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.
I know you weren’t asking for sympathy, Miles, but I am sincerely sorry that you’ve had such a rough time, and that it took such a long time to get to a diagnosis. I think you are absolutely right that the years that we now spend in front of screens will come home to roost in all kinds of ways as we get older. I hope your symptoms continue to improve, I’ll be rooting for you!
thanks very much Viv.
This is brave of you to share these challenges you have faced, and I’m sure it will help others. Diagnosing neurological symptoms can be be notoriously difficult, and there is so much not fully understood about migraines and the causes. In my experience the symptoms can be different in each individual, and the main challenge is tracking down the triggers. This can help to deuce the risk of ‘attacks’, and requires a certain amount of discipline – especially if it’s a food that you like e.g. chocolate! I hope you manage to control it. One thought, but you’ve probably considered this – reading from computer monitors can lead to symptoms in many who do not have migraines, I certainly find it much better to read reports etc from my iPad, and change the background colour from white. Stay well.
thanks Paul. At the moment the iPad is a stronger trigger for my symptoms than my Mac – it’s partly down to the small screen, and the need for more scrolling, which for me is a very strong trigger. I think it might also be something to do with the type of light it emits, but I haven’t really worked that one out. I have to be really careful using my phone, and can’t look use zoom or FaceTime or anything like that for more than about an hour, on anything.
Good luck with – the alternative would be printing I suppose, but that opens up a whole new can of worms!
Well that all sounds pretty shitty! I hope you can work your way to the other side of this – I expect you will. It’s the not knowing what’s going on that grinds you down, but now you do know I guess patience and taking it a bit more easy will see you through. Get well and come back fighting – we need you. If I could put an emoji here there would be a green heart!
thanks very much Tim.
Interesting, so many things are little understood in the medical field especially regarding ‘excess doing’ aka stress leading to ‘anxiety diagnosis’ and the effects on our nervous system. Meditation/ mindfulness, art and a puppy have helped me rebalance my past without side effects of medication. Wishing you peace and happiness free of these symptoms on your journey forward.
thanks very much Susan. In this case, it was the physical act of staring at a tiny screen (possibly while moving in a train) which I believe started the ball rolling, though I had also had a bout of labyrinthitis which might have contributed. And then I discovered the family history much later. But I agree all of those things help with wellbeing. I try and get out for a walk in nature every day.
You kept that distressing condition very quiet when writing your powerful blogs. In spite of what must have been very frustrating and even threatened your livelihood, you continued to pen some of the most revealing stories about the state of our wildlife. It is no exaggeration to state that you have achieved more with your blogs in a few years than most conservationists do in their lifetimes.
Having been diagnosed with an ‘incurable’ lymphoma and given three years life expectancy then survived a stem cell transplant five years ago, I am reluctant to criticise the NHS. However, that is based on my own experience of world-class treatment and we cannot ignore the fact that diagnoses do not always leap off patients’ record sheets.
I am sure I speak for all the readers of your blog when I wish you a rapid return to the very best of health. The fact that you have so calmly and thoroughly explained above what has happened to you speaks volumes and we hope the exercise has been cathartic!
thanks very much for your kind words. Yes it’s been particularly frustrating not to have been able to write as much, or indeed at all, these past few months. Your story sounds amazing – are you now fully in remission? My dad was also told his leukaemia was incurable, and only after a great deal of persuasion was given chemo which extended his life by a year. But that’s another story for another time.
Thank you Miles. Yes, I am in complete remission thanks to the selfless generosity of an Anthony Nolan donor whose immune system has replaced mine. It was gruelling and the sombre fact is that of the cohort of five who started the process of having their bone marrow chemically destroyed and replaced, I was the only one who made it. This has led to a very different take on life and the realisation that the support of friends and my family, especially my long-suffering wife who slept on the floor during my stay at UCLH, was instrumental.
We own, manage and live in an 11 hectare island of unwrecked England in the Southeast. It is mainly ASNW and part Sandrock SSSI but also enjoys a hectare of restored Wealden Meadow. We started with 99 vascular plant species on the whole site in 1983 and now have over 280. If you are ever in the area we would make you very welcome.
With very best wishes,
I’m so pleased you’re in full remission. Your place sounds magical.
Thanks for your blog Miles. I have always appreciated it. I do wish you a steady and full recovery.
thanks Rob (Bob?). Yes I am cautiously optimistic that this time things will be different.
