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Joy’s Story

Micky Sinopoli on July 6th, 2015

“You’ve got Benign Paroxysmal Positional Vertigo” I was told by a new GP at the medical centre. “Go home and do these exercises and you should feel better”. That was the start of 4 long years to a final diagnosis of my Meniere’s.

It all started however in 2008, not long after I had come back from an interstate trip. Whilst sitting in a café reading a magazine, my head started to spin. Frightened, and too embarrassed to tell the staff, I got myself to a standing position but then almost fell down the steps.  Using the wall for support, I staggered up the street.  I was fully aware I must have looked drunk. I got to my car and thought “I’ll just sit and see if it subsides”- it didn’t.  I just knew I had to get home, about 10 kms away.  I don’t know how I drove home, and now I realise I shouldn’t have; but I was frightened and just needed the security and safety of home. Home safely, I made it up the steps and into the bathroom, where I vomited several times. After sleeping it off, I thought that was the end of it, but it wasn’t to be.

In the meantime my brother was having his own battle unbeknownst to me.  Later on he would be a wealth of information, a good sounding board, and also the one I would turn to for advice. He had been diagnosed with Meniere’s, I just didn’t know it.  Initially my attacks were few and far between.  Sometimes I could overcome the head spinning by focusing on the wall straight ahead and not moving an inch. Those times were very rare though and would leave me washed out and quite fatigued.

At this stage my attacks were one or two a year, but as time went on they began to arrive more frequently.  I still thought I had Benign Paroxysmal Positional Vertigo, as that’s what I had been told.  People told me to try various things; I tried them all to no avail. The worst thing by far was not knowing where or when an attack would happen.  I became too scared to go too far by myself. A holiday spent with grandchildren in Gippsland, Victoria, right next to a wind farm, became a nightmare.  For three days I had shocking tinnitus which ended with a day of vomiting.

My world, I would come to learn, would be changed forever. In the meantime life went on.  I suffered several falls and now wonder if they were related to my balance problems.  I also had enormous stress in my life just prior to my diagnosis. I lost one of my brothers, to whom I was extremely close, to melanoma and then the loss of my mother. I began to wonder if these stressful events were a possible trigger to my attacks.  I knew full well any stressful event at the time left me ill.

Eventually my deteriorating condition led me to a new G.P. and referral to a wonderful Specialist. Straight away I was put on Serc with tremendous results; an M.R.I. was ordered as well as a cat scan. My Specialist agreed to my request to try a Grommet Insertion. I still have it in today and my brother has also had success with these.

Suddenly I became stable and there was hope. I have now been that way for 12 months, and best of all I have some sort of normality back. Last year I completed three fun runs. The Swiss Colour Run, The Mothers Day Classic, and a 5 km fun run. I finally had my diagnosis and the much needed help and information I needed.  I overhauled my diet, omitting as much salt as possible. I believe, for me, a combination of all these things has had a remarkable effect on my disorder. This year I have started Yoga and do as much as I feel comfortable.

I have been able to get my Meniere’s under control and do, what to most others, is the simplest of tasks – driving a car, running a household, being a grandmother. Just ordinary things really, made all the more extraordinary when you think you may never be able to do them again. I have always been a positive thinker and hope by telling my story I may be able to help someone else. I have found that if you eliminate stress as much as possible; get enough sleep and rest in general;  do whatever exercise you can manage (especially walking), all these things bring rejuvenation and peace of mind. So while the road ahead could be a little bumpy, a little rough and uncertain – in my heart at least, I am happy.

I would like to thank The Meniere’s Resource Centre and Equilibrium as I have found the information and stories of other peoples struggles invaluable and a comfort during this time. By sharing, we all help each other.

There’s an old saying …. Old age isn’t for sissies, well you can add Meniere’s as well.


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