Sunday, August 7, 2011

Voice recognition and Meniere’s disease

How many hearing tests have you had? I have had quite a few the common theme in every one of them is that my hearing in my left ear is getting worse, to the point of not being able to hear at all.  Fortunately the hearing in my right ear is pretty good although at times I am not quite so sure. The hearing test finds out more than if you can just hear a sound it also tests the level of voice recognition. Lauri’s comment last week was the inspiration for this post.
Here is her comment…
When my left ear became deaf from Menieres
(except for the 24/7 tinnitus!)
I asked my Dr. about a hearing aid, but was told that the regular aid would not work for me due to my ear no longer having what they call "voice recognition". The Dr. said I could look into the bone anchored hearing aid.
Voice recognition really seems to be my problem also. I hear people talking (not always) but I just can’t make it out what they are saying. It can really be embarrassing when you have to constantly ask people to repeat what they just said, some folks are okay with it and others at times seem to be irritated by it.
Is voice recognition a problem for you also? And if you have a hearing aid is it helping you?
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  1. I'm bi-lateral, and have hearing loss in both ears.
    On the hearing test, I have decent voice recognition, as long as they adjust the frequencies, and volume enough. So my hearing aids work....most of the time.

    I've been having some horrible tinnitus lately...I really didn't know it could be so loud! I've had it for years, of course, but for the past month or so, I've been having spells where I can't hear anything over the roaring...I feel like there is a jet engine in my ear.

    My left ear fluctuates, so my hearing aid, helps sometimes...and not so much other times. For the past month and a half the hearing in that ear has been down dramatically except for 2 days...strange.

    My right ear was stable for over a year. (after the endolymphatic sac surgery) And the hearing aid has been wonderful with that...but for the past week, the hearing is again fluctuating in that ear. Today, I can barely hear anything our of either ear.

    One thing I have a hard time with is accents. When my hearing isn't fluctuating, and my hearing aids are doing their job, I still have a very hard time with accents. I've read that a lot of people with hearing loss have this problem, but it makes me feel bad when I have to constantly ask someone with an accent to repeat and repeat when another person who is there with no accent doesn't have to. I think I also have a problem with it because their lips move differently. I've found with most people if they look straight at me when they talk I can hear enough, and read their lips enough to understand...but if they have an accent...well, it's much more difficult.

    I do always explain that I am hearing impaired, and it's not them. I'm lucky that my husband is usually with me, and when I don't understand he will repeat it for me, very clearly, looking at me....I explain that I'm more used to his voice so I can understand it more...most people also notice how he is speaking to me and they will start to do the same thing.
    This makes it much easier.

    I rarely have people get irritated. I get more irritated because I can't understand. It bothers me. I get frustrated, and decide, it's just not worth it sometimes.

    (but that's my problem, not theirs)

  2. PicnicWithAnts, your post really struck a nerve with me... you are SO right about voice recognition and people with accents! I thought it was just me, or something unrelated to Meniere's in any case, but now I realize why a particular problem cropped up for me in the past couple of years.

    In my most recent jobs, I had to interview executives with companies in India on a regular basis, as well as executives of companies in Europe. I found that I did OK with this as long as they spoke relatively slowly and the phone connection was very good, but as soon as I got hold of someone who spoke more quickly, or wanted to be interviewed on their cell phones, I was completely at sea. Now I realize this had a lot to do with voice recognition.

    My left ear is almost dead, following the labyrinthectomy, and what I do hear on that side is very, very muddy. I find that complicates my hearing a great deal. Sometimes I wish that ear was totally deaf so I could focus better on what's being heard by my other ear.

    Meanwhile, my right ear, which was previously almost perfect, has begun making its own noises. I have tinnitus now in both ears, although the hearing on the right still tests very well. But I've realized recently that I'm having more difficulty understanding what people say, including my husband.

    Most of the time he's very understanding and cooperative, but now and then he can be impatient if he's taken by surprise by my lack of hearing or flawed balance. It can be very depressing all the way around. I have to turn my head so that my good ear is facing him if I want to hear him at all, and this means I'm missing a lot of what he says if I'm not in the right position.

    But yes, overall, I agree: Voice recognition is a huge problem. Like you, I'm very, very frustrated.

  3. I, too, have much hearing loss in my left ear which is most affected by the MD. So far I have avoided hearing aid(s). I have had the tinnitus for many, many years in the left and it is now beginning in the right ear. My balance is really off and I have trouble at work using my computer screens as I have to input numbers, etc. and the head motion can really drive me crazy - really bad nausea. Also, I cannot drive on the interstate. When driving, side boundaries seem to affect me. I am blessed at this point though that I am still working and driving.

