Tuesday, February 2, 2010

Meniere's disease and Vestibular Disorder

I'm a first time blogger and asked my daughter to set up a BLOG for me in the hopes of finding someone who understands or has any information that can help. Almost three years ago I was diagnosed with Vestibular Ocular Reflex Disorder / Meniere's Disease. I would love to hear from anyone who suffers from either of these. I am unable to drive anymore and the fact that we live in a rural area I am pretty isolated. There is so much of the disease I don't understand yet and any information any one has would be so greatly appreciated. I haven't been able to determine what brings on the attacks of Meniere's and the drop attacks are getting not only old but a little scary, I don't bounce as well as I used to! :) I have Vertigo every day and have since I had my first attack in Sept 2007, it varies in degree from slightly to so severe I can't move. The weird part ( well for me anyway ) is that I only spin to the right and only the right side of me spins. I feel like I have a divider straight down the middle of my body and the right and left side are fighting each other. When I have a migraine, it's only on the left side of my head, I taste things differently on the left and right side of my tongue, I smell differently from each nostril. When I go to a neurologist and they do tests both sides of my body work the same physically, it just doesn't seem to be. The doctor's look at me like I'm crazy...one doctor will tell me to push through it without any medication and I'll be better in six months...I made it 3 months and had migraines almost daily with increased vertigo during that three months. Another Doctor will tell me to take the medications daily and limit my activity, I'm sure the migraines could have been attributed to withdrawl from the medication, although I am very careful with my dosage. I ended up basically in bed for the three months I didn't take any medication and when i limit my activity and take the medication I have a good day and bad days that put me to bed. A lot of activity around me puts me into sensory overload and basically one day of over activity around me puts me out for a few days. So I am just really coming back from Thanksgiving, Christmas, New Years, and three birthdays between New Year's Eve and Jan 9. My memory stinks, my "now" memory ( as someone told me it was called), is the worst, my family are so wonderful they answer my questions over and over again without much complaint, my grandchildren, however; aren't always as understanding! My 4 year old grandson can become pretty irritated with Grandma when I forget how to put on his gloves and what foot his shoes go on , My poor family are so wonderful and they answer my same questions over and over again even when it is stupid as "Did I just go to the restroom?" My ex husband jokes that he wishes I had these memory problems when we were married!!! I haven't worked for almost three years and my jobs for the past 25 years have always consisted of detailed work, like accounting, a/p, a/r, p/r, inventory, reconciliations...now I have troubled reading an article and following it's meaning, even helping my 5th grade grandson with his homework is outside of my realm, he just tested in the top 5 percent of the 5th graders in the US, so it's becoming a bummer that he is smarter than grandma. I try to read and continue to learn at least one new thing a day, the new stuff doesn't always stick with me which is why I have so much trouble with research.

Well, this BLOG went on a lot longer than I had planned, but if anyone reads this and has any information I would love the help.