Me and my brain

Everything stopped for me last year when my brain flipped and my sense of balance went totally skew-whiff so that I could barely walk or read.

This year I finally caught up with the study I should’ve been doing when I was ill and now I have my course result: Distinction.

So take that again, brain.  You can ruin my life for months on end by malfunctioning, as you have ably demonstrated.  But I can claw my way back to normal life again, slowly, gradually, painstakingly…

Even though the me I talk about is in fact you, and the you I talk about is me.

Why can’t we just get along!

Six (actually seven) month appointment

In the second week of April 2009 I attended my six month appointments (actually seven months, but the hospital kept cancelling appointments) with an ENT consultant and a vestibular physiotherapist.

The ENT consultant was the original one I saw when I was at my very worst, back in September 2008.

The last time he had seen me, I had been pushed in on a wheelchair and could barely move my head in any direction. This time, I walked in and my head had regained its ability to move around freely without immense vertigo and motion sickness. He seemed genuinely pleased for me.

He said it was excellent that I had managed to come off the travel sickness medication in December, and that I could try stopping the migraine medication too, as it is usual to do so after six months if improvement has been seen.

If the symptoms start to get worse again, I can see a GP to get back on the migraine medication and the travel sickness medication. Hopefully they will work as they did this time around. If not, I can ask a GP to refer me again to the hospital. Also hopefully, it wouldn’t take as long to get an appointment as it did the first time around.

For many years I thought I had BPPV.  Maybe  I did have that at some stage, but I don’t think it was the real problem for most of the time.  When I specifically asked, he said that what I have is probably migraine associated vertigo, given the evidence so far.

He was very open and rational about it, and while I very much respect that, it does mean that I don’t get any of the false sense of security that comes from believing that your doctor is an infallible god who knows exactly what is wrong with you and exactly what to do to make you better. But I think that on the whole, I have the better deal. To paraphrase a few people, I would rather know the truth and deal with the world as it is, than persist in delusions, no matter how comforting they may be.  Maybe that is the definition of being a real idiot.  Fancy choosing to put up with depressing shit instead of comfortable ignorance!

I had an exam looming in April, which I was not willing to jeopardise as it was already deferred from last year due to the illness. So I didn’t try stopping the meds at that point, just in case I got worse and missed the exam.

The exam is now over, and I have an appointment with my GP to bring them up to date with all this and discuss what I should do about all the headaches I get. I’ll wait to see what the result of that is, and then decide whether to stop the migraine meds.

Incidentally, this is medication about which the ENT consultant said “To be honest, you were on such a low dosage, it’s debatable whether it actually had any physical effect”.

So there we are! The medicine may or may not have worked. I may or may not get worse again. I may or may not get totally better.  I may or may not have migraine associated vertigo.

Uncertainties can be hard to deal with emotionally. But life is full of them and it’s just the way things are.  The sooner you can mentally adjust to it, the easier and happier life becomes.  We’re scum on the side of a rock in an uncaring universe.  Some things you can control. Some things – most things – you cannot control.  Within these tight constraints, we are still capable of a lot.

I filled in the same questionnaire I’d filled in last December when I saw the vestibular physiotherapist.  This time I scored below 40, so apparently I’m now normal.

I’m not normal, of course, but that’s the nature of questionnaires.  I still have vertigo and motion sickness from time to time.  It’s something I have to live with.  Just the other night I was not feeling well with it.  I had a headache, nausea and constant rocking and jerking sensations despite not moving.  I lay down on my bed and waited for it to abate.  It didn’t look as though it was going anywhere, and I started to feel alarmed.  What if this is the beginning of a really bad patch again…

Thankfully this time it did abate after taking travel sickness medication, Nurofen and having a night’s sleep.

A major victory

I couldn’t walk around the house six months ago and I thought perhaps I’d never get there again, but I made it to Monkey World and took this video of the excellent Ben, who seems to still recognise us:

The train journeys weren’t a piece of cake, particularly just the length of them and one fairly bad one in the dark with nothing to focus on outside of the carriage.  It left me with the ‘bucking bronco’ feeling at bedtime, which made me miserable for a short while before it slowly receded.

But I did it.  

Take that, dizzy brain.

