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?

@meganmarshall0017

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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Megan, that's a neurotologist, not a neurologist.

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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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This is my standard reply, but it is personal experience! Whenever I read of symptoms like yours I immediately think of Meneres Disease. I got my first episode at 24 and was misdiagnosed for 15 years, for some reason doctors don’t get it. The thing that finally got me better was to cut my sodium intake to less than 1000 mg a day. The low sodium will allow your body to get rid of the water or fluid in your body, in many of us the dizziness and subsequent nausea are caused by fluid build up in the inner ear. It is an easy thing to do, read labels and note how much sodium is in a SERVING, multiple that times the number of servings and suddenly the amount of sodium is really high. I found it out, when, one Saturday noon I had 3 chili dogs and potato chips, by 5 o’clock I could get off my back, on Monday when I called the doctor and he asked me what I ate, he chuckled and said I bet you were really spinning out. It will take a few days for your body to rid the sodium but if that is the issue within a week you will feel considerably better. Google Meneres Disease and check it out.

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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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Hi Megan. You've come to a good place to get information. By discussing hearing issues you learn you are not alone. That helps. My hearing loss was diagnosed in my early 20s, and for years I thought I was the only person under age 65 who had poor hearing. Seriously, there was no way to connect with others my age. That was years ago. I then became involved in The Hearing Loss Assn. of America (HLAA), and met many people just like me. I also learned that everyone's hearing loss is unique. I've met thousands of people with hearing loss; some progressive over time like mine, and some like you who have had sudden hearing loss onset as adults. It sounds like you are doing the right thing. An ENT should be able to diagnose and treat sudden hearing loss, assuming it is treatable. From what you said about taking prednisone and the possibility of an injection, it sounds as if they are following standard procedure. Sudden hearing loss as you describe, is somewhat of a mystery. Sometimes it goes away; sometimes it doesn't. You are correct, that there is a short window of opportunity for medication to cure the problem. I hope you are one of the lucky ones for whom steroids work.

Should they not work, it's important for you to know that there are procedures and technology that can help you hear. We are living in times when medicine and technology are amazing. I have a cochlear implant that brought me back into the hearing world. I know several people with sudden onset hearing loss who have had remarkable results with cochlear implants. I also know some who have had positive results with the initial treatment that you are receiving. Think positive and know that people care. Do keep us posted on your progress and situation.

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@jh31251

This is my standard reply, but it is personal experience! Whenever I read of symptoms like yours I immediately think of Meneres Disease. I got my first episode at 24 and was misdiagnosed for 15 years, for some reason doctors don’t get it. The thing that finally got me better was to cut my sodium intake to less than 1000 mg a day. The low sodium will allow your body to get rid of the water or fluid in your body, in many of us the dizziness and subsequent nausea are caused by fluid build up in the inner ear. It is an easy thing to do, read labels and note how much sodium is in a SERVING, multiple that times the number of servings and suddenly the amount of sodium is really high. I found it out, when, one Saturday noon I had 3 chili dogs and potato chips, by 5 o’clock I could get off my back, on Monday when I called the doctor and he asked me what I ate, he chuckled and said I bet you were really spinning out. It will take a few days for your body to rid the sodium but if that is the issue within a week you will feel considerably better. Google Meneres Disease and check it out.

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To add to Jon's post about Meniere's Disease (MD):

Actually, although everyone diagnosed with MD is told to limit salt intake, that only works for a small percentage. The best thing to do is to maintain a calendar or diary, coloring each day according to the kind of day it was (good, poor, awful) AND noting even the smallest changes for what's usual for you: diet, exercise, rest, stress, inhaled allergens, to name a few. You may learn that there are things or a single thing that triggers bad days, giving you a way to avoid or eliminate triggers.

The single most common trigger for women, esp. those past 40, is low hormone levels. It may require rather large doses of properly balanced hormones (1 part estrogen to 2.5 parts progestin) to beat back MD, but then the hormones can be reduced to a maintenance level. I first had real problems with Meniere's during my mid 40s, after I had stopped taking birth control pills because I was "too old" for them. I had increasing vertigo and hearing impairment every month within a day of the onset of a period. It took four years of sheer hell to find a safe but effective amount of hormones (HRT). By then, both hearing and balance in my right ear was permanently damaged. Then I enjoyed a remission of more than 30 years.

When I went bilateral, i.e.,my left ear suddenly quit hearing and had screaming tinnitus, a year ago, my primary doc, fearing cancer, was unwilling to prescribe HRT. I put up with being essentially profoundly deaf due to the distortion and recruitment, but when vertigo and vomiting for hours at a time began months later, that was just too much. Once I found a doc willing to prescribe HRT, I've managed to, I hope, achieve a new remission. As a bonus, my hearing is essentially back to where it was before I went bilateral–not great, but good enough to survive in a hearing world. It's been almost five weeks since my last crisis, and I've had zero vertigo instead of the non-stop dizziness to the point where I was forced to lie with eyes closed for hours at a time. I haven't yet learned how to compensate for the additional loss of balance, so will begin vestibular rehab Wed.

