Sunday 24 September 2017

'I was afraid to go outside in case I fell and people thought I was drunk': Irish woman's battle

Rita Power suffered attacks of pressure in the ears and vomiting for years brought on by Meniere's disease. But it was bouts of vertigo, which forced her to collapse on the ground, that changed her life forever. She tells our reporter how she overcame agoraphobia to tackle her illness

Rita Power, 63, was diagnosed with Meniere's disease in 1981. Photo: Colin O'Riordan
Rita Power, 63, was diagnosed with Meniere's disease in 1981. Photo: Colin O'Riordan

Áilín Quinlan

Imagine being afraid to leave home - not just because a massive vertigo attack may cause you to collapse on the street, but because you dread the vile abuse levelled at you by passers-by who think you're drunk.

It's happened many times to poet, singer and musician Rita Power - so much so that she developed agoraphobia.

Rita, now 63, has a condition called Meniere's disease, a disorder of the inner ear which causes a sensation of spinning (vertigo), and fluctuating hearing loss. The condition is also characterised by a progressive, ultimately permanent loss of hearing, ringing in the ear (tinnitus), and sometimes a feeling of fullness or pressure in the ear. In most cases, Meniere's disease affects only one ear.

Rita was in her 20s when she had her first attack, and, following numerous falls in public, gradually began to avoid going out at all:

"People think you're drunk when you fall down on the street, and instead of receiving help from passers-by, you're abused. People just stepped over me, thinking I was drunk," she recalls, adding how she would be vilified by "outraged" pedestrians for such "disgusting" behaviour.

"People were saying you are disgusting. It's very demoralising. I didn't want to go out," she says, adding that she eventually developed agoraphobia and had to see a therapist.

It all started very suddenly for the mother of three (now a grandmother of six) more than 30 years ago.

Then a young housewife with three small children - a six-month-old baby, a four-year-old and a five-year-old - Rita experienced what turned out to be the onset of Meniere's disease in August 1980.

"I went upstairs to get something and as I climbed the stairs I suddenly felt a huge pressure in both ears," she says.

"I went into the bedroom and the rooms started spinning around me very rapidly.

"I crawled back out and held on to the stair banisters," she recalls, adding that she slowly eased herself onto the floor and travelled down the stairs on her bum, step by step, not wanting to leave her baby alone downstairs for a moment longer.

Once at the bottom of the stairs, however, Rita felt so ill she began to vomit - the reaction was so strong she lost control of her bowels.

"The sheer strength of the vomiting brought on a bout of diarrhoea," she says, adding that she sent her five-year-old daughter Janine to run to a good neighbour who immediately hurried back with the child.

"Julie came in and saw me covered in vomit and diarrhoea on the floor and rang the doctor and an ambulance."

Initially, Rita recalls, the doctors thought she was suffering from an extreme form of gastroenteritis. She was brought to hospital and given an injection to calm the vomiting.

"Eventually the spinning stopped. I was allowed out of hospital the next day, but within a week the attacks started again - pressure in the ears, spinning, vomiting."

Over the next six months she experienced several more attacks, and kept getting the injections.

"I was advised to take only fluids and lost nearly two stone."

It was during this period that she started to collapse on the street without warning, and experienced the humiliation of abuse from appalled passers-by who were ignorant of her condition.

In the spring of 1981 Rita was diagnosed with Meniere's disease in her right ear.

"The doctors explained that I had a disease of the inner ear and that my organ of balance and of hearing had developed a long-term progressive disease which damaged both the balance and hearing capacity of the inner ear," she recalls.

Meniere's disease can be difficult to diagnose because patients don't always present with classical symptoms, says Dr Guan Khoo, ENT consultant at St Vincent's Hospital in Dublin and St Michael's Hospital in Dun Laoghaire.

"Vertigo can present from a huge range of disorders so it's a case of nailing it down as to whether it is coming from the inner ear - it could be Meniere's disease - among other things which could be due to something in the brain, spine, low blood pressure or as a result of poor eyesight and which would not be Meniere's disease."