Vestibular physiotherapy

My first appointment with an NHS vestibular physiotherapist was twelve weeks after my appointment to have balance tests.

It was thirteen weeks and four days after my first appointment with a consultant in the ENT department.

It was twenty weeks and four days after my visit to a GP to ask for a referral to a specialist.

Is this acceptable?  For patients with severe symptoms which render them incapable of normal, everyday activities?  Is it acceptable to leave them to rot for weeks and then months on end, on their own?

I wish that every healthcare professional involved in the treatment of such patients could personally experience the hell of this type of illness. Perhaps only then would proper thought and care go into the handling of patients.

In fact, in my resentful moments, I secretly wish that most people had a bout of this illness at least once in their life, like teething or puberty.  It might make the human race a whole lot less ugly to experience the non-stop disorientation, uncertainty, nausea and isolation.

I have just had another appointment with the physiotherapist, three weeks after the initial one.  At the first one I had to go through the whole story of my vertigo yet again with someone new, plus two trainee vestibular physios who were sitting in.  To put me at my ease I was told the trainees would be watching the physiotherapist at work really, and not me, as she was due to go on maternity leave and they would be taking over.  The reality, however, was me facing a bank of three people, as if I were attending a job interview.

Basically the physio didn’t tell me anything I hadn’t already read or tried.  It was obvious that I had already done the majority of the work on my own, during those long three months waiting for a physio appointment to materialise.

What became crystal clear to me, is that a physio can’t ever actually do very much, even if they do get to see you when your illness is at its very worst.  What they should be doing, ideally, is giving the patient the tools they need to help themselves recover, and not arbitrarily prescribing ‘Do ten of these up and down exercises two or three times a day and walk around your garden once a day.  Come and see me again in three weeks’.  This is what I overheard a trainee physio telling a woman who was in a fairly bad state (though she was not in a wheelchair).

I don’t know what her actual diagnosis was – BPPV, migraine associated vertigo, Menieres, etc. –  or the ins and outs of her history, but I totally understood how this woman was feeling.  Talking about her condition to the physio had made her cry.  Her face was red.  Her voice was slightly desperate yet resigned.  She hadn’t left her house for seven months, apart from to visit the hospital.  She said her doctor wanted her to take medicine for anxiety and depression.  The physio wisely told her she should try doing physio first, because it will almost certainly help her to get better and then there will be no need for anxiety or depression medication.

But as soon as I heard what the trainee physio was directing the woman to do, I said outloud, as though suddenly afflicted by a medical Tourette’s syndrome, ‘Well that’s too much!’.  I don’t think they heard me.

What a physiotherapist who has never been afflicted by this kind of illness doesn’t understand, is that when the symptoms are very severe, a patient needs to take baby steps which no one can prescribe to them, because only they will know their limits at any particular hour.  I started with lifting my head not very far up and down two or three times in one day.  I’d pat myself on the back afterwards, say to myself ‘That’s that done for today’ and then rest and try to enjoy a few things, like comedy or radio or food or talking to a friend or getting someone to read me crossword clues.  Remaining positive is half the battle.  Overfacing yourself with a strict regime of exercises at the beginning is a recipe for failure.  Particularly if you have bad nausea and are not on medication to help control it, or if you possibly have an underlying problem like migraine and should be on medication for it.  That is what happened to me and it set me back weeks.

Perhaps I’ve got it all wrong and she had been diagnosed with something I know nothing about.  Perhaps recovering from my probable migraine associated vertigo is totally different from recovering from whatever her condition is.  But whatever she had been diagnosed with, I know that when a person is emotionally  in that state, you can’t afford to not take recovering slowly.  The risk of trying to rush it is that you will not ’succeed’ as you thought you would and so you give up.  You end up in an even worse state than before.

At the first appointment, the physio gave me a questionnaire to fill in about my experiences of the illness.  As I went through it, I could see straight away that if I’d been handed it three months earlier, I would be answering a lot of the questions very differently.  For example there was a question about whether the dizziness and vertigo made you feel depressed.  Three months previously I would’ve ticked the ‘Yes’ box and written ‘Hell’ before the word yes.  There was one about whether you could walk around outside on your own.  Outside?  Back then I could only just get myself between my bed and the bathroom by taking tiny steps – it took about three minutes to get there! – let alone going outside!

