I woke up one morning last summer with my head spinning. I hadn’t drunk too much the night before, it was for no apparent reason.
Every time I moved my head I would vomit as the room would spin and bounce around like I was being knocked about on a trampoline. I could barely walk and was drenched in sweat, although I didn’t have a fever.
I also noticed that I couldn’t hear out of one ear although that didn’t bother me as much.
I put off calling a doctor as it was a Sunday. Perhaps it was just food poisoning? How embarrassing would that be?
Something told me that this needed attention though. I had just never felt this uncomfortable and estranged from my body. That evening my wife called the doctor.
No, we couldn’t come to see him, I could barely stand!
Half an hour later the emergency doctor arrived. His booming voice made me vomit as he asked me to sit up so he could examine me.
His conclusion: I had an inner ear infection. Lousy, but it would pass in a couple of days. The spinning was just caused by the proximity of the balance organ to the infection. The loss of hearing was linked to this. His advice: try to keep still, take it easy and you’ll be fine.
The first few days were terrible. It took me a couple of days before I could get up unaided and then not without difficulty. I phoned my GP but, without looking at me, she said I’d be fine but to go in if I was worried.
A few days went by, the spinning decreased but the deafness remained. I made an appointment with the GP, this was the third doctor in a week since my regular GP wasn’t in. Since my balance seemed to be improving he advised I stay at home and rest and see him again after a week.
He wasn’t worried about the lack of hearing as he said this can take a while to return. I wasn’t very convinced but thought I’d sit it out for another week.
That week I ventured outside a couple of times, chaperoned by my wife. Having a wider horizon and more things to keep focus on than indoors meant that keeping my balance was even harder than indoors.
The sounds of traffic and people made me dizzy. I didn’t know where the sounds were coming from and couldn’t turn my head to have a look. I zigzagged slowly over the sidewalk, trying to stay near things to hold on to.
I could feel the stares and people thinking, “He must be drunk, but at 1pm?”. Someone tutted as they pushed by me. I didn’t have to just deal with my own condition, but also how others saw me. I normally don’t care much about what other people think, but it took some effort to ignore the stares and glances.
When I returned to the GP a week later, my balance had improved slightly but it was no where near what it should be (8 months later it still isn’t settled to what will become its best possible setting). I still couldn’t hear anything from one ear.
The GP called the hospital and I was given an 8am appointment the next morning. I was at the hospital for six hours having hearing tests, blood tests, balance tests and MRI scans. I was told that the hearing nerve in my left ear had shut down.
This ‘Sudden deafness’ (for more information see: Losing your hearing suddenly)), can be accompanied by the loss of the balance organ in the affected ear, and so it was with me. In many cases (such as mine) the cause remains unknown but the damage is permanent.
Sudden deafness and loss of balance are often initially misdiagnosed or undiagnosed. In my case it took two weeks to be diagnosed.
Hospital tests showed I never had an infection, so the three GPs I saw and spoke to were completely wrong. Although the specialists at the hospital would have rather seen me earlier, chances are they wouldn’t have been able to do much anyway.
The first few weeks were hard, especially after my diagnosis. The brain adapts to the loss of balance by finding new ways to rely on sight, sound and touch. The loss of hearing made this process more difficult.
However, before I got some decent balance back, I couldn’t even really begin to handle or understand the practical implications of the hearing loss because life was nothing like what it was before – for the first two months at least.
I was unable to do many things, one of the worst of which was my inability to listen to music and play my guitar. I could only tolerate soft whispers in the house, with one person speaking at a time.
But somehow I remained positive. It’s amazing how the body adapts and you learn to cope. The successes in the first few weeks were very basic but they kept me going. Each small step forward was an achievement: the first time I was able to walk around the flat unaided, have a shower, make some coffee.
Then there was woodworking. I’m obsessed with it. Since I use a lot of handtools and the work is fairly quiet, I thought I should give it a go again after a few weeks had passed. I had been apprehensive about this, as I was so upset about the loss of music, I didn’t want to lose something else.
But I found that it was a great way to relax and keep myself busy. My doctors told me that staying busy, and stimulating the brain is the best path to recovery. In my case I had my hobby to help me. I heartily recommend this approach to anyone reading this who is going through or has gone through a similar experience.
The first month is intense, but if you can keep yourself busy it’ll help you get through it.
Robert Nieuwenhuijs is a Japanese born, native English speaking Dutchman currently living in the Netherlands with his English wife. He works as a project manager and is a part time woodworker, making everything from guitars to spoons. In June 2013, at the age of 38, he lost his hearing and the use of the balance organ in one ear. He writes about his woodworking experiences on http://handguitar.wordpress.com
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Jean Straus
May 29, 2014
Dear Robert, I experienced a similar story, losing much hearing in my left ear along with dizzy spells over two years. Then suddenly my right ear stopped working, turning the bad left ear into the good ear. I believe there is a larger context here. Doctors are cavalier. They know little and when they become involved, they work to rule out more sinister conditions, like a blood clot. Once free of such conditions, they have to let you go, in my experience, with a shrug. There isn’t the money or the push for research, and the emotional support is limited, ie cultivate your garden, mate. Fortunately for you, you have a “garden” in your hobby, and I started doing work for Action on Hearing Loss.
handguitar
May 30, 2014
Jean, after all the tests it was indeed a case of cultivate your garden. I told one of the doctors this and they did point me to some organisations that could provide support, but nothing I wouldn’t have found anyway after a five minute internet search. I was referred to a physiotherapist specialised in balance problems but it took months to get an appointment. And by that time my balance was a lot better. It is as you say a matter of priorities for the doctors, but it makes you feel a bit helpless. I am glad you found your garden. it’s so important to have that. Robert.
Emma Caswell
June 2, 2014
My Mum has had a similar experience and a colleague of mine. They were both diagnosed with labrynthritis. dizziness, any sudden movements making them vomit. My colleague was off work for 6-8 months and then only came back part time and had to have hearing aids. They both get bouts of it every so often, more so when stress levels are higher than normal. But its the hearing loss and the way people react towards you that’s just as upsetting as having the illness.