30th November 2022. 598 days after the first seizure event.
Let me begin with some numbers.
635 total seizures over 598 days and a current probability rate (PR) which has reduced from 6.88 per day on day one to now has been stable at between 0.03 and 0.06 per day for three months.
This PR is the ‘likelihood’ of me having a seizure or sequence of seizures in any one given day.
Below are the two current overall progress charts I use to measure how ‘I am doing’ -the effect and impact of harnessing the innate power of neuroplasticity.
This shows that my last full on whole body physical seizure was 274 days ago, my last absence seizure 25 days ago and my last tonic seizure was 23 days ago.
When I started the process of reducing my probability, I did not set myself a particular goal of achieving a reduction to a specific number by a given date. Rather my goal was to consistently reduce the number of seizures as it is the repetitive nature of interruption and ‘unpicking’ the seizure process, which leads to the ultimate reduction. I mention the days here as their only significance is that after 365 days of being seizure free, I may consider reapplying from my driving licence.
Hope springs eternal. However, I am realistic, and it is likely that such an application may never happen. I hold the simple view that it is not safe for me to drive a car for the many reasons I have given previously. The top one being a risk to the welfare of others let alone myself.
You will see above that I have made a reference to ‘tonic’ seizures. For me, this means where I actually lose consciousness and ‘crumple’ where I am. This type of seizure is for me the worst manifestation of the seizure process. Not because of the seizure itself, but what you potentially meet on the way down upon the short journey to the floor. They are very different to physical seizures which can be quite violent with arms and legs in all directions. Very different to absence seizures where I am generally in a more relaxed mood and enter that strange ‘in between world’ of the cat where quantum mechanics explain the experience of being both the conscious and subconscious state simultaneously.
Tonic seizures are where I really do lose consciousness.
The light switch is turned off.
Thankfully, the number of tonic seizures I have experienced is less than ten (< 1% of overall seizures) but everyone is a wakeup call as to their potential.
Previously I have dropped onto soft furnishings. This event left me on the stairs at my workplace. I was fortunate that I was walking up the stairs and so my inertia made me fall upwards and not backwards. I already make sure that I hold on to handrails when walking downstairs due to previous experiences and this recent event has just reminded me that one should never take our good friend ‘fickle nature’ for granted as there are always experiences it wants to us to enjoy and learn from. But enough of that.
Let me move to more positive thoughts and in particular my friend the cat. I have variously called this picture a number of names, yet I do like the simple name ‘The Cat’. Why is this. Here is the current version with twenty months of data behind it.
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 30th November 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.