Kyoto Quakes

A Break

2007-04-20T05:58:00.001+01:00

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

2007-02-11T23:36:00.000Z

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

2007-02-10T16:22:00.000Z

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

2007-02-08T04:25:00.001Z

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

2007-02-06T03:16:00.000Z

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?

2007-01-15T02:57:00.000Z

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?

2007-01-15T02:52:00.000Z

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.

Feeling Better: More Exercise/Activity?

2007-01-15T02:44:00.000Z

Since arriving in Korea, there haven't been many days I've been stuck at home in my apartment. In fact, most days I've been out for at least a few hours, if not longer, rushing around from district to district in the large city of Busan. I've hiked up one mountain, but aside from this there hasn't been much physical exertion, but there has been an awful lot of walking around. This is much more exercise than I got in the UK, especially considering that since developing Meniere's, I've spent a lot of days housebound because I felt too ill to risk going out.

And therein lies another possible Catch-22 situation. Since arriving in Korea, I was determined to go out as much as possible, and not spend my time in the country stuck inside. Did I end up feeling better because I pushed myself, and took the risk of having an attack in public, which I worked so hard to avoid back home? If that's the case it suggests that I shouldn't surrender to the days when I wake up feeling rough, but just go out anyway and take my chances. I suppose that's what I've been doing anyway, but whether it's coincidence or not I just don't know.

Feeling Better: Reduced Stress?

2007-01-15T02:37:00.000Z

I thought it worth going into a little detail on the possible reasons I have been feeling better in the last three months.

While being in a foreign country where you don't speak the language carries its own stresses, it's nothing like being somewhere where you are ill but still the primary breadwinner of the family, dealing with all of the household's administration and dealings with the authorities as I was. And although I still try and do some work and earn some money, it's nothing like the way it was back home, so I feel like my stress levels have reduced considerably.

In the past I've found stress and Meniere's, for which I think there is some medical evidence to demonstrate a causal relationship, is actually symbiotic. In other words, Meniere's symptoms cause stress, and stress contributes to the symptoms of Meniere's. So, it's a Catch-22 situation where it's easy to end up in a downwards spiral of health - and I certainly feel like I've been there.

I don't think the solution is as simple as taking a holiday though. I know many of the reasons for my stress over the last few years in the UK were the kind of things that would still have plagued my mind even when taking a break. I suppose that's part of my character - other people may be able to better compartmentalise their problems and benefit from time away from them.

Shutting down my company, my house and to a large extent my life in the UK greatly reduced my stress levels, but it was only by making substantive changes in my life that I was able to accomplish this.

All Quiet on the Eastern Front

2007-01-15T02:18:00.000Z

It's been some time since I updated this blog, and in large part it's been down to a remarkable turnaround in my health since arriving in Korea. Prior to my move, I'd spent three quite poor months with Meniere's, suffering from a near-constant feeling of imbalance and dizziness, although I managed to avoid outright vertigo attacks on the whole. Even so, faced with a choice of vertigo attacks interspersed with good health, versus no attacks but constantly feeling like I was mildly drunk, I'm not sure which is worse.

Just before coming to Korea, and increasingly worried about the thirty-hour journey I would be making to get here, I went back to my doctor and got a four-month supply of 16mg Betahistine tablets, which I started taking immediately. I didn't notice any immediate difference, but with the considerable stress of emptying my house in the UK followed by my long trip and jet-lag, I probably wasn't going to feel very healthy even if I didn't have Meniere's. But within a few days of landing, I started to feel much better.

I've now been in Korea for three months, and aside from two minor vertigo attacks I've had a lot of 'perfect' days where I didn't feel any effects of Meniere's at all. I went through a couple of similar good patches in the UK which probably lasted two or three months each, but it has been several months since the last one.

But is it the Betahistine? I think I've read that in the US, where it's commonly known as Serc, they believe it ineffective for Meniere's and won't prescribe it. I don't think the doctors in the UK are that convinced either, although they do at least let patients take it. It's possible that the sudden turnaround in my health could be one of a number of other factors including reduced stress, more actvity/exercise, a change of diet, and more sleep, which I seem to have had since arriving here.

The Korean Bathroom

2006-10-22T04:22:00.000+01:00

I think it's hard for people to appreciate some of the subtler aspects of living with Meniere's Disease. My Korean bathroom will seem fairly average to most Koreans, but to me it is the place I'll have to live with next time I have a serious Meniere's episode.

