31st December 2022. 629 days after the first seizure event.
Let me begin with some numbers.
638 total seizures over 629 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 four 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.
As of Saturday 31st December 2022, some 21 months on from my first seizure event. Having experienced 638 seizures with my last full body physical seizure 305 days ago, my last absence seizure 10 days ago and my last atonic seizure 54 days ago.
Some may ask the significance of the days. To me, the only significance is that after 365 days of no seizure activity without prior warning one might consider reapplying for a driving licence.
A key metric I have used to manage my seizure activity is the probability of me having a seizure or sequence of seizures. After 21 months, this probability is very low and shows I only experience absences of around 1 a month in total.
Almost everyone, with or without functional seizures will experience ‘moments’ when they are ‘zoned out’. So this number is probably no greater than the population norm.
I have developed my own short term, medium term and long term weather forecast, based upon biometrics and have a pretty good idea of when it ‘is going to rain’.
Hope springs eternal.
This month I am just going to share a note I put out to my colleagues as it sums up my thoughts.
“As the year comes to a close, I wanted to offer an update on my seizure activity and to thank everyone for the support given to me throughout the year.
I remain very open about this.
Since onset, I have experienced 638 seizures.
As a consequence of collecting data on myself, I have been able to build a very good evidence-based model as to when I am likely to experience a seizure and when my ‘probability’ is higher than usual.
This in turn, has allowed me to develop a long term, medium term and short term ‘weather forecast’. Managing them as best I can. Broadly speaking, I know when it is to going ‘to rain’. As with all weather forecasts, it is not a perfect system, but it is good enough for me. Allied to this, I have been able to identify early biometric markers which I have found to be of practical use.
My expectation is that it is unlikely that the future will be completely seizure free.
The brain is a most curious piece of nature which remains ‘yet to be fully understood’.
I am content with this and continue to have a positive approach. After all, I have managed to reduce their occurrence considerably. That said, I have experienced a relative uptick in the past few months. I will continue to monitor this.
So, to some pretty graphics from my longitudinal study – I have oodles of data which has been shared with others already. Some have taken a measure of comfort from the data. Remarking on the reduction. Adopting some of the techniques I have used.
Through speaking to others and by reading current literature/studies, it is apparent to me, that I am fortunate to have been able to reduce my seizure activity by such an extent. The majority are not so fortunate in their outcomes, so it would seem that I am doing something right.
The first is a polynomial chart which I use to monitor my ‘relative’ progress and trend on a month-by-month basis. The numbers here are relative numbers. The second being the ‘relative’ seizure activity by hour of the day which is useful for me to plan my days.
I am very grateful to everyone for the support I have received and I appreciate the adjustments which have been made for me which have contributed to the above.
May I wish both you and your families the very best of wishes for the festive season and a happy new year. I am sure that all the little children have been good, that Santa will visit everyone’s house and that there will be much fun.
There is always sunshine after the rain.
Now for the image of the year (and century for that matter) which as always gives me perspective. Some will have seen this before. It is truly iconic taken by the James Webb telescope which surpasses that of a similar one taken by Hubble a few decades ago. It is commonly known as the Pillars of Creation.“
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 December 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.