I'm not writing this so you'll feel sorry for me, I'm keeping this for reference and to track my progress which won't be much.
Symptoms- I have a number of them and at different times throughout the last 13 or so years it has been different. At one time I would get dizzy spells, example during high school I would be walking with friends and dizziness would hit me. I'd have to stop for a few seconds and let it pass then I would be ok. Also I would get dizzy spells when I was laying down in bed, but I noticed that happening more when I was exhausted. My main concern has been for as long as I can remember. My eyes don't focus on an object fast enough, for instance I will be riding on a 4-wheeler, it gets pretty bumpy, my vision can't focus on that tree up ahead and have it be still, the tree and everything around it moves with the 4-wheeler, up and down my vizion goes with it. I haven't been able to focus, same goes for dirving in a car, and running, when I run everything bounces up and down the way my body goes. It stinks but I've gotten used to it. It was the dizzy spells that scared me the most. A couple of years back they came back with a vengence and more often, I could never perdict when the dizziness would hit, what scared me the most was often I was driving on the freeway going from Mesquite or from St. George, 80 miles an hour and I wold get a dizzy spell somehow I managed to stay safe, those episodes told me it was time to get checked out. I did MRI's CAT scans and the doctor said I was fine, yea ok. but I never went to get a second opinion, chalk that up to my stubborness. A little while later I thought I'd go get my eyes checked, and nope nothing out of the ordinary there. So for the past 4 years year I gave up and dealt with it. Thankfully after having Alexis I stopped having the dizzy spells during the day, but I still had that motion problem.
So 3 weeks ago I took my son to the ear, nose, and throat doctor here in town to get his nose cauterized. I overheard a paitent talking to the receptionist about a hearing and vision balance test, I thought it wouldn't hurt to get one. Yesterday I took the test, I told the doctor all my symptons, we started with a hearing test, I passed with flying colors, then I took a vision test, I passed with flying colors. The next test checked my inner ear, I laid down turned my head to one side while air was blowing in my ear, the doctor said after a few seconds I should start to get dizzy, for me nothing, 30 seconds of nothing, then he checked my other and the same, nothing. Then he tried it with warm air and nothing in both ears. By now he was so giddy with excitement he told me he knows what my problem is he has never seen it in the 7 years he's been working he has only studied it during school. He told me my problem is 1 in a 1000. So here is my diagnosis...
I have Vertigo(which I already knew), and Oscillopsia. My Vestibular ocular reflex is not working which means I have no inner ear function(in both ears). We have three functions to keep us balanced, our inner ear, our vision and our joints, well I have only 2 of the 3 working, I rely solely on my vision and joints to keep me balanced. The doctor said since I have no inner ear I should be walking with a cane or walking along walls. The doctor is really surprised how well my other two balance functions have overcompensated. As he said this I told him I will be getting on my knees and thanking the Lord, he knew I still needed to function what with four kids and all, I'm greatfull to know he is there and helps me when I need him.
Now here is the worse news unfortunatly there is no cure, yipee for me, NOT. I get to start physical therapy soon to teach me how to handle my balance, and in the long run (when I get old and decrepid). So sorry for the sad news, but yes, I am so happy to know what is wrong with me I'm glad to have a name with it and to learn how to make my life a little better. Too bad I won't be able to ride the 4-wheeler on the sand dunes, I guess that's good news for me, Lance won't have to buy me a 4-wheeler and gear, that saved me a couple thousand dollars! Thanks for reading and don't feel sorry for me, I've lived with this for the last 13 years, I can live with it for many more years to come.