As is the typical style with Korean and Japanese houses, the bathroom is fully tiled and bathroom footwear is worn inside. The floor is considered unclean and will usually be wet from the previous shower - since there is no separate shower cubicle and the water flows over the entire floor where it is drained off.

When I have an episodic attack in the UK I like to slump on the bathroom floor in-between bouts of vomiting, but that will not really be possible here. In fact, really I need to try and stay on my feet or crouch down while throwing up in the Korean bathroom, which will just add to the misery of the experience.

I'm not looking forward to my first serious attack here.

The Journey

2006-10-21T04:22:00.001+01:00

The journey with my girlfriend to South Korea began at seven in the morning, but we'd been up since five packing. In fact, we hadn't gone to bed until one as we'd been attempting a final clear-out of the house. Things had turned out as I had expected - Meniere's had got in the way of my already tight project plan and along with a few other unexpected events had conspired to leave me unable to do everything. Pieces were left for my family to pick up after I was gone.

The first flight of the day - and my first since developing Meniere's, was noisy because we were at the back of a Fokker-100 about six feet away from one of the engines. Along with a little turbulence this did nothing to make me feel any better. I noticed that every slight movement of the plane felt massively exaggerated to me even though before we took off I felt I was having a reasonably good day. Fortunately an hour later we were on the ground in The Netherlands.

We spent six hours in the airport walking around the various shops, so by the time we were ready for our long-haul flight to Asia I hoped I would be tired enough to sleep through it. After all, with only four hours sleep the night before, and almost twelve hours of travelling and walking already behind me, I felt like I should be tired. In the event though, I didn't quite manage to fall asleep before the 747 took off and this is where my problems really began.

The moment we took off I felt my stomach sinking and the feeling didn't stop for another twenty minutes. I knew I was in trouble now and desperately tried to fall asleep before a vertigo attack set in. It was a battle I didn't win, and I was forced to keep my eyes closed in a final effort to deny the fact that the seat in front of me, and everything else on the plane, was swinging wildly from left to right. Despite taking Buccastem all day I detected the tell-tale signs that my stomach was about to eject its contents and sure enough my instincts proved correct. Fortunately I'd already eyed up the location of the sick back on boarding the plane so it was over my mouth in a flat second. Even so, I still managed to throw up over myself a little. I was sick quite a lot and was fortunate that a tuned-in Dutch girl helped my girlfriend by passing over her sick-bags and some tissues she had.

I think it's the first time that I was ever sick with Buccastem when I'd taken it early enough, so it was very disappointing to realise I didn't have a magic solution to that problem. I'd worried about being sick on a plane since I developed Meniere's, but I think a lot of that worry was about the public spectacle. In the end, I have to say that I felt so ill I really didn't care what anyone thought - at least, not at the time. I tried to sleep the attack off but this was largely unsuccessful - in the ten hour flight I probably slept no more than an hour-and-a-half.

The attack did calm down after a few hours and by one in the morning I was well enough - and brave enough - to try the in-flight meal which I'd wisely foregone just before throwing up. In different circumstances I wouldn't have chosen to eat quite so quickly, but I knew I needed to because there was still a long journey ahead and I needed some strength.

Over the Gobi Desert as the sun rose I walked the plane and properly rehydrated myself with large amounts of fruit juice while talking to the flight attendant responsible for our section, who told me not to worry about my experience - though I doubt it was one of the recent highlights of her career. I even got the chance to apologise to the Dutch girl before we landed and explain I had a medical condition - though I don't know whether that counts in my defence or not; perhaps it's worse to get on a plane knowing the effect it could have on you. She was very nice about it though and I'm really in her debt for being so understanding - I'm sure it won't always be the way.

On the plane I had something of a revelation about my condition - but not a positive one. I realised that had my attack persisted for a day or two - as they are often prone to do - there would have been no way for my journey to immediately proceed despite our plans. Somehow before the trip I'd conned myself into thinking there wouldn't be a problem or that if there was, I'd muddle through it somehow. The reality of the attack forced me to face up to the fact that hiking around the streets of Seoul between stations would be impossible while suffering an ongoing vertigo attack. I've no idea what I was thinking to believe otherwise.

In retrospect, I was very fortunate that for the remainder of my journey, which involved a bus to the centre of Seoul, a walk through the city centre, a train down to Busan and a taxi-ride straight out of The Fifth Element, I was fine.

