Vesties’ Village

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(@ralimubarak70)
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Joined: 2 years ago
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Hello all. I'm 52 yrs old, mother of 4 daughters, Gigi to 1 grandson, and a widow. I have Meniere's Disease with tinnitus, vertigo, and hearing loss. I have a history of hemiplegic hemorrhagic migraines and a suspicion of Vestibular Migraine. I have intermittent deafness when my ears completely clogged up. I do wear bilateral hearing aids but they are not always useful. Started VRT 19 April with mixed results, because I also under went Vestibular testing on 27 April and 2 May, testing the left ear made me nauseous, dizzy/ with vertigo, unable to speak/ read/ write/ drive, and incredibly cold. I have a history stumbles and balance issues, but this past Saturday was the first time I actually fell down. I did notget hurt but it was very unsettling,  because I was standing up one second, and the next I was facing the sky. It was as if the world judt filled upside down ... At this point I am not at all sure what the future holds for me. 

This topic was modified 2 years ago by RashidaA

   
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 Nise
(@nise)
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This made me sad! I’m so sorry that happened to you. I also have had those sudden collapses caused by sudden spinning for few seconds then it’s gone. I thank God I was near my bed each time it occurred. I hope you didn’t hurt yourself when you fell. I have almost fallen several times trying to simply walk around. Very scary! 


   
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(@amblake)
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Vestibular Neuritis – Angela’s Story

Sometimes our fears can keep us stuck in places we know are not where we want to be.  April 25, 2015, I feel to the ground in my back yard initially was told I had viretgo.  It was supposed to be a quick fix with some medication.  Eight hours later and many test doctors are still unable to explain what happened to me.  I was unable to sit up, roll over, move my head, walk, my vision and speech was impaired.  I could not hold anything, feed myself, brush my teeth, my cognitive processing was slow.  I was unable to drive.  The doctors and neurologist were stunned by a MRI that showed some of the white matter in my brain had been altered but there was no explanation of why.

After an overnight observation admission to the hospital turning into six days later; I was being discharged to a rehab hospital with no diagnosis. 

In the rehab hospital after less than three days they were planning my discharge to a nursing home.  I was told that I was permanently disabled and would live in a wheel chair.  I was apparently to disabled to live alone with two dogs. 

Taken back by the discharged plan and the idea of being permanently disabled; I quickly rolled myself out of the room and asked to use a computer.  I felt this situation at least warranted a second opinion.  All I could see is my life ending as I knew it.  Never getting to do all the things I wanted to do; never reaching my goals and dreams.  As fearful as I was I was just as determined to get my life back. 

After many hours on the computer struggling to see the words; I came across a vestibular clinic at Johns Hopkins.  I rolled my wheel chair down the hall and requested to have the social worker make a referral.  After the referral was made the social worker informed me that it could take a week or two to hear back from them.  I promptly asked her to wheel me out side and dial my phone to the vestibular clinic.  They answered in second ring and an appointment was set up for two days later. 

After arriving to Johns Hopkins and many tests later it was found that my right vestibular nerve died.  Which completely shut down all functioning on the right side of my body.  The doctor said that in fact I was disabled and he could only recommend a specialized physical therapy; vestibular physical therapy.  He did not know the level of recover but he gave me hope.  That’s all I needed; just hope.  I decided that no matter what would come my way that I was putting in my mind that I could handle any challenge.

After a week at vestibular physical therapy I did not see much improvement.  I decided to rehab myself using the vestibular physical therapy at home six to eight hours a day.  I used the exercises and related them to real life activities and did them over and over every day, six to eight hours a day for seven and a half months.  I added meditation, journaling and positive affirmations to my routine.  Each week I went back to physical therapy the improvement was off the charts.   The doctor at Johns Hopkins was impressed.  And frankly, so was I. 

I was able to start back working part-time and shortly after I was able to go back to work full-time.  Eventually I was able to drive. 

Now, not fearing anything, I have gone parasailing, took a trip to Florida via air plane, traveled to New York, swim, enjoy Zumba, bike ride, garden, walk my dogs, go to the beach, and anything else I want to do.  Even entering and finishing metric sixty-three-mile bike ride in the Sea Gull Century!!!   It was a very proud moment for me.   I still have balance checks from time to time; but there is nothing I can’t do.  From being told I was going to live my life in a wheel chair to being fully functioning and living fearlessly……. 

 

https://www.youtube.com/watch?v=ZtCLU-TPz3E

 

www.vestibular.org

 

Seven years latter there have been some set backs but over all I'm still going strong and doing all I can to have a full life. 

 

 

 

 

 

 

   
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