The Drop Attack

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

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

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

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?

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

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

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

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

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?

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

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

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

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

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

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

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

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.