The next time I make this kind of journey, I'm going to do things differently. I've decided that wherever possible I'll take direct flights from now on, even with the expense, because you can't put a price on convenience when you have Meniere's. I'll also bring more tissues and sick bags with me. In a broader sense, insofar as I have to make various connections I'll do what I can to create contingency plans - such as knowing where to stop overnight or mid-journey should I have to.

It was a learning experience, and staying in Busan for three months makes it worth the effort, but I wouldn't have wanted to make such a journey for the sake of a short holiday. I can't say it's made me more likely to travel in future because it hasn't, but it also hasn't completely put me off the experience despite my very public illness.

Travel Insurance, Finally

2006-10-11T14:00:00.000+01:00

I finally got my travel insurance sorted out today. It hasn't been an easy experience. Aside from the airline requiring a fit-to-fly certificate, I of course needed specialist insurance cover as none of the major companies I contacted would touch me. All is not lost in the longer run though - Norwich Union said that they should be able to cover me if my diagnosis was not in the last twelve months. It has been ten months which ruled them out - but perhaps next time I take a trip they may be a viable option.

What Norwich Union did do is put me in touch with Staysure - a specialised insurance provider which required that I go through a long telephone-based medical questionnaire on a premium rate phone line. Once done I did get six months cover at £191, which was only about £30 more than I was being quoted for normal cover by the big companies. It's a fair bet though that a smaller non-specialised company would have been cheaper than that.

In the end, while I needed specialist cover, Meniere's is clearly not so bad that I needed to pay a premium on top of their standard charge. But I'm glad that I took it out because I really couldn't take the risk of not having any cover while on my travels, and there is always a chance that in the event of a serious attack I will require some medical intervention - or some will be sought before I have the chance to assure those around me that my condition is nothing to be too worried about.

The Fast Lane or The Quiet Life

2006-10-07T21:06:00.000+01:00

By coincidence my Meniere's began shortly after I left my job to become a self-employed daytrader, so most of the struggles I've had with my illness have taken place in the privacy of my own home. I can't pretend it's been easy to live with, but I think I've been fortunate because of my lifestyle, so I've never been particularly depressed because the compromises I've had to make have been relatively minor.

A great deal of work has gone into the business of moving to another country. There were objectives to achieve with immovable deadlines, which was more akin to a normal job than to my functionally repetitive daytrading work, and herein lies a problem. The timetable has slipped hopelessly as I have proven unable to work for both physical and mental reasons, so my affairs at home will not be neatly ordered when I leave, far from it. The experience has left me intellectually and emotionally exhausted, and for the first time since my diagnosis, I realise I am thoroughly fed up.

I have tried to rise up to the challenges facing me recently, and I haven't always succeeded. I thought the victory was in the attempt to keep pushing the boundaries of what I can do, but I've been miserable for the experience. What's the point in pushing myself to go to Leeds and Manchester, and do all these other things, if it just makes me hate my life because of it? In fact, the second line of Staying Positive with Meniere's Disease (from the Meniere's Society) says: 'Get used to living life at a slower, steadier pace. Find your own level.'

I have gone through periods in my life when I have lived it in the fast lane, and some other periods when I've led a much quieter existence. Both have had their appeal in their times. Now I'm beginning to ask myself a different question though, which is whether I need to make a conscious decision to opt for a quieter life in future - at least in the times when my Meniere's is bad. If I am to avoid feeling miserable that may be the life I need.

Fit-to-Fly Again

2006-10-06T22:11:00.000+01:00

I was back at the doctor's today to get the fit-to-fly certificate and some more pills. My condition was a little better, so she agreed to write a fit-to-fly letter for me - but if I had looked as ill as last time I saw her she wouldn't have. Although I knew I needed a letter for the airline, I never really allowed myself to think that this would prove impossible - now it seems that I came close to another crisis with this. If the worst had come to the worst, I was going to see my consultant, but I'm not sure I would have had the time now, with only three working days left before I am due to go to Korea.

The seriousness with which the doctor has taken this matter made me reflect again on my fitness to travel, and I'm beginning to think it could be a very bad idea. The trip was planned in better days, and the last three months have not been good, which puts a different perspective on such ideas.

As the day of my departure approaches, my life has become increasingly chaotic as I attempt to complete a large number of prerequisite tasks, and it's only adding to my woes. In the last two days I have travelled to Leeds and Manchester while feeling quite unwell, and while I like to think there's something heroic in pushing myself to the limit, the truth is that it's been exhausting and miserable. The Korea trip may well be exhausting and miserable on a much grander scale, and it will not end there; much travelling will be required afterwards and there are trips to Seoul and Japan scheduled, not to mention everything that needs to be done to live in Korea for a few months.

