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?

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

@joyces

reply to jjc: Jon is correct in that it does sound suspiciously like Meniere's Disease when you have V&V (vomiting and vertigo). Can't tell from your ID, but, if you are a female, particularly one in her 40s, think about trying hormones. I've had Meniere's most of my life. During my 20s and 30s I had two classic V&V crises, both brought on my temporarily ceasing birth control pills (i.e., hormones). During my early 40s, I was considered "too old" to take birth control pills. Each month I had ever more serious V&V episodes within a day on the onset of a period. After eight months, I found myself spending hours on the bathroom floor in a pool of vomit--not a pretty picture! My primary doc and I didn't need lots of research to see that there appeared to be some connection with hormone levels, so we began to explore what would be "safe" for someone in their 40s. We spent four years seeking the right combo, and I was increasingly ill with V&V episodes that lasted 12-15 hours, 2 or 3 times every week. Lost all hearing and balance function on my right side. Because much of my job could be done at any day or hour, I was able to continue to manage a small publishing company and do frequent travel connected to the job, but it was a constant struggle. Finally, an OB/Gyn from Texas that my husband and I fished with whenever he was in the Northwest, told me exactly what I should take as replacement hormone (HRT). Less than a month after starting his program (with my own doc's approval), I quit having crises of V&V and was able to begin a program of vestibular rehab. Unfortunately, I had permanently lost both hearing and balance on the right side, but, with daily rehab exercises I was able to be active outdoors and continue to work in the sportfishing publishing world.
Then, May 24, 2019, at 6:45, the Meniere's went bilateral by attacking my left ear, which, at 77, already had some age-related loss. For almost a year I was close to functionally deaf. My new primary doc has had breast cancer so has a great fear of any HRT and wouldn't prescribe it. As the deafness continued, I had more and more episodes of V&V, until I wasn't able to function normally, was afraid to drive on the highway lest I'd need to pull over and some kind policeman would have me carted off to a hospital. I was desperate, so finally found a local doc willing to prescribe HRT. In less than two weeks not only did the V&V cease, but my hearing returned to the level where it had been prior to going bilateral. In early May, I started two doses of hormones every day, balanced with 5mg progesterone for every 2mg estrogen, which is a "safe" combination not likely to cause cancer. By August, I was able to cut back to a half dose every other day, and I'm about ready to try half doses every day...as long as neither the hearing I have left or balance are affected. I did go to a vestibular PT to brush up on the latest VRT (vestibular rehab therapy). At 78, I can now wade rivers, hike in difficult trailless terrain, and live a normal active life. I can't begin to say how exciting it was to hear things again: birds, voices, even everyday things like hearing that the car is running rather than depending upon the gauges! I can hear the dishwasher or washer instead of having to touch the sides of the appliance to feel if it's running.
There has only been one study of women with Meniere's and hormones, done in China, but it does prove that a fairly high percentage of middle-aged or older women with Meniere's will respond to HRT.

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Joyce, thank you for your detailed response. glad to hear you have made great progress after such a long struggle. I am a 68 year old male so hormone therapy is probably not appropriate. while still having some dizziness, have not had any vomiting since Tuesday so I have stopped taking the zofran and diazepam. while update after mri results. thank you, jjc

