Hearing Loss: Come introduce yourself and connect with others

Reply to Verti73

I'm not a medical person but was diagnosed with Meniere's almost 40 years ago, and probably had it for 30 years prior to that. For many years, I moderated an e-mail discussion group about Meniere's which served people with all sorts of inner ear disease. Because I do research for my living, I learned a lot. At 77, I'm far more active than most people my age...in spite of a lack of natural balance. I do instream volunteer work for our fisheries agency in a wilderness river that runs through a very steep canyon, miles of hiking with lots of scrambling over and around obstacles, plus crossing the river. Here are some basics:

Although you may well not have Meniere's--80% of those so diagnosed do NOT have Meniere's--the things to do are basically the same regardless of which godawful disease you have. The doc can apply a magic number if he says you have Meniere's so that insurance will compensate him, plus he can give you the standard bit about low salt and diuretics to get you out of his office, since he has no real remedy to offer. Many of us believe that Meniere's is not a single disease but a handy name for what ails us. The long list of things that trigger bad days or crises plus the various ways we've found to get better hint that there are a bunch of similar inner ear diseases rather than a single one. So, don't waste time and energy stressing about what you actually have. Onset following the molar extraction is damned suspicious, IMHO.

First thing to do is to keep a diary or calendar. Use a color to indicate the kind of day it was--good, so-so, bad, awful. List even the smallest thing you did that was out of the ordinary for your regular lifestyle: diet, stress, amount of rest, weather, hay fever or response to other inhaled allergens, exercise, etc. Over a few weeks, you may spot a pattern that indicates what your trigger or triggers are. Then the trick is to figure out ways to avoid triggers. Yes, some, like weather, can't be avoided, but most can either be avoided or done in moderation. Allergies can be treated. Some people have obtained total relief by avoiding their triggers while most of us feel much better. I only have one: abnormally low hormone levels. That's not likely to have suddenly become a problem at your age, but it is quite common among women in their 40s.

Along with figuring out your triggers, start doing VRT (vestibular rehab). When your inner ear (primary balance system) fails, you start using your second balance system, which is vision. This leads to vertigo: every time you move your head or your body, you lose your focal point. In addition, using vision tends to allow your system to get confused by any signals from your damaged inner ear that conflict with what your eyes tell you. Your body becomes a battlefield, and you're the loser. Trick is to learn to use proprioception, your third balance system. This is what your body tells you about where you are in space, feet being the most important to pay attention to. When I was really sick over 30 years ago, having 12-hour pukefests as often as three times a week, it was believed that VRT wouldn't work until you had the condition under control. Today, we know that VRT is one way to get your life under control.

Bad news is that you'll need to do VRT every day for the rest of your life. Good news is that, after a few years, using proprioception will have become so natural that you won't have to do nearly as much VRT. Another bit of good news is that VRT isn't strenuous, can be done anywhere, anytime. It has a HUGE payback. You'll find that it not only helps you stay upright but helps your hands know where things are. You should see real improvement within a month, if you work on VRT 10-15 minutes every day AND think about what your feet are telling you as you move around.

VRT: start, in sock feet, feet fairly close together, standing in a safe place (hallway or with someone beside you), eyes closed, until you begin to waver. Keep doing this until you can do it for at least a minute. Then, walk a short distance in a safe place or with someone with your eyes closed. While you are walking, listen to your feet. which tell you lots about the surface under them. Closing your eyes prevents you from using vision as a poor substitute. Once you can walk comfortably, do all of this wearing shoes. Also, get in the habit of checking the surface for several feet in front of you and then walk forward without staring at the surface near your feet. The world is amazing! Once you've trained yourself to use proprioception (listening to your feet), you can slack off on the actual VRT, except when you're having a worse day than usual. I make it a practice to turn out all the lights before I go to bed and walk through the house in the dark. I also often walk outside...we live in an old-growth forest with hardly any ambient light, and the surface is either gravel or very rough grass. Using night lights will make you use your vision instead of proprioception. There are also hand/eye exercises, but, if you work on learning to use your third balance system, you will find that your hand/eye coordination improves a great deal.

Over time, the annoyance of tinnitus and recruitment (your ears intensify loud sounds) will lessen.

@verti73 That must have been very difficult to accept such a sudden hearing loss. It sounds as if you are doing as well as anyone could at this point. When you were told that a sudden loss of hearing would be considered to be an emergency, did they think if you had come there immediately it would have made a difference in the prognosis?

