Saturday, November 21, 2009

Menieres Disease

When  was diagnosed with Menieres Disease back in the late 70"s.  There was no information anywhere.  Now there is plenty on-line.  Regretablly, they are just as far from finding a way to prevent or arrest it and it appears to be a cluster of  symptoms.  From what I read on the web people remain in a superstitious round of searches for a "cure".  I found relief from vertigo by taking SERC a drug you have to have compounded in the USA, if you do not have the sense to go to Canada Pharmacy.  Now I found a young ENT guy in my little Texas town who specializes in the dizzies.  He knows all about Menieres.  He also put me on 16mg a twice a day of SERC as it has a short life in the body.  I had me on 24mg once a day.  Well lets face it back in the mid 90's when I research friend put me onto the Bandolier sight no US ENT admitted to knowing about SERC.  Since I have had the disease for over 30 years it has now entered a final stage where the tinnitus will not go away.  I just completed a chart of my Herpes outbreaks as I am convinced that is the source of  my disease.  And online I did notice no mentioned if they had chickenpox as a child.  I had a terrible case at age 3 and i am convinced this little pox is the source of my menieres.   Every time i have a herpes outbreak the tinnitus gets worse.  I have had at least one herpes outbreak a month since May.  This return of herpes all started with my second Breast Cancer in 2006.  In fact after each fill in the reconstruction phase of my mastectomy, I had a herpes outbreak.  But somehow when your fighting BC everything else takes a back seat.  So why this post well i want to document the whole shebang.  Dr. B is trying to control the symptoms of Menieres, a first for me.  Over the past 30 years I had one 10 year free run and then Meniere's  returned.  my hearing has fluctuated as have the pressure, fullness, brain fog.  AT least SERC enabled me to live without fear of vertigo and paying homage to the porcelain god.   Now I move on and will begin to look at hearing aid.  At least ear buds help me to enjoy TV and drown out the roaring.

Hearing aid and devises are somewhere in the dark ages of electronics.  I bought a Pocket Talker in 2006.  next to iPhone, ipods and even my T-mobile cell it is clunky and the headphones belong in a museum but the clever designer used a connector that is different to all the new headphones so I'm stuck.  It actually works better on the phone than as a listening device.   So that's todays grip.  Today I can hear the TV without the hook ups but cannot trust what I hear!.  OH yes all those great HDTVs with digital everything have terrible speakers.   Chris fixed up the headphones through all the audio equipment and was so impressed with the sound quality he made it so we both have headphones and hand signal to each other.

1 comment:

  1. My friend's husband has Menieres. I don't know much about his treatment, but I know that he was laid flat when he had attacks, the vertigo came from just moving his head the smallest amount. I heard he cut out coffee and alcohol and salt from his diet, not sure what else he has done. What a debillitating disease! Hope your journey through Mineares is hassle free as possible.

    Love the picture of you and your husband with headphones in front of the TV communicating in sign language!!!! hehehe!!!

    Leanne (New Zealand)

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Thanks for stopping by,wish we could chat over a glass of wine and chocolate.