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Looking for advice, support and recommendations for what I do next. I am 43. I have a history of ear infections and ruptured ear drums. 3 years ago we moved from Connecticut to Pennsylvania and I started to develop more frequent ear problems. December of 2018 I had a right eardrum replacement that failed. I was diagnosed with moderate to severe hearing loss in my right ear that could be corrected with another surgery. Prior to the surgery I was told that the surgery was a surgery that I would be able to return to work the next day. That was nowhere near the case. I had vertigo, nausea and extreme fatigue for 3 months. I didn’t feel comfortable driving my car for 6 weeks and feel semi normal for 3 months. I questioned the surgeon that did my surgery and lost confidence of repeating the procedure again. I developed multiple infections over the past 2 years. The beginning of September I came down with a cold and of course it went to my ears. This particular illness was nothing I’ve felt before. I was use to ear pain but this time my hearing sounded like I was tuned into a bad radio station. I couldn’t understand what was being said to me. The vertigo and nausea knocked me down. I called my primary care doctor which but me on a Zpac prednisone and a few other meds for chest congestion. After 5 days I saw no improvement with my hearing and asked for a referral to ENT. When I saw the new ENT I was about 3 weeks into feeling ill. Right away the new ENT Dr sent me for audiology and they started injections. I did 3 steroid injections over a 3 week period and retested my hearing. The only improvement I have is my word comprehension increased from 84 to 96. I have a constant buzzing in my head that won’t go away and the more noise I’m around the louder it gets and also that ear that I had surgery on in 2018 they would not try to repair because of the risk of total loss of hearing. I struggle daily. I haven’t been able to work a full work since the beginning of September. My head feels like it’s going to explode after day 2-3. I’m at a loss and don’t know what to do. I’m definitely struggling with adapting to this new lifestyle and extremely frustrated that normal activities that I could do 2 months ago seem non existent in my future. Any advice or recommendations on how to move forward and what I should do are greatly appreciated!!!!!

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HRT certainly would not apply! However, it has been found to be a great relief for women. Best thing you can do to remain stable (whether or not you actually have Meniere's) is to think about what you feet feel when you walk (fancy name is proprioception). That's your third balance system, the first being your inner ear and the second being vision. It's natural to start relying on vision (whether you realize it or not) when your inner ear doesn't function as well as it should, but that leads to vertigo and vomiting because every time you move your head you lose your focal point. By concentrating on what your feet tell you, you'll learn to use proprioception and will be able to be stable and confident. Part of that is checking the area ahead of you; if there aren't any things that can trip you, look out beyond instead of looking at the surface underfoot. A simple, easy exercise is to find or make something that's only 4 or 5 inches high, large enough for both your feet--a small step. Place it where there's something to grab on both sides if you start to lose your balance. Eyes open, step down with your right foot, and get stable, then back up; repeat four more times. Then, do the same, eyes closed. Don't rush: allow yourself to stabilize with each step up or down. If you do that five times on each side twice a day, you WILL feel more stable, better grounded. Another trick is to NOT turn on night lights but walk within the safety of your own home in the near dark. Naturally, you want to remove any obstacles that you could trip over! Once you can walk in the dark inside, try walking outside in the dark (or as dark as it gets if there are outside lights). If there's lots of light, try walking with your eyes closed for four or five steps. While you're doing that, again, think about what your feet tell you. I walk a quarter mile each way on gravel to pick up the mail and have found that it's the most useful vestibular exercise I do! I'm still far more careful and slow going down extremely steep slopes, but I can hike miles, even wade for a mile or so, without feeling uncomfortable. Loss of inner ear function (some of which is a normal part of aging) decreases your ability to know exactly where things are, or how far away they are, how far down the next step will need to be. Best of luck getting all your hearing back!

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@jjc

good morning and thank you for having this group. I woke up last Sunday morning with a sore throat, which quickly went away and I felt fine all day. Monday, I awakened with congestion in both ears. right ear cleared up but Monday afternoon when on the phone I noticed I had no hearing in my left ear. Tuesday morning experienced significant dizziness and vomiting. was fortunate to get in to see an ent dr Tuesday morning. had an audiometric test and was diagnosed with sudden sensorineural hearing loss. there is no hearing in the left ear at any range. was put on a regimen of 3 doses of 20mg of prednisone daily with valium for the dizziness and zofran for nausea. I am scheduled for an mri tomorrow morning. I have never had any hearing problems previously and am in good health. I am not on any medications until now and exercise regularly. ent dr says that next step will be to have intratympanic injections. in doing "google rabbit-hole" research, I have come across various other treatments including, HBOT, pulse therapy, fibrinogen/LDL apheresis and a current phase I/IIa study of intratympanic PIPE-505. I have been told that sshl is idiopathic with recovery being random. would appreciate hearing from others with a similar experience and how they proceeded. thank you.

