's about what it was over a year ago! By the time I sought help from the OB/Gyn, I was in such hell due to the constant vertigo that lack of hearing wasn't even on my radar. Now, not only am I totally back to being more active than most people my age, but every day I hear things I haven't heard for over a year!

All this makes me wonder if some of the episodes of sudden hearing loss might not actually be MD! I should add that the day my hearing went away, screaming tinnitus moved into my "good" left ear. It gradually became less annoying but is still a completely different noise than the constant whooshing in my right ear, often in time to my heartbeat. The left ear sounds so much like cars driving on gravel that I can't tell when a car's approaching as I walk along our one-lane gravel road. I now can hear birds sing, planes go overhead, the washer or dishwasher running, even water running in the sink from 10' away. It's an entirely new, wonderful world, and I'm thankful every day!

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