 Disclaimer
The Ménière’s Support Group of Victoria encourages contact between people who have Ménière’s. Knowing how others have experience and coped with Ménière’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 MSGV.
 Living a full life with Ménière’s
‘…I would just have to learn to live with it’
I was diagnosed with Ménière’s disease 15 years ago. I was 36 years old, married with a daughter aged 9 and a son aged 5. Prior to my diagnosis I was plagued by intermittent attacks of dizziness, vomiting and diarrhoea and had absolutely no idea of what was wrong with me. The attacks would last for up to 4 hours at a time and once the severe symptoms had passed I would then be left with terrible vertigo and it would be days before I would begin to feel ‘normal’ again.
My local GP sent me to an ENT specialist. After a number of unpleasant tests, it was determined that I suffered from Ménière's disease and was given Serc and Stemetil; told to go home; told there was no cure for the disease and that I would just have to learn to live with it.
‘… natural therapy… chiropractic treatment and… Serc’
I would visit my specialist every few months for a hearing test, which monitored the continuing decline of the hearing in my right ear and we would discuss how I was dealing with the attacks.
I tried natural therapy for a number of years combined with manipulation/chiropractic treatment and continued to take the Serc. Once my specialist suggested that I try and wean myself off the Serc. I tried this but the attacks became even more persistent and I vowed never to try that again.
‘… warning before an attack…’
It is difficult to recall the time span between attacks but they came often enough that I was always fearful of another attack when I least expected it. One such attack came during a birthday party for my daughter. I vividly remember sitting in an armchair in our lounge room (my world spinning uncontrollably) while the birthday party guests came and each used the telephone to call their parents to pick them up early.
I sometimes felt that I had a warning before an attack because of a very definite fullness I would feel in my ‘deaf’ ear a few days before an attack would strike. Once the attack was over and I was starting to feel somewhat normal again, the fullness would also have disappeared.
‘…in sickness and in health!!!’
My husband was tremendous during the severe attacks, my dizzy spells were so awful I could not stand alone and therefore when needing the toilet because of the vomiting/diarrhoea he would be there beside me holding me on the toilet and also holding the bucket. Afterwards we would joke about the marriage vows – in sickness and in health!!!
I believe that the disease also affected my confidence because I was always fearful of travelling too far from home in case of an attack. About 5 years after first being diagnosed I was fortunate enough to gain part time work. Prior to that I had been working for my husband within our home.
‘… full time employment … a household and two children’
Going out to work meant exactly that, outside the home. My employer (a Member of Parliament in the State of Victoria) was very considerate (who said Pollies were terrible people!) and very aware of the disease and I was therefore able to keep him informed when I was fearful of an oncoming attack. For 10 years I managed working in the same job, even moving into full time employment along with managing a household and two children. Every so often an attack would strike and I would be out of action for a few days, slowly creep back to ‘normal’ and then back to work and the usual daily grind.
‘…new specialist…’
My original specialist away and I needed to find a new specialist. I heard Mr Burkhard Franz on 3AW discussing Ménière’s disease. There was also an article about Ménière’s written by Mr Franz in our local paper. I gave his clinic a call and made my first appointment.
Mr Franz arranged for a CT scan and also determined the severity of my hearing loss with much more sophisticated equipment than first used with my previous specialist. A new specialist meant new suggestions re living with Ménière’s. I continued my Serc and Stemetil (only using Stemetil during an attack) but I also visited a physiotherapist for massage and neck manipulation, carrying out daily neck exercises between visits. This helped for some time but eventually it was decided that there was no alternative but for grommets to be inserted in both ears.
‘…grommets appear to work quite well’
I had my first ‘set’ of grommets inserted 3 years ago. They eventually had to be removed as they had moved position so much that they were not doing their job, I then had a second set inserted about a year later. This enabled my husband and I to enjoy 3 weeks in England/Scotland free of a Ménière’s attack. That long flight was no problem at all, nor the Underground in London and I even managed the London Eye, which I believe was quite a feat.
A few months prior to Christmas 2003 I had my third set of grommets inserted. Unfortunately for me, they try to remove themselves from my ears, causing ‘scabs’ on the eardrum which have to be removed. The whole procedure of having the grommets inserted, then a few months later having the scabs removed and the grommets pushed back into place is not at all pleasant, however for me the grommets appear to work quite well.
‘…trialling a small hand held device…’
I also used the Meniett machine (www.meniett.com) for many months but had to return it after the trial period. It appeared to work but not well enough to warrant the $5,000 price tag. I am currently trialling a small hand held device recommended by Mr Franz, which appears to be helping me. This device is currently being developed by ENTTEX (http://www.enttex.com) and I understand that it will be available shortly, for a small fraction of the cost of the Meniett device.
‘…stress is a major factor…’
I have no doubt at all that stress is a major factor in bringing on an attack. Last year my family went through a very stressful period. At the conclusion of that stressful time, I suffered a really severe attack. It was just like old times, out of control dizziness, vomiting and diarrhoea, absolutely shocking to go back to those bad attacks. It took months to come good after that attack but at this time, with the help of the grommets, I am managing very well.
Tips for managing Ménière's
I am now retired and I believe that not having the pressure of working has helped significantly. After I cautiously get out of bed each morning, I quietly move around the house doing odd jobs for a while to check my balance. I then go for a brisk walk for approximately 30 minutes as I believe that really helps get the blood pumping to the head/ears.
I eat Sustain or Just Right for breakfast (lowest salt content) and I’m careful with my salt intake, not adding it to any food or cooking with it. I must admit I don’t check labels for salt content though. I’m also careful with the amount of dairy products that I consume. I also try to have at least 8 hours sleep every night. I have a neck/back massage approximately once a month, as I firmly believe that helps.
I’m always very cautious when having to bend down, avoiding it where possible; I don’t turn my head sharply or change direction quickly, (makes working in the kitchen interesting, a much slower process required when moving from stove to fridge to microwave to pantry etc).
When dining out, as often as practicable I would choose a restaurant that is not over crowded or noisy as I can only hear the person immediately beside me speak. Therefore dining out with a number of people is not always workable. Restaurants with wooden floorboards and noisy chairs are very difficult to manage.
I always use a trolley when in the supermarket, even if I’m only buying a small quantity of food. The support from the trolley is great when moving between the brightly lit, high shelves filled with colourful items.
I read in a previous edition of Whirligig that installing a grab rail in the shower was a good idea. It is something that I’m currently looking into, as trying to balance on one leg while trying to shave the other is a feat that I have not mastered very well.
I miss not being able to dance, especially rock and roll and also playing tennis, both pastimes that were great loves of mine. However, I am learning patchwork and have taken up sewing classes, quite a contrast but very enjoyable and manageable with Ménière’s.
Living a full life with Ménière’s is certainly achievable and a positive attitude is a must.
Dawn Keast
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