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Re: 5 years of living hell

Re: 5 years of living hell

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Posted by Cindy Fowler on November 18, 2000 at 02:05:10:

In Reply to: 5 years of living hell posted by Bernard on November 17, 2000 at 10:54:57:

hi benard,
first off i am so sorry to hear what you are going
through, your words jumped right of the screen to me,i am struggling with it all myself right
now, and BOY are you right about the docs, what
a damn RUN around,i was handed alot of the same drugs, which were NO help for me either, and alot of "you dont look dizzy" "can't seem to find a reason your dizzy" i had ONE ENT squirt water in my ear to get the wax out, and comes to find out i Have a hole in my eardrum!!! which you are suppose to get NO water in it at all!! took seeing two different ENT's to find the HOLE in the first place!!!..so that was a nice two week infection with PAIN, with the umteen phone calls to his UNCARING office.....i have found that being dizzy for the past two years, you really really need to
see a neuro-otologist if you haven't already, they specialize in dizziness and inner ear disorders, my experience
has shown ENT are not too knowledgable in dizzyness at all, not sure what part of the
country you live in, but i know here in Portland
oregon, there are three of the best in country,
i went to a dr.black, for the first time the other day, MAN how refreshing to work with someone
that actually understands!! and hopefully he can
diagnos me, and treat me finally!!first visit he ordered a zillion tests for me to take next week, i been dizzy 24/7 NEVER get a break from it and due to this illness i am bedridden most days, i go from the bed to couch, i used to work and be an active person i feel i am now held hostage to this unnamed illness, unless i pop a valuim which cuts the edge off somewhat, but its a band-aid and a trap in my opinion, but somedays i need it just to get around my house
NO ONE should have to suffer like this its 2000
i mean the are doing surgury IN-vitro, sending
people to space,, but can't find a cure for us,
WE NEED more good doctors to study this,
i have some great sites and belong to a dizzinews email group, alot of great info and support,and lead you to a neuro-otologist in your area, and there is a doc in the group that emails alot, if you want to join let me know i will email you the link...
HANG IN THERE, prayers are with you!!!
cindy fowler
a friend in oregon...

: Always remember: doctors can be very stupid people too.
: Five years ago I had a sinus infection/flu. It lasted three weeks. I thought I was going to die. I called my
: ENT from my deathbed and told him so. He said: "you'll have to tough it out. It's not life threatening."
: The doctor had me on some mild decongestant and primitive penicillin which I knew wasn't working.
: I should have realized something was wrong with him then.
: After the infection and other symptoms left, I was left dizzy, disoriented, and unable to walk straight. I called
: the ENT again who said: "it's common. It'll go away." I really should have realized something was wrong with
: him then.
: Four weeks later, it was worse than ever. Everything rocked left-right, up-down, although no rotary vertigo. Stupid me
: called the ENT again. He said: "You'll have to take antivertigo medications" and he put me on betahistine,
: Dramamine, cyclizine, Valium. I was stoned constantly and spaced out.
: A month later I had sought help from another ENT who taught me head exercises to "get the blood flowing",
: put me on Sibelium (a calcium channel blocker which seems to have some use in vertigo cases), Vasterel (a vasodilator),
: and Duxaril (a French antihypoxic drug used to increase oxygen supply to the blood). No use.
: I went back to the first ENT who told me "There's something wrong with your ears." (No crap Sherlock).
: He then said "you'll soon get ringing in your ears from the viral infection". (Great, something to look forward to).
: It was up and down like that for the last five years, it got better for awhile til about a month ago, when I suddenly
: lost most of my hearing in my left ear. By now I have tried every antivertigo medication known to man, tried
: rounds and rounds of Valium, Xanax, Atarax, Ativan, Klonopin, etc etc.
: Just spent a week in the hospital getting MRI, CT, ENG, PTA, Tymp Test, ABR, Blood tests done. Audiometry
: shows 80% hearing loss left ear. There is constant humming, ringing and I can hear blood flowing thru my left
: inner ear. I get percussive sounds in my left ear when i plug the canal and release.
: Am still dizzy, spaced out, ataxic, disoriented, antisocial, depressed. The latest doctor put me on
: prednisolone, Sibelium and another French drug called Vadilex, a vasodilator. Feel worse than ever.
: After all those tests, he tells me i have some dysfunction in my left ear. Wow. I'm glad he spent 10
: years at school to be able to do that.
: Been away from work for two weeks. I am a network news anchor and my job requires a hell of a lot of alertness.
: After the last show I did I broke down in front of the entire newsroom bawling my head off in frustration.
: This has been hell on earth. Over the years I have lost most of my friends who couldn't figure out why I was so moody and testy despite
: looking fine on the outside. I avoid almost all social engagements, which is not good for someone who does what I do.
: I am preparing to relinquish my executive management duties because I have become the irritable boss from hell.
: My poor lovely young wife has been watching all this, unable to help.
: The next step: if this doesnt get better, I am going to proceed with selective destruction of the left labrynth
: with gentamicin or even consider having a nerve section to kill the left side off once and for all.
: The doctors have been a major disappointment.
: At each turn, they've been telling I think too much and shouldn't worry about my problem and it will go away.
: Isn't it amazing how if THEY can't help you, it's YOUR CRAZY MIND and not their incompetence?
: I wish all of them could experience this for just a week to see what it's like, and maybe then, they wouldn't
: tell people with our problems to "not think about it"

: Bernard




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