Living with Ménière's

Living with Ménière’s

Losing my hearing

At 15, I noticed my hearing deteriorated quite suddenly. 

“Your ears will just need to be syringed,” I was told, which wasn’t a surprise as I’d always suffered with ear infections. So I went to the doctor. When my hearing still hadn’t returned to normal a few days later, I started to worry something was wrong. I was referred to an audiologist for a hearing test where they confirmed that I had, in fact, lost hearing. 

Over the next few years, and after many trips to the hospital, I was starting to struggle in social situations, and was given a hearing aid for my ‘permanent’ hearing loss. But within a couple of months, I went for another hearing test and was told that I’m some kind of miracle! My hearing had apparently returned, and I had to give the hearing aid back. However, I didn’t feel any different, I still couldn’t hear, and it was really starting to get me down. 

Finally, a diagnosis

By this time, I’d completely lost faith in the consultants I was seeing, and so I asked for a second opinion. And I’m glad I did, because I was diagnosed immediately with Ménière’s disease, solely based on my notes. Although I didn’t fully understand the future impact of the diagnosis, I had a basic understanding of the condition. 

It wasn’t until my second year of university that more symptoms started, and the worst then came when I was 23. The room would spin uncontrollably for hours on end. I would find myself laid on the bathroom floor, just trying to cope. When it finally got too much to bear, I had a procedure – an Endolymphatic Sac Decompression – which was supposed to cure my symptoms. And it was a success…for about a year. Then all of my symptoms came back, but even worse than before. I was having vertigo daily; the tinnitus was roaring, and I didn’t want to leave the house. 

When the consultant who diagnosed me retired, he referred me to his colleague who he trusted to help me. I was given two Gentamicin injections, neither of which helped with the vertigo at all. And after months of really struggling with vertigo, I finally resorted to having another operation. Instead of being given an injection, the Gentamicin was put directly into my inner ear, with the sole purpose to damage my vestibular system, which is responsible for balance. I was told to prepare for four weeks of awful vertigo while the Gentamicin took effect, but after that, I would see significant improvements. Only the four weeks of vertigo never came, and my symptoms returned confirming what I was dreading – the operation had failed. 

Living with Ménière’s

Though the vertigo has reduced in duration, I can still have daily attacks. I try to manage the symptoms as best as I can using diet, sleep and relieving stress with exercise. Through the Ménière’s Society I have met and chatted to people in the same position.  Although I wouldn’t wish this disease on anyone, being able to compare our stories and ways of coping with the symptoms has been really positive for me.

Kan Do Ventures have been amazing with helping me to get back to being as healthy as I can be. And they have supported me in so many ways – letting me work from home, attend hospital appointments or just sit with my head on the desk for an hour!! I feel so lucky to work for such a great employer, and I’m pretty sure that if I didn’t work for such a supportive company, I would have struggled to continue with my career at times. 

For more information on Ménière’s and other dizziness or balance disorders, contact The Ménière’s Society.

1 reply
  1. Angela
    Angela says:

    And she goes through all this with a beautiful smile on her face. So much going on with her health yet she’s always there for others. Amy, you’re an inspiration

    Reply

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