31st March 2022. 354 days after the first seizure event. Not quite 12 months on, but near enough.
Good afternoon.
Let me begin with some numbers and a few pictures. Well, it is now nearly a year and the data is interesting.
601 total seizures over 354 days and a current probability rate (PR) of 1.03 per day. This PR has gradually increased over the past three months. The biggest change I am now experiencing and to which I alluded to some months ago, is a disruption to my language processing.
An an aside, you will have probably seen recent press about Aphasia. With some certainty, I can confirm that I have neither starred in any RED (Retired, Extremely Dangerous) films nor do I have his money, but I can empathise. Personally, I preferred RED 1 to all the other films. It appealed to my sense of humour greatly.
Firstly, let me introduce you to a picture I drew at the outset when I was trying to figure out what was going on. If you pick up any medical textbook, you will probably find a better picture somewhere of the nerves within our body. Likewise, if you were to talk to anyone who has similar seizures to myself, they will have their own picture of how they perceive their condition. As the seizures are a consequence of a ‘neural’ phenomenon, the manifestation and presentation will ‘broadly’ be similar but unique to the individual. They (seizures) are idiosyncratic.
I named my idiosyncratic condition the Insidious Little Bastard and here is what I perceive it be in a picture. Apologies, it is a bit busy and has lots of concepts. I used it initially to figure out the best way to bring my physical seizures under control using the duck quacking technique. It also is one of the diagrams I used to start to work out the dimensions of time, distance and density of the neural network math I have been working on. I have other diagrams. I am no artist by the way.
Now let me turn to the data.
What I have perceived, and what has been fed back to me primarily by Miranda is as follows. In short, since January of this year, I am more variable, and the ‘perception’ is that I have more ‘bad days’ than ‘good days’. I do find that I become mentally tired more easily and I am resting a great deal more now than I was a year ago. Some days, I may need a morning siesta and then an afternoon one. For some considerable time, my useful day finishes around 2000-2030. After this, I am generally just trying to relax, and I listen to music.
Of course, I could just be getting old !! I am told that most of us decline gracefully, I am hoping for the same.
I am also perceiving that my diurnal physical seizures have in fact reduced, yet my diurnal absence seizures have increased. My siestas tend to either coincide with my absences, by virtue that I either know I am ‘feeling’ like an absence so I will go and rest, or whilst resting and being relaxed I will become absent.
This is quite nicely shown here.
As you can see, 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 at just above 1 per day.
I have updated the Seizure Analysis page with the more data but for me these are the key metrics I am using now.
For a little bit of off topic amusement I have also added a post on 2nd April. It is the case that many Neurologists et al, try to explain seizures using the following metaphor. The wiring of the brain is intact, it is just the software (of the brain) which needs a reboot. This metaphor is widely used.
All I will say is read the post about Apollo 11, and then answer the philosophical question, did the Apollo 11 software exhibit any form a quantum plus thought.
Feynman has a better way of putting it when answering ‘when we look at a piece of steak, are you seeing the object or the photon’.
You can see the full data on the Seizure Analysis page. This has data up to and including 31st March 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.