Hi Miles – in common with many who have already commented – I wish you heaps of good wishes for a recovery of both mind and body. It was helpful to see a big picture and your full and frank account helps me to think of others and their diagnosis – it is certainly seldom easy and often frustrating to get the right diagnosis. Thank goodness you and the NHS have eventually come up with some solutions.
Thanks for sharing this – I agree that too much staring at screens and trying to read small typeface is not good. I am in the fortunate position of being retired (now aged 85) and (luckily as it turns out) have for many years avoided long car journeys and before Covid used to travel as much as possible by train. I have never wanted a smart phone and continue to use a shell phone (Nokia type) with large type face and only have it switched on when on site! The Luddites got it right – I think we should try to follow the ‘precautionary principle’ and choose to only use technology that is essential and unlikely to be harmful.
I was very sorry to hear of the problems that you have had and would never of guessed any of it from your blogs. Just shows that we British always ask people how they are and the usual response is – Oh, I am fine thanks!
All best wishes for the future.
thanks Roger. I do wonder if the children and young adults of today, glued to their phones most of the time, are storing up problems in later life. The experiment will play out.
You may not be looking for sympathy, Miles; but you’ve surely found it.
thanks Dave. hope you’re well x
I too sometimes wonder if screens are affecting us in a bad way, and we just don’t know to what extent yet. This is why I’m planning to cut down on my own screen time, because I feel my focus waning. Anyway, thanks for this post!
Glad you seem to be finding a way through it, now. I’ve had to cut caffeine out as much as possible for a different health reason; it’s meant to stay in our bodies for about 12 hours or so (apparently) but it’s taken me about a month to feel the benefits. Hopefully you are too.
Although de-caff coffee is pretty uninteresting, I must say.
Thanks Mick. I’m getting used to decaf coffee. But have yet to give up tea…
We have this: https://www.yorkshiretea.co.uk/our-teas My wife is caffeine sensitive.
Greetings from Herefordshire! Hope you recover equanimity 100%. This may not be relevant to your experience: but I had a bicycle accident nearly 3 years ago ending up
in Queen Elizabeth acute brain injury hospital. Took 3 months before discharge. Learned lots about brain neural networks + their bodily inter-connections, cured by Yoga (should be on the NHS).
I have spent huge amounts of time (decades) in front of computer screens but that nothing
to do me falling off my bike downhill. I’m now back digital mapping for conservation objectives as much as before (more actually) but I intersperse with cardio-vascular physical activity. This year I am managing my local hay meadow reserve by scything the entire field myself by hand (5 acres).
One thing I learned from lying in bed for 3 months: consciousness is simply a computer simulation, naughts and ones being stored in brain cells instead of silicon chips. Brain = highly evolved biological computer which needs its neutral network recharged by physical activity.
I love my computer screens and feel a natural affinity to software, CPUs and RAM.
Back to scything…..
Thanks David. That sounds like it was pretty serious. Scything and raking are definitely good for the soul.
Hello Miles hope you continue to have 100% health. Since you ask: I only know what the brain medics told me when I came round 3 weeks later strapped into a bed “Mr. Lovelace do you know where you are?”. They had to spell it out to me in detail. It was indeed a near death event.
Scything is indeed good for the neural networks (not soul ) – a form of Yoga. So is digital mapping and software development (at least for me). Still cycling to the local shops for supplies; same bike which was unscathed.  atheists don’t have souls, but I was able to amuse my local church goers, who said they prayed for me, “that shows prayer works even on atheists”. Ha ha.
Thank you for sharing your experience. I hope you continue healing and the amitriptyline continues bringing relief. It frustrates me so much to hear how many others have been dismissed by doctors and not given the medical attention they desperately need and deserve. I have been through something similar with vestibular migraine and vestibular damage, so I feel your pain in symptoms and the change in life.
Sending strength to you.
Thanks for sharing your experiences – I hope you’re feeling better in the meantime.
If you do think it may be the light that is causing or exacerbating your symptoms, or want to find out more about the effect of artificial light on health and well being, do check out the charity LightAware (www.lightaware.org)
When I was researching my book Incandescent – We Need to Talk about Lght, I interviewed many people struggling with symptoms including eye pain, visual disorientation, migraine and dizzyness after exposure to LED screens – so maybe something worth exploring,
All best wishes,
thanks Anna – yes a number of people have talked about their experiences with migraine and different kinds of light. I wasn’t aware of light aware and will certainly look them up. Whether it’s a coincidence or not, I’ve noticed my symptoms getting considerably worse since I’ve been using LED screens of one kind or another.
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My mentally-handicapped daughter suffers with migraines but nothing as bad as yours have been. I hope you can get back to some sort of normality soon.
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