Here we go again! Just been diagnosed with a new disease, another of which I had never heard of, let alone knew how to pronounce!
I am beginning to think that if there is a disease out there like the ones people don't know about, I am sure it picks me for some unknown reason! I mean, I think I have all the diseases I need for the time being.
Don't get me wrong, I am NOT feeling sorry for myself. It's just a bit ironic that whenever I get something new, it's always something hardly anyone knows about.
So since I have this, I thought I would share what I have been going through with it. Not every person has exactly the same symptoms, so it's possible that the way it affects me is totally different. This may be due to my having Lupus , I don't know.
Way back in 1983, I went in to the audiologist to get a new ear mold made for my hearing aid.
What they did was make a mold for my left ear first, (I wore the aid on my right ear.) Then they switched the aid to my left ear while waiting for the mold for the right ear.
About a week or so later, I went back to get the new mold. When they put it in my ear and turned it on, I just went nuts, telling them to take it out because it hurt so much. At first, they thought I meant that the mold itself hurt. I explained that it wasn't the mold, it was the noise! Every tiny noise felt as though it were coming out of a megaphone (like the ones the police use) and that the sounds all had a kind of hollow sound, even though I could hear the words, I couldn't stand the aid in that ear. Then they said it was that most likely, due to my lupus, (again) that my eardrum had become over
sensitive to sounds. Apparently this happens sometimes, so I wasn't to worry about it and just keep wearing the aid on my left ear. Ok I thought, they know what they are saying, so I went along with it.
Nothing more really happened for a long time. But I still couldn't stand even a whisper next to my right ear. It would just hurt so much that I would have to cover my ear.
About 1993, I started experiencing a different type of noise in my ear. It wasn't the normal tinnitus sounds that I get in my left ear. This was a loud clanging, like the sound of a gong being struck. I thought, great, now I have a little guy in my head doing a constant repeat of "The Gong Show"!!!!
And it hurt every time this happened. I began having major dizziness, which I blamed on my fibromyalgia, which is what the doctors said was causing it.
Then came the drunk feeling when I woke up. I would wake up, the clanging would get louder and louder, I would hold my hand against my head and use my other hand to hold the wall, stagger around like I had been on an all night drinking binge! (I don't drink.)
I could be sitting still in my chair watching television, and the room would start spinning. This started happening more often, like in a store, or in a car. It would make me nauseous, but never actually sick to the point of vomiting.
One day in 1995 we went to Silver Dollar City in Branson, Missouri. They have a house there that is all sloping floors, and my husband wanted to go in. I was feeling fine, so I said ok and went with him. We no sooner got inside, and I felt so dizzy I could hardly stand up! By the time we came out, my husband was practically holding me up just so I wouldn't fall. My legs felt they were just folding up beneath me. I started to get sick to my stomach, so we went and sat down and after awhile I was back to normal again.
About this time, I went to a new doctor. I told him all this, and that I kept worrying that if I ever hit a random drunk driving test, I would end up in jail because I couldn't even walk a straight line anymore, let alone touch my nose! He really said it was the fibromyalgia causing all this and put me on meclizine and 2 mgs of valium every night. It made a big difference! I felt really good again!
When we moved here to Missouri in 1999, I had to go to a new doctor. I was told that I really didn't need the valium, so they took me off it. Needless to say, the clanging and all that went with it was back big time!! Each time I went to the doctor, I was told it was the fibromayalgia.
Finally I asked for a referral to an Ear doctor for a hearing evaluation to get a new hearing aid. When I went in, she asked me all these questions, and had me walk a line, etc.. Of course I failed! She did some air tests in my ears, the left one was fine, but when she did the right ear, I jerked away and told her how much it hurt. I also gave her all the background info, and she said "You have meniere's!" She asked why I wasn't taking the valium and I told her what the doctors had said.
Well, needless to say, I left with a prescription. She said I have to take it.
So far, it seems to help once again. The clanging has slowed down and I don't feel drunk all the time anymore.
Like I said at the beginning, not everyone is affected the same way. This is just what happened to me.
Therefore, I have added some links that I hope you will check out. Maybe you will find something that can help you.