The Danger of Showers

2006-10-03T08:16:00.000+01:00

I've found that showering has become a particularly dangerous occupation since developing Meniere's. Some days it's hard enough standing upright without swaying around, but add in a slippery surface, steam and soap getting in your eyes and it begins to feel like a game of Russian roulette. I know that sooner or later, especially as I get older, there's going to be an accident. I suppose this means that showering is yet another aspect of my life that I need to re-evaluate. I should probably buy one of those rubber mats you can put inside a bath - but it may not be enough.

The Drop Attack

2006-09-29T07:35:00.001+01:00

I had what may have been my first 'drop-attack' yesterday. I was walking into the bathroom when I suddenly felt myself falling backwards. Trying to compensate quickly I pushed myself forwards - only then realising my sense of falling back was probably false. Somehow in the midst of this conflict I slumped to the floor slightly hurting my left hand and ankle in the process. I actually have no recollection of the process of falling to the floor, but perhaps that's because it happened so fast rather than through me blacking out momentarily.

8am's the Problem

2006-09-28T12:09:00.000+01:00

I've now had nine episodes of vertigo attacks - and a lot of instability in-between - during the last two years. One was in the middle of the night and another happened early Saturday afternoon. The rest have all happened in the morning between 07:30 and 09:00, which seems statistically significant.

To be fair, I start my job daytrading at 06:30 - or 07:00 if I'm tired - and although I don't consider my job overly stressful, the first couple of hours is often when nerves and adrenalin are working their hardest. If this is a strong contributing factor to my attacks then there may be some lifestyle changes I can make to help myself.

Now that I'm keeping a more organised daily health diary of how I'm feeling, my sodium content and so on, I intend to make greater efforts to try and identify any commonalities in my attacks in the name of lessening the risk of further ones.

Bang Bang Bang

2006-09-27T16:57:00.000+01:00

I've had one-and-a-half perfect days, which probably makes around seven since July. So I've been quite happy about it, and began to let myself believe that the Betahistine might be working.

I'm having some work done in my house, and the builder spent ten minutes in the attic where I was working banging away at an old water tank he was removing. I didn't think anything of it, until a few minutes later when I began to feel quite ill again. I was just beginning to forget what instability felt like so it came as a bit of a shock, especially as I don't usually have these rapid deteriorations during the afternoon.

I didn't make the link, but it was my girlfriend who said she thought the loud banging noise had caused me to suddenly feel unwell, and I think she might be right. Now I'm not feeling so well and I'm not so happy, but maybe I've just learnt that I need to avoid very loud noises in future.

The Migraine Link

2006-09-27T16:43:00.000+01:00

I started working through the materials sent by the UK Meniere's Society today, looking for any information I could find about flying. I didn't get very far before I found something else which was rather surprising.

It seems that 20-25% of people with Meniere's have a past history of migraines which started in adolescence and then diminished in severity in middle age, at which point their Meniere's developed. I started getting migraines when I was 14 and I probably had one every one or two weeks. At 34 these migraines became very infrequent, perhaps I might have one every couple of months, and I put it down to leaving my job around that time which drastically reduced my exposure to fluorescent lights - which I felt had always strongly contributed to their onset. But, if 34 can be described as middle-aged (although part of me hopes not), then this common pattern linking migraines and Meniere's matches me exactly.

It's curious that of all the information I've read so far on the Internet, I never came across this before, so I don't know how universal the agreement would be on what the Meniere's Society print in their frequently asked questions sheets. But if there's a link, I think I am another statistic to add to the case.

Unfit-to-Fly?

2006-09-27T15:16:00.000+01:00

I got a call from my health centre today - and I was rather surprised to be told that the doctor wanted to see me next week regarding my fit-to-fly letter; I expected to be just given one - after all, Meniere's can make me really sick, and it does almost completely incapacitate me when I'm having an attack, but it's not as though my life would be in danger if I flew. It just might not be a pleasant experience.

I was advised by the doctor's proxy to talk to my airline and my travel insurance company about my condition, but clearly I will not be in a position to buy insurance until I have a doctor's letter in my possession.

