28th February 2023. 688 days after the first seizure event.
Let me build upon the statement I made last month with another very happy comment.
At T + 688 days (t=onset) I remain at the magic number of 0, null points, zip – all types of seizure for > 64 days.
- last physical seizure > 364 days ago
- last drop attack > 64 days ago
- last absence seizure > 70 days ago
- last tonic seizure > 113 days ago
Truly special thanks beyond words to all of my amazing family who have been so, so supportive and understanding throughout this learning curve. At T0, no one really understood what was happening, how long the road was or even where it went. Tis early days at 0, however the longer at 0, the stronger the imprinting becomes of new neural pathways replacing the ‘dodgy ones’ which would have led to seizure activity. I’ve put a bit of extra effort into my intervention routines over the past few months to reduce the activity which had plateaued at 0.06. Cautiously optimistic – nature is a fickle creature. Quietly though, very pleased indeed with this.
To celebrate, we’ll not really, we need a holiday. We are flying for the sixth time since onset. It gets easier every time. We will be returning to Fuerteventura, where we went on honeymoon several decades ago. I will though be taking my customary special seat with me, just in case I need to be put into the cabin crews ‘naughty corner’ during the flight – picture below.
Here is a comment I wrote about my first flight after onset, and how I had approached it. I have used the same mechanisms for subsequent flights and have found them useful.
‘By the time of the first flight I had also learnt how to bring my physical seizures under control so that I just experienced the pre-ictal aura and then the post-ictal headache (no actual full body seizure).
I learnt this by what I call the ‘duck quacking’ technique. I did have some absence seizures on my first flight.
Other practicalities. I wear a sunflower lanyard whilst travelling as being in a place with lots of people/noise/sensory input makes me more likely to need more time to process everything as I am trying to concentrate on not having a seizure by distraction and interruption.
This means I can become quite ‘flummoxed’ with even a simple request of ‘passport please’ plus there is the added ‘busy ness’ of being in a queue process where you are under a ‘forced’ response time.
The lanyard is also more useful abroad as Europeans tend to me more aware of it and genuinely give you extra time and space.
Be prepared for a long day and take every opportunity to find quiet relaxing places when travelling. Airports have them you just need to find them.
One unintended consequence of booking seats with extra leg room and then telling the cabin crew that I may have a seizure is that they asked me to move as the extra leg room seats are also the emergency exit.
I jokingly said that in the event of the need to use the emergency exit – just throw me out of the door – as it is highly likely that the emergency is more ‘needy’ than me having a seizure.
I believe in humour and laughing at myself. Others may not, so no offence is intended.
Having read this far you may think well what a palava – no.
It is worth it.
The process of travel is just a means to an end. The true benefit is the holiday itself.‘
On current predictions the departure day numbers will be
Last physical seizure > 387 & beyond 365
Last drop attack > 87 & below 90
Last absence seizure > 93 & beyond 90
Last atonic seizure > 136 & beyond 90
The second figure is where you need to be before the DVLA consider issuing a medical term driving licence. 365 and 90 respectively. Food for some intellectual thought whilst away, as to would it be safe for me and others. Anyway seats booked and a discussion to be had whilst away.
638 total seizures over 688 days and a current probability rate (PR) which has reduced from 6.88 per day on day one to now be at 0 with a two month future forecast based upon historical data showing the following for the next two months. Let me see if the model works in two months time to see the comparison of forecast to actual.
This PR is the ‘likelihood’ of me having a seizure or sequence of seizures in any one given day.
Below is the actual number of seizures over the past 23 months by type showing the reduction.
What follows is a short piece I wrote some time ago.
A little bit of light relief. I often find humour helps.
True story.
That “too much custard” moment.
Forgive my sense of humour and I hope that this does not offend anyone. This is not my intent.
At the start of my journey, I was admitted to hospital.
A few days into my stay, no-one knew what was causing me to have seizures. Every now and then, junior doctors would come and have a look at me, especially when I was having a seizure.
There was much interest and an ever-greater feeling of perplexity as they walked away not knowing what to do. Even during the night.