    Please tell me which surgeries have worked best and what types of hearing aids are best for this condition.

    I have had the MD for many, many years - probably well before it was even suspected. However, mine has not (thank goodness) progressed too fast.

    I really enjoy this blog, as it makes me feel connected to people that understand my woes with this disease.

  4. I did try a hearing aid that was supposed to be very good, was programmable for different situations (outdoors, crowded rooms, phone) but proved not to be very helpful. I really wish I had never shelled out the $2k for that thing. I'm very, very disappointed.

    I've only had one surgery, the labyrinthectomy, so I have nothing to compare it to. It worked, insofar as I haven't had a full-blown attack of vertigo/nausea, but I have chronic dizziness now and occasional bouts of mild vertigo. My balance is pretty badly compromised, too.

  5. Interesting Post. Just being back from seeing Dr Desmond. and undergoing some test that revealed whaty was sususpected. MD in my right ear. I have had hearing loss since 98. It started in the left MD. Verigo, and the ringing in the ear. Most of that ended in around 2001 when I put in a hearing aid I had about 60 Db loss. The left has advanced to 90 db loss and held steady since 2003 or so. Around 2009 I started noticing fluctuations in my right ear. Up and down, good days, weeks. Then some bad. Finaly I purchased new aids in 2010, 8 grand for the pair. They are by Widex and have a Zen function. You can still hear people talk and the zen tones help calm the ringing.
    Now my right ear is causing the effects of MD. I have had several bouts of vertigo this year. Most from onset to full recovery within about 4 hours.
    I refuse to let this win. I work full time and am a active ultra runner.
    As for the voice recognition issue. I even with aids need to focus on who is talking. Accents are imposible in croud situations. On a bad day forgetabout it.
    I do recomend for anyone with loss find a local hearing center. Someone who sells quality hearing aids. I have to go in and have my adjusted monthly based on my quality of hearing.
    This also may help. I have given up gluten and it has helped. No I also stopped my miltivitimin the same day. I am starting one that is gluten free so i hope this continues to help. I have also found when I push myself to sleep deprivation and too much running and working. I have bad hearing days.

    Good luck to all, stay centered.

  6. Interesting, about cutting out gluten. Has anyone else tried that? I've thought about dropping gluten for other health reasons, but never considered a link to Meniere's. I'll have to do some research on that.

    Stay centered. Hah. That's going to be my new mantra. :)

  7. hello peggy
    giving up gluten and being on a low histamine diet have helped me hugely. you really have to try it. if i keep to these diets the fullness and deafness are kept to a minimum.

  8. I've never heard of a low-histamine diet. What does that involve??

  9. hello peggy
    check this site out

  10. low-histamine diet seems interesting. It makes sense. I had an attack this week. I ate a package of sweedish fish candy, and downed about 1/2 bottle of Gatorade. Now for the real stupid part. I was driving on a winding mountain road. Through dappled sunlight and down switchbacks dropping 1000 ft in less than a mile. Ear pressure changes. When i stoped I could not focus or walk. No vertigo just off balance.


  11. I have done some research on low-histamine diets, and it looks like a HUGE amount of foods that I would have to eliminate. I can certainly try to work toward it, but it's going to take time to learn how to re-work my diet to get rid of ALL of those items. Phew.

  12. Hi Peggy,
    I hadn't heard about it either I'll have to look into it.

  13. There's something here that I find confusing.

    When doctors recommend Betaserc, they are recommending something that mimics histamines. Yes, I've looked it up, and a friend who has a PhD in pharmacology looked it up, and that's what Serc does.

    So isn't this a contradiction? Why would Serc work for people by putting simulated histamines in their system, while other people benefit from eating a histamine-free diet???

    This is yet another anomaly of Meniere's. I don't get it at all.

  14. I don't get it either...Menieres can be such a contradiction depending on the person who has it. There's no all for one, one for all with this disease.
    One thing I've noticed though is that many (outside the U.S. since we can't get it here)
    seem to have found some relief using Serc.
    The compounded form that we can get here doesn't seem to get the same rave reviews.
    I'd really like to try Serc.
    If anyone knows how to get it (the actual Serc) let me know.