It seems that my doctor may be worried about my fitness to fly, presumably after consulting with colleagues, and perhaps she wants to see me again to make sure I no longer look like the nervous wreck I did the day after my latest full attack last week. All in all, it's a rather curious state of affairs though, and not what I expected at all.

Shopping for Sodium

2006-09-26T20:16:00.001+01:00

I've made it to the supermarket today, and I find myself shopping for sodium - instead of just ploughing through the isles buying the usual items, I'm taking the time to read the salt content on the back of each package. There are some surprising results, such as the naan bread which has 1100mg per piece - I might not be eating that again in a hurry.

I think it's very hard at first to work everything out and then keep track of it day by day, and I haven't managed that this week, but I hope that as time goes on I'll begin to learn what to buy and what to avoid. It's clear I'm going to have to change my diet significantly, but once this has embedded itself in my subconscious, shopping should become a much easier task. Perhaps I might even end up eating more healthily, so this could be a real opportunity for Meniere's to impact my life in a positive way for once.

Meniere's Society pack

2006-09-25T10:43:00.000+01:00

I honestly didn't know what to expect from joining the UK Meniere's Society, but it felt like the right thing to do - I suppose I just took a punt on it.

This morning an enormous stuffed envelope arrived which I guess you could say is a sort of welcome pack. The first thing which really stuck out was the membership card on the opening letter which along with my membership details has a space for an emergency contact to be written. The flipside of the card has "I suffer from meniere's disease - Vertigo + Tinnitus + Deafness" in large letters. It's a nice idea although as I don't appear to suffer from the kind of drop attacks which might render me unconscious or incoherent it probably won't have any practical use. It's credit card sized but much thinner so it could get a little worn if carried around regularly.

I'll have to get around to reading the rest of the information later.

Walking Into Doors

2006-09-25T10:01:00.000+01:00

On my bad days I'm not very spatially aware, but it's a bit more specific than simply being clumsy; I'm turning walking into doors into an art form. So this morning I have yet another cut finger on my left hand.

It's always my left shoulder or arm which catches the edge of a door-frame or doorway. I'm ashamed to say that despite all my reading into the subject, I don't know whether I should attach any particular significance to this - perhaps it fits in with my suspicion that my Meniere's is unilateral in my right ear. While it would be interesting to know whether I was unilateral or bilateral, I've been so ill in the last three months it doesn't feel like it matters to me at the moment, though it is an issue for the future.

The Curse of Social Gatherings

2006-09-24T15:49:00.000+01:00

I went out for a class reunion yesterday evening, but I wasn’t feeling very well so I knew it was going to be an effort. Fortunately I managed to get through the evening, although I had a couple of moments when I felt particularly unwell and I was generally rather unsteady on my feet. I felt a lot better towards the end of the evening though – I don’t know if I got a boost from eating, whether it was the Betahistine I took immediately after eating, or whether it was just one of those things. I was irrationally annoyed later that I couldn’t have felt as good as that all evening, but that’s the way Meniere’s is.

On the subject of the meal, it was not an auspicious day to begin measuring my sodium intake. I chose to eat pasta with vegetables, salmon and bacon… yes I know, the bacon was the weak link, and it certainly was salty, but I ploughed on regardless, so really I’ve only myself to blame for any consequences – if indeed there are any. I have to also add, that with my focus moving around rather more than I would like, the task of eating publicly took a great deal of my concentration and was not a very enjoyable experience. I don’t know whether it’s really wise to push myself to go out when I’m so under the weather, but the impending journey to Korea puts a four-mile round trip to the pub with friends into perspective.

Another thing I hadn’t quite thought through was the potential consequences of my hearing difficulties. I explained to my friends at the start of the evening that I had gone a bit deaf in my right ear, but that’s a gross oversimplification – more than anything I find it difficult to differentiate between foreground and background sounds. I suppose the effect is the same, if the reasons are more complicated. But the trouble was that I think I must have appeared to ignore people once or twice, or perhaps worse, I didn’t laugh at their jokes when I should have. There was quite a bit of polite smiling at conversations further away on the table which I was, in truth, struggling to follow. It occurred to me after an early faux pas that if I wasn’t careful Meniere’s could lead to me losing friends.

I was glad when one of my friends told me that he’d read up on the condition when I’d told him I had it. It makes me feel that it was a good thing to have decided to be open about it, if not a little too open, in the name of public education. Still, while I did once ponder on this subject for some time, had I tried to keep it as private as possible, I suppose people would have started to think I was seriously ill or on drugs or something... so perhaps there really wasn't any choice.