One lunchtime I was just finishing my apple crumble and custard and I felt a seizure sequence beginning and I pressed the nurse call button.
At that time, my physical seizures were very physical and required me to be contained by at least two people, lest I left the bed and ended up on the floor. Guard rails are not that high on hospital beds.
I experienced the seizure sequence.
Afterwards when my senses returned, I was thinking about things, and I said to the nurses playfully: ‘too much custard’ and smiled.
This confirmed to all that I had lost the plot.
In the absence of any diagnosis, the nurses continued to kindly push me around the ward in a wheelchair and from time to time, to the outside world for some fresh air. Afraid to let me walk in case something untoward would happen.
Custard is clearly a dangerous foodstuff lurking with dark intent.
Once I had been a good boy and had been captured on video and EEG having a seizure sequence, my friendly neurologist came to see me to discuss his thoughts.
He said drily to me ‘so, too much custard I hear’. We both smiled at each ruefully, as if to say, ‘shall we call this condition, too much custard then ?’
In the absence of any understanding, the word on the ward and amongst the medical staff had become ‘it’s all about custard, you know, I saw it with my own two eyes.’
We both knew considerably more than that.
In the weeks following, the very same neurologist invited me to give a short talk to some of the aspiring junior doctors and future neurologists as to what ‘a functional seizure is’ from the patient’s perspective, and what were my individual experiences.
They had a 90-minute introduction on the topic. I left with them a key message
a) there is more to custard than meets the eye, and it comes in many flavours.
I offered them the analogy of ants to read and further expanded upon a potential root cause of my seizure’s.
Several months of severe ear infections and mastoiditis.
To move the conversation forward in a light-hearted way, I suggested that the effect of eating custard had not left me with a lifelong psychological trauma which would lead to future seizures. Nor had I previously experienced a psychological custard trauma which would manifest itself as being of a fraudulent Freudian construct.
In the custard moment, what this simply showed was that there was a direct biomarker and biological process leading to a custard seizure. This is the release of neurotransmitters from the digestive tract to the brain causing an overflow, a perturbance to the equilibrium, timing, and latency (sticky custard effect) within the neural network at many levels.
In my case leading to a physical seizure and then an absence seizure.
Me thinks they will remember the talk on custard. This being a metaphor for the work of neurotransmitters upon a given part of the brain which has been pre-disposed to be hypersensitive to ‘what it considers to be a threat’ and which had previously resulted in a neural network disturbance.
Multiple infections.
Remember being alive is a perpetual reaction between symbiotic proteins and authoritarian proteins.
This can contribute to a previously primed neural network entering the seizure process where the neural network timing, sequencing, and messaging moves from its normal state of equilibrium to the quantum state where conscious and subconscious try to and do coexist.
The seizure is a symptom and has become the default learnt response or course of action to take.
As an aside, I have a sweet tooth.
In the same way that apple crumble and custard metabolise to serotonin, chocolate metabolises to dopamine.
From custard to chocolate, the latter which I have used to interrupt both physical seizures and absences seizures once they are in both the pre-ictal and ictal phase.
I prefer milk chocolate.
I know of others who eat darker chocolate, after all it is a matter of taste.
If nothing else a reason to treat yourself and your brain to some chocolate.
So, if you are at home eating some apple crumble or in a coffee house having a yummy cake made with milk your probability of an absence seizure may rise as the neurotransmitters from the gut cross the blood brain barrier and join the party. Takes a few minutes. Not long.
In time though, the very same mechanism which resulted in the absence, will correct itself and normality, whatever that means, returns.
The ants do find their line again.
If you look at my ‘cat profile’, you see the times of the day I generally eat stuff which rapidly metabolises.
This also gives an insight into why low dosage SSRI medication is often given without a real explanation.
You may also wish to read an article published in Nature written Mark Edwards, Mahinda Yogarajah & Jon Stone – Nature Article Note this is a shared document so the link may not be permanent as it is provided open access by the publisher.
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 28th February 2023.
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.