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@julieo4

Hi Megan. You've come to a good place to get information. By discussing hearing issues you learn you are not alone. That helps. My hearing loss was diagnosed in my early 20s, and for years I thought I was the only person under age 65 who had poor hearing. Seriously, there was no way to connect with others my age. That was years ago. I then became involved in The Hearing Loss Assn. of America (HLAA), and met many people just like me. I also learned that everyone's hearing loss is unique. I've met thousands of people with hearing loss; some progressive over time like mine, and some like you who have had sudden hearing loss onset as adults. It sounds like you are doing the right thing. An ENT should be able to diagnose and treat sudden hearing loss, assuming it is treatable. From what you said about taking prednisone and the possibility of an injection, it sounds as if they are following standard procedure. Sudden hearing loss as you describe, is somewhat of a mystery. Sometimes it goes away; sometimes it doesn't. You are correct, that there is a short window of opportunity for medication to cure the problem. I hope you are one of the lucky ones for whom steroids work.

Should they not work, it's important for you to know that there are procedures and technology that can help you hear. We are living in times when medicine and technology are amazing. I have a cochlear implant that brought me back into the hearing world. I know several people with sudden onset hearing loss who have had remarkable results with cochlear implants. I also know some who have had positive results with the initial treatment that you are receiving. Think positive and know that people care. Do keep us posted on your progress and situation.

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Hi Julie,

Just want to say thank you for your reply. I'm so glad that I've found this resource with wonderful people that have experienced what I'm going through. I am going to start prednisone injections on Thursday and am scheduled for an MRI next week. I will keep you all updated.

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@meganmarshall0017

Hi Julie,

Just want to say thank you for your reply. I'm so glad that I've found this resource with wonderful people that have experienced what I'm going through. I am going to start prednisone injections on Thursday and am scheduled for an MRI next week. I will keep you all updated.

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Good luck to you Megan. I hope the injections do the trick.

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@casper15

Hello new to this log I have been told that my hearing loss is getting worse especially since November I’m to the point of just I hear you when you don’t I’m so tired of asking what did you say? And then have people to get mad because you can’t hear them. I have been diagnosed with Ménière disease and my ENT is saying to treat this I need a decompression surgery but a lot of things can go wrong like losing my hearing in that ear all together. I’m so confused and scared that this will never get better.
Barbara

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Hi! Wondering if you had the surgery or not… how've your symptoms been?
I'm at that same point – people get frustrated when I ask them to repeat themselves, so I've just stopped and give a nod instead.

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Hi! I'm Nicole, 37 y/o mom of 3 boys.
I'm super excited to see this group – there doesn't seemto be much out there in the line of support/network building in the heading loss community.
My hearing loss started this past January (2020). I had lost some hearing in my right ear, after having a cold, and recovered in about a week. Fast forward to April – I had Covid. Then 2 weeks later, step throat. I was given Azythromycin and Prednisone to treat it. Again, experienced some hearing loss (about 30% according to audio testing) in only my right ear. This time, it did not return. I experience tinnitus almost constantly and vertigo spells about every other week, as well a feeling of general imbalance for days at a time. I've seen 2 ENTs (an otolaryngologist and a neurotologist), along with a neurologist (my MRI showed Chiari I Malformation, which could've been a possible cause, but proved not to be). I've recently been given a Meniere's Disease diagnosis, confirmed by all 3 dr's.
My primary ENT is pretty chill about it. Told me "the only predictable thing about meniere's is that it's unpredictable."
From what I understand, hearing aids are hella expensive – not exactly an option for me currently – and may or may not help.
ANY pointers on dealing with ANY of this are welcome. Though, I'm honestly just happy to share and compare experiences with people in the same boat. 🙂

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Hi Nicole, I’ve had Meneres for 45 yrs., misdiagnosed for 15 yrs. My left ear is be pretty much shot, about 90% hearing loss, but my right is very good, very little loss. I have gotten by fine without any aids all these years, I miss a few things on my left but get 95% of what is said. The vertigo and balance and stomach issues are another matter. My trigger for that is sodium, I limit myself to 1000 mg or less a day and have had no problems for years. The sodium retains fluid in your body and that excess fluid produces an imbalance in your inner ear and thus the vertigo and associated issues. Give that a try and see if it improves, read labels carefully and understand how sodium filled our processed foods are per serving. Hope that helps you a bit, you have to figure out what works for your body. Meclazine is an over the counter and is cheap and can help with the vertigo, check spelling, but does make you drowsy.

