Retired teacher Judy Machin discusses the challenges involved with managing an unpredictable and often debilitating condition…
My first warning of Ménière’s was a sudden onset of debilitating vertigo, about six or seven years ago. It was incredibly scary, because I couldn’t stand up. The initial diagnosis was a brain tumour, but an MRI scan ruled this out and I was back to normal in four weeks. Odd things then started happening. At my daughter’s wedding I became very sick and giddy. At the time I thought I was just being neurotic, but with hindsight it was typical of the attacks that I get now. Attacks of vertigo became more frequent and my ability to balance rapidly declined. Finally I went to my GP and was referred to a specialist.
A provisional diagnosis of Ménière’s was made. It is not one of those neat, tidy diseases where you can say ‘This is a diagnostic test for it.’ You need to satisfy four criteria, which are tinnitus, vertigo, a sensation of pressure in your ear and specific hearing loss, where you lose the ability to perceive particular frequencies. The problem is that many conditions display those characteristics, so you have to be monitored over a period of time. My hearing loss is typical of Ménière’s and further auditory tests have confirmed the diagnosis.
Support and acceptance
I have a very stoical husband, who is unfazed by anything and very supportive. My children said, ‘There must be something that can be done!’ You hear that response a lot in the West. We’ve come to think that there’s an operation or a pill that’ll fix everything, when in reality there are lots of things that nobody can do anything about. You just have to accept it. It was contact with the Ménière’s Society that saved me from lapsing into total depression. It gives unbiased factual information and down-to-earth advice on managing Ménière’s.
One of the most embarrassing things about the disease is that it makes you look like a drunk. I would stagger around Richmond, clinging on to lampposts. My husband found that ‘People are much nicer if you have a walking stick’. It didn’t help much with the walking, but it did stop people avoiding me.
I used to be an incredibly active person, involved in several volunteer projects. Now, because of the debilitating sickness and vertigo attacks I get, I can’t just say to people ‘I’ll be there on Monday morning at 9 o’clock.’ I had to withdraw from all commitments and suddenly found I had nothing to do. Even good friends get fed up when I suddenly have to cancel meeting them.
Thanks to an understanding consultant I am currently on vestibular rehabilitation (VR), which teaches you how to exercise some control over the symptoms. Maintaining balance involves both ears and eyes, and I’ve become hypersensitive to an odd range of sounds. I once fell over in response to an ambulance siren. I also get all sorts of weird visual distortions that bring on attacks of vertigo. Through doing exercises, I’ve learnt to control my eyes and stop them going ‘wobbly’ when rubbish comes in from my ears.
VR hasn’t actually helped my balance much, but it’s certainly helped my confidence. I was given a wheeled frame, which has made walking less of a nightmare. It also reduces my fear of falling, as I can activate the brakes and hang on if I get sudden vertigo. Controlling my eye movements and breathing reduces the panic response. I’ve become much more philosophical about the whole thing and can manage outside situations, which I never thought I could do. It’s only on really bad days, when everything kicks in simultaneously, that I feel I can’t go out.
The Ménière’s Society is the only registered charity in the UK dedicated solely to supporting people with Ménière’s disease and other vestibular disorders causing dizziness and imbalance. As well as providing information to patients, carers, professionals the public, the Society also funds vital research into vestibular disorders. To find out more, contact 01306 876 883 (admin and minicom) or visit www.menieres.org.uk
Source: Access Magazine, UK