31st July 2022. 476 days after the first seizure event.
Good afternoon.
Let me begin with some numbers.
626 total seizures over 476 days and a current probability rate (PR) which has reduced from 6.88 per day on day one to now be between 0.03 and 0.09 per day.
This PR is the ‘likelyhood’ of me having a seizure or sequence of seizures in any one given day.
Last physical seizure 153 days ago.
Last absence seizure 19 days ago and a total of 5 absence seizures in the past 61 days – the frequency is reducing. The last absence ‘seizure’ was a sequence on one day which lasted for a period of around fifty minutes.
Let me offer some thoughts on this ‘progress’ graphic.
Yes, there has been a ‘slight’ uptick in absence seizures. In fact from two in June to three in July. Believe you me, I can accept quite readily such a ‘absolute’ increase of one. But what could be a predisposition of this slight uptick.
The answer here lies within a simple truth. This is that the brain, that most adaptive of ‘organs’ we have, learns through every experience. It ‘imprints’ sensory input and the ‘actions’ which the brain takes in response. What this means in practice, is that once you have had a functional seizure the brain is ‘primed’ to do the same again if the ‘sensory’ input it is receiving matches that which ‘it’ imprinted. The brain in a probabilistic way determines that the ‘best’ outcome for the ‘sensations’ it has received is as before. This will repeat until a more beneficial pathway takes ‘precedence’ as the default learnt response.
Now what happened in the few days before my sequence of three absences in July which in total spanned a period of some fifty minutes in total.
I was suffering from another middle ear infection. For those of you following my story, which will be different to others, it began after a period of chronic ear infections. The initial onset of a very large number of functional seizures over a very short period of time occurred after the initial cycle of ear infections which led to mastoiditis. This may have created the prerequisites to trigger a predisposition resulting in the onset.
So the slight uptick may be explained by suggesting that the brain, or rather the neural network, still had some ‘preferred’ neural pathways (aka default learnt responses) which led to an absence seizure. I say some, as the process of ‘relearning’ and ‘replacing’ existing pathways with more beneficial ones over the past sixteen months has clearly reduced my seizure actively dramatically. The process I have used is the innate power of the brains neuroplasticity. I want to be clear though that the neural network is not a ‘product’ which you buy, install and should it start to become a little different in its ‘performance’ you can go back to the seller and ask for a ‘like for like’ replacement. The brains power is to adapt. To learn. To be ‘retrained’.
I now want to turn explore a little further about my overall progress if I may.
Before I do this though, it is important that some context is set as to the impact which functional seizures have upon people who experience them.
This is my own personal perspective. Others may agree or disagree as everyone will see and experience their functional seizure activity through their own’ lense’ of that which they have experienced.
I firmly believe that everyone’s experience will be unique and individual to them. I have never held the view that there is a ‘single’ causative ‘easy to fix’ factor, that functional seizures can be explained in ‘black and white terms’. They are not simple.
They are a manifestation of being a sentient being. How else would we be able to explain them without being such.
My approach has been to learn about their characteristics as I experience them, and to take conscious actions of bringing the ‘involuntary’ into the ‘voluntary’. Moving from the sub-conscious to the conscious. Challenging the variety of ‘human’ mechanisms such as the autonomous system et al, by focus and attention.
Functional seizures are life changing. They are not minor events. They significantly impact those who experience them and those around them.
At a very personal level, your independence and in some ways, ambitions or aspirations are affected, altered and ultimately adapted.
There is life before functional seizures, during the period you are experiencing functional seizures and life after functional seizures. Three different stages.
I am moving into the third stage. It should be understood though, that this stage is not a ‘like for like’ replacement of the first stage. It is a different phase. To coin a phrase, I have moved on – to a ‘different’ place.
I say this to balance the view that some may conclude that as my functional seizures have reduced, this in some way has returned me to the stage of before seizures. A cure. It is not. It is a process of enhancement and adaptation by ‘adding’ new, more beneficial neural pathways.
Let me explain this by way of analogy.