  15. hello
    lauri you are right for everyone its a different journey in relation to menieres, we all have different triggers, but one thing i think we all have in common is the fluctating hearing loss.
    in reference to serc thats a very good argument put forward regarding histamines.
    i take serc, but have found some of the foods containing high levels of histamines can make me deaf for up to 2 months, (especially oranges, cheese, some fish etc).
    i think the histamines within serc may not trigger the same reaction as some of the histamines in food.
    i have had 8 years of menieres, and i am always challanging my doctors. I am in a much better place through changes i have made in exercise (used to be a bodybuilder, all i do now is cycling and swimming, low impact) and diet (allergies and intolerences, constantly challanging my diet and keeping my sinuses clear). i am going for stelroid injections next month and i hope that will be the last piece of the puzzle for me.

  16. Lauri, there are websites that sell the real Serc that's available in Europe, but you don't know what you are getting when you buy from them. I wish I could figure out how to be sure of a safe online source.

    I was one of the unlucky few who had an allergic reaction to the compounded Serc we get in the US. I started having terrible asthma attacks and had to quit taking it. Ridiculous.

    I guess the bottom line is for every patient to keep trying different remedies, and as Ali said, challenging their doctors to "think outside the box." This malady seems to call for endless creativity and patience to find what works for YOU.

    As a side note, my application for Social Security Disability is getting interesting. I am going next week for a meeting with a psychologist they want to evaluate my "mental state," and my lawyers and I are filling out questionnaires about my daily activities, work history, and so on. My husband is going to fill out a third-party report on my daily activities and abilities, which should be interesting.

    I wish I knew that there might be light at the end of the tunnel.

  17. Peggy~You go girl!
    I wonder if depression works in your favor with SSD or not?
    At some point we all go through a faze of it, some worse than others, but I recently spoke with a fellow Menieres sufferer who was VERY depressed, and she is also trying for SSD.
    What worries me is how a Psychologist can adequately evaluate a Menieres patient, when they can't really begin to understand what all
    we are going through.
    Boggles the mind.
    I'm hoping for great results for u!

  18. My lawyer tells me there are some standardized questions they ask that are supposed to help them determine level of functionality, related to memory, processing information, solving problems, etc. That part I will (unfortunately) pass with flying colors. But they also talk to you to get an image of your emotional state.

    I think depression is actually considered to be a crucial element of Meniere's disability. My impression is that being depressed will help my case; which is fortunate, because I'm most definitely depressed.

    But we'll see what happens next week. Eek.

  19. Well, I had the interview today, and it was uneventful. The questions were very simple, geared toward finding out if my brain still functions pretty normally, which it does. I didn't have any trouble telling him what date it is, who the president is, counting backward from 20, or spelling "world" backwards. I also told him what I would wish for if a genie were to grant me three wishes.

    Seriously? This is the kind of thing Social Security needs to know before it decides whether I should get disability?

    I was surprised by the content of the session. It seemed pointless to me, and irrelevant to Meniere's. But it's done now, and once my husband has filled out another form on my day-to-day activities, we will go back to waiting.

    It infuriates me that this is all to get money that is mine, since I've been paying it into the system for 33 years. Grrrrrrrrr......

  20. My interview with the Psychologist I felt went well could be more because of the agoraphobia I also have but he seemed to actually understand my new fears (falling, stairs, public attack, driving,etc that relates more to MD) He flat out out said he felt there was no work I could do outside the home & there was no reason to attempt training for another type of work. quote " Ma'am I'm deeply sorry for your conditions & regret to inform you there are no legitimate work at home businesses so unless you're excellent at the sewing you once enjoyed & have enough good days to complete an ensemble there's no way you can have any source of income" This man actually helped me down the flight of stairs from his office ! Needless to say if he took my insurance I would love to see him. He had me very relaxed & comfortable & for once I felt I had a professional on my side.

    My appointment with the regular MD I felt went badly he looked like a hobo MR Rogers not a doc for starters & never would speak up when asked & of course I offended him cause I did hear him say tell me about MD, so I assume he has no clue what it is & begin to tell him only to finally hear him loud & clear madly say " I KNOW WHAT MD IS I want to know what Your Problem is! Oops that'll be 1 bad report sent in I'm sure.

    As for the ten dozen papers I've had to fill out just for SS Wow seriously folks how can I describe my day when its different depending on rather I have an attack or how bad the fullness is or the sound studio is playing on any given day. Yeah I have I strict routine almost to the point of OCD like most all of us do but that doesn't mean we actually do it 365 days a year. Argh these folks are stressing me so badly..

  21. Hi Mrs tater,
    I'm glad that the visit to the Pscyh. went well it sounded like he understood your situation pretty good.
    As for your doctor it sounds like he is a real jerk! I would look for a new Doc.

    The whole ss process can be terribly stressful what with all the paperwork but hopefully it will work out. I am still waiting to hear about mine. (I was rejected originally)

    thanks for the comment