My Meniere's story

How about some music?

Well, you asked for it, so here's my story;

Ever since I was 18(in 1971), I would have these occasional attacks of lightheadedness, and feeling I was going to pass out. I was scared to death! Of course the doctors said it was "anxiety" or hyperventilation. Sure, if you are scared enough, you will have anxiety and maybe hyperventilate.

This happened maybe 10 or 12 times in the next ten years.

I started having tinnitus(ringing in ears) in 1981. I didn't do too well on my annual hearing test at work.

I was having episodes of lightheadedness, and feeling "strange". When I went to an ENT, he said it was very typical of Meniere's, and gave me bellergal. A month or so later, I was still having the lightheadedness episodes. The ENT said, "There's nothing wrong with you, you'll be fine!"

A few weeks later I had a terrible vertigo attack, that lasted about a day and a half. I was sick for about a week. Everything sounded like I was inside a tin can. I went to my family doctor, and he gave me antibiotics.

It finally went away. The dizziness got worse, and at times I would feel sick all over. My family doctor tried, antivert, Bellergal S, and it went away for a while. But always came back.

I saw another ENT around 1983. She did allergy testing and I received weekly injections. Not much help. She did an ENG, and sent me to a neurologist because it showed both balance systems not working too well. All the brain tests came out normal.

She had me try dramamine. Felt better for a while. Symptoms would come and go.

Tried 2mg of valium. Felt good for a few months. Sick again. I began wondering if this was all in my head. Was I subconsciously bring this illness on to miss work or escape responsibility? I would feel so good for months or weeks, then without warning, I was really sick again! My remission periods gradually became shorter and shorter.

This went on till 1987, when I saw a neuro-otologist, Bradley Thedinger. Dr. Thedinger actually believed everything I told him. I felt so good about that! He tried several treatments, that seemed to help for a while, but maybe it was just the attacks coming and going on their own.

I missed so much work, everyone there thought I was just screwing off! Many friends and relatives did too!

I went through several weeks of vestibular physical therapy. I was able to return to work for a few months.

Finally Dr Thedinger decided to do a mastoid decompression operation. This allowed any excess inner ear fluid or pressure to vent. I felt pretty good for about 4 years. The body's ability to heal is your worse enemy on this type of procedure. The inner ear sac tries to heal over and form scar tissue.

More problems in 1992 and a subarachanoid shunt operation gave me 2 more years. After much more testing and evaluation, I took a disability retirement from my job of 23 years.My balance system has been damaged quite a bit.

The financial and emotional problems this can bring, can ony be understood by someone who has experienced it! Although my problem was mostly on the right side, the left is also affected, so that ruled out a nerve section or gentamycin type treatment.

It also would not help the terrible pressure or loud tinnitus. The loud tinnitus can affect the lymbic brain regions, causing grouchiness, and feeling like you could just scream, or run your head into a wall! I notice my powers of concentration, slowly fading,also.

The only thing that helps is 5mg of Valium, and it is no cure. I cope by taking life a day at a time. I can't do what I used to, but most days I can still walk for 30 min. I do some yard work and car maintainence. Of course I have to take a lot of rest breaks. But I still feel very lucky. It is still good to be alive. If I concentrate on living, and taking care of my family, the tinnitus sort of fades into the background. When I'm feeling really bad, I lie down and my wife doesn't ask anything of me.

She is so good to me! I also recommend a pet. We have a little rat terrier named Chip. He is so loyal and loving. He knows when I'm having a bad day, and stays with me most of the time. Makes a big difference. A good dog doesn't ask you for anything. He only wants your love and attention. And he gives you back, far more than you could ever give, in return.

Meniere's has taught me, the importance of the little things in life. My life is one big thing, that is made up of many many little things. And I intend to live it to the fullest. Some days I really have to force myself to get up out of bed. When I do, I always feel better, after a while. If I lie around too much, I really start to feel bad!

It is all worth it! I hope my story may help someone that is feeling really bad, mentally and physically.

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