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Hi..... In 2016 I was taking three powerful antibiotics at the same time for a difficult to treat lung problem. After 4 months of the antibiotics I suddenly lost some hearing in my left ear, and a week later in the right. Also developed vertigo. I was given oral steroids then steroid injections and it did improve my hearing. But only temporarily. Over the course of four years it has gradually gotten worse to the point where there is severe loss in one ear and profound in the other. I have had the course of steroids 3 times and followed up with steroid injections into my ears each time. The last course of both oral and injections did not improve the hearing at all. The vertigo is with me 24/7 and my balance is terrible, have to be so careful not to fall.
Meniere's disease has been ruled out for me. Doctor's are of differing opinions as to whether the original cause was inflammation from an autoimmune disease that I have or from the antibiotics that I took.
Apparently there can be many causes for sudden hearing loss. In your case it seems a real puzzle since you had no underlying health issues. I am glad you jumped on it so quickly and are doing research as well and I hope that everything is only temporary for you. This is a good group to stay connected with and relate to those with similar issues. Good luck to you. Judy

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Reply to Judyca7: Judy, please check out what I posted for the fellow who does NOT have Meniere's. It's in the string just above what you just posted 5 minutes ago. If you work on VRT (vestibular rehab therapy), you WILL have more stability in everything you do. It will also help you judge distances when using your hands, like picking up a pen or pencil or chopping veggies on a cutting board. Try it...you CAN be far more stable, remove your constant fear of falling.

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@judyca7

Hi..... In 2016 I was taking three powerful antibiotics at the same time for a difficult to treat lung problem. After 4 months of the antibiotics I suddenly lost some hearing in my left ear, and a week later in the right. Also developed vertigo. I was given oral steroids then steroid injections and it did improve my hearing. But only temporarily. Over the course of four years it has gradually gotten worse to the point where there is severe loss in one ear and profound in the other. I have had the course of steroids 3 times and followed up with steroid injections into my ears each time. The last course of both oral and injections did not improve the hearing at all. The vertigo is with me 24/7 and my balance is terrible, have to be so careful not to fall.
Meniere's disease has been ruled out for me. Doctor's are of differing opinions as to whether the original cause was inflammation from an autoimmune disease that I have or from the antibiotics that I took.
Apparently there can be many causes for sudden hearing loss. In your case it seems a real puzzle since you had no underlying health issues. I am glad you jumped on it so quickly and are doing research as well and I hope that everything is only temporary for you. This is a good group to stay connected with and relate to those with similar issues. Good luck to you. Judy

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judy, sorry to hear that you are having such a difficult time with no improvement. sshl seems to be an enigma lacking a gold standard of treatment. good luck to you also. jjc

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@jjc

good morning and thank you for having this group. I woke up last Sunday morning with a sore throat, which quickly went away and I felt fine all day. Monday, I awakened with congestion in both ears. right ear cleared up but Monday afternoon when on the phone I noticed I had no hearing in my left ear. Tuesday morning experienced significant dizziness and vomiting. was fortunate to get in to see an ent dr Tuesday morning. had an audiometric test and was diagnosed with sudden sensorineural hearing loss. there is no hearing in the left ear at any range. was put on a regimen of 3 doses of 20mg of prednisone daily with valium for the dizziness and zofran for nausea. I am scheduled for an mri tomorrow morning. I have never had any hearing problems previously and am in good health. I am not on any medications until now and exercise regularly. ent dr says that next step will be to have intratympanic injections. in doing "google rabbit-hole" research, I have come across various other treatments including, HBOT, pulse therapy, fibrinogen/LDL apheresis and a current phase I/IIa study of intratympanic PIPE-505. I have been told that sshl is idiopathic with recovery being random. would appreciate hearing from others with a similar experience and how they proceeded. thank you.

