A Break

So the plan to reduce my Betahistine intake didn't go well, and I resumed my normal dose. About a week later, I tried another reduction, but this time I moved from 48mg a day to 32mg, and then down to 24mg and finally 16mg, and the feeling of illness didn't return.

In fact, I had a run of four to five weeks when I felt absolutely fine with no sense of instability in my balance at all, and I had so many 16mg I didn't see the need to reduce my dose any further for a while. My life settled into a rut, but a good one for a change, and as always I was so busy I didn't get around to writing about the dosage experience. As usual, the return of balance problems in the last week has focused my mind on Meniere's so here I am again.

My latest episode isn't terribly bad, but in the last few days my right ear has been popping and crackling on a regular basis, I have the sense of fluid-fullness in my ears and head, loud noises bother me and at the same time I don't feel I can hear properly either. Despite this, I'm managing to keep to my normal routine so far, and the major vertigo attack that I feel could hit any minute has fortunately not transpired.

Ironically, my 8mg Betahistine tablets, which I'm down to taking two of a day, are now running out, and I probably ought to cut down to 8mg a day before finally finishing them. I did investigate the possibility of obtaining further supplies in Korea, but it appeared difficult if not impossible, and despite the fact that I've been taking them for six months I really can't say whether they've proven effective or not. Starting to take them did coincide with a marked improvement in my condition, but I also had a radical change in lifestyle at the same time - either of them could be the reason and it could even be coincidence - though I'm less convinced of that. If things go badly wrong once I'm off them altogether - or my current problems don't go away again, I will probably try to find a way of taking Betahistine again.

Retreat and Regroup

On Sunday morning at 4am I gave up trying to sleep, and got up to take another 8mg Betahistine tablet - my third in 12 hours. I had spent Saturday evening and the time up to this feeling nauseous, which coupled with the loud tinnitus in my right ear was preventing me sleeping. I had tried the usual tinnitus trick of keeping the TV on (in the UK I used to leave the radio on all night), but it didn't work this time. I finally slept from 5am, but awoke at 8.45am with the sound in my right ear muffled and feeling sufficiently sick to get me out of bed to make a drink.

I decided to take my Betahistine dose back up to 16mg per time by taking two 8mg tablets three times a day, and I'll probably keep this up for a week and see if there's any sign of improvement. If there is, then it's more circumstantial evidence in support of the link between this drug and my personal health, and more practically, I'm going to have to make a serious effort to obtain some more even though it doesn't appear to be available in this country.

So I pulled myself together with some difficulty - I showered but passed on shaving for a second day - and went out for lunch with my wife and her mother - checking that I had my anti-vomiting pills with me that I know should be in my wallet at all times but sometimes you need the comfort of seeing them there. My only condition was that we went somewhere nearby we could walk to. For the first time in months I experienced genuine stress at the idea of leaving the safety of the apartment - I'd forgotten how I used to worry about every excursion no matter how small when I went through my bad patches in the UK. There's no doubt in my mind that stress is a legitimate reaction in a Meniere's sufferer to the knowledge of what might face if they should have an attack in public, but I always worry about locking myself into a Catch-22 downwards spiral of not going out of fear, and gradually winding myself up to a point where I never want to step out of the door again.

Anyway, despite my efforts I was a bit too tired to be good company over lunch even though with some food inside me and perhaps some exercise I began to feel my symptoms easing.

In the afternoon I was sufficiently revived to finally get around to shaving, but by the evening the sense of pressure in my head had escalated again and even though I kept working at my computer it wasn't easy. I tend to write a lot but it's especially hard when the brain-fog descends, and there have been times when I've come back to something I've written while suffering symptoms, which has just been a grammatical or intellectual mess even though it seemed perfectly coherent at the time. Sorry if this is one of them.

While things might not sound too good it's important to note that I'm still functioning, and I know that's a lot better than things could be.

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.

