It’s been a while since I wrote anything – and this time it isn’t writers block. On occasions it has felt like there were so many things to write about – political developments, pieces of interesting news, the continuing slow motion car crash of Brexit – and the inevitable developments of the pandemic – that it was impossible to choose a topic. The real underlying reason that I haven’t been writing – or doing much in the way of paid work, has been a chronic health problem. I haven’t written about it before, for various reasons which will become clear. I should say from the outset I am not looking for sympathy, nor am I seeking to use it as an excuse for work projects not completed, but perhaps recounting my experience might help others in a similar position.
It started about 13 years ago. Work had given me a blackberry mobile phone (remember them?) which was for a miracle device as I could get and reply to emails while travelling. The job I had at the time involved lots of travelling – train trips up to Hampshire and London several times a week, and driving long distances often to remote places. At that time my eyesight was good but the inevitability of age meant I was wearing reading glasses. The screen on the blackberry was small and the font size even smaller. I spent a lot of time looking at this screen and using the funny little blackberry keyboard. There was also a rather addictive game involving a little ball (an updated version of pong, really). Anyway I spent a lot of time squinting at this keyboard – and my glasses were designed for reading paperwork and books not little screens. I started to find I was getting dizzy spells, feeling a bit sick and headaches, and my eyesight would go blurry, or even start to see odd bright lights and shapes. But most of the time I was ok. I went to see my GP. I think at this time I was put on beta blockers but they just zonked me out and I stopped them pretty quickly. Anyway the symptoms came and went.
The following year was very difficult as my dad became very ill with leukaemia and almost died, I was travelling up and down to London a lot and very stressed both at work and home. In 2010 the leukaemia returned with pneumonia and dad died. I didn’t deal with that at all well, just bottling up all that emotion. Looking back it’s pretty obvious I was depressed. I think I ignored the fact that the symptoms were getting worse until we went on a family holiday to the south of France which involved lots of winding roads. I was just feeling car sick the whole time and it didn’t go away even if I wasn’t in the car. Shortly after we returned home, I had the most bizarre experience. I had a bad dream and on waking my vision had completely gone – it was like an old celluloid film when the film falls off the sprockets and you get the frames moving rapidly upwards – or downwards in my case. I staggered downstairs and felt the whole of my right hand side go numb then pins and needles. I couldn’t think, I couldn’t read. I thought I was having a stroke. So I went to A and E and I don’t remember much apart from a cardiologist reassuring me I hadn’t had a stroke and him saying it was probably a panic attack. Anyway the hospital arranged a series of tests all of which came back normal and about 3 months later I saw a neurologist who stated “there are features… which raise the possibility of a migrainous phenomenon” but he wasn’t prepared to make a full diagnosis, but also “stress may be a possible contributory cause.”
Subsequently I remember periods when I was clear of symptoms, but slowly the periods of clarity decreased while the periods of dizziness, feeling off balance and variety of other sometimes quite weird symptoms, increased. I was finding in particular that scrolling through a document online (pdfs usually) would trigger my symptoms which could then last for weeks or months. As reading through long documents was a key part of my work, this was affecting my ability to work. It was also becoming increasingly difficult to be a passenger in a car, and buses were pretty much off limits.
After a particularly nasty infection (which I wrote about here) I remember the symptoms returned again – especially a feeling of fullness in my ear and tinnitus. My GP organised a referral and I had my hearing and balance tested in great detail and this found no evidence of any organic neurological problem. The consultant neurologist concluded that “there may be an element of vestibular migraine though I suspect his anxiety is not helping.” This really annoyed me. I thought anyone who had lived with these symptoms for that long would be anxious – it’s a natural response. I became quite disillusioned by then.