But now that I had progressed so much and I was walking around, going shopping, catching a train to get to the appointment?  Was my condition depressing me now?  Not really.  I can take part in usual, everyday life again.  I can shower.  I can brush my teeth with my head tilted down and moved from side to side.  I can walk for an hour or more.  I can go into shops.  I can use escalators.  I can read!  I can write.  I can watch tv.  I can use computers!  Yes, it’s true that I still have dizzy spells in certain situations – lying down at night and in certain positions, when I’m very tired at the end of the day, when it’s dark, and when there’s too much visual motion going on.  But it doesn’t dominate my life as it did last summer.  Next week I am planning to take a four-and-a-half hour train journey across the country, with one interchange.  I will be away for a few days and hope to make a further two hour journey to Monkey World in Dorset, where I haven’t been for eight months.  I used to visit there every couple of months.

Apparently I scored 50/100 on the questionnaire.  Scoring below 40 is considered ‘normal’.

This time the physio advised me to keep walking about on uneven surfaces, to think about anything not to do with my balance as I walk about, and to try and get back into using lifts.  I will also keep doing the various head movement exercises I got out of a book.

Next up is an appointment in March with the first ENT doctor I saw at this particular hospital back in September, and then probably a final visit to the physio in April.

Three month appointment

I’ve had my three month appointment at the ENT department. This time I saw a different doctor. He read my notes as I sat there opposite him, quickly trying to bring himself up to speed on my vertigo history.  I felt sorry for him; it must be like this with every patient. Never treated them before, having to rely on notes typed up by another doctor and come to a judgment while talking to the patient for five minutes. Not easy.

We agreed that I could come off the motion sickness medication, as I am feeling 80-85% recovered now and the nausea is pretty much gone. I’ve been making good progress with the actual vertigo and dizziness too. I can now walk around fairly easily and I can cope with shops for a while. Now and then I have the feeling of jerky movements happening (like I’m on a bucking bronco machine) or what I call feeling ‘jangled’ (almost like my head is a big bell and someone has rung it and it won’t stop ringing – the motion, not noise) but I take it easy, lie down, perhaps go to sleep, and eventually it recedes.

I’m still taking the migraine prevention medicine, as that is a longer-term type of medication. We can’t know for sure whether the medication is the reason for my recovery so far, or if it’s because of the movement exercises I do, or if it’s down to both of them, or if it’s nothing to do with either of them and I was just going to get better anyway (‘regression to the mean’).

It leaves me somewhat unsatisfied, obviously, because if you don’t know exactly what caused something to happen or exactly what caused it to lessen, then you are not in a very confident position for dealing with avoiding it or getting rid of it if it happens again.

The car journey to the hospital was nowhere near the absolutely terrifying ordeal of the first and second trips in September. I also had no need for a wheelchair to get around the hospital (or, more correctly, for other people to wheel me around the hospital in a petrified state). Walking into the hospital, it was a very different experience from being in a wheelchair. I could still see how grimy, rundown and dated the place was, but it didn’t make me feel as desperate as it had when I was in a wheelchair. People didn’t feel free to stare at me or look pityingly. They might have thought my hair was strange, but they wouldn’t rudely keep their eyes on me. A person in a wheelchair is not someone to be gawped at, as though they don’t deserve the same respect as walking human beings.

I have my first physio appointment next week. It may well be of not much help now I have recovered so much on my own. But then again maybe it will help me to recover that extra bit more.

Illness and lost time

During the summer (northern hemisphere) of 2008 I started to have a severe attack of a recurrent balance problem of eight years standing.  This time I was bedridden for weeks with vertigo, dizziness and constant nausea.  Not to mention the panic, anxiety, stress and depression caused by the vile and unrelenting symptoms.  It was certainly the worst illness I have experienced, and the worst period of my life so far.

