 Disclaimer
Meniere's Australia encourages contact between people who have Meniere's. Knowing how others have experience and coped with Meniere's can help you feel less alone. However please note that the advice, opinions and information given in, or implied by these personal stories remain those of the stories' authors and are not in any way endorsed by MA.
 Meg’s Story
‘I knew that I should see the doctor as I felt terribly sick’
The week I was to enrol at the university for my doctoral studies in March 1998, I became a real dizzy blonde. I was already committed to my research after taking early retirement at the age of 53 the previous June. That I was finding my research so exciting and fulfilling became critically important during the next few months.
By the Wednesday of that first week in March I knew that I should see the doctor, as I felt terribly sick. He gave me seasickness pills and said I had some sort of virus but not to worry that I would feel better in a few days. I recovered my balance but my hearing had virtually disappeared in my right ear. I visited the doctor again and started the round of visits to audiologists and various specialists.
‘It seemed some nasty virus was to blame’
One strange occurrence was when I went to see a specialist in Kew, who said, ‘You come from Blackburn, don’t you?” I replied that I did, and he told me that the man who had walked out of the surgery before me also came from Blackburn and had lost his hearing catastrophically just as I had and had the same dizzy episode during that first week of March. It seemed some nasty virus was to blame.
‘I suddenly awoke with the world spinning …’
I had no dizzy spells for several months; the MRI scan showed that I had no tumour and I only suffered the tinnitus and the loss of hearing. Then in August I suddenly awoke with the world spinning and spent a few hours recovering. The doctor suggested that I should take Serc. I was always suspicious of that drug. Partly because it is not ever prescribed in the USA and partly because my father who had Meniere's thirty years before was prescribed Serc and it never did anything to improve his occasional attacks. I have to confess that I stopped and started the medication. I took it reluctantly whenever the doctor said I should but always felt less well while I was taking it.
I asked several doctors whether Meniere's was hereditary since my father had suffered from it many years ago. The answer I finally got from a specialist was that although it is not thought to be hereditary, certain shapes of ear may be more vulnerable to viruses than others, and that I had probably inherited my father’s ears!
‘I found myself clinging to a handy tree…’
Each month from August to December 1998 I had one day of dizziness. In the December I spent one Monday in the State Library, researching 19th century newspapers on microfilm. I have to confess that I didn’t feel terribly wonderful and I closed my eyes each time I fast-forwarded the film. Still I managed to get a day’s work done and caught the train back to Blackburn.
I began to feel slightly worse as I started walking up the hill to home, when suddenly there seemed to be a very loud noise, the ground came up and I found myself clinging to a handy tree, looking to all the world like a drunk. I managed to stagger to a nearby table and chair in front of a café and found my mobile phone. Fortunately, my husband had just returned from work and he picked me up in two minutes. Not realising how ill I was, he double-parked, remaining in his seat, so that I had to get up from the chair and somehow manage to stumble the few yards and fall into the car.
‘My mobile phone was my most important accessory!’
From then on the dizzy attacks became worse. There was still the monthly cycle but the attacks took longer to get over. I invented a new word to describe how I felt between attacks – ‘bobbly’. The family understood that I wasn’t exactly dizzy but it was as though my vision and balance weren’t fixed and inside my head I was bobbing very gently up and down, making me feel slightly sick and headachy. We missed theatre nights, driving halfway before I had to ask my husband to turn the car round as the world started to spin faster and faster. I daren’t drive and I became afraid to go on a train unless he was with me. I would only go out of the house on my own if I knew he or someone else was at the end of a phone ready to collect me in an emergency. My mobile phone was my most important accessory!
Still in June 1999 we planned a round the world trip and although we had to cancel one flight and I had to be wheel-chaired on to the plane the next day in Florida, we managed to visit friends and relations from the Caribbean to England and fit in lots of research from Scotland to London.
‘….we marched into our doctor’s surgery and told him that I wanted an operation’
But when we returned I had such an awful time of dizzy spells lasting days. I couldn’t use the computer because I would end up falling off my chair. I had all my research to input into my thesis, which was almost complete, but I couldn’t get on with it.
One Saturday in late August my husband sat at his computer and searched the net for advice on surgery. We had come to the end of both our tethers. It may be no fun having Meniere's but it’s certainly not much fun living with someone who has it. Armed with a sheaf of print outs from American web sites, we marched into our doctor’s surgery and told him that I wanted an operation.
We were sent to another specialist and after five minutes in his surgery he said ‘It’s basically ruining your life and I can do something for you”. How my heart lifted to hear those words. He explained that he had developed an operation to lift the pressure from the endolymphatic sac by cutting a hole in the mastoid bone, the size of a 20 cent coin.
And so after a few more tests I found myself sitting in Bethesda Hospital on the first Friday in October, extremely apprehensive and wanting to run away. My husband calmed me down and finally it was all over. I woke up with a huge bandage around my head and was allowed home in two days. Since then I completed my PhD, published it as a book and am now writing another.
I still have fluid changes in my ear and many nights if I lie on my right ear I feel dizzy, but I just move my head a fraction and the dizziness disappears. Very unlike those terrible dizzy spells when I spent time retching and then so drugged all day that I could only sleep. I take two tablets of Hydrene (one in the morning and one at night), I do not drink any caffeine or decaffeinated coffee, I avoid salt and I try to get plenty of exercise.
‘I phoned MSGV fairly early on and joined… one of the best things I could have done’
I am married to a patient man but I have to say when we had to miss yet another outing, his face often revealed a combination of worry and anger. It was difficult to keep up our social life though we did manage to hold parties and go to dinner with friends. But friends and relations were always watching to see if I was ill. Now most of them have completely forgotten about those dreadful months.
I feel that I was extraordinarily lucky that I had already given up my career because I would have been forced to retire on the grounds of ill health and it would have always dogged me. Instead I had already embarked on a new life and my research sustained me throughout the bad days.
I phoned MSGV ( Meniere's Support Group of Victoria) fairly early on and joined. It was one of the best things I could have done because of the information dissembled through Whirligig and all the pamphlets. I bought the video (ed: "Dizzy Terror - Meniere's Disease Awareness") and I think it helped the family to understand a little more about the disease.
I was lucky to have a sense of humour (although even that deserted me on some occasions) and I remember that after I fell off my computer chair, I found myself crawling along the hallway to the bathroom for my pills roaring with laughter at my situation. The operation I had was a success, or was it? Some American research suggests that the general anaesthetic alone has a remarkable effect on Meniere's. Whatever, I’m glad I took the chance.
Dr Meg Probyn
Back to personal stories
Top
|