A couple of years passed and the symptoms were there, sometimes in the background, but most of the time. I can’t remember exactly how, but one day I came across a description of a relatively newly described condition – Persistent Perceptual Postural Dizziness or PPPD for short. It seemed to fit my symptoms pretty well and there was a recommendation that vestibular physiotherapy could help to get rid of it – effectively retraining the brain. So I went to a couple of vestibular physiotherapists and they both set me a slightly different set of exercises which involved a combination of head movements, watching videos of ripples on water, even watching water flow under a bridge. The idea was that slowly by building up a tolerance it would be possible to retrain my balance organs and brain circuits. The trouble was I would never get past the first set of exercises because they immediately triggered the symptoms. So that was another dead end.
Then came lockdown and the pandemic. I found myself spending more time in front of the computer and the symptoms would come on ever more quickly – to the point where I couldn’t do much aside from write pithy tweets. Reading (on or off screen) was possible but only for very short periods. I couldn’t join in with zoom world as the movement on screen would very quickly trigger my symptoms.
I was getting out and walking more and more, as much to get away from the computer as anything. This year we went on a brief holiday and I was only able to drive on the motorway for about an hour before my vision would start to go and we’d have to stop so my long suffering wife would take over. I was taking stugeron to get me through car journeys but it just sent me into a semi conscious state and left me with a bad hangover feeling the next day. I thought I had found out what was ailing me (the PPPD) but I thought I should get a proper diagnosis and see if anything else could be suggested. Back to the GP, and my third referral to a neurologist.
Following a brief chat about my history and leafing through what is now quite a sizeable sheaf of letters and test results, he discounted my self-diagnosis of PPPD and started talking about migrainous vertigo, then chronic migraine. Thankfully he didn’t mention anxiety or stress – it’s not that I am free of either, but I also know the difference between them and a neurological problem. After another brain MRI which was clear, he’s happy that that is what I have, and have had, all along. I’m now on medication – amitriptyline – which is an old class of anti-depressant but has been found to be effective against migraine. I’m still increasing the dose up to the point where my symptoms disappear. It has been working, but interestingly my symptoms reappeared quite acutely yesterday – after some lengthy reading of pdfs. I also have to give up caffeine, which I have not yet managed to do, but it’s a common trigger for migraine. I have a made a big step towards that by shifting over to decaff coffee. Tea is next.
So I feel very slightly optimistic about the future and getting back to having a clear mind, getting rid of the “brain fog”; the feeling like I’m walking on the moon, the way everything rocks back and forward as if I’m on a boat, losing my visual acuity and just seeing things incredibly bright with strange lines where they don’t exist, and all the other weird symptoms that come and go. Oddly I don’t get migraine headaches. But it turns out that my dad suffered from very bad headaches when he was younger – and his mum had “do’s” as she described them – when she would suddenly lose her balance, become nauseous with vomiting and then be in bed for a day – which is a classic set of migraine symptoms. Neither were diagnosed.
I don’t blame the medical profession, though I think there is a tendency to discount odd undefined symptoms to anxiety or stress, which isn’t especially helpful. Then again there is so much that is unknown about migraine and the physical or biochemical basis for it. I’m glad to have finally had a proper diagnosis after all these years. Given the tentative suggestions that previous neurologists had made, it’s a pity that they weren’t followed through at the time – but that’s partly down to me. Amitriptyline was suggested by the neurologist I saw in 2017 but I remember talking to my GP about it and he noted that the side effects were quite significant, and for a tentative diagnosis it didn’t seem worth putting up with them. I can confirm the side effects are quite significant, but I am prepared to work through them because I want to get better. Of course better 13 years later will be a very different better now than it would have been then. It’s not that I’ve lost those years, but certainly my quality of life has gone a long way downhill. And that has had a big effect on my family and friends.
I do wonder how much of it is related to our modern lifestyle where so much time is spent in front of screens of one kind or another. Sight seems to have taken over and now dominates the other senses, for so many people.
There’s no particular moral to this story. I just felt I needed to write it. Thanks for reading. Hopefully I will feel sufficiently better to be able to return to writing this blog before too long.