If you know me personally, you know that I am usually a terribly private person, especially when it comes to my problems. However, since I’ve become very ill in public twice now, and since I now have a diagnosis, I want to share it with you. It might just be information that can save you some big problems.
I’ll start at the end, and that is that I now have a diagnosis: Permanent Labyrinthitis. All this means is that the balancing part of my left inner ear has died, and that is why I’ve had the terrible struggle with not being able to walk, be in large busy rooms, etc. without stumbling or feeling very sick.
Unfortunately, what might have been fixed (and maybe not) had I known what to do in time is forever gone…that is the bad news. The good news is that the right side will eventually realize that the left side is gone and begin to compensate. It’s a long process, but the doctor assures me that this will happen. (The third month should show big improvement.)
What I want to share with you is that I believe there were signs that this was coming that I did not realize, and the truth is, had I understood the signs, I would not have known to go to an ear center because I didn’t even know there was something beyond the ENT (and I did not go there) office. Believe me, I do now!
A couple of years ago, I began to struggle with really being car sick if I was the passenger, even in the front seat. Poor Rickey and I dreaded going anywhere. Only if I was the driver could I manage, and sometimes that was tough. We blamed it on a new vehicle that seemed to ride a little rougher than most.
The really strange thing was that I actually could endure the ride in the backseat better than in the front, and this is never the case with someone who fights being car sick.
I also began to notice that I was just a little disoriented in large places like a large department store or mall. It was nothing I could actually put my finger on, but “things” just felt a little different, maybe even just a little foggy, for lack of a better word.
It never occured to me to seek a doctor for any of this, and the truth is, I’m tired of telling doctors strange symptoms and seeing “the look.” If you’ve been there, you know exactly what I mean, I know! (Remember, my now paralyzed vocal cord was deemed “in my mind” by my former ENT until it was too late.)
Since I had no idea that any of this could have anything to do with an ear that has never even had an ache, I would have had no way to know that I should seek the advice of a doctor in an ear center and remember, I had never heard of an ear center. (And…we could be wrong about these connections, but we don’t think so.)
So…one day a little over a month ago I simply stood up and fell when the floor wasn’t where it was supposed to be. The world was spinning violently, and there was no way I could stand again. According to the senior Dr. Owens at the Owens Ear Center in Dallas, Texas, this is the way Labyrinthitis always hits. (I cannot speak highly enough of this place or the doctor, by the way.)
Obviously, when this type of thing happens we are almost always confused into thinking that this episode is what most of us just call “inner ear,” which it is…and it isn’t.
The way to know (according to the doctor) the difference is that with Labyrinthitis you never get completely well after an episode…at least not for months. You will have a violent episode, and you may get better in that the world quits whirling so violently, but you don’t get over the dizziness in a few days as you do with a normal episode with the inner ear.
My suggestion is that to be on the safe side should this happen to you, get to the people who KNOW. Thankfully, I have a wonderful ENT in Dallas, and when I finally called that office, he was honest enough to tell me that I did not need his office, that I needed an ear center that could actually do the correct testing.
The testing takes at least two hours. It’s not a lot of fun, but it’s not nearly as bad as I was expecting. Eventually, they will blow cold air (for one minute) into one ear and then the other. Next, they will repeat the process with hot air.
In my case, both of these in my right ear made the world whirl badly as showed up on the computer to which I was hooked. Neither bothered me at all in my left ear so the next step was to pour ice water into the left ear (for one minute) to see if it would stimulate. I certainly felt this, but it did not make the world whirl at all.
The printouts from this and many other tests showed that there is simply no function to the balancing portion of that left ear, and unfortunately, once it is completely dead, there never will be.
So what causes it? Usually a virus, but it can also be caused by bacteria or extreme stress.
So what do you do? I’m not sure there are a lot of ways to protect yourself, but here’s what I was told: lots of the B vitamins, watch the salt, limit caffeine, control your stress level.
Obviously, what I’ve written here is in very simple, layman’s terms since I only learned the word yesterday. However, several of you have told me that you are having a struggle, and I think it would be worth your time to at least consider being tested.
Dr. Owens did not tell me this, but from what little I have seen on the net, I do not believe that Labyrinthitis treated in time has to be a permanent condition, and since I was told that it would take about a year to feel completely normal again, visiting the ear center just might save you what could be a very long year!
Since I can’t seem to find anyone else’s personal story on the net, I am blogging my own for those who at some point get the same diagnosis. Next segment….