I remember the night, or rather the early morning before my first Meniere’s attack. I was up until 2am finishing my Maths B assignment. That entire day I had not felt my usual self, but only sleeping for a few hours can do that…
That afternoon Mum was driving me home. We have a long, bumpy and rock strewn driveway. As the car drove over each bump, I was unable to control my body. I felt myself flopping in response to the minutest of movements. At the top of the driveway I was sick. Barely able to walk, I managed to crawl and then roll into bed. I was confined there by my own body until several hours later. Putting this down to the unusual stress levels of my senior year of High School, I pushed the experience to the back of my mind.
My next attacks came mainly at night. I would wake in the middle of the night and as I turned over I found my vision was out of sync with my body. The world did not necessarily spin, but rather took several seconds to catch up. I felt as if my anchor to the world had been hoisted. I could not concentrate on anything, I only remember screaming, crying hysterically and vomiting.
After each attack I would be unable to do anything but lie perfectly still with something firmly touching the back of my head. It was a week or more before I had fully physically recovered. Being of a naturally anxious state, I never fully recovered mentally. The idea that this experience was unpredictable, and could be just around the bend, terrified me.
Due to my pre-existing tinnitus, I had already been referred to an ENT, an ophthalmologist and what seemed to be a never-ending stream of audiologists. Trying to learn more about tinnitus, I had already been doing extensive research on the ear and all its possible failings. I stumbled across Meniere’s, but due to the typical age range of sufferers, I had not dwelt on the possibility.
The ENT broke the news to me when I was only seventeen. I still remember him looking at me and saying “You have Meniere’s Disease”. At any stage in your life this announcement is difficult to cope with. Typically at seventeen you’re learning to drive, you’re about to graduate from high school and you’re starting to leave behind your years of childhood and replace them with your adult life. At seventeen I had to grow up very fast. I suddenly had a condition that normally only affected those twice my age or more.
Instead of commencing my tertiary study immediately, I stayed with my parents, working as an Administration Officer and then a Lifeguard and a Learn-to-Swim teacher. I had a year to grapple with reality so I could go on to study. I had more hearing tests and trialed various treatments. Eventually my ENT convinced me to get grommets. Grommets spelled a temporary end to my favourite exercise, swimming. I could no longer dive but eventually I was back in the water (without diving) only to discover that Meniere’s had played havoc with my balance. With every turn, I felt myself growing dizzier and dizzier. I was, at this point in time, a Learn-to-Swim teacher. Teaching others to swim is rather difficult when you have grommets and a less than desirable balance ability.
During 2011 and then 2012 I knew my hearing had deteriorated. My hearing test results showed fluctuation, which made it very difficult to acquire a hearing aid. As a child I had to go through Hearing Australia. As a client there, I was tested by a different audiologist each time and each time a different piece of equipment was suggested. On my second visit I had a hearing aid ordered and a mould taken of my ear. On my next visit the hearing aid would be fitted. I was ecstatic at the prospect of being able to hear a little better and if my luck held, maybe the tinnitus would lessen. My luck did not hold…… I saw a different audiologist who refused to give me the hearing aid. She said that my fluctuating hearing could be worsened by the use of a hearing aid. Whether she was right or not, I could not say – but I knew I was distraught. Recently I have read that hearing aids may help with tinnitus and Meniere’s. I know for sure that I did not appreciate being seventeen with Meniere’s and feeling as though I was expected to live with it.
I am now 18 and studying at university. I have not had a major attack in months. I do experience, on a semi-regular basis, minor episodes of vertigo. These are periods in time that I know I am experiencing a lessened Meniere’s attack that is being controlled by the measures I have put in place. I have grommets and am on a low salt diet, medication, have limited caffeine and rarely drink alcohol.
I want to be able to put Meniere’s behind me and live the life of a typical eighteen year old. I want to be able to have normal hearing, not have tinnitus and be able to swim without feeling nauseous. Most of all, I would like to know that as a young person with Meniere’s that this will not affect me for the rest of my life.
To any sufferers out there – hold on! There will be light at the end of tunnel one day. As I start to tame my Meniere’s I catch an occasional glimmer and it is glorious to behold.
I am eternally grateful to my family and friends, who have supported me through this. You have kept me striving to find an equilibrium, even if my ear cannot.