Liked by missniki621

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@jh31251

Hi Nicole, I’ve had Meneres for 45 yrs., misdiagnosed for 15 yrs. My left ear is be pretty much shot, about 90% hearing loss, but my right is very good, very little loss. I have gotten by fine without any aids all these years, I miss a few things on my left but get 95% of what is said. The vertigo and balance and stomach issues are another matter. My trigger for that is sodium, I limit myself to 1000 mg or less a day and have had no problems for years. The sodium retains fluid in your body and that excess fluid produces an imbalance in your inner ear and thus the vertigo and associated issues. Give that a try and see if it improves, read labels carefully and understand how sodium filled our processed foods are per serving. Hope that helps you a bit, you have to figure out what works for your body. Meclazine is an over the counter and is cheap and can help with the vertigo, check spelling, but does make you drowsy.

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Thanks for sharing, Jon.
I rarely eat anything processed to begin with, so the sodium thing is easy to monitor. My dr prescribed Triamterene, which seems to be helpful so far. And I've used the Meclizine once – slept a solid 24 hours with that! Lol
It's comforting to hear that you've done without aids for so long.

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@missniki621

Hi! I'm Nicole, 37 y/o mom of 3 boys.
I'm super excited to see this group – there doesn't seemto be much out there in the line of support/network building in the heading loss community.
My hearing loss started this past January (2020). I had lost some hearing in my right ear, after having a cold, and recovered in about a week. Fast forward to April – I had Covid. Then 2 weeks later, step throat. I was given Azythromycin and Prednisone to treat it. Again, experienced some hearing loss (about 30% according to audio testing) in only my right ear. This time, it did not return. I experience tinnitus almost constantly and vertigo spells about every other week, as well a feeling of general imbalance for days at a time. I've seen 2 ENTs (an otolaryngologist and a neurotologist), along with a neurologist (my MRI showed Chiari I Malformation, which could've been a possible cause, but proved not to be). I've recently been given a Meniere's Disease diagnosis, confirmed by all 3 dr's.
My primary ENT is pretty chill about it. Told me "the only predictable thing about meniere's is that it's unpredictable."
From what I understand, hearing aids are hella expensive – not exactly an option for me currently – and may or may not help.
ANY pointers on dealing with ANY of this are welcome. Though, I'm honestly just happy to share and compare experiences with people in the same boat. 🙂

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Nicole,

Yup, could be Meniere's (MD), although 80% of those so diagnosed have something else–MD has a code that allows docs to bill ins. so it's overused. I've had MD most of my life, over 60 years, but it didn't become a problem until I quit taking birth control pills in my early 40s. Even though my primary doc and I knew that the MD was related to low hormone levels, it took us four miserable years to find what was considered both safe and effective. At that point, I quit having vertigo/vomiting crisis 3x/week and started VRT (vestibular rehab therapy). I did VRT every day to offset the damage to my right side, was able to lead a normal life, except for the hearing loss on the right side, which ended by active amateur musical participation. As I aged, I reduced the amount of hormones to almost nothing. The remission lasted over 30 years, until a little over a year ago, when I suddenly lost most hearing on the left side–I had gone bilateral. For months, it was mostly hearing, with some increased imbalance, but Christmas Day I had the first total vertigo/vomiting crisis of several hours. As that became more frequent I looked for a local doc willing to prescribe HRT (hormones) for someone in their late 70s. Once I finally found a willing doc, the vertigo totally ceased, and, amazingly, much of the lost hearing returned.

Note that an unusually large percentage of those with MD are late 30s/early 40s women. Like diabetics whose bodies don't make enough insulin, some women's bodies don't make enough hormones, esp. as they age and/or quit taking birth control pills (hormones). Many docs fear prescribing hormones for women past 35 or 40, due to the risk of cancer, esp. breast cancer. However, properly balance amounts of estrogen and progesterone are perfectly safe: 1 part estrogen balanced by 2.5 parts progesterone.

Even if this isn't a large part of your problem, try maintaining a calendar that shows the kind of day you've had and even the SLIGHTEST difference from whatever's normal for you in anything: diet, exercise, sleep, stress, weather, etc., etc. I used a color to fill in the day to indicate whether it had been good (blue), so-so (pink), or bad (yellow). You may find a pattern that will show what your trigger to bad days is: MD is most often triggered by something in your life. All docs will say to reduce salt, which is healthy, but may or may not help you. If your hormone levels are abnormally low, you won't have enough hormones to react to salt. I've known people who have specific triggers, often allergies, that can be treated or avoided.