Is Prochlorperazine Such a Good Idea?

2006-09-23T11:02:00.000+01:00

You lose a lot of salt when vomiting, and conventional wisdom states this isn’t really a good thing, especially if there’s a lot of sickness. But the revelation over my possible salt intake started me thinking about my prochlorperazine anti-nausea tablets again. I often feel better after vomiting, what if it is related to there being lower salt levels in my body afterwards, especially if my salt levels were high to begin with?

I wish I’d thought of this yesterday when I saw a doctor because I could have asked about it, but then I’m not sure I’d have trusted any answer I got anyway. Without being reckless, perhaps I need to figure out what works for me and go with that.

Bagelled

2006-09-23T10:07:00.000+01:00

Because I’ve been quite ill recently I’ve done a lot more reading into Meniere’s, and the two big dietary issues of cutting out caffeine and reducing salt intake come up again and again, even though specialists in the UK generally seem more sceptical of the link. Despite their scepticism, I’d cut out caffeine three months before my diagnosis on suspicion of Meniere’s, and since I’d never been the type of person who liked using salt in their food I thought I didn’t have to worry about it. Still, after recent events, I started to think I should consider the sodium issue more carefully.

I’d read that 1000mg of salt per day was a good target to aim for, and without worrying about it too much started to make breakfast while reading over the ingredients of what I was preparing. One bagel, 0.7g. Now wait a minute, I thought, surely that can’t be right? Has a single bagel just consumed 70% of my daily allowance? But there was little doubt about it – the ingredients on the bagel bag were quite specific – 0.7g per bagel. With a little margarine on top I estimated this was another 0.06g, so it wasn’t even 8am in the morning and I’d already reached 760g. I was stunned. How much salt had I actually been consuming every day before now?

I realised this is now a serious issue for me to monitor, but I felt there was a bit of eye-rolling when I discussed it with my girlfriend. How could I live my life like this? Wouldn’t it mean I could never eat out in a restaurant again? I told her that the way I saw things if I ate out it was just one of those things and I’d have to not worry about it, but there was no reason why I couldn’t make some changes in my own home – after all, what sacrifice is it to eat fruit for breakfast rather than a bagel or cereal? Even so, I feel that one of the problems of having Meniere’s is that people can perceive you as being obsessive about your health to the point of irritation, and it seemed like I’d encountered a little of that this morning as well.

Betahistine and Fit-to-Fly

2006-09-22T18:12:00.000+01:00

I went to the doctors today for a fit-to-fly certificate, but I’d been so ill in the last few days that I decided to ask for Betahistine as well. It had always been an option since my specialist had suggested it when I was diagnosed, but since neither of us seemed keen on it we’d agreed to try it if things got worse. Now that time had come I felt.

I wasn’t very well today and the short car journey to the doctors in my sister’s small car did nothing to make me feel better, so by the time I got into the doctor’s office I looked quite unwell. I was also suffering from brain-fog so I really wasn’t very focused at all, but I managed to keep my mind on things sufficiently to achieve what I needed to. The doctor had no hesitation in prescribing the Betahistine which was a relief; I’m desperate to try it.

I’m on the 16mg tablets which the Internet tells me are the middle-strength ones. The doctor wanted to see me in a couple of weeks to see if they were having any effect. If not, she’d put me on higher strength tablets – presumably 24mg. Afterwards when I got my head together a little better I was really happy that she seemed to be exploring treatment options rather than just giving me some pills and thinking there was nothing more she could do to help. Still, she was young and probably hasn’t yet become so jaded by the experience of being a GP that she’s stopped seeing the people behind the conditions. This small interest on her part did quite a bit to restore some of my faith in the medical profession today.

The fit-to-fly certificate was a bit more of a problem – she said she’d have to look into it because she hadn’t done one before, but I wondered whether she was going to check my condition and make sure I could fly first. I don’t think looking so ill today helped. But I’m not worried about it as I’m sure I’ll get a certificate – Meniere’s might be severe sometimes but it’s not so severe that flying isn’t possible for me I’m sure. Maybe later will be another matter, but now shouldn’t be an insurmountable problem I would have thought.

