31st May 2022. 415 days after the first seizure event.
Good afternoon.
Let me begin with some numbers.
621 total seizures over 415 days and a current probability rate (PR) which has reduced from 6.88 per day on day one to now be 0.16 per day.
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.
This month’s update can be simply summarised in a few words and then two pictures.
And this is what happens when you apply science and rationality. After all, as once said by a rather smart guy (Feynman) “science teaches us how to deal with doubt and uncertainty as no-one really knows.”
I have flatlined at 0, zero, null points in eurospeak, physical seizures with just the absences to continue to work on and they are reducing. My last full body physical seizure was some 92 days ago.
This final picture which shows the probability, also shows a graphical representation of adaptations which have taken place in the neural network. If you were to invert the graph, this is exactly the profile you would see if the neural network was ‘learning’ something new and laying down ‘firm’ ‘imprintments’.
Consider the development of a child in the way it learns to walk. Learn, plateau, learn some more, plateau, learn and then exponentially they are off, never to be sat still again. This strongly supports the view that the pathways leading to a seizure have been ‘unlearnt’ and replaced with far more beneficial pathways. Let us be measured though and see what a further 30 days shows us before we move from a supporting view to a concluding view.
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 May 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.