I was prescribed five different medications, which I tried in turn, and then some of them concurrently, but none of them made me better.  I was in a pit of despair for weeks and weeks on end, with absolutely no sign of getting well again.  I saw the rest of my life as isolated, lying in bed, totally reliant on other people… only able to shuffle at a snail’s pace to the bathroom and back, sometimes listen to the radio and cry.  I could barely walk, as even the tiniest head and eye movements provoked worsening of the symptoms.  Either the world felt like it was moving around me, or else I felt that I was moving when I obviously wasn’t.  Walking a few steps felt like I was walking on the deck of a ship in the middle of a storm – this is no exaggeration.  The smallest tip of my head downwards produced the feeling of standing on the edge of the world’s tallest building.  I couldn’t read or use any kind of screen, and found eating extremely difficult due to both the persistent feeling of motion sickness and the very small head movements caused by chewing bringing on unacceptable levels of vertigo.  When I moved a limb in one direction, I felt as though my whole body had moved in the opposite direction.  I couldn’t wash due to all the movement required, and most days I couldn’t clean my teeth.  Closing my eyes also made the symptoms worsen, which made falling asleep almost impossible and serious sleep deprivation kicked in.  The times that I did manage to drift off, I would inevitably be woken up suddenly by spinning or jerking sensations and intense nausea.

In short, it was utterly wretched and bewildering.

Because I requested it, a GP referred me to a specialist in a hospital roughly 70 km away.  The NHS waiting list was approximately 6 weeks.  Asking someone with a severe balance problem to wait for 6 weeks, then endure a car journey of this length and then find their way around an unfamiliar and busy building is somewhat akin to asking someone who has broken bones in their feet to jog to their local A&E department for treatment.

As the specialist also works privately, I asked for a private referral to see if I could jump the queue.  When the appointments finally arrived through the post, it turned out the NHS appointment was before the private one.  Such is life.  So the NHS it was.

After waiting through 6 weeks of torture, I made the also torturous journey to see the specialist, only to find… he was off sick with a bad back.  Instead, I was to see a junior member of his team.

I was told that there could be no firm diagnosis at this stage, the only answer was to ‘keeping moving about’, have ‘balance tests’ in the hospital at a later date, and he would re-check my MRI scan from two years ago to make sure there was nothing indicated on it.  He immediately took me off the medicine prescribed by the GP and instead prescribed medication for what is elsewhere called ‘migraine associated vertigo’ and for the motion sickness.  A couple of weeks later I had the unpleasant balance tests, for which I had to stop taking the motion sickness medicine.  The tests found nothing wrong and I was then put on another waiting list for physiotherapy.

I have always had quite a lot of headaches, and earlier in 2008 had experienced my first visual disturbance of enlarging bright flashing lines, which was a bit scary, but I did not realise that this made me a migraine sufferer.  I had assumed that having migraines meant clutching at your head in the severest amount of throbbing pain, feeling sick and sensing an ‘aura’, whatever the heck that means.

The medications seemed to start slightly alleviating my symptoms and allowed me to begin down the road of weeks (so far 5) of repetitive Vestibular Rehabilitation exercises.  These are exercises involving eye movements, head movements, whole body movements, and various combinations of these.  It is a difficult, long, hard slog and it demands a happy, positive frame of mind.  I still have yet to see an actual NHS VR physiotherapist and have so far been giving myself the physio.  Thanks for your prompt and efficient service, NHS.  It is now three months since I went to see a GP about this particular attack (and it is eight years since I first complained to a GP about vertigo).

In a rather cliched way, I now have even more appreciation of normal, everyday life and am determined to return back to it.  I want to take part in life, with as many of my senses intact and functioning properly as possible.  Being virtually trapped in bed and unable to move my head or eyes much for over six weeks tends to focus the mind on what is important.  I see other people fretting or fighting over inconsequential things, and I don’t know why they do it anymore.  If you are in reasonably good health and have people to love who love you, then everything else is small fry.  If I fully recover, I will probably continue to have bouts of this illness in the future.  That makes it even more important to enjoy life between the bouts.

I hope you never get this illness.  Here is one woman’s story.   Here is another.  And a famous one.  Apparently 40% of the UK population has suffered from a balance disorder by the time they are 60 years old.

What are the chances.  Quite high it seems.  We have a finite amount of time alive and something like this or worse could happen to you at any time.  Don’t use this as a reason to worry.  It’s a reason to enjoy everything, have a laugh and make the most of being healthy when you are.