Out of the blue, into the fan

Watching the recent BBC TV documentary about Andrew Marr, ‘My Brain and Me‘, brought the lessons from my own stroke recovery sharply back into focus. After watching the programme, I ‘googled’ the keywords ‘stroke’, ‘damage’ and ‘thalamus’ and found a raft of resources where fifteen years earlier I’d found a blank screen. Whether this currently available knowledge would have helped me back then is debatable, though I would probably have drawn comfort  from the knowledge that I was neither mad nor alone.

I did publish a few random notes online at the time, but the exercise proved just about as futile as Jimmy Carter casting his message into the cosmos in 1977.

 

 

One Friday evening, fifteen years ago today as it happens, I was running around playing indoor football with a group of hyperactive eight year old junior scouts when without warning I was felled by an explosion of pain somewhere behind my left eye. Simultaneously, the right hand side of my body lost all sense of purpose and I collapsed to the floor in a heap.  Crawling to the side of the room, I was just thankful that a colleague, Nigel, was there to take over supervision of the kids.

Half an hour later, with power to the right side restored and the headache receding, I limped out to my car and drove cautiously home, already trying to deny what had just very obviously happened.  For the rest of that weekend I nursed what seemed like the mother of all hangovers before getting back in the car at 6:30 am on Monday for the one hundred mile drive to a customer site.  During that journey, I was alarmed to note that my visual reaction time was well off the pace. I cut the day short before the M25 rush hour, got back in the car and headed home for an appointment with a GP.  With hindsight, two hundred miles I should never have driven.

Grounded for a week by the GP with a concerned look but no clear diagnosis, I set out two days later to walk my ten year old son to school.  I’d barely moved fifty feet from the house when a second violent episode left me completely and utterly disoriented, unable to do anything other than retrace my steps to the house. There was little immediate pain compared to the first event, but my internal ‘navigation’ system appeared to have abruptly and inexplicably shut down leaving me drowsy and confused.

A couple of hours later I was sat semi-comatose in another GP’s surgery listening to my wife agreeing with the doctor that it must be ‘stress related illness’.  With no obvious physical impairment, that currently fashionable diagnosis must have seemed the easy way out.  My own weak protestation that two ‘fuses’ had already blown met with little sympathy and my request for an investigatory scan met with a patronising retort from the doctor that such action ‘would be a waste of their time and your money’.

Two days later, what had begun as a background nag had developed into a constant migrainous headache which in combination with the ongoing spatial disorientation had an increasingly debilitating effect on me.  I insisted on consulting a neurologist privately and was referred for an MRI scan a few days later.  The result surprised the medics but perversely reassured me; there was clear evidence of three separate lesions in the left cerebellum and a further small one in the thalamus. By rights, I was told, I should be exhibiting mobility issues.

For the next twelve months, chronic migrainous headache was the order of both day and night, making sleep fitful and the ability to concentrate weak.  Several attempts to get back to work crashed and burned after only a few days.  To cope with the migraine, I was prescribed a succession of pain killers, starting with various beta blockers and moving on to a series of anti-depressants, prescribed as neural painkillers.  Neither category provided relief for long and in the case of the anti-depressants, the side effects were almost as intolerable as the untreated headache.

On the plus side though, recovery was happening, it was just taking its own sweet time…

The curious issue I had with spatial disorientation I could only describe as like having a faulty ‘graphics card’;  my eyes were working fine but the brain was struggling to correctly render the image as seen.  The problem proved easy to reproduce and the circumstances were such a part of day to day life that they were virtually impossible to avoid.  Standing still in a ‘rectangular’ space, a room, a corridor, a store full of shelving, everything was fine. But as soon as I tried to move, my brain seemed to need to slowly and methodically redraw the perspective of the space into which I was trying to plot a course.  As I turned a corner, I had to wait while floors, walls, ceilings and any other rectangular surfaces were redrawn and caught up with me.  This process, which in normal life must surely be an automatic ‘background activity’ for the brain, had now become a disabling distraction.

To find relief from this strange hell, I took to walking in the nearby countryside, finding that the soft, undulating landscape of the South Downs with its woodlands and open skies were easier and less painful places to be in. My visual issues with buildings and right angled structures didn’t apply out there.  In contrast, a local DIY superstore with high mounted rack shelving, narrow aisles and garish colours, gave me my obvious benchmark for recovery.  Once a week or so, I would trudge up and down those aisles, timing for how long I could take it before my headache forced me to quit.  I little cared whether the staff thought I was barking mad, it worked for me!

In the fullness of time, new cells took over the lost function and the issue slowly improved, reducing the intensity of the headache to more manageable levels at the same time. Fourteen months after the first event, I made the cathartic, if inexcusable, decision to flush all remaining medication down the toilet and live with the reducing symptoms in their undisguised state. With the decreasing level of intensity, tolerance of the headache became preferable to trying to hide it and once on top of the pain, I succeeded in getting stuck back into full time work.    The eventual diagnosis, having discounted all the usual factors, ended up as ‘Migraine Induced Stroke’,  an unconvincing diagnosis given that the first migraine I ever knowingly suffered was the 24/7 bastard which struck me down afterwards.

The lesson that the reader should take from this is the one that I was actually in complete denial of from the start.  No matter how much you believe you can cope with stress, either at work or at home, when those two sources of stress peak simultaneously, the resulting collision can have far reaching and unpredictable results.  If you find yourself in that situation and are hit without warning by a crazy event that screams ‘I’VE HAD A STROKE’ at you, do not try to deny it, just get someone to call the emergency services right away.  

I just about got away with it, but the road back was long, painful, scary and lonely.  My lifestyle and stress levels have all mellowed over the intervening years, but in the event that lightning strikes twice, then the two sets of MRI images from 2002 and 2003 tucked away in a large envelope beside the filing cabinet in my study should provide a useful benchmark.

#strokesurvivor #thalamus #migrainous #headache

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