Hi everyone, My name is Jeff...I am new here and badly need any and all help I can get. I have searched the forum for a problem similar to mine but did not have any luck, so hear it goes (no pun intended).

Heres my story...

I am completely deaf in my right ear and have roughly 60% of my hearing left in my left ear (I have a HF loss). I had many ear infections growing up (along with surgeries) and the Dr's are unsure if I lost my hearing due to that or if I was born that way.

Over the past ten years or so my hearing has fluctuated in my left ear on a somewhat regular basis. At first the Dr's would put me on Prednisone, that would help, but it was not the cure since thay would continue to fluctuate once the medication stopped. I have also been to an Arthritis clinic (ENT reccommendation) to "posibly" treat me for an auto-immune deficiency (sp?), I was put on Methotrexate there...that didn't seem to work so I stopped going. I have seen many ENT doctors but none seem to have any answers.

I honestly have no clue to what is happening but I THINK it is related to strenous activities since it SEEMS to happen shortly after I "push" myself physically at times. I have heard that head trauma can cause ear problems and shortly before all this started happening I broke my nose severly playing base ball (ball off bat into my face). Could that be causing this?

My main reason for posting here is I am out of ideas and at the end of my emotional rope. I am only 29 and this is completely destroying my life. If anyone has any ideas i would really appreciate hearing them!

Thanks from the bottom of my heart.

...Jeff

I am not sure what you are really looking for here. You have had a known loss for years and it fluctuates. Since they are unable to find a specific thing to treat it then why not get a hearing aid if it is recommended and get on with your life and enjoy what hearing you do have left. I have been hearing impaired since I was a kid d/t excess fluid in my ears as a result of the measles. Antibiotics and surgeries did not relieve it so I have worn aids for years. I have also had surgery to replace the bones in my right ear twice as an adult that worked well at first but then stopped working. Needless to say my life goes on and I live it to the fullest and I think this is what you need to do.

Thanks for your reply. What I am looking for is a reason my ear is doing this. When I feel 100% I can hear very well, but whenever I exurt myself it drops way down and takes days/weeks for it to come back. If this happened every so often I guess I wouldn't mind...but it happens just as soon as it gets better...it is a never ending cycle. I am just looking for answers/causes/ideas on how to stop what is happening and have a normal and stable life. A hearing aid would help, but it will still keep on doing what it is doing. I would also be happy just knowing what is going on, a cure would be nice, but not knowing is driving me nuts as well.

...Jeff

Hi Jeff,

You've probably seen a couple of posts on this board mentioning tempero mandibular joint disorder. The only reason I mention this is because of the blow to the nose/face and also that you mention it comes on after activity which could imply a muscular component to the fluctuations in hearing in one ear.

Then again, I am thrown by the fact that you had multiple infections/surgeries as a child which seems to point heavily in that direction.

Do you have any other physical symptoms in your jaw/neck/face/back, other than the hearing loss? Often symptoms that seem unrelated to your ears can be a big pointer as to what is going on.

hbep, thanks for chiming in. http://www.healthboards.com/ubb/smile.gif

Yes, I had many problems as a child, but as you well know children are hard to diagnos and often times don't tell you when something is bothering them until it is too late.

I'll make a long story short...

When I turned 16 (13 years ago) I got a job at a large retailer as a stock boy. I worked my butt off for almost two years and in doing so was very active and lifted alot of things. If my memory serves me correct, after I broke my nose when I was 17/18 I started having these hearing fluctuation episodes. The Dr's didn't know why so they put me on heavy doses of Prednisone. Well after years of this I had enough and so did the doctor. He (the doc) then referred me to a Arthritis doctor who weaned me off that horrible drug and put me on Methotrexate to treat what he was speculating was an auto-immune problem. Well it got me off the prednisone and my hearing stabilized somewhat, but I still had occasional episodes. Well after about two years of being on this medication I quit going to the Dr and quit taking the drugs...and I was the same as i was for two more years as I was when i was on the methotrexate. Now about a year ago or so the episodes seemed to be happening more frequently and as of late they have been getting worse and staying around longer.

I just don't know what to do.

Today I called up my ENT and spoke with the nurse who then spoke with the doctor. The nurse called back and the doctor put me on a small dose of Prednisone (7 day) and scheduled me to come in on the 30th of June. His explaination was i might have a swollen inner ear which usually provokes and infection.

Hopefully the medicine will help and get me to the 30th. Bu this is a "band-aid" fix in my eyes and doesn't solve the main problem...just hides it temporarily.

As far as other conditions go, today my jaw feels like I have been grinding my teeth all day long...but I do not normally feel this way. My back is fine as well as everything else.

Could it be something to do with my eyes or teeth? I know it sounds crazy but I have heard of stranger things.

Oh, I also saw a chiropractor on Monday and was tested for food allergies (already saw a regular allergist one week prior and everything came back negative). Dairy, MSG, and nutrisweet all came back positive...so i am on a three week diet from the three things...trying to see if they could be causing all this.

Thanks for listening everyone, please chime in if you have ANY ideas...I greatly appreciate any and all input.

...Jeff

Dear Jeff

I would like to help you although I am not a doctor. First of all you haven't told us what type of hearing loss you have. Is it conductive, sensorineural or mixed?
Conductive hearing loss is often reversible with surgery or medication depending on the cause of it but sensorineural loss is not reversible. Cochlear implants is an option for people with nerve loss.
So you can ask your doctor what he suggests for you.
As for the cause of hearing loss it is not known it can be hereditary (are there other hearing impaired people in your family?) or due to exposure to noise, infections, ototoxic drugs and so on.

