The reason I am disabled: Meniere's Disease

Discussion in 'Et Cetera, Et Cetera' started by MidwestGal, Nov 18, 2006.

  1. MidwestGal

    MidwestGal Member

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    I keep getting asked why I am disabled. Maybe this will clear it up for some. Feel free to ask questions. I am always happy to provide some education.

    For those that don't know Meniere's Disease is a disease of the inner ear. It causes too much fluid build up and that affects balance and hearing.

    I was diagnosed with Meniere's Disease last December. Six years after I made my own self diagnosis. Yeah, i am great at stumping the doctors. This disease has been a nightmare and has disabled me to the point I may never be able to work a normal job again. I have lost two awesome jobs to this disease.

    Meniere's affects my daily life. I am constantly dizzy, falling down, bruised up to the point I look abused. My attacks cause me to be bedridden. I throw up for hours on end, many times ending up in the ER to get IV fluids. I have a constant ringing in my ears plus it sounds like a fire alarm is going off in my ears at all times. I have a 80% hearing loss in my right ear and 30% in my left year. My hearing is constantly fluctuating.

    I often get asked how it feels. I have constant pain in my ears, fullness, popping, and annoying ringing that keeps me up at night. When I have an attack it feels like I have the flu and spin like on the tilt a whirl. I typically lose 25-30 lbs in 2-3 days when I am having an attack. I can't walk let alone drive. I get totally helpless and at the mercy of the disease.

    I happen to fall in the 10% that has bilateral Meniere's Disease. I have it in both ears. I will continue to lose my hearing until the disease takes all or most of it. I read lips a lot of times. I plan on learning sign language in the next year or so.

    Unless you live with this disease you have no right judging whether I am disabled or not. Three doctors refuse to sign off on me returning to work. Believe me, I would much rather be working than filing for disability at 31!

    Here is a link to a great page about Meniere's Disease. Meniere's Page - Symptoms

    I am just trying to educate people on "hidden" illnesses. Yes, I may look normal but my insides are screwed up. I am not complaining, this is just something I live with and deal with.

    As for treatments. I failed all of the conventional treatments such as diet modification and medications. I had surgery on both ears in April. I have a $4,000 device that pulls fluid off of my ears several times a day. Yet, i still have 3-6 attacks a month plus many little spells of dizziness. I hope one day they find some way to help those who live with Meniere's Disease before we all lose our hearing.

    Thanks for reading. I hope you learned something!
     
  2. dannymawg

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    Very brave of you to post that here. Have to admit I wasn't aware of this malady and I did learn something.

    I wish you the best in your battle.
     
  3. JustAsking

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    Oh man, I read the link you provided. This really sucks bigtime, gal! Of all the things that can go wrong with the human body, this one really sucks. I can see why it is misunderstood and underestimated in its power to devastate one's life. I cannot imagine anything more torturous than the vertigo thing.

    What is it like between attacks. Are you ok at that time? Or do you have some low level symptoms constantly?
     
  4. MidwestGal

    MidwestGal Member

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    It really varies. Most of the time I am okay. I almost always have some feeling of unsteadiness and always ringing and fluctuation of hearing. I have no depth perception below my waist. Basically I can't tell where my feet are at all.I have a horrible time on steps.
     
  5. mephistopheles

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    It's a horrible disease, I know someone else who has it.

    But disabled or not, you're one sexy gal!:biggrin1:
     
  6. MASSIVEPKGO_CHUCK

    MASSIVEPKGO_CHUCK Well-Known Member

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    Dig it there, thatgal, you are smokin! And disease or no to boot. :wink:
     
  7. MidwestGal

    MidwestGal Member

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    aw thanks!
     
  8. ClaireTalon

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    I had someone on a crew who started showing symptoms of Meniere's Disease, however he doesn't suffer as extremely as you. He started with light hearing loss, then periodic vertigo/dizziness added. Of course Meniere was about the last thing he had thought about, especially since the disease was completely unknown to me and to him until then. However, after the diagnosis, he got his discharge because he was no longer capable of performing his duties, and retired into civil life. However, he is only suffering in a mild way, and is still working, the symptoms don't appear in such drastic ways with him.
     
  9. ruffboy

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    good luck in dealing with it thatgal and so glad to see you're still celebrating other wonderful aspects of your body, that's a gift and thanks for sharing ;-)
     
  10. D_Sheffield Thongbynder

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    Knowing a couple others who have Meniere's, I have a good idea of what your life is like. No easy words to convey my feelings. Thanks for sharing. John
     
  11. MidwestGal

    MidwestGal Member

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  12. BuddyBoy

    BuddyBoy Member

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    Alan Shepard, the first American in space, also suffered from Meniere's, which kept him off the flight rotation for years after his first flight.

    He did undergo experimental surgery in the late 60s which cleared it up and he went on to become the fifth man to walk on the moon as commander of Apollo 14.
     
  13. Heather LouAnna

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    I derno what's wrong with my ears... :T It's just the right one, really. I had chronic ear infections as a child, first of all. I had tubes too. When I cover my left ear, everything sounds muffled in my right. I constantly having popping and throughout the day, I can feel pressure changes regularly that make me dizzy. My right ear feels like I can never pop it. Over the years, I've passed out in various places (sitting and standing). I've hit my head several times awhile passing out. When I fly in planes, drive up hills, or go three feet under water, I get these staggering headaches. I never ever ever ever get headaches normally...ever. I told my doc about it and she gave me nasal spray..........which so far hasn't done anything. My father's almost completely deaf in his right ear.

    I should really go to a specialist. ;)
     
  14. Heather LouAnna

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    Holy shit. I just read that link. :confused: I'm gonna call and make a doctor's appointment.

    Thankyou for posting this. :(
     
  15. baseball99

    baseball99 New Member

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    I have seen Meniere's disease a few times. Its really frustrating for the patients and a lot of people think they are making it up. I give you a lot of credit for dealing with it the way you do. Best of luck
     
  16. MonsterUncut

    MonsterUncut Active Member

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    I have a much more mild case of Meniere's. Only recently did I have my first "spins" attack. Luckily, I was seated, the room just started spinning, like I was in a tornado, nauseous, then an extreme head ache. I've had the ringing in my ears most all my life, 24/7 most times an unbearable ear piercing high frequency sound. Just last week, I started on Lipo Flavenoids, a supplement that's suppose to increase the blood flow to the inner ear. From what I've researched, this supplement has dramatically decreased the ringing in some patients. Only thing is, it's not cheap, but at this point, I'm willing to try most anything. My best to you Gal, my thoughts are with you.

    Peace
     
  17. MidwestGal

    MidwestGal Member

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    actually my diagnosis was just recently changed to Vestibular Migraines......not much different for symtoms BUT no permanant hearing loss. I see the neurologist today and will find where to go from there. But after 8 years of dizziness I am glad to have an answer.
     
  18. Osiris

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    My wife is going through some of the symptoms described as Meniere's and honestly, I'm a bit terrified. She had an MRI and they ruled out tumors, but they still have no clue what is causing her problem. I'll share this with her and pray it isn't anything as serious as Meniere's

    Thank you for posting this. It provided some insight that may help our family out.

    Bless you milady.
     
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