Also, along with sitting in a booth or corner at restaurants, do you realize that it is best to sit with your back to the room? That way you are not as bombarded with the noise as you are when you face it. I always try to do that if we are at a table on a wall. Also, I often make reservations on Open Table and I always request a "quiet area if possible due to hearing disability". When restaurants can, they generally do try to accommodate that. Some restaurants are just too noisy everywhere though. I tend to just go to those restaurants once
JK

I was told that if I had been given a steroid inner ear perfusion immediately there would have been a great likelihood that my symptoms and hearing loss would have been relieved. Apparently there is a small window of treatment opportunity before the damage becomes permanent. They said this was caused by a virus that attacked the 8th cranial nerve. A steroid perfusion would have decreased the damage by immediately decreasing the inflammation. I was just past six weeks since the onset of symptoms and they felt it was worth a try to have it in hopes of recovery.

Thanks, @verti73 That's good to know. I think most of us hesitate to do anything unless something really persists or unless there is a very overriding reason to contact your doctor or go to an ER or Urgent Care. I know I am that way unless something is very obviously apparent. When the pain in my leg reached an excruciating point I did not object to going to the ER. Also, when I had a very high temp once I did not object to my husband calling my transplant team - it turned out I had Legionnaire's.
I know I always fear if I make too big a deal of something I will feel silly if it turns out to be basically nothing. I guess we need to be more objective in appraising the situation.
JK

I'm not sure if I ever introduced myself here! I tried to find out by scrolling many communications but found it very confusing as to which way led to recent communications and which to older ones. For example, are the lower numbers representing recent or much older communications. Hope you know what numbers I'm referring to! I guess I'll wait to introduce myself till I hear back from you. Thanks! Barbara

Hi @barbb
Knowing where to find the most recent posts can be confusing. Let me explain. On Hearing Loss group's home page here https://connect.mayoclinic.org/group/hearing-loss/ the discussions with the most recent activity (latest post) are at the top. In other words, when someone posts a new message, that discussion will move to the top.

In a specific discussion thread, you can choose to read the messages in chronological order (Oldest to Newest) or the most recent posts first (Newest to Oldest). How it all works is explained in this blog post with pictures:
- [TIP] Customize the Order You View Posts - See New Posts First https://connect.mayoclinic.org/discussion/new-customize-the-order-you-view-posts-see-new-posts-first/

You might also find these "How to" post of use:
- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
- How to Update Your Profile https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/
- How to Use Connect https://connect.mayoclinic.org/get-started-on-connect/

I hope this helps you feel at home in the Connect community. I look forward to you introducing yourself and getting to know more about you. What is your experience with hearing loss?

Greetings! I lost about half of my hearing 30 years ago due to autoimmune ear disease. It has continued to deteriorate. I have a question because I do not know where to turn. For the past three months I have experienced musical ear syndrome also called auditory hallucinations. I hear music 24/7, mostly 5 songs (Yellow Submarine, Twinkle, Twinkle Little Star, Three Blind Mice, and a few Christmas Carols). This is not a joke! Sometimes I hear people talking real fast but it sounds like they are inside the wall. Sometimes there is a noise like a huge fan. Sometimes I get the fan and 1 or 2 songs all together. I have had an M R I with contrast to check for tumors and it was normal. Does anyone know of a doctor that treats this problem? I am getting pretty desperate. Thank you.

Hi Diana @dianaplwb, I think you might be referring to a condition called "earworm." I've had that for almost a year. Olds songs repeat over and over in my head "24/7". It stops when I'm with other people or doing something that involves thinking or concentration, but otherwise, the songs go one. Sometimes orchestral, or with a choral sound, sometimes just parts of songs. Often, if I begin to review other lyrics in my head from different songs, i can make it stop. Google "Earworm" and see if this describes what you're experiencing.

Yes I have heard it called Earworm. Mine never stops but if I am focusing on something it’s as if it stops but if I listen it is still there. I think the Earworm refers to when you have a familiar song that you can’t get out of your head but it goes away in a few days. Went to sleep last night with the National Anthem. Ugh!

Diana, what you are describing is exactly what I'm experiencing. America the Beautiful, Silent Night, The Caissons go Rolling Along, and others. Who knows why the songs that repeat over and over are stuck in my head. They seem to be ones I knew from childhood. Often just certain phrases of the song will repeat. They are always there, only disappearing when I'm distracted or fully engaged in something else. I did some research and apparently this is very common. I've had this condition for a looooong time.