My 25 year odyssey with Meniere’s Syndrome
T
his is my story. I decided to write about my journey in case it helps others suffering from this or any other rare disease.
vertigo. This would hopefully extend the life of my natural hearing as the condition eventually causes deafness as the function of the inner ear becomes destroyed.
I am in my mid-50s and fit. For the past 25 years I have suffered from Meniere’s syndrome, an incurable rare disease. I had no pre-existing medical conditions and otherwise had suffered from nothing abnormal aside from frequent ear infections as a child which were treated with the standard antibiotics of the era.
Over time the vertigo did diminish, but what I could not prevent was the onset of deafness and the progressive inability to discriminate speech. It’s the hearing equivalent of being able to distinguish light and dark but not being able to see shapes. By the end I was profoundly deaf. Hearing aids could not help me. It was very hard as I was an active, engaged person that had a successful career in finance. My career ended prematurely. I felt like an injured athlete being forced to retire in his prime.
I presented with all the classic symptoms, acute vestibular dysfunction, vertigo and extreme sickness. Over time I became profoundly deaf and lost the ability to discriminate speech.
Damian post-op
The vertigo was horrendous. Its onset was sudden, without any notice or prior sign. I had the first attack whilst on a flight, the absolute worst place to be. The attacks resulted in my suffering from nystagmus; a sense that all was spinning around me, worsening if I made any slight movement of my head. My balance system became disconnected from what I was seeing and I would suffer extreme and prolonged bouts of vomiting. This would last for 2-4 hours and the only way to relieve it was to lie down in a washroom in the recovery position, eyes closed, head resting on the bare floor or in a toilet bowl throwing up. This usually happened when I was in the office. Very humiliating! Afterwards I would be extremely tired and would need to sleep for a few hours, and then all would be fine until the next one came. At its worst I suffered from these attacks every 2 weeks. I also occasionally suffered from drop attacks where I would suddenly and without warning feel as though I was being violently pushed. I would immediately fall to the ground unless I could catch myself in the split second before. Fortunately, these occurred very infrequently and I was never injured. I was fortunate to have some medical knowledge, thanks to Peter Freeland’s outstanding Biology teaching at Worth, but quickly came to the conclusion that those with academic and research backgrounds understood this condition best and could give me the best advice. I had exhaustive testing over many years in the UK and US. Too lengthy to list here but I tried it all, mainstream and nonmainstream. The diagnosis ultimately differed but the management was the same. Meniere’s syndrome in the US, sensorineural hearing loss of indeterminate, possibly genetic origin in the UK. Nothing could be done to reverse the symptoms, only to manage them through medication, lifestyle and diet to try to reduce the frequency of the
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A graph of Damian’s hearing 3 months post-op – a vast improvement!
I became more introverted, irritable, withdrawn, depressed and frustrated as I searched for a solution. I knew that I was in a dark place, but it was worse than I thought. I could not participate in social activities by the end. I just couldn’t hear! It was hardest of all on my wife and family. So I prayed. And read. And I searched for a way out. And then it all suddenly changed. I began to accept my fate. I otherwise had a great life and never stopped living it despite having this. Having seen the best people I understood that I could do nothing about this, so I redirected my energies to adapting and living with it. And then a miracle happened… I decided to have cochlear implant surgery first on one side and then, a few months ago, on the second side. A medical device slightly larger than a 10p coin has been implanted in both sides of my head and wired into my cochlear. This, together with the sound processors I wear externally, allows me to bypass my natural hearing and hear bionically. The device is a thing of absolute wonder. My hearing has been largely restored, the vertigo largely gone and I have got my life back. I dedicate this to all those that are suffering from this or any other debilitating illness through no fault of their own. Particularly when it causes you to lose something that you deeply value. Where the end might not be in sight or cure not at hand, learn to live with it and try and accept and enjoy the life you still have. Have hope - things can improve as they did in my case - and accept that one’s suffering can make one a better, more rounded, empathetic person. Sometimes I think I gained so much from going through all this, even though I wouldn’t wish it on anyone. Damian Chunilal R’86
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