Once you figure out what your trigger or triggers are and deal with it/them, start a vestibular rehab (VRT) program. Even though your primary inner ear balance function is compromised, you probably have quite a bit of residual balance function, and you can learn to use it. Once I got the crises under control and started VRT, I was able to maintain a very active lifestyle, including doing data collection in a wild little river for the past 30 years, where hiking and wading both offer challenges to the most fit, let alone me! Now that I've gotten my new bilateral left ear problem under control with hormones, I've just started VRT to learn how to make my former good side work again. I've been impressed with how much balance I have on what was my bad side–i.e., how much good all that daily VRT has done! I'm now working hard on new VRT to teach my left side to utilize every bit of residual function it has and am confident that I'll remain as active as I've been. I'll be 78 in a few days, routinely drive two hours each way to load donated bread (roughly 750 pounds of it) every week, continue to collect data in the wilderness river, maintain a acre of our forested acreage in mowed area and flowers. I'm far more active than most people my age…and intend to remain that way.

As for hearing, much of your problem is probably distortion and recruitment, neither of which is helped with aids. However, getting the MD under control can eliminate both of those problems. I have been wearing an aid in my former good ear due to age-related deafness; I bought it at Costco for $1,400, total return policy, free return appts. for adjustments forever–can't find a better deal. The same aid from an audiologist would have cost over $3,000 and there'd be a charge for every adjustment, like a doc appt. But, again, you may learn that your problem is far more distortion/recruitment than actual loss of hearing.

Message me privately if you have questions about MD. I ran an online discussion group for over 30 years, until Facebook replaced it, so have learned a great deal about this cursed disease!

Liked by missniki621

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@missniki621, I add my welcome. You may wish to join @joyces, @jh31251 and others in this discussion group dedicated to Meniere's:
– Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/

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Thanks, I’ll say more later. My issues are hearing loss due to age and nerve issues related to infections

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@lou1940

Thanks, I’ll say more later. My issues are hearing loss due to age and nerve issues related to infections

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Hi Lou, Welcome to 'Connect' and 'conversation'. Hearing loss is common among people who are over age 60, but it also affects many who are younger. The National Institutes of Health tell us there are 48 million Americans with some degree of hearing loss. FYI: Fewer than 2 million of that number are culturally deaf people who use American Sign Language (ASL) by choice. Because hearing loss without ASL is pretty invisible, that confuses a lot of people into thinking that manual communication is what everyone with hearing loss should do to get along. Not true. Because hearing loss, especially that of adult onset, is an invisible condition, people often waste years trying to hide it or deny it; meaning they probably don't seek help. In most of those cases, everyone else knows the person doesn't hear well. It helps a lot to talk to other people with adult onset hearing loss. It also helps to talk to their partners and family members. You will learn a lot from them. Many of us have spent considerable time in this world of poor hearing, and have had experiences; both good and bad, that we are willing to share. The same size doesn't always fit all, but it does help to learn. We are fortunate to live in times when technology has advanced enough to include us in most things we are used to hearing. While hearing aids are not a cure all, they can be wonderful helpers IF they have all the components necessary to connect, and are fitted properly. As someone who was diagnosed with adult onset hearing loss at a rather young age, I have been using hearing aids for over 40 years. While my hearing loss is profound, I function fine in the hearing world thanks to technology. Feel free to ask questions.

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@julieo4

Hi Lou, Welcome to 'Connect' and 'conversation'. Hearing loss is common among people who are over age 60, but it also affects many who are younger. The National Institutes of Health tell us there are 48 million Americans with some degree of hearing loss. FYI: Fewer than 2 million of that number are culturally deaf people who use American Sign Language (ASL) by choice. Because hearing loss without ASL is pretty invisible, that confuses a lot of people into thinking that manual communication is what everyone with hearing loss should do to get along. Not true. Because hearing loss, especially that of adult onset, is an invisible condition, people often waste years trying to hide it or deny it; meaning they probably don't seek help. In most of those cases, everyone else knows the person doesn't hear well. It helps a lot to talk to other people with adult onset hearing loss. It also helps to talk to their partners and family members. You will learn a lot from them. Many of us have spent considerable time in this world of poor hearing, and have had experiences; both good and bad, that we are willing to share. The same size doesn't always fit all, but it does help to learn. We are fortunate to live in times when technology has advanced enough to include us in most things we are used to hearing. While hearing aids are not a cure all, they can be wonderful helpers IF they have all the components necessary to connect, and are fitted properly. As someone who was diagnosed with adult onset hearing loss at a rather young age, I have been using hearing aids for over 40 years. While my hearing loss is profound, I function fine in the hearing world thanks to technology. Feel free to ask questions.

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Thanks for your reply. I am 80, and have had Resound in-ear aids for 5 years, following a mastoid operation. I was fitted for a new version of aids recent and are awaiting their shipment from Resound. Glad to be part of your group. Thanks again.

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