As Easter approaches, I think back to Easter of 4 years ago - in particular Good Friday 2020. This was a very different Easter for me, as it was about to change the course of my life.
Prior to this, I had assumed (as many do) that epilepsy was a condition that always manifested as a big seizure (a tonic clonic) and usually (if not always) as the result of lights flashing or photosensitivity.
In a way I'm a bit annoyed that I didn't realised until the day itself (today - Tuesday 26th March 2024!) that it is Purple Day, as I might have been able to organise something such as an event or other fundraiser, or thought of a more ingenious way to spread awareness than putting it onto my blog.
However, here we are, and for what it's worth, I'd be delighted to share with you my experience of Good Friday 2020 in the hope that it might not only educate those who were as unknowledgeable as myself, but also perhaps help some people identify that they, too, may be affected by epilepsy.
"Jerky Hands"
For years and years, I had been plagued with a slight something that I dubbed as my 'jerky hands'. These were involuntary spasms that often affected me in both hands and they would crop up daily - several times a day. They were at their most frequent when I was doing something considered 'hands on' (such as playing the piano, inconveniently!), but I never thought much of it. I actually thought it was normal - that everybody got them.
The sensation was a little sharper than you may expect when I say that it was just that my hands 'jumped away' from certain situations, and it was always accompanied by a little shock in the brain. Not a painful one, mind, but just the type of thing that made me have to reassess where I was up to, what I was doing for no more than a second afterwards. Nonetheless, this is not a good situation for anybody who requires any amount of concentration and fluidity (such as somebody who plays the piano!) - and I did identify that my jerky hands were indeed enhanced, for want of a better term, in one of two instances;
Stress and / or concentration - contextually, learning a new piece of music could be a nightmare for me!
Alcohol. This one stands to reason, but I have somewhat amusing memories of a different Good Friday making a Simnel Cake and throwing half of the batter around the kitchen rather than in the tin. A worse case of jerky hands than normal, almost certainly down to the after work party we had on the Thursday!
Astonishingly, I never connected any dots. Stress is unpleasant and I figured that if we put ourselves through it, of course it's going to manifest badly somehow. So even if I hadn't considered that the jerky hands specifically were normal, I was on track for assuming that everybody had something as an outlet. And I considered the alcohol thing just stood to reason - probably still does. Alcohol has an uncanny ability to enhance pretty much everything we go through, good or bad.
Good Friday 2020
You must remember that by the time it got to Good Friday 2020, the UK (and the world, frankly) was in a state of misery at having been locked down for the first few weeks. People couldn't go anywhere - not even to work in many cases.
So I figured I'd bring a bit of cheer to people by asking them on Facebook to name me a song that brought them joy and then when I had enough I'd record a medley of me playing through them.
A fairly simple task, especially seeing as the list was made up largely of nice, simple pop songs. From 'Things Can Only Get Better' to 'In My Life', 'Hold On' to 'Three Little Birds' and from 'Always Look on the Bright Side of Life' to 'Go Your Own Way', this was not a difficult challenge.
So I wired my electric piano into the laptop (luckily, for a microphone would have picked up some soon to be rather unsavoury language - by my standards, anyway!) and set out to recording a melody. What was supposed to be a one take wonder had to be done in many takes and frankly it didn't work.
But because my laptop was recording this video to be uploaded to Facebook to bring a smile, I was able to put together this montage of highlights of me suffering more than I had ever suffered with my jerky hands. Note also, I was getting increasingly stressed and the more I failed to play, the more I concentrated, so that wouldn't have helped either:
Well, this went on for about an hour and I would love to be able to say that I just shut the computer down and decided to come back to it. But me being stubborn and determined that people would have a smile raised at the beginning of their Easter weekend I persisted. Or I tried.
And then I had a complete manifestation of all the warning signs of that past hour - a tonic clonic seizure.
Whilst I do remember the first second or two of the actual seizure itself (somewhat like being in the electric chair, I imagine...), I was grateful that I was unconscious for most of it. And a lot of the aftermath too. First thing I remember is 'waking up' lay down in an ambulance (apparently I'd been talking to the paramedics and even walked myself to the ambulance - who knew?!) being waved goodbye to by my parents. My neck was hurting because evidently I'd fallen backwards off my stool onto the floor, and then straight onto A & E.
Fortunately, I wasn't an urgent case. However, unfortunately for the time this was (COVID), non-urgent cases were extremely low priority. I did, therefore, spend a night in hospital where I was extremely well looked after and fed, sparingly using my phone to save battery (good job I had it - but nobody was allowed to bring me a charger in because of isolation!).
Aftermath
I was initially put onto an extremely high dose of Levetiracetam. I would argue an uncomfortably high dose! The purpose of the medication kicked in right away and suddenly all these jerky hands were at bay. And to be honest, I wasn't necessarily happy about this. In a daft way, it felt like losing an old friend. More interestingly, my brain was still very aware of the need to spasm, got me prepared and then...nothing. Being a completist, this was most inconvenient! However, I got used to it.
I was signed off work for a few days because although I went back on the Tuesday (I worked in the medical centre, so was still fortunate enough to be able to go to work), this was just enough time for the side effects of Levetiracetam to kick in. And this included drowsiness and, as I like to say, 'zombification'. I could barely walk in a straight line and not half as fast as I used to, but interestingly my mind was incredibly active. More-so than ever before. I was requesting to watch films that were much more complex than my usual choices as a means to unwind (I think 'American Psycho' was watched), and I found that I was able to write an entire suite of music because my concentration had drastically improved. My mind was sharp, but it couldn't effectively translate to the rest of me!
Naturally, this led to further consultations and I was moved off that medication to Lamotrigine which cancelled out all the side effects but also cancelled out the effectiveness of keeping little jerks at bay. So I was put onto Sodium Valproate (Epilim), which I remain on.
But in the midst of all this, I sent the consultant the video I put together and asked if this were a warning sign. And he simply referred to them as myoclonic seizures. And so it turns out I'd been having mini seizures for several years! He also referred to 'focal seizure manifestation' - in other words it happens when I concentrate. Something I knew but never considered a condition.
Which opened my eyes to epilepsy. And whilst I'm grateful that it is very much under control, I still do think it is something that we can all learn more about and help to assist people with. I'm OK - aside from the one big seizure my life was hardly debilitated to begin with. However, they were often annoying and inconvenient, and when they were bad they could be preventative of certain things. So if you recognise anything from above in yourself then;
listen to your body and don't push yourself to the extremes of stress and
Speak to a GP and see if you can be referred to an epilepsy specialist or neurology clinic.
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