Sufferer’s Stories

 ELIZABETH B.

Elizabeth_B“I’m 18 and completing year 12. I was diagnosed with Meniere’s Disease at 13. The last 5 years have been exhausting, physically and emotionally for me and my family. In year 7, I tried to explain to my friends about the condition.

Growing up, I found it all very difficult to deal with because I felt that people never really understood, making me feel very isolated. Teachers did not appreciate that my eyes are affected and I was unable to read for periods of time.

During year 11, I missed 2 months of school. I was unable to play sport because I struggled to track the movement of the ball. The uncertainty of the attacks made me fearful of socialising because of my concern I could have an attack anywhere and nobody would be able to help me.

Nobody could ‘turn down the volume’ of my tinnitus while I was lying in bed angry and upset, trying to get to sleep. I always questioned why “what have I done to deserve this?”

CHRIS W.

Chris_WI’m a 67 year old farmer from Mudgee in Central West New South Wales. I have just had treatment of last resort for Meniere’s Disease — a labyrinthectomy that destroys completely any hearing or balance left in the ear.

My experience with Meniere’s goes back to my twenties. I would suffer giddy periods, sometimes with vomiting. It was not until 25 years ago I felt the full impact of Meniere’s. One moment I would be fine, the next moment I would be unable to stand, vomiting, with my head spinning uncontrollably.

These attacks could last up to 12 hours and I would stagger outside, clutching a bowl to lie across the front seat of my Kingswood so I was outside in the open air while this misery was occurring. After about 6 months of these attacks, and with medication not stopping them, I had an operation to place a small drainage tube into the sac of the inner ear to try to drain the excess build up.

When I was first diagnosed decades ago, I was told, reassuringly, the disease was not life threatening! As it progressed I almost wished it was, since when full blown, Meniere’s leaves you with no life. Devastating attacks can come out of the blue with no forewarning. I am hopeful I can lead the remainder of my life free of further Meniere’s symptoms but always lurking in the back of my mind is the possibility of contracting Meniere’s in my other ear. It’s horrifying as this disease knows no restriction on when or whom it can affect. 

DENISE B.

Denise_VAt 18 I began to have periodic attacks of vertigo, vomiting and nausea. I would go to my GP and he would give me stemetil saying you will be fine in a week.

I married at 27 and over the next 8 years these attacks became more frequent. To add to my distress I had tinnitus and I was unable to cope with day to day routine and often housebound for days.

In 1982, I was referred to an Ear Nose and Throat specialist who told me I had Meniere’s Disease caused by an imbalance of fluid in one or both ears.

I had a labyrinthectomy (nerve section) resulting in complete loss of hearing in my right ear and I was able to get on with life for the next 10 years before the disease became bilateral in 1993 and the attacks returned.

A cross bar hearing aid had been fitted for my left ear in March 1994. With deteriorating hearing in my left ear, in 2004 a bone anchored hearing aid, was fitted and I found this helped me in noisy environments.

VERN H.

Vern_HA “Drop Attack” comes on suddenly without warning. My first drop attack was in Melbourne airport. I was the only person going up a long travelator with a brief case in one hand, pulling a small suit case on wheels and carrying an overcoat. I felt well, had had a good, busy day.

Instantaneously I was flat on my back, feet up the hill, with my hand injured and bleeding in the fall. My world was tumbling, like being dumped in the surf.

The jumble of bags, overcoat and my feet uphill caused passers going down the other travelator to shout “Do you need help?” “Yes” I shouted. They stopped the travelator. When helped to my feet, I was able to stand and walk with help. This was the worst of 7 dangerous drop attacks but they were less interruptive than the long running vomiting of the normal attacks. I was afraid to go out of the house, but did with mobile contact with my wife. What if it happened while on a railway platform or driving?

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