Meniere's
I have Meniere's Disease. It's
not nice. It has been a challenge. Symptoms emerged definitively when I
was 42, and for a while it threatened my whole way of life. I couldn't
walk, work, read.... I was continually struggling, irritable,
bad-tempered and generally obnoxious. If I hadn't been in the
privileged position of being a director I would have lost my job and
income. I got help from a well known consultant, Mr. David Moffatt of
Cambridge. David helped me come to terms with and understand my
condition so that I could fight it. With his help I have come out on
top. The disease will never go away and cannot be cured, but for the
moment I am winning. I hold down a high pressure job and have an active
life, many who suffer from Meniere's have been denied these by the
condition. The following is a letter from me published in the Meniere's
Society journal - "Spin", which explains how I coped.
Dear Spin.....
My account of Menieres, it'll be quite long but then I have plenty to
say, I've been meaning to write for a couple of years, I hope some
readers find it helpful.
I am male, 46, a director of a well respected group of companies, and an
information technology specialist. I decide what technologies the
businesses need and then, with my team, source, implement and maintain
them in use. I work in an office environment, and spend much of my
working day in front of computer screens.
In my late '30s I started to notice some slight deterioration in my
hearing, I found it more difficult than before to hear people clearly in
large meetings, but I could cope. The deterioration progressed slowly, I
avoided larger meetings. By the age of 41 I was also aware of a 'bunged
up' sensation, a pressure in my left ear similar to the feeling one gets
with blocked sinuses during and after a cold. The pressure sensation
persisted and I tried various methods to help clear my sinuses to
relieve it, without success. Eventually, aged 42, I went to my GP and
obtained a referral to an ENT consultant. I presented my symptoms - the
hearing difficulties and the pressure, and the consultant tested my
hearing and told me I was suffering premature deafness in my left ear. I
argued with him that his diagnosis was unlikely because his tests showed
hearing loss at lower frequencies whereas most age-related deafness
starts with the higher frequencies, and because his diagnosis did not
address the pressure in my left ear, but he had no further suggestions.
I left, dissatisfied, discussed the consultation with my wife and we
agreed that I should ask for a second opinion. My GP said he didn't know
of anyone better in the area, but if I named a consultant he would refer
me to them. Life was too busy at the time to spend researching
consultants, so I let the matter rest.
A couple of months later I had my first vertigo attack. I was sprawled
out on a couch reading, and suddenly found that I couldn't move, with no
warning I was instantly so dizzy that movement was impossible. The
attack lasted about 20 minutes, the effects slowly passed leaving me
rather shaken, and I got on with things and put it behind me. A couple
of weeks later I had another attack, and discussed it with my wife, who
suggested that perhaps it was related to the problems I was having with
my hearing. Dubious, I started researching on the Internet for
conditions that might include my symptoms, and to my alarm I found some
including Menieres and Acoustic Neuroma, clearly I needed to take some
action to get a definitive diagnosis. Further research enabled me to
find a consultant surgeon with specific interest in these conditions -
Mr. David Moffat at Cambridge (some 200 miles from home!), and my GP
referred me to him. Mr. Moffat's preliminary diagnosis was that I had
Menieres disease, but that it would require a barrage of tests to
confirm. I went on to have further hearing tests, balance tests, an MRI
scan, and finally an Electrocochleograph. Mr. Moffat was satisfied that
the diagnosis of Menieres was confirmed, told me what I might expect as
it progressed, what options might be possible in the future to help
manage it, and in May that year prescribed me SERC and a low-salt diet.
The SERC made a big difference initially, relieving the pressure and
allowing me to hear more clearly than I had for many months. however the
condition progressed, and by the onset of winter I was suffering, very
tired at the end of each day, commonly having prolonged dizzy spells on
Saturday morning (we called it my "Saturday Morning" disease), and being
irritable and unpleasant. By Christmas it was becoming impossible, I
could only work for 2 - 3 hours each day before becoming dizzy (with all
the unpleasant side effects we suffer) and having to lie down in a dark
room for hours to recover. Over the 10-day Christmas break I improved
noticeably, and on returning to work rapidly deteriorated again. I
concluded that the office environment was adversely affecting me, and
had two strokes of inspiration. I turned off the fluorescent lights in
my office, and bought a 'flicker free' TFT Flat Screen monitor (similar
to the displays in laptop computers) to replace the conventional CRT
that was the normal display used on most desktop computers. My condition
improved significantly within a fortnight, I was able to work through
the day again as long as I didn't spend too much time under fluorescent
lights or in front of computers with conventional CRT displays. I found
that if I did have to work on a computer with a CRT screen I would start
feeling queasy very quickly, I wasn't well, I was always very tired and
irritable, I was impossible to live with at home, but generally I could
manage my job OK and earn my salary.
In May I went to see Mr Moffat to report on my progress, and from my
experience we determined that my symptoms were optically stimulated, the
flickering of fluorescent lights and computer displays were significant
stimulants for my Menieres symptoms. The subliminal flickering of the
lights and display were aggravating the argument between my defective
ear and my eyes for primacy in giving me my sense of balance.
