Going Downhill Fast

It's now been almost a week since I started to reduce my dose of Betahistine. The obvious first sign that all might not be well was the return of tinnitus, but in the last 48 hours things have been going downhill fast, and I've been reminded of many things which I forgot about during the last three months of relatively clear days.

On Thursday I awoke with a sense of pressure in my head which only got worse as the day wore on, though it never developed into a headache or migraine. It was the second of the week, the first being Tuesday. Many people with Meniere's Disease talk about the sense of pressure in their ears or head, personally I feel it's more the head than ears and although rarely it does feel like the ears rather than the head, usually it's the former. More importantly, my balance was not good and it was once again back to that feeling of having had a few glasses of wine, which I lived with almost permanently between July and October last year.

Korean bathrooms are often all-tiled affairs, wet and potentially lethal to the balanced-challenged, and it was during Thursday that the long-threatened accident finally happened; I misjudged stepping into the rubber bathroom slippers, one of which proceeded to move away from me at alarming speed with my foot still in it. A desperate attempt followed to steady myself by thrusting my hand out towards the tiled wall - a big mistake as it was wet, and my hand shot down the wall with my body following shortly behind it. The next thing I knew I was sitting on the wet floor, back against the wall, with the tap I'd banged into on the way down now on in a constant stream about an inch away from my left hip. I'd missed banging my head on the toilet and likely serious injury by a narrow margin and the tap stayed on for a few seconds while I collected my thoughts. It was another Meniere's accident, and I spent the next few hours with back-ache and limping.

I still wasn't well when today at my Korean parents' apartment I inexplicably fell asleep sitting on the couch, even though I can never normally fall asleep while in a seated position - unlike most Koreans. I was exhausted and I wasn't quite sure of the reason, but I began to suspect it was another side-effect. It's often considered that as a Meniere's sufferer's brain tries to work overtime subconsciously to maintain the sense of balance that the ear's balance organs are failing to provide, it adds to the conscious and mental fatigue of the person. In fact, something was wrong because I couldn't remember the seven-digit user ID for my main trading account in the morning - something so important and which I type so often it's normally printed on my mind - and later in the day I forgot which way to turn the kitchen tap for hot and cold, leaving me staring at it in a potentially infinite loop of mental effort until I snapped out of it after about twenty seconds.

While working at the computer during the evening, a ghost-image of the screen suddenly shot left and right, for a split-second leaving me with a double-image before normality returned. If I'd have blinked I'd have missed it, and I had to double-check myself for a moment because when I've had the 'visual quakes' before which mark the start of a full-blown vertigo episode, they are always absolutely real and never just a ghost image in that way. So this was new. I kept working but the focus of my eyes started jumping around and I began to feel sick in a way that you can while trying to read in a car. I went to bed and fell asleep, waking an hour later feeling a little better, but not much.

I'm struggling to write this, but what do you do? I don't give in to Meniere's and I do my best to fight it, to continue leading as normal a life as possible. It's hard to function though, no doubt about it.

So where does this leave me with my Betahistine? Well, it's intriguing isn't it, that a week after reducing my dose I've begun to reacquaint myself with so many symptoms I'd previously put out of my mind. But, like so many possible cause and effects with Meniere's, there's no smoking gun; it could be coincidence. Still, I'm going to stick to the reduced dosage one more day, but if I feel this bad tomorrow I'm going to have to go back to the 16mg dose I was on before, because if nothing else the feeling that I could throw up at any moment is driving me crazy - I've lost the tolerance for it I developed six months ago when I went through a particularly bad patch.

I realised something about my condition in writing this though. In medicine, clinical trials are undertaken to establish statistical proof, and post-market studies and real-world cases add to the proof of efficacy over time. Given the differing conclusions about Betahistine and Meniere's on a per-country basis, it's never a proof that was universally accepted - even in the UK where it is reluctantly dispensed. I used to build software to support clinical trials for a global healthcare company, so it's a concept I understand and have long-since accepted intellectually. But, I suddenly thought, if my condition were not subject to the rules of medicine but instead to the rules of law, would my conclusions be different? There is no absolute proof, no smoking gun, but can I say at this point that my reduced dosage of Betahistine has led to a deterioration in my condition? I think the case in moving beyond 'reasonable doubt', even if the clinical evidence can not be statistically proved.