Bilateral Meniere's Syndrome since age 9, Formally diagnosed age 19

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Bilateral Meniere's Syndrome since age 9, Formally diagnosed age 19.   I am now 48.  I have been through over 20 specialists. I have lost all hearing in my left ear and have about 20% hearing in the right on a good day.  I wear hearing aids , Phonak Cross II.

 

I recently had an illness that appears to have damaged my hearing in my right ear (Good ear).  This appears to be ignored thus far. I was tested for AIED and tested positives however the results of these tests are currently in question.   I had an MRI done in the last 2 months, all normal.

 

In the last week  had a steroid injection in the right ear, to try to bring it under control. Thus far the effects or impact are unclear. I had been on my 4th round of oral prednisone.  It appears the oral prednisone has caused some health issues which I hope to address in the coming weeks.

 

My prognosis is poor.  I am being treated by one of the top 10 research physicians for disorders and diseases of the inner ear. Though I am nearly deaf on average and 100% deaf with hearing aids in the morning, I am told I am not a candidate for implants.

 

This appears odd to be in that I have spoken with people who have a single implant.

 

I am pushing for Bilateral implants. It is this or go deaf. My current doctor is VERY expensive however if implants are to be part of the solution it has to be with him.

 

I face a larger battle with insurance. They are now rejecting claims after they agreed to cover my hearing aids. I am battling this and will probably loose thousands in that battle. This is a good indication of what life will be like if I try to have implant surgery. I will probably have to loose my house in the process.

 

A word to the wise. Do not trust your health insurance company at all. They will lie to to you.

 

My symptoms started at age 9. Severe vertigo attacks, that my parents wrote off as anxiety. Eventually they believed me. Noises at night when I went to bed. Crunching noises in time with my pulse.

 

Eventually this all went away until age 19. I started having violent vertigo attacks and a low pitch roar in my left ear. The first doctor I saw , diagnosed me with Menieres. Standard battery, Diuretics, Prenisone and phenegran. This worked for a while but at 19 the attacks were episodic.

 

This dissipated and did not return until age 23. This time was far more violent. My anxiety level was very high. I had started drinking at age 15. By age 23 I was a moderate drinker. The next doctor I saw tried a lot of things. Histamine solution, and vasodiolators , namely Niacin. Niacin actually worked, ONCE then never again.

 

This doctor was focused on 2 areas. Allergies which we tested for, and Cholesterol. Neither had any impact what so ever. The attacks got worse and I ended up in the hospital over night a few times.

 

Eventually I would move again and cross paths with a very down to earth ENT who was very open minded. He helped me a and though he is a fantastic doctor and surgeon this disorder is just not his specialty. I have seen him for over 20 years and it is odd to be able to talk shop , to some extend with a doctor. He is very open to the research I bring in. He has in the last 5 years caught up with me though. He is usually aware of what I have now.

 

 

My hearing is going down hill. My health is not that great. I can still work. I can still drive. I have had to give up being a musician which is taken a lot of life out of me. I hope one day I will get some of that back. I am 48 so maybe...................

 

As for now I stopped drinking in 1999 it just got out of hand. I do take medications to control anxiety. The noise inside my head has come close to driving me mad. I do not have a lot of choices here.

 

I will update this more as my treatment continues.