Tinnitus Returns

It's strange how easy it is to forget things when they go away. I've suffered from tinnitus throughout my time living with Meniere's, although I wouldn't describe it as bad - I get it in the mornings and late at night when it's quiet, lying in bed. Sometimes I get the noise during the day when I'm in a very quiet place. Otherwise, it was never the topmost issue on my mind, considering I was having regular attacks of vertigo and a regular lack of balance in-between. I have to say in retrospect, I'm fairly sure I was getting it for a few months before my first attack - I just really didn't think about it seriously.

In the last few days I've reduced my dosage of Betahistine, and whether by coincidence or connection almost immediately the tinnitus returned every morning. The first day was coincidence, the second a suspicion, the third a pattern. As for the cause, I can't point the finger at the dosage with conviction, but it is odd. My limited understanding of tinnitus - and something I'll have to go and read up on - is that when it's 'audible' it's very slowly damaging the hearing system, which I need to prevent. On the other hand, if it isn't the sound of very slow damage occurring, then I can live with it as it is and I don't need to increase my dosage again purely for the sake of what is a very minor irritant to me in the grand scheme of things.

Betahistine Supply and Reduction

After some investigation, it turns out that Betahistine, which I started taking four months ago in the UK in an attempt to control my Meniere's episodes, is not available in Korea - or at least, not as a separate medicine, although it is included within other medicines. That of course though, is hardly a solution.

I've been a lot better since arriving in Korea, and while it's not been perfect health it's a considerable improvement and one I'd like to keep. But as I've written previously, the reason or reasons for my improvement are not clear and despite it being a subject of considerable debate in my mind, there really isn't an answer right now. However, the inability to obtain further supplies of Betahistine while here is going to mean coming off the drug, something I have been increasingly resigned to happening, at which point I will have to see if my condition deteriorates again.

I've been taking 16mg tablets three times a day, which have just run out, so now I'm on 8mg tablets three times a day. I'm not sure whether I need to phase out the dosage gradually rather than just stopping, but that's my plan anyway. It will probably be another three months before I finish what I have, but I may aim to stop after two. If my health does deteriorate at that point, it gives me another month's supply to start taking again while I try to find a way of obtaining more pills, either from within Korea or outside it if necessary.

Feeling Better: More Sleep?

Because of my home-based job, in the UK I had to get up at 06:30 every morning and start work. Despite this, I'd usually be up after midnight and the net effect of this was that I got about six hours sleep every night. It seemed like enough.

After arriving in Korea the jet-lag hit and although I went out every day, there was a lot of sleeping at odd hours of the day for a few days until my body adjusted. I still work to UK hours, which means I stay up now until 2am, but since there's no pressing reason to wake up early, until recently I've been getting out of bed around 10 o'clock. So in Korea, the amount of sleep I've got has increased, probably by at least an hour and maybe by as much as two.

I don't know if this has contributed to the improvement in my Meniere's symptoms, or whether it's any of the other reasons I've cited, or a combination thereof. But in the two years I've suffered from the illness, I've never gone from such a bad period to such a good one so distinctly, and it makes me feel like something changed, and there must be a cause.

Of course, it's possible it was just coincidence, and that even if I'd stayed in the UK I was destined to go through this good period anyway, though it seems unlikely.

Feeling Better: A Change of Diet?

In the latter stages of my time in the UK I started trying to monitor my sodium intake quiet closely, but I don't think it was terribly successful because it was such an admin overhead. I guess you could say that my diet was typically Western, with too much junk food and not enough fruit and vegetables - I averaged about three portions a day instead of the recommended five.

I've found that Koreans like putting a lot of salt in many of their dishes, but I quickly taught my host family not to do this when they cooked for me. It's possible then, that my sodium intake has reduced considerably, but I have no practical way of effectively measuring this. Inevitably, my diet has switched to a more rice and noodle based one, which perhaps was more healthy anyway. I still don't think I'm eating enough fruit and vegetables though.