30th April 2022. 384 days after the first seizure event.
Good afternoon.
Let me begin with some numbers.
616 total seizures over 384 days and a current probability rate (PR) which has reduced from 6.88 per day on day one to now be 0.5 per day.
It may be a ‘medically incurable disorder’, but you can certainly learn to manage and to make changes which minimise the probability and the effect on your life.
This PR is the ‘likelyhood’ of me having a seizure or sequence of seizures in any one given day. I use another metric based upon REM sleep to manage the week ahead. Both metrics have proven to be useful indicators in the way I manage my seizures.
For the eagle eyed, in the data you will see the direct correlation between REM Sleep and future seizure activity.
The PR has gradually reduced over the past four months. There was a slight blip during that period. Not statistically significant. The biggest change I am now experiencing is the ‘switch’ to having reduced physical seizures and an increase in my absence seizures.
It is now just over a year since the sudden onset of my seizure activity.
As I write the number of episodes is a mere 616.
The normal monthly update report this has been commandeered for greater purpose this month.
Over the next four weeks or so, I am undertaking some intense activities with the support of the St George’s Neuro team.
The reason for doing this is to help me further understand my absence seizures and to make further progress.
You will see below a chart which shows my progress to date. It is rather pleasing.
There has been though a recent ‘switch’ in my seizure activity.
I view this as positive progress.
I could write a book (or another one) to explain how and why this ‘switch’ has occurred. I digress.
The purpose of the next four weeks is to apply even more focus upon my absence seizures to see if I can crack this little conundrum. Much in the same way that I have been able to bring the level of physical seizure activity down.
It will be challenging for myself and Miranda as it is likely that as with all neural changes, there will be an initial backward step as the neural network ‘fights back’ and tries to preserve its old pathways.
So we are going to a nice place we know in Cyprus to cover the last two weeks of the four.
Well, why not.
As if we needed an excuse.
As an aside, my math teacher used to teach me the rules of trigonometry by looking at trees and nature’s beautiful symmetry outside on the playing fields in the sunshine. Best way to learn pure math and applied math at the same time. Same process for neural networks right.
Pure, applied, quantum mechanics, bit of Nash to boot. And of course Penrose. It is a calculation I have been working on for a year now. As with my seizures, work in progress. Maybe I will figure both out simultaneously.
I’ll be doing the math, Miranda will be relaxing.
Now let me turn to the data. The focus is on the the ‘switch’ and learning as much as I can about my absence seizures.
As you can see from the above, there has been a crossover and I think is the change which both I and Miranda have noticed. Something has changed. It may well be that this crossover represents a more long lasting ‘state change’ in the neural network.
What do I mean by this. Well, imagine that which is happening to disrupt the neural network is ‘the event’. In the first days, something happened which tilted my predisposition to having seizures (‘a neural disturbance’) from not having them, to having them.
If you read my post on 21 March, I further expand upon this.
Once the neural network had experienced many, in fact in excess of 100 of these ‘events’ happening in a short period of time, the neural network adopted the outcome of a seizure ‘the manifestation’, as being the correct and default learnt response.
The event can then manifest itself when a future ‘neural disturbance’ occurs and be observed by others as one of two visible episodes. The source or more correctly, the mechanism of both events is the same but the outcome is different.
What I have been doing is focussing very much on learning how to ‘manage’ the event which manifests itself as a physical seizure. What I have been doing is consciously ‘unlearning’ the sub-conscious ‘learnt’ response.
The evidence to date, supports the view that I am doing something right as the number of physical seizures per month is reducing. What I also learnt to do was to move the physical seizure. This was after I had ‘mastered’ the duck quacking technique.
Through this process, I learnt how to control my left hand and arm, and watch the seizure move to the right hand and arm. This was if the seizure (and no, I do not believe a seizure is a sentient being – we are all just a bunch of proteins and a seizure is an organic event) had to find a way of manifesting itself, elsewhere within the neural network.
To imagine this, think of ripples on a pond. Throw a pebble in to a pond and watch the ripple. If there is a rock in the middle of the pond and the ripple hits it, the ripple changes its direction.
The ripple still exists and is seen, but elsewhere.
At the same time, I have as previously indicated, found it difficult to learn the aura of my absence seizures. I am still learning but have learnt some signs in the past few months and I am now able to at least decide as to whether I need to go and have a lie down.
If you then put together my unlearning the physical seizure default response, the seizure trying to find another pathway and my immature understanding of the absence aura, one would expect a higher number of absences as these start to increase with a comparable decrease in physical seizures.
The number of events is the same. The mechanism is the same, The manifestation is different.
If it is the case that this crossover is this, this bodes well as I further understand my absences and can ‘unlearn’ this default response.
What about the overall seizures and the so called probability rate.
As you can see, my comments which I made last month about the way in which a neural network ‘learns’ remain. The step function is still there. The PR is currently now sits at 0.5. This means that on any given day my ‘likelyhood’ of having a seizure or sequence of seizures is 0.5.
I have updated the Seizure Analysis page with the more data but for me these are the key metrics I am using now.
You can see the full data on the Seizure Analysis page. This has data up to and including 30th April 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.