On top of that, says Dr Khoo, there is a dearth of proper assessment of patients with vertigo in Ireland.

"Not many hospital units have objective tests to assess a patient's balance function," he says, adding that it is his long-term ambition to establish a centralised neuro-otology unit to which such patients could be referred.

Meniere's disease is, according to American research, quite common, affecting about one person in every 500, although according to the available evidence, it appears to be much less prevalent in Asia.

The condition usually affects people in their 40s and 50s, though, Dr Khoo points out, the disease can occur in any age. "I have a 17-year-old patient with Meniere's disease," he adds.

Rita believes that there is a genetic link in her case.

"My aunt got Meniere's disease at the age of 40 and lived with it until she died at 92," Rita observes.

In the five years following her nightmarish experience, Rita suffered intermittent attacks of vertigo, nausea and vomiting. These could last for up to 24 hours and were accompanied, she recalls by "a lot of noise and a sensation of fullness in my ear".

Dr Khoo explains: "Often patients will know a vertigo attack is coming when they feel an increased sensation of fullness in the ear," he says, adding that drop attacks, such as those experienced by Rita, tend to be rare.

"Patients will literally fall onto the floor with no warning, which is known as The Crisis of Tumarkin," he says, adding that some people may also appear to walk unsteadily because of the vertigo, which may be misinterpreted as a sign of inebriation.

By her early to mid-30s, Rita was experiencing significant fluctuations in her hearing and had tinnitus. The vertigo attacks continued but were a little less severe, now lasting up to 11 hours instead of 24.

After about 15 years, when she was in her late 40s, the symptoms changed again - the vertigo attacks retreated, but her hearing loss increased significantly and she experienced hyperacusis or an extremely acute form of distorted hearing.

"The hearing loss was so severe that it caused distortion of sound and could be very uncomfortable - for example someone putting a spoon on a saucer would be too loud," says Rita, who in 2012 started the Dublin Meniere's Support Group. The organisation now has about 60 members ranging from people in their 30s to their 70s, and is officially a group within the UK society.

After studying counselling, Rita had worked for many years as a facilitator for people with mental health issues with Grow Ireland, but by the time she reached her 50s, she found it increasingly difficult to carry on.

"I enjoyed my work and managed the big attacks although it wasn't easy," she says, recalling that as her hearing deteriorated, she started to get severe headaches.

"There was a lack of coordination, and I started dropping things," she says, adding that she still had an occasional attack of dizziness and nausea.

By her late 50s, the mother of three adult children was also experiencing significant fatigue and eventually had to give up work completely.

Now Rita wears a panic button around the house, and when she goes out, brings a special card explaining her condition, as well as an explanatory letter from her GP.

Aside from its extremely distressing symptoms, the disease can have a very serious psychological effect on patients, she says.

"Some people become very ill with anxiety and depression because of the impact the disease has on their daily lives - they cannot go out because they are afraid that if they have an attack people will leave them lying on the ground believing they are drunk.

"You can't ring for help because everything is spinning and you are sick," says Rita.

Management of Meniere's disease, says Dr Khoo, is primarily aimed at controlling the debilitating symptoms of vertigo and includes medication to treat dizziness and sickness. Surgical interventions, including the injection of steroids into the inner ear - generally about five injections over five weeks - to reduce inflammatory reaction in the inner ear can often be successful for some patients, he says.

Injecting an antibiotic called gentamicin into the inner ear can also help to eliminate the malfunctioning balance receptions of the inner ear, he explains, adding that, in the past, the removal of the entire inner-ear balance organ was recommended.

However, says Dr Khoo, this is now generally carried out as a last resort as it is recognised that there is a 40pc chance of the disease moving to the patient's other ear.

* The Meniere's Dublin Support Group meets at 2.30pm on the first Monday of every month at the Deafhear Dublin South Resource Centre close to Tallaght Hospital. For more info mail menieresdublin@gmail.com or call 087 1399946

Visit menieres.org.uk

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