Joined the UK Meniere’s Society

2006-09-22T09:30:00.000+01:00

I joined the UK Meniere’s Society today. It’s £13 a year and I suppose I’ll see whether it’s worth it or not. It’s good to feel like I can belong to something official, but I’m not sure what it will provide me in terms of information that I can’t find on the Internet. I suppose they have a helpline and maybe there’s a possibility that I might find out about clinical trials – though I’m not sure I’d want to participate in any. They also say they organise local meetings, but I think my chances of getting to any in my condition are not very good!

The Technology of Diagnosis

2006-09-20T14:54:00.000+01:00

My mother sent me a text message to switch on the TV – there was a hospital programme on where one of the patients had a vestibular problem and was being diagnosed. She had a lot of familiar symptoms – dizziness, nausea, problems with focusing and so on. Because I didn’t see the start of the programme I don’t know whether she had tinnitus – and perhaps that was the key difference – but what amazed me was how many tests she went through at City Hospital in London. Aside from the usual MRI scan, they had her sitting in a chair watching fast-moving squares on a screen while a computer monitored her eyes amongst other technology-based tests. And once again I felt frustrated that my diagnosis had been no more than a clear MRI followed by the apparent catch-all of ‘it must be Meniere’s then’. The fact that the medical establishment didn’t seem to make a great of effort in my experience is beginning to eat at me all these months after my formal diagnosis.

It isn’t helped by the fact that the last couple of days have been hell. I had a drop attack on Wednesday and I spent the day on the couch unable to do anything because of fairly constant vertigo. Yesterday there was no vertigo but every slight movement of my head made me feel like I wanted to throw-up, so it was another day on the couch. I suppose it bothers me that I feel the medical establishment readily accepted a diagnosis which met their expectations and when I see someone else benefiting from a more in-depth process it makes me wish they had made so sure with me, because I would hate to think that I had something that could be treated, especially after this week.

I suppose that’s at the heart of my unhappiness. The last few months have been bad and I just don’t know how I’m supposed to live like this, and I’m coming to the conclusion that I want more tests and a better treatment plan than the one that I have now, which is basically none. It is going to happen because I am going to make it happen, but in the meantime suspecting that other people are getting better treatment is winding-me up about the whole issue.

Vicks in Japan

2006-09-18T13:26:00.000+01:00

Occasionally I experience mild breathing difficulties which may be a symptom of the anxiety Meniere’s can cause. I find I can not take deep breaths through my nose, and sometimes relieve the symptoms by using Vicks cream. Because I probably needed to go to Japan while living in South Korea, I was checking the UK Foreign & Commonwealth Office’s website regarding travel advice, and wasn’t expecting to see anything out of the ordinary until I came across this:

“The use or possession of Vicks inhalers and some other common prescription and over-the-counter medicines (e.g. for allergies and sinus problems) are banned under Japan’s strictly enforced anti-stimulant drugs law. Customs officials may not be sympathetic if you claim ignorance about these medicines.”

It only serves to demonstrate that one you have a medical condition of any kind, nothing can necessarily be taken for granted, and life becomes more complicated for all kinds of unexpected reasons.

Fly Me to the Moon

2006-09-11T14:02:00.000+01:00

When I was diagnosed with Meniere’s Disease I knew at some level life would never be the same again, and it seemed fairly clear from what the specialist I saw told me, that there really wasn’t any treatment for me that was worth the risk-reward ratio. I accepted this at the time, partly because I didn’t know how hard life was going to be, and partly because so many stories from sufferers on the Internet spoke of the caveats of surgical intervention; there nearly always seemed to be some cost in terms of health involved.

So I was outraged when I found out about Alan Shepard. Probably the most famous sufferer of Meniere’s Disease in modern times, the first American astronaut in space not only underwent corrective endolymphatic sac shunt surgery four years after his diagnosis in 1968, but unbelievably was returned to flight status and walked on the Moon in 1971 as part of the Apollo 14 mission. I can’t even make it to the local supermarket without feeling ill, and thirty-eight years ago this guy was cured so conclusively that NASA entrusted him to command a lunar mission. It’s just mindblowing.

So now this guy is my hero at some level, because he beat Meniere’s even if having a multi-million dollar medical service at your disposal must help. The story provides the first real inspiration I’ve found since my diagnosis, and I may eventually get around to reading his biography, Light This Candle, although I fear I may be disappointed by it because it’s the illness I’m most interested in and I suspect in such a remarkable life it’s unlikely to take up more than a few pages. It’s inspirational as it is and that’s enough to me for now; hope is important.

Chrysalis

2006-09-01T16:42:00.000+01:00

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.