Support for living with Meniere s
Meniere's disease sufferers Tricia Young and Ken Felton.

Much-needed support for people living with Meniere's disease, an at-times crippling condition that can cause episodes of acute dizziness, hearing loss and tinnitus, will be rolled out across WA over the next two years.

Meniere's Australia will use a Lotterywest grant to establish a Statewide network of volunteer-run support groups to provide advice about diagnosis and treatment options.

Ken Felton's introduction to Meniere's came without warning.

In June last year, he was at a business meeting in a city cafe when he suddenly felt like the whole building was rocking and he was going to fall off his chair.

His world continued to spin for 40 minutes before he was able eventually to make his way home.

The now 62-year-old suffered similar episodes intermittently for some time until, one night, he woke in a pool of perspiration to severe vertigo, diarrhoea, breathing difficulty and muscle contractions in his hands and feet.

He was rushed to Fremantle Hospital where doctors thought he was having a heart attack.

That was soon ruled out and, following a referral to an ear, nose and throat specialist, he was diagnosed with Meniere's disease, which Mr Felton said was a shock.

"It was the fear of the unknown because I had never heard of the word Meniere's," he said.

He was scared of how he was going to cope and did not know where to go for advice until he discovered Meniere's Australia.

The self-confessed gym junkie, who is also a keen swimmer and golfer, said he had to change his already healthy diet quite significantly, cutting his salt intake to no more than 1200mg per day.

The normal daily recommended salt intake is no more than 2300mg for adults.

He has also cut down on caffeine, alcohol and chocolate, which are also thought to contribute to bringing on acute attacks.

Mr Felton said despite this, attacks were continuing and were, in fact, getting worse. He has also lost 50 per cent of hearing in his left ear.

"I'm a really active person and I love life and I'm determined not to let this thing beat me," he said.

"I deal with the attacks when they come and I'm usually washed out for two to three days afterwards but then I get back to dealing with my life and enjoying life."

The condition is little understood in the wider community, according to Meniere's Australia WA co-ordinator Tricia Young.

Many people mistakenly believed it was an old person's disease when in fact it could strike anyone.

She was aware of teenagers who had been diagnosed.

A former nurse, Ms Young was eventually diagnosed with Meniere's after a number of "dizzy attacks", starting in 1991.

She managed the condition up until May 2008 when she had a severe attack which set off 15 months of "absolute hell" which included numerous hospital admissions.

"I was at the stage where I was going to sell my home and move into a nursing home, I couldn't be left on my own," she said.

But gradually, with support from Meniere's Australia and the diagnosis and treatment of a secondary inner-ear disorder known as benign paroxysmal positional vertigo, she regained control over her life.

Frustrating for many sufferers is the fact that there is no known cause or a single treatment for Meniere's disease.

Ear Science Institute Australia director Marcus Atlas said the condition was precipitated by raised water pressure in the inner ear, a symptom called endolymphatic hydrops, but what caused the raised pressure was little understood.

"There are a lot of research avenues to work out why it happens and it is probably a combination perhaps of viral or hormonal abnormalities that trigger a change in inner-ear function and raised pressure, but exactly why that happens and if the immune system is also involved is not known," Professor Atlas said.

"When you don't know the underlying cause, it is hard to devise a specific treatment and that is why there is this range of treatment options."

Professor Atlas said lifestyle change, including reducing salt in the diet and minimising anxiety, was the first line of preventive treatment.

"It can be a terribly disabling disorder, precipitating a lot of stress and anxiety which goes on to be a vicious circle of further precipitation of acute attacks," he said.

Drugs including Stemetil, Valium and Phenergan can be used to treat an acute attack, while diuretics, a vasodilator drug called Serc and a device which applies pressure to the inner ear via a grommet tube in the ear canal are used to help prevent attacks with varying success.

In some cases, drug and surgical options are used to destroy balance cells in the inner ear to stop it sending impulses to the brain that are associated with the dizziness.

Professor Atlas said research was under way locally, using the Busselton Health Study, investigating the incidence of Meniere's disease, how the condition progressed and its impact on hearing.

The research will also look at possible genetic links with other disorders.

The West Australian

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