Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Dear Carolyn, Having an attack of Meniere's is about the scariest thing I have ever been through. Its worse than being told I had CML. Every time I moved, I was dizzy and I never knew when it would return. Some people have had to have surgery, but they lost their hearing in the ear that was operated on. Those fuzzy little hairs in your ears touch each other in all that fluid and it nauseates you. After a month when I was well enough to go out, I had to walk next to a wall, or I would lose my equilibrium. The doctor wanted me to walk with a cane, but I was only in my 20's, so I wasn't ready for that. That was about 50 years ago. The doctors all told me it would never go away, so I dreaded it like the plague. It never came back like the first time, but I have had it several times, but it was only temporary. I would walk around with my head on a pillow to be sure I didn't move my head's position. Did I read that right, a 5 log reduction???? Wow, I didn't know you could go past 4, so you are doing great after 2 1/2 years. Good luck and you go, girl. I'd be on a pogo stick yelling YIPEE!!!!!!!!!!!!!!!!!!! It's success stories like that that gives us turtles hope. I was on 20 mg. Sprycel, because the higher doses gave me pleual and pericardial effusions, so they put me in another trial called SKI 606. If there is anyone else on SKI 606, would you please write so we can exchange information on how we are reacting? I know there is one in this group, but I have forgotten who it was. Please contact me if you are on SKI 606. When I tell my doctors I am on SKI 606, they look strange, they never heard of it. Best wishes, Lottie Quote Link to comment Share on other sites More sharing options...
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