30th September 2022. 537 days after the first seizure event.
Let me begin with some numbers.
630 total seizures over 537 days and a current probability rate (PR) which has reduced from 6.88 per day on day one to now be between 0.03 and 0.06 per day.
This PR is the ‘likelyhood’ of me having a seizure or sequence of seizures in any one given day.
September was a busy month so this update is a little tardy, but for good reason.
The big news of September was that I had the privilege of walking my daughter Emma, down the aisle. Experiencing a truly special moment as she and her husband to be, gave their vows to each other.
I said this on the day, and I will repeat it here again; a magical moment for both of them. The day was one of the happiest and proudest days of my life. So here are two photographs which capture some of the mood. I have permission to publish these.
Some have asked, did I have a seizure on the day. No, I did not.
I had prepared myself well, using the long-term, medium-term, and short-term ‘weather’ forecast which I have used since onset, to manage my seizures. My long-term forecast is around seven days prior; my medium-term forecast is around seventy-two hours prior and my short-term is a few minutes to ten seconds prior.
A bit of a play on words as this relates to my identifiable prodromes and aura’s and ‘whether or not’ the seizure process is ‘forming’. The probability.
Of course, I have not forgotten the triggers which happen in between the prodrome and the aura and which are also key when understanding my seizure process.
During the day, I made sure that I put into practice all that I have learnt about managing my seizures.
I made sure that I never reached the ‘tipping point’ of absence seizure onset. I avoided excessive exposure to my known triggers, mainly noise and the ‘busy-ness’ of lots of people having multiple conversations. A combination of simple timeouts and listening to my ‘tailored’ music via earphones enabled this. For those interested in the use of specific frequencies of music to interrupt the seizure process, as opposed to distraction, I have found that certain rhythmic music and at particular frequencies useful as part of the neural entrainment process.
Now to progress.
By now, people will hopefully have become accustomed to these charts which shows the evidence of a progressive reduction in both physical seizures and absence seizures coupled with an overall reduction of the probability of a ‘seizure event’.
It is now some six months since my last physical seizure, and I now only experience absence seizures which continue to reduce in both numbers and frequency.
I experienced a total of two absence seizures in the month which occurred on different days. Both had a prior prodrome of low REM Sleep c.72 hours beforehand. This link between absences and REM Sleep is consistent with previous data. This ‘flatling’ of both seizure types remains encouraging and it further supports that my use of aura and prodrome analysis may be a useful mechanism for ‘managing down’ the probability of seizures.
Towards the end of the month I travelled again to Cyprus with the following in my mind.
‘A year ago, we went to Cyprus on holiday which allowed me to compare, contrast and to start to understand my absence seizures. They were the most difficult to ‘understand’ their onset process and to get to grips with, leading to being able to diminish them.
Whilst there, we stopped one day at a vista overlooking the bay at Pomos. There is a small cafe just set back from the road. At the service desk, low tech yet functional, I asked for a diet coke for Miranda and a bottle of water for myself. The kind lady who I had never met before, passed to me the two bottles and commented ‘You look tired’.
I did. I sat down and had back-to-back absence seizures. Their duration was just over half an hour. My neural network had entered that weird and wonderful world of being both sub-conscious and yet conscious simultaneously.
The state I call ‘the cat’ after Schrödinger’s famous description of the quantum thought experiment.
Run forward one year. I am returning to Cyprus in a few days’ time. It will be the second time this year.
My plan is to once again go the vista at Pomos. To seek out this kind lady and ask her opinion of my health.
I think that she will be pleasantly surprised.
And here is the evidence. Neuroplasticity in action.’
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 September 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.