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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?
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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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4 ReactionsHello,
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
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.
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?
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!
Megan, that's a neurotologist, not a neurologist.
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.
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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3 ReactionsTo 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.
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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