Thank you to all who have replied.
I am blessed with an employer who is standing way back out of the way while I battle with this health disorder. Oh I am sure that eventually I will have to try to go back to work or quit, but for now they are not pressureing me to hurry up. My health care costs are paid for by Blue Cross Blue Shield Insurance ( l live in the States) and so far they have paid over $20,000 for doctors and all of the various tests and diagnostics, but it seems like all of the Doctors involved are looking for the preverbial silver bullet, something to be revealed by tests, rather than by knowledge of the situation. Not once has anyone ever mentioned that it might be a virus, and to date no one has prescribed antibiotics for it.
My original refferal to an ENT was to rule out BPPV. At the ENT office they flipped me around on a table and told me to go home without leaning over or turning my head and to stay upright for 24 hours. That was supposed to put a "calcium crystal" back into place. It made no difference. Then the ENT did a lot of tests on my ears with video cameras aimed at my eyes to track eye movement. They blew hot air than cold air into both of my ears. Next they put head phones on me and sent sounds like rapping or knocking into my ears alternately for 20 minutes at a time. Finally they did a simple hearing test which I failed miserably in my left ear. At that time they decided I had the symtoms of Ménière's. IN MY LEFT EAR .
Well, no one listened to me when I told them that my left ear has been subjected to loud noise at work for the last 35 years. I knew full well that I couldn't hear as well out of it. But I could hear them and I seem to do ok listening to anything I want to. They didn't pay any attention to me when I told them that I had a fullness in my RIGHT EAR, that my RIGHT EAR felt like it was burning and itched way down deep and that no amount of scratching or pulling or wiggling my ear helped stop the itch. Finally, in the notes to my GP no one mentioned that when it first happened I was seeing double, it was as if I never told them, but I did. I told them that I could not focus both of my eyes on the same thing, and to watch TV I had to cover one eye. They seem to disregard my input and keep using all their "big guns" to find the answer.
I have told all of the doctors that I had just finished doing a period of 9 years working from Midnight to morning, and made sure they understood that I may have a body circadian issue, but it is not keeping me from sleeping. But they all seem to think everyone needs to sleep at night and a lot of hours uninteruped.
Next, my Neurologist asked me to have a sleep study done, which if you ask me is unrevealing because those people see everyone as having "sleep apnea" to some degree, and indeed I was diagnosed with a pretty bad case of sleep apnea. I told them that I sleep a lot, and when ever I want, and I do not feel that tired. I sleep in one to 2 hour intervals, day or night, because I do not work right now. I am under no pressure to sleep in a hurry and get back to work or anywhere else for that matter. Again they are looking for the "silver bullet" and got me a cpap machine and told me to start sleeping with it. So far it hasn't helped either. I do feel more rested using it, but the feeling that I can not concentrate is still there.
Currently I am getting Physical Therapy to try to lesson the effects on my feeling of well being. The therapy is aimed at desensitizing me to the feeling of disorientation and drunkeness. I honestly believe the PT people are going through motions that are normally done to patients that do indeed have BPPV. Occaisionally they put me though a manover that brings on a rush of the feeling of instability, but it is always on the RIGHT EAR side. The left ear manovers don't do anything.
I feel like no one is hearing me. My next ENT office visit is a week away. I am going to try to make them hear that my RIGHT EAR is the one that occaisionally feels full and hot and painful, and the moves at PT for RIGHT EAR BPPV sometimes make me dizzy, but I have doubts if they will listen.
I find solice in them doing all of the scans and telling me that it is not from a stroke or tumor, so I don't get the panic attack that I read so many have. I simply tell myself that for the moment I am out of control, but it will come back eventually and hopefullly through internet education and forums like this one I will find out what is really going on. My thanks to Al Gore for inventing the internet!
Thank you
Ben