Jump to this post

About 4 years ago I had exactly the same thing happen upon awakening. Went to Urgent Care and was told it was a blocked eustation tube and to take Zyrtec. I was going on trip and when I returned it was no better so called an ENT I knew in Oregon. He said he thought I was misdiagnosed and recommended immediate hearing test. After test confirmed a 60% loss in left ear I was put on a course of prednisone and condition did not change. I have age related loss in my right ear so have been fit with what is called a "Cros II Phonak aid in the right ear and left ear a microphone that picks up sound and transfers to right ear. One on one I do fine and have a Com Pilot you can purchase that is like a remote control you wear around your neck. In groups and movies it helps. It can be paired to an Iphone, Ipad and tv. Along with CC it works well for me. My son recently sent me a microphone which I paired to my Ipad and really get a strong sound without having any other enhancement. I am 87 and in very good health. My father had a profound hearing loss as did his father. My mothers hearing was fine up until death. I have had to make a number of accommodations because of hearing loss but the hardest for me is still people speaking up in a group even though I am wearing a yellow button that says please face me and speak up. I have a hearing loss, We have a local hearing Association which has been immeasurably helpful. Weekly peer meetings held by volunteers in a room that is coiled is a wonderful resource to our community. Good luck.

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There are many variables with hearing loss. Through HLAA (The Hearing Loss Association of America, inc.), I have met many people who have experienced 'sudden hearing loss'. Most did not find treatment helpful. Understand though, that those who talk about it are rarely the people who had successful treatment. My hearing loss happens to be progressive hearing loss, that became profound over decades, so I can't identify with the SHL experience. However, I can identify with what you are going through.

There is hope for nearly all types of hearing loss, especially that of adult onset. As adults, we have the benefit of language acquisition prior to the hearing loss. Our brains are wired to hear and understand speech even when our ears fail to get that message to the brain. If injections and other medical treatment do not bring back your hearing, you may want to consider the cochlear implant option. After 40 years of dealing with progressive hearing loss, I had cochlear implant surgery. It gave me back the life I remembered decades prior. People who experienced sudden onset hearing loss who choose the cochlear implant route, generally do better, faster because the brain doesn't need to regroup so much.

There is a webinar on cochlear implants posted on the HLAA website. https://www.hearingloss.org/programs-events/webinars/schedule-recordings/ There are other webinar topics there also. Over 48 million Americans live with hearing loss, and yet, each of us who have it tend to feel ALONE in dealing with it. HLAA brings people together to learn, to advocate, to educate on all issues related to hearing loss. Most HLAA members are people who prefer to remain in the hearing mainstream to live, work, play, etc., thus the focus on technology and medical research. There is definitely life after hearing loss.

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Hi I have A Question. I am using pocket talker two because the rejmote for my ha is broken. It works wel well but I still miss words at Times. My sister gets up Set And wll not repeat.any ideas how we can communicate better.. We need to build a relationship. Not a reply

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@bigmqama

Hi I have A Question. I am using pocket talker two because the rejmote for my ha is broken. It works wel well but I still miss words at Times. My sister gets up Set And wll not repeat.any ideas how we can communicate better.. We need to build a relationship. Not a reply

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I hope you can get the remote repaired. Was that a remote control or a remote microphone? The Pocket Talker should help, however, it helps best if the mike can be as close to the speaker's mouth as possible. Not always easy to do. If you sister is open to learning, try this: Make a list of ten 3 or 4 syllable words like motorcycle, telephone, educate, etc. Then eliminate all the consonants from the words and have your sister tell you what the words are. Most hearing losses are high frequency losses, consonants define words, and most are high frequency sounds. Vowels give words power. We hear most of those but miss the clues to the word meaning. Consequently, we are always trying to keep up. While our minds are trying to figure out one sentence, the speaker is on another one, or even another topic. This is what causes auditory fatigue. If you give them the word with only the consonants they will figure it our fast. Here's one: _o_o__y_ _e vs m_t_rc_cl_ or an easier one like: _u_ _ _e instead of p_rpl_

In presentations, I sometimes use the Gettysburg Address. I have someone read the first paragraph while a timer keeps track of how many seconds it takes the person to read it. Then try the second paragraph that has a few missing consonants. The time will be longer because they have to figure out what is missing. Then try a third paragraph with more consonants missing. Even with a familiar passage it will take considerably more time. That often helps the hearing family member understand what is happening.

Our hearing loss is frustrating to others too. It does help if they understand what's happening.

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