Data complete and accurate to 29th February 2024.
New longitudinal chart of absences experience by hour over a twenty-two period. This is the cat. Named after Schrödinger’s thought experiment of quantum dynamics. I like this analogy as when absent you are both conscious yet sub-conscious.
If you like this, you can always contact me and suggest a more fun name. The choice is yours. All joking apart, I found this useful in arranging practical things such as when or when not was a good time to be on a bus on my own. From this you can also see what time I have an evening meal. Yes, absences are more likely to happen when you are relaxed and ‘content’ with food.
It is also interesting to note that as with other neurological disorders, the link between our what is occurring in our digestive system and our brain is present. By that I mean, it is very common for those who have a neurotransmitter imbalance at the synaptic level, to have both a neurological neurodivergent trait and digestive divergent trait. For example, in the latter case, intolerances of certain foods.
Reason. Same key neurotransmitter serotonin. In the past I have often described the fact that we have ‘two brains’ as both rely heavily upon this neurotransmitter and the digestive system produces oodles of it.
For those who are really interested, it goes back to when you are a first bundle of cells after conception and the process by which the cells make a human.
In the manifestation of my seizures, this spike between 1900 and 2000 may well be an example of this, as this is typically my main meal time.
The next chart shows the reducing probability of seizure activity based upon the actions I took in managing both my physical and absence seizures. As the chart clearly shows, the outcome has been successful as evidenced by a significant reduction.
The following chart shows actual seizure activity by type over time. This again evidences the statement that a significant reduction in seizure activity has been achieved by using the mechanisms outlined in the Process Used document.
The following data relates to myself and is not representative of how others with functional seizures will be affected by the type, severity or time distribution. Everyone’s experience of functional seizures will be different to each individual. I make no bold claim as to generality of the techniques I use, the processes I use. Everyone who has functional seizures will experience their own unique experience. I offer this only as this is how I am approaching my journey.
A key point about functional seizures is that they are non destructive to the ‘physical’ structure of the brain. I have carefully put physical in quotes as the brain will structurally alter throughout ones life. A simple truth is neurogenesis. Functional seizures are of a disruptive nature to the neural network of interconnected neurons. The mechanism of disruption is not yet fully understood.
I have alluded to the analogy of ants elsewhere for good reason. Neural networks are ‘plastic’ they ‘learn’. In the context of functional seizures one of the key elements is to unlearn those pathways which lead to a seizure. It is also true, that the longer an individual has functional seizures without diagnosis and intervention, the ‘stronger’ the ‘imprinting’ of the neural network becomes. This ‘imprinting’ of the neurological processes which lead to a functional seizure will become the default ‘neurological’ activity. Crucially, this means it is harder to ‘unlearn’.
As with all neurological ‘disorders’ – early intervention is key. Firstly, to prevent the ‘strong’ imprinting. Think of those ants re-enforcing their pheronome trail to communicate with each other. Secondly, to allow neuroplasticity to reconfigure the neural network to unlearn the non-beneficial outcome which is a functional seizure.
Science always wins out. We just have to start to understand the neurological process which is a functional seizure, with more granularity so that more beneficial pathways of care can be provided to those who have functional seizures.
The data shown is one of the many tools I use to manage my seizures in a variety of ways. I am content with the uncertainty and doubt which having functional seizures brings to my life and I continue to learn about my functional seizures every day which helps me.
The way I approach functional seizures is that they are going to happen, and it is a case of minimising the probability of when they occur and how I do I go about just doing normal things each day. This should not be construed as a fatalistisc approach, rather I work through knowing everything I can about my seizures and then use that information I learn ‘against them’ to tame the tiger.
The way I achieve this is by learning the characteristics of each siezure type, the different aura which accompany each type and then by learning to unlearn the neurological process which led to that particular seizure event. I use extensive neuroplasticity techniques to achieve this and I am content with my progress.
It takes a time for you to ‘convince’ an ‘innate’ involuntary process to be tamed into becoming a voluntary action which ‘you allow’ to happen in a controlled way. That is not to say that I control my seizures fully. By definition they are an involuntary sub-conscious process which it is difficult to ‘interrupt’.
What I have been able to learn about my own seizures is that they can be classified into two major groupings, with one sub-class for the first.
The first grouping can be classified as physical. All seizures within this group have similar onsets but with slightly different auras. Within this group there are two classes. These can be characterised as being diurnal and nocturnal. These are represented in blue in the charts below.
The second grouping can be classified as absence. All seizures within this class tend to be diurnal and sadly I am not aware of any nocturnal absences as I am asleep. Interestingly, these absence seizures noticeably happen either when I am relaxed or shortly after having eaten. In the event that I am relaxed, and have something to eat, the probability of an absence rises.
Over time, I was able to cut out the middleman of the diurnal physical seizure event, which still leaves the start phase aura and end phase headache, but that in itself allows you to be more comfortable doing things such as going to work and to not be reduced to staying indoors ‘in case’ you have a seizure. Eventually, I diminished the physical seizure event so that I was no longer having physical seizures.
Having reduced my physical seizures, I then concentrated on reducing my absence seizures using the same process as outlined in the document Process Used
I enjoyed a period between March 2022 and August 2023 where I did not experience any physical seizures. Since then I have experienced a gradual increase in both physical and absence seizures.
I have tried to use simple non-technical language so as not to blind people with science so I apologise in advance if the names I give my seizures are not that which others may refer to elsewhere.
The colours represent
Blue – Type 1 full blown physical seizures both diurnal and nocturnal.
Red – Type 2 absence seizures of a diurnal nature.
Orange/Green/Purple – where I have a seizure but where that seizure has been ‘converted’ into just an onset aura and an end phase headache with no full blown type 1 physical seizure.
All of my seizures have a discrete aura, an event and then a post seizure headache.
This data is complete up to the 29th February 2024.
Now to highlight the usefulness as REM Sleep as a prodrome, that is to say a ‘long term weather forecast, consider the following chart. This is a crude high level measure of sleep by phases.
Ignore the 7h 50m – it is largely irrelevant for the point I make below. What I would like you to consider though, is the ‘green’ blocks shown by day. This is my REM sleep in comparison to other phases.
For the purposes of this explanation and experiment, just look at the change in the amount of ‘green’. Where there is a significantly lower amount of ‘green’ in the block, I have found that this directly correlates to a future period of seizure activity. Let me be clear, I am not saying that this is a 1:1 or direct predictor.
As I have explained elsewhere, there is a fundamental difference between the concepts of predicting an event and the probability of an event.
There are many elements which have to ‘line up’ for a seizure to occur. One does though have to consider the butterfly effect upon the neural network when the ‘equilibrium’ of the normal stasis of the neural network is affected which leads to a neural disturbance. This statistically INCREASES the probability of seizure activity. Using this as a way of being ‘aware’ that my probability has increased, allows me to be more careful and sensitive to changing the ‘environmental’ aspects of my day to day life. In the example below, after a ‘low’ green block – I then experienced seizures within 24 – 48 hours.
This was a controlled experiment no other seizures were experienced.
Enjoy, comment and let me know your thoughts that is how we will all learn. I have no magic bullet just a belief that we can figure this out with the right people involved. I am very open to all about my seizure activity as I find it a fascinating science project for me to get my teeth into. Serendipity.
‘I am interested in what it can do, not what it was designed for’