I hope that this helps. Sometimes people are not responding because they do not know what to say. I have been asking some questions on this board too and only one person has responded.

Good luck to you.

Cora, thanks.

My loss is sensorineural, there is nothing they can do to restore the lost hearing...and I am fine with that since it has been that way my whole life (or at least as far back as I can remember). I just want to maintain what I still have and not lose anymore. There is only one other person in our family that has a hearing loss (one of my first cousins...I have 5), everybody else is fine. Hope this helps explain things better.

-Jeff

You mentioned that the problems started when you broke your nose so be sure the doc is aware of this. Yes this fluctation could be related to your jaw as in TMJ problems etc. Have you had your dentist check for any problems? Mention all of this to the ENT doc when you see him if you haven't already done so.

Jeff,

This is very easy for me to say (especially at your age) but you must adjust to your new lifestyle (at least for the moment). In reading your post, it appears that you are an active person. At this point, consider walking vs. running or other physical exertion. I have problems associated with ETD (which have changed my life) and deal with this issue all the time (as I am in very good shape despite my ongoing problems).

Control what you can control. In other words, if physical exertion triggers the problem; stop and rethink your methods towards your activities.

Take care,

Paul

Paul, yes I am active, but not anywhere near what I used to be. I get these episodes no matter what I do, even mowing the lawn and working up a sweat makes my head/ears feel goofy. In fact it seems to be happening so often I have no way to tell 100% what is causing all this. I believe it is the activity because nothing else makes sense. I run this whole situation thru my head all day everyday, trying to figure out what it could be...but nothing has helped soo far or even made sense.

Here are the steps I have taken...

1. Numerous ENT doctors
2. Arthritis Dr. (auto-immune?)
3. Allergist (everything came back negative)
4. Chiropractor (cracked my neck and tested me for food allergies)

The Chiropractor said I had a reaction to Dairy, MSG, and nutrisweet. I am now on a diet free of those three things starting 4 days ago...have not noticed any results as of yet. I atempted to call my dentist today but they were closed, I'll call back Monday.

The TMJ suggestion now has me confused. Over the last couple days my jaw has been sore/tender and my face feels slightly swollen. Could I be clinching my teeth/jaw muscles or something without noticing it...is that a symptom of TMJ?

Sorry If I have been rambling, but I have already gotten more advice here it seems than all my other Dr. visits. What would you folks suggest be my next steps? I do not want to accept my body doing this...it is not normal and is really hard to deal with. It just doesn't make sense that some days I am just fine while others I am totally opposite...there must be a cause somewhere, I just want to know what it is and possibly find the answer.

Thanks again everyone, and please keep the suggestions coming...I take all them very seriously and hopefully something will click.

...Jeff

Hi Jeff
I just read your post and thought I should reply since I have experienced hearing loss and fluctuating hearing that is autoimmune in origin. It's a difficult thing for doctors to diagnose but there are some tests that can give some indication. There's a blood test called HSP70 that if positive, is a fair indication that you have an autoimmune problem going on. The problem with this test is that it's not very sensitive and a negative result does not mean that you don't have an autoimmune problem. There are other more generalised blood tests like ESR that can indicate that there's an imflammatory response in your body, but again these are not conclusive.
The sort of treatments I know about for autoimmune hearing problems are the ones you've tried and as you know, being on high dose prednisone is not a long term solution due to the serious side effects. However, leaving autoimmune hearing problems untreated does not have a good prognosis at all. I have found getting injections of steroid into my ear the most helpful by far. I've posted about this on other boards (inner ear and rare diseases and maybe on this one)if you want to read a bit more.
By the way, I too got an increased stuffy/pressure feeling in my head and ears whenever exerting myself.
I know you said you've already seen lots of ENTs but it sounds like you need to find a really good doc who will really try to find the cause of your problems.

Dear Jeff
I would like to preserve what is left of my hearing too. But I am not sure if there is anything that can stop the process of hearing loss whether it is sensorineural or conductive. My doctor suggested vitamins A&E to preserve the nerve function. I am not sure that it will work but I am giving it a try.
If you find out anything else please let me know.
About your fluctuating hearing I would like to ask you a question. Has it been verified by audiograms? Because I also have the feeling that I am hearing better at times but all my audiagrams come out the same.
Cora.

Hi Jeff,

You said 'The TMJ suggestion now has me confused. Over the last couple days my jaw has been sore/tender and my face feels slightly swollen. Could I be clinching my teeth/jaw muscles or something without noticing it...is that a symptom of TMJ?

In a nutshell, yes these are symptoms of tmjd, and yes you could be clenching your teeth or grinding them without noticing as many people only do this at night, but obviously suffer the resulting discomfort during the day. You would need to see someone v. specialised in the diagnosis of tmjd to find out if you have it. Regular dentists are not required to do further training in this area to qualify. If you want to check it out ask about specialist near you on the tmjd board. People with tmjd often star out with ear symptoms and progress to jaw symptoms. I am not suggesting this is definitely the answer to your problems, I am no expert on hearing loss, and there are clearly other possiblities, but when you mention jaw pain it made me think it was worth mentioning this again, seems you have nothing to lose by having someone check you for tmjd.