Wednesday, August 28, 2013

Living with Meniere's... an on going story.

If you know anyone with Meniere's... this is a good read. Helps people that do not have it...learn about it. 

 I have had my Menieres for 32 year now.. or should say, it was when I had my first violent drop attack. Knowing what I know now... have had Meniere's longer than 32 years... but I figure I would start counting after that first scary, mind numbing attack.
Over the many years, I have been tested by two specialists.

 I have learned how to deal with it. Working outside of the house is impossible.   

It also makes it nearly impossible to make plans... as one never quite knows when a bad attack will come, though I now know the early warning signs. And adjust my day as needed.

Mostly keep mine some what under control with a low salt diet... means making most food, including bread, if I want to eat. And taking Meclizine when needed.
And drinking lots of no salt added water each day. 

It also makes you both deaf and hyper sensitive to noises.  I am totally deaf in my low to mid hearing on my right side.  What high end hearing I have is very distorted.
If someone opens a chip bag next to me,, sounds like a bomb has gone off and very painful.
Sounds people take as normal... can be unbearable for someone with Menieres.
The high and very loud non stop ringing in ones ears.... can be frustrating.

Also have trouble speaking some words.. and stutter now at times. 

It is impossible for me to walk into those big malls, because of the security systems and lighting. I end up with drop attacks.
Good thing I don't like s shopping.
(so far, I am ...for the most part... mostly ok in the small stores)
All part of the problems Meniere's throws at us.
Its not a deadly disease, but it is not an easy one to live with daily.

Am what they call, bi lateral... but it is much worse in my right ear. 
So surgery to take out my inner ear is not recommended. 
 However, those radical surgeries do not always work, then the person is worse off.
There is no cure and no one way to try to keep it mostly under control.

Few years ago, I join a couple of very good, online support groups. As you can imagine.. would be hard for people with Menieres to get together in person.
If someone has or thinks they have Meniere's, I would recommend they join these groups.

It is one of those unseen diseases......