Understanding this was very important for me as without mastering the
problems of Menieres I would have had to give up working with computers,
and having earned my living as an IT specialist for most of my life the
consequences of that would obviously have been very serious. By
intelligently controlling my working environment I was able to minimise
the symptoms to a livable degree, although I couldn't travel more than
a few miles without nausea and vertigo, and odd situations, such as the
swirling flakes of a snowstorm, retained the ability to give me an
instant vertigo attack.
We have a gym at work, which I used to use regularly, but ultimately I
became bored with exercise bikes, treadmills etc. We also have a
Racquetball court - rather a luxury but the Chairman of the business
developed a liking for the game while living in America. Racquetball is
an American ball game similar to Squash but played on a slightly larger
court. You may receive the ball off all six surfaces (floor, walls and
ceiling) so the game involves a lot of twisting and turning and running
about - it's great exercise. I decided to try playing as a substitute
for working out in the gym - it made me feel terrible. All that twisting
and turning while trying to follow a moving ball, it was horrible, it
made me very, very dizzy and nauseous. But I persevered, I started
playing regularly - twice a week, and I got better. With each week the
symptoms I suffered lessened, sometimes I had vertigo attacks while
playing, and I always had some degree of nausea, but they diminished. I
became better able to withstand other movement, long car journeys became
possible again, the "Saturday Morning" symptoms largely disappeared. The
effect of playing Racquetball was to retrain my brain to use my eyes as
the dominant balance input. Life became much more normal again even
though I was becoming progressively more deaf.
Now, three years on, I still play Racquetball twice a week every week.
If I miss a week I know about it - my Menieres symptoms increase after a
few days of not playing. I still get indigestion from playing, but it's
not bad enough to be called nausea. I can comfortably handle my
high-powered, high-stress job, and still have enough energy / capacity /
strength left over to do things in the evenings and at the weekends -
for the past three years I have had a real home life again. Between
managing my environment and using the ball game as a form of balance
training / therapy I am able to get on with a satisfactory life.
But I'm still getting deafer, and from being slightly disadvantaged in
meetings my deafness has deteriorated to the extent that I cannot
reliably understand my work colleagues or my family when they are
talking to me face to face. People's voices differ, and those with
harder-edged tones I can cope with, but softly spoken people with no
treble or "edge" in their voice I find almost impossible to understand.
Late last year I consulted Mr. Moffat about trying a hearing aid, he was
sceptical because it wouldn't help the Menieres distortion of my
hearing, but agreed that it might help to have my 'good' ear
strengthened, and authorised my GP to refer me to an audiologist. When
the audiologist tested me he found that I have lost almost all the
hearing in my left (Menieres) ear, and my right ear is well on the way,
it is only half as good as it should be, which he suspects is probably
Menieres related as well. I am now kitted out with a state of the art
digital hearing aid in my "good" ear, I'll have been wearing it for
eight months at the end of this month (September), and the difference it
has made is fantastic. I can communicate again, I had not realised just
how much I was avoiding conversation with people, hiding in my office at
work etc., the improvement it has made to my life is shockingly
dramatic. And as an added bonus the hearing aid has significantly
mitigated my tinnitus (I know I haven't mentioned tinnitus before but
most of us with Menieres have it, except when it's desperately
oppressive I tend to take it for granted).
So that's it - so far. With good advice and management I have succeeded
in transforming my situation from someone effectively unable to work due
to Menieres, with a domestic life in tatters due to my irritability,
frustration and stress, into a "normal" life. I'm not in "remission" in
the conventional sense of Menieres, if I let up on the Racquetball or
spend too much time with flickering light sources I start suffering
again very quickly (the television is not a problem - I haven't had one
for over 10 years!). I don't know where my Menieres will take me in the
future, it may get to the point that I cannot beat it with all the
management techniques in the world, but for the moment it's under
control and the only medical treatment it receives is SERC - I keep on
taking the tablets!
I hope this helps some other sufferers, if you work in an office - with
computers etc. and find that difficult, try to change things, sort out
the lighting and get (your employer to buy you) a flicker-free computer
screen. If you have a problem with movement in that you cannot watch
moving objects or travel in a vehicle for more than a few minutes
without nausea, get some balance exercises to help you cope with the
movement, and, if you can, try playing a ball game regularly. These
things have made all the difference to me. And while a hearing aid
probably wont help your Menieres ear, if you can still hear in one ear
without distortion it might help it make up for the loss of the other
one.
Since writing this account I
have taken up sailing, and I'm now on my second yacht! My theory was
that bouncing up & down on the waves would further rehabilitate
my brain to depend on my eyes rather than my ears for balance. The
theory works - I feel better, balance better, for spending time on my
boat. Meniere's can be overcome, but you have to challenge it, and that
is not always a pleasant process.
Home Work Meniere's
Racquetball Sailing Dogs
Laser Printer
Secrets Contact
Links Clippings