For the purpose of this analogy, let us accept the current view that functional seizures are a manifestation of the complex interplay of ‘messaging’ in the entirety of the human body. For whatever reason, it is working differently than usual, whatever usual is.
Now consider our use of language. We all have a primary language. Our first language. Mine is English. It does not matter that it is English. We learn this, but there exists within us an innate ability to learn language. The brain combines its fundamental and innate ability with our environmental language and the ‘manifestation’ is I talk to people in English.
Having mastered my use of English over many years I go to sleep one night content.
I wake one morning though and there is a strange, unusual noise coming from outside. I go outside of my room and everyone around my is conversing in a language I do not understand.
Unbeknownst to me, overnight I was ‘tele-ported’ to a remote village in a different country. Let us call this France.
I try to talk in English, and no-one understands me. I cannot understand them. My usual messaging is not getting through. What am I to do ?
I choose to learn a second language. Let us say, ‘La langue francaise’ as I am in this unusual place called France. It takes me time. I have to learn new words. I stumble but with support I start to grasp the new words. Words become sentences.
Having mastered this second language, I now converse by ‘choice’ in this second language. Have I ‘lost’ the ability to talk and experience the language of English. Not so. Perhaps sometimes to lapse into a mixture of my first language and secondary. This may happen. Will I ever lose the ability to talk in English. Probably not.
However, I have interrupted the default primary language of English (the language of the seizure in this analogy) and now use the second to communicate.
I am consciously choosing to use ‘La lingue francaise’ in the way I communicate. I have added new neural pathways. I now communicate differently. It may well be that I do not have the full and rich ‘thesaurus’ of words in my second language, but I can add to these by practice. By ‘choosing’ to use my second language over my first.
A conscious decision on my part which over time becomes the sub-conscious ‘default’ way of talking to people.
In the same way that we ask those people who diagnose to be honest with us, we also must be honest with ourselves. We have to learn new ways. For me, I chose to learn about my auras, my triggers, or if you like, the language of my seizures. I shortened the seizure activity. This was through a process of distraction, interrupt and diminish. It can be done.
I have always been careful as to not suggest that there exists a ‘cure’. Rather neuroplasticity allows us to learn new ways. Of adapting. After all, that is our key strength.
On a much wider point, there is not the perfect ‘human being’. A reference model to which we compare ourselves against and which allows us to identify what we need to be, to do, to arrive at a place where we exactly match that ‘perfect description’.
We are unique.
We all have that wonderful trait which is to be perfectly imperfect. I have always railed against words such as ‘deficit’, ‘disorder’ as the implications of such ideologies is that in some way, this conveys a picture of being lesser for being different.
Au contraire, we are more both as individuals and as a society as a consequence of being different.
Should anyone ever meet someone, and through conversation be told by this acquaintance that, ‘their world and life’ is perfect, I would simply say, this is a lie to both themselves and to others.
I have been asked by some as to how I have managed my absence seizures.
My experience of functional seizures has been of two distinct manifestations. Full body physical seizures and absence seizures where, as the word describes I become absent.
They were my ‘bete-noir’ and it took me many months to be able to ‘interrupt’ them and to consequently reduce their manifestation. I have put together my views on my absence seizures and these can be found at Absence Seizures.
Likewise, after experiencing functional seizures for the past sixteen months and ‘learning’ to manage them, there are some musings which I have put together. I hope that in some small way others may be able to relate to these. These musing are not intended to be a definitive answer to a question which as yet remains unanswered. How does the brain really work. No one really knows.
For me, it was always about finding a practical way going forward. To allow me to function, whatever that truly means. This can be found at Musings 16 months on.
I have updated the Seizure Analysis page with the more data but for me these are the key metrics I am using now. This includes a specific example of how REM Sleep can be shown to be a prodrome for my types of absence seizures.
You can see the full data on the Seizure Analysis page. This has data up to and including 31st July 2022.
Thank you for reading my story. I find my functional seizures fascinating and for me they continue to be a great science project for me to get my teeth into. As ever I remain very positive.
To experience is to live, and that is our purpose, whilst we await for our telomeres to finally unravel, and we depart this oasis which sits in the vastness of the universe.