Chrysalis

If my life was going to change forever, it would have been nice to have had a vote. Instead, one morning two years ago I found myself conscripted into a secret army of people with Meniere’s disease, and something as apparently innocuous as popping around the corner to the shops would never seem quite so mundane again.

I had my first attack two weeks after leaving a job with a medical company I’d been in for six years, so I was at home in front of a computer when the monitor started moving violently from side to side. Demonic possession was quickly ruled out when it became apparent that everything was shaking, and we don’t get earthquakes where I live, particularly not the sort that would shake the Earth apart. Obviously ill, I bravely crawled downstairs before dumping myself unceremoniously on the bedroom floor with a pathetic plea for help to my girlfriend who I hoped would deal with the situation better than I appeared able to. Five minutes later I was throwing my guts up in the bathroom, and because my vision wouldn’t return to normal, I decided to sleep when I wasn’t busy ejecting food and stomach acid. I thought it was the worst bout of flu I’d ever had.

Eight weeks later it happened again, but this time for four days, so now it didn’t seem like flu any more. A brief trawl of my symptoms through Google suggested a possible ear infection, and I could believe that. I’d developed what appeared to be a viral infection six months earlier, and I’d endured a serious tooth abscess - which my dentist didn’t manage to effectively treat - for nine months until then. My doctor concurred, hopefully not because he checked Google too, and I was put on a course of generic antibiotics. Personally I didn’t think it would do a lot of good; I’d been on the same antibiotics several times in the previous year for my abscess before my dentist gave up and pulled the tooth. If the ear infection had been with me for a while, it probably wasn’t afraid of the kind of pills doctors give patients to make them go away.

After I left my job I intended to build my own software business and daytrade the stock market (where I post under the bulletin-board name of Kyoto), devoting time to whichever earned me the most. Fortunately so far my illness had only disrupted my own time, but that changed in July 2005 when I found myself working on a client project while experiencing bouts of unsteadiness. I remained ill until the end of September, but managed to finish the project just before another vertigo attack initiated a week of hell at the end of which I was so dehydrated from my inability to ingest even water that I nearly had to call out a doctor. I had so many strange sensations in my head that I was beginning to fear for my life, I was disoriented and appeared to be caught in one prolonged anxiety attack.

By this time my doctor had finally decided to refer me to a specialist, and I’d grown so tired of their inaction that I’d undertaken some serious research myself and put Meniere’s at the top of my list of suspects. I also knew that some of my symptoms fitted ear canal and brain tumours so I didn’t wait several weeks for the public health system to sort itself out, but instead ended up seeing the specialist privately in a few days. So much for paying my taxes. The specialist actually dissuaded me from paying several hundred pounds (about a thousand dollars) for an immediate MRI scan and instead I waited a couple of weeks and did it at the hospital. I was told if I didn’t hear back from them quickly it shouldn’t be anything to worry about.

So for the few weeks until I got the results I had to worry that the MRI would show up something positive. I tried not to think about it but at some level I prepared myself for the worst. In a curious way this helped, because when I finally got the news that I was clear of any tumours, nothing else could be as bad in comparison. It was three more months before I got my official Meniere’s diagnosis, which by that time was no surprise and almost a relief. At least I now knew, or at least, I thought I did.

In the year since my first vertigo attack, I’d had three further attacks, four months of milder balance problems, and three months of unaffected good health.

When the specialist told me I had Meniere’s Disease, I’d done enough research beforehand to ask him about dietary changes and treatment options; I knew this may well be the last time I saw him. He explained and discouraged me away from a couple of surgical options which was fine by me; I’m not a big fan of invasive medical procedures. I asked him about dietary changes such as reducing salt and caffeine intake, but he was unexpectedly dismissive about it – he clearly wasn’t convinced about the link. I thought there may be a lack of hard scientific data on this but I thought there was sufficient anecdotal evidence to at least make it a more seriously considered subject. I asked about drugs and he talked about Betahistine, but he didn’t seem to be too much of a fan of that either, and since he mentioned it was a steroid it triggered some caution in my mind too. He would send a note to my doctor to prescribe it to me if I came in and asked for it. I already had Prochlorperazine for nausea and there was no mention of anything else so it seemed to be pretty much the end of the road as far as progressing any treatments were concerned.

Once diagnosed, I did of course do quite a bit more reading about Meniere’s Disease. It became clear that while doctors in some countries were much more willing to resort to drugs and operative procedures, doctors in the UK were not. It’s difficult to know whether their reservations are based on medical or financial judgement, but I didn’t have many options unless I was willing to spend a huge amount of money on private treatments that might not work. So I made a few lifestyle and dietary adjustments and got on with my life.

Life was frustrating though. I suffered vertigo attacks in February, May, August and September, but the bigger story became my inability to shake off general balance problems; it was beginning to feel as if I lived on a boat, or as if I were permanently mildly drunk. I was lucky in the sense that I could continue daytrading as long as I could make it to the desk in my house every day, but in some ways it may have been a double-edged sword; if this had been affecting a job with an employer I might have had to face up to the potential enormity of Meniere’s in a way that I otherwise hadn’t needed to. As it was, I shut down my business and went out of the house less, but I still worked, and that got me through things.

The problem was that I eventually had to face up to things. My girlfriend needed to go back to Korea for a while, and I needed to go with her. Suddenly, I faced the prospect of uprooting my comfortable life and travelling half-way round the world to live in a unfamiliar society where I didn’t speak the language. I’d reached a point psychologically where going out to the shops was a major adventure, so aside from anything else fourteen hours of flying over two plane journeys filled me with dread. I was leaving behind my job trading for myself and I was too ill to do anything else such as teach English in Korea, so I felt useless.

I’m facing up to the idea now that I might have to live the rest of my life like this, and it’s a difficult way to live. Coupled with increasing amounts of pains I’ve been getting in my neck and shoulders for three years, I’ve come to the conclusion that even though I’ve been diagnosed with Meniere’s I should get a second opinion, so I intend to let the Korean doctors have a thorough look at me when I get there. It probably won’t yield anything new, but the trouble with Meniere’s is that sometimes I think it’s what doctors diagnose people with when they can’t be bothered to look any further.

To that end I finally decided to keep a health diary so I could make notes on my symptoms each day, and this in turn led me to write up my experiences over the last two years as a summary of what I might have written, had I decided to start one earlier. From this, I suppose I’ve come around to the idea of keeping a Meniere’s blog, partly because it might add something to other peoples’ experiences, but mostly for myself; I think the process is therapeutic. I also hope that some of my friends might read through my experiences from time to time, and understand why I am so amazingly unreliable these days. Keeping friends when you have Meniere’s Disease is a difficult challenge.