An update from a long time sufferer for those stuggling

Discussion in 'Your Living Room' started by mrdizzy, May 7, 2014.

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  1. mrdizzy

    mrdizzy New Member

    For those of you that done know me I have been on here for quite awhile. I dont post much anymore but I still try to every now and then. First a little background for those that dont know me. I am 49 yrs old. I was diagnosed when I was around 20 at the Mayo Clinic in Minnesota. My attacks were very episodic in nature for the first decade with attacks coming in clusters and lasting perhaps a week or two then going into long remissions. Once in my middle 30s things went south quickly. I was having daily attacks some lasting for 4 or 5 days at a crack. My hearing was dropping like a rock and I was unable to continue working. Once my usable hearing was gone I had a Laby. Getting used to being completely deaf was difficult and so was the recovery. I forced myself to walk everyday. I did yoga and I used to WII balance almost obsessively. I got my life back and was symptom free for about 4 or 5 wonderful years.

    Then all hell broke loose, again. The attacks were worse than the first ear. They were more severe, lasted longer and fucked me up beyond comprehension. I was depressed. I was pissed. I was sad and lastly I was fucking scared shitless because I was going deaf and my world was shrinking everyday and there was nothing I could do about it. I tried everything to try and come up with a trigger. I charted my diet, I tried accupunture, Nucca, JOH you name it I tried it plus some crazy osteopath shit that about killed me! I found nothing to help and nothing to indicate how or when an attack was coming. I had drop attacks, I broke bones from falling. I ended up in the ER 8 times in 7 months from dehydration. I was suicidal. My marriage fell apart. I lost my home. I almost lost my business but my brother kept me in, god bless him. I wore a hearing aid and it helped for a few years. I was living in Hell but I somehow managed to make it.

    4 years ago I finally qualified for a Cochlear Implant. I went through the process got approved and set a surgery date. I researched the 3 major CI brands and made my decision on which one I wanted. 2 days later I got an email that the manufacturer I had selected had just went under a voluntary FDA recall. The fucking rug was pulled out from under me again!! Making the decision on which implant is going inside your head is a big one. Its not like a car that you can trade in in a few years. This thing is going to be inside me forever. I decided to wait the recall out. I was convinced that Advanced Bionics was that much better. It was a year before they came back on the market.

    The day finally came and I got my implant. I waited 4 weeks for activaiton. The minute it was on I could understand speech and my life was given back to me. I had made it through hell and was on my way back up, I thought.... Shortly after my first implant my attacks began to subside, I had officially burned out, I had almost no vestibular response so the rotational vertigo was over but then I had severe balance issues. Osillopsia was horrific. My ENT classified my as a Vestibular Cripple. I thought the Vertigo attacks where bad, but no this was even worse because I never got a break. I couldnt walk a straight line, any head movement made me ill. I refused to give in. I started yoga again. I started WII again. I walked, I fell. I ran into shit and I got better, slowly very slowly. Cripple was not in my vocabulary and I took it as a challenge and I won.

    2 months ago I received my second CI. I am working again. I am living again. I am dating again and I have my life back. And I can hear again.

    I just wanted to share this for those of you that may be going through some tough times. My hope is that my story will give you hope. That you too will fight this beast and not let it beat you. I did it and so can you. Dont give up. Accept that your going to have bad days, bad months fuck even bad years. But know this, it will end, how is up to you, either you fight it or you give up, I chose to fight!! Good luck in your fight.

  2. Intrepid

    Intrepid New Member

    What an inspiring post :)

    You've always been a tough one, Greg.
  3. bulldogs

    bulldogs New Member

    Greg, thank You!

    This post should be moved to success stories.

    You are a hero to many!

  4. Philosopher

    Philosopher New Member

    God bless you Greg! We need more stories like these!
  5. Angelea

    Angelea New Member


    I've thought about you many times these past few years and wondered how you were doing. I am so happy to hear that you've come through it and made it to the other side! Congratulations on getting your life back! I hope you have many, many years of good health now.

  6. GLA

    GLA New Member

    Thanks for sharing your story, mrdizzy. I'm glad to hear that things seem to have turned the corner for you.
  7. CarolineJ.

    CarolineJ. New Member

    Thanks for the update Greg :)
  8. buglady

    buglady New Member

    Greg, you have given many of us hope. Thank you for that.

  9. Papajoe

    Papajoe Myco-dental Freak of Nature

  10. Joanne5170

    Joanne5170 New Member

    Thanks for sharing

  11. msprygada

    msprygada New Member

    Well...yes and no.

    Yes I am glad that Greg persevered over this nasty disease. But no I would like to NOT see people get this bad.

    Good for you Greg.
  12. Chinook

    Chinook New Member

    It's always uplifting to hear a success story. How great for you! Thank you for sharing.
  13. Philosopher

    Philosopher New Member

    My reference to "needing more stories like this" pertains to Greg's constant perseverance despite horrific physical symptoms. Despite his symptoms being much, much worse than the average person with Meniere's, he never gave up nor did he get on the pity party train. Instead, he led the "I will never give up" rocket ship!

    Again, well done Greg!!!
  14. redwing1951

    redwing1951 New Member

    Your attitude made your life whole again. Big big lesson for all. Great post thanks for sharing.
  15. burd

    burd New Member

    Your fight is inspirational Greg, always has been. Your story will help those that are stumbling through their own personal hells. Your story gives hope. :)
  16. CarolineJ.

    CarolineJ. New Member

    burd!! Hey ... nice to see you pop your head in :)
  17. Vicki615

    Vicki615 New Member

    Wonderful success story! Thank you for sharing it and you are an inspiration!
  18. burd

    burd New Member

    :) :) Thank you.

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