31st December 2021. 264 days after the first seizure event.
Good afternoon.
Let me begin with some numbers.
521 total seizures – that’s life monthly rate appears to have ‘plateaued’
264 days since first seizure sequence – that’s life
35 seizures in December an increase from November – the ‘Christmas’ effect
17 days during the month without a seizure of any type – the ‘Christmas’ effect
14 days during the month with a seizure of any type – the ‘Christmas’ effect
21:2 ratio of nocturnal physical:absence seizures – broadly neutral
1:7 ratio of diurnal physical:absence seizures – the ‘Christmas’ effect
At first glance this would seem to be a slight regression, or increase if you will on my seizure activity. Yet, what if we look a little closer, what does the data reveal. I shall return to this later, and specifically the ‘Christmas effect’, but before I do, let me share something which I feel is rather interesting.
The 2 kHz diurnal seizure.
I can hear the comments now. What on earth he is on about, or even what planet is he on. Indulge me for a moment.
As ever, I caution people that these are just my thoughts and musings on my seizures. I am no expert nor do I claim any definitive knowledge on the subject matter. I just live with and experience them. I have found that writing about them, trying to describe them helps me. Others will have their own individual way of internalising what they experience. Further everyone’s experience of functional seizures will be unique to them.
Vive la difference and if it works for you, go for it. That is what is important.
As is evident now, my diurnal physical seizures have a predominant trigger. In the first few months, all I could say was that this was a ‘sensory overload’. Over time and through keeping a record of seizure activity, I have narrowed this down to be a particular sense ‘overloading’ my neural network. Having confirmed this, further investigation has shown that a specific frequency can induce a diurnal physical seizure.
On 22 December I wrote the following. I must stress that I do not recommend conducting such experiments on yourself or upon others. This was my choice to allow the inducement of diurnal seizures. I was at the time in a safe clinical environment.
‘In May I described how functional seizures could be compared to ants and how they react when the line is broken. This was my analogy as to how neural networks responded to a perturbance event. In the ant analogy the perturbation was caused by drawing a line though the pheromone path ants leave to allow themselves to communicate and form the line etc. The article is here.
http://www.spencerdavida.com/Ants%20090721.pdf
But what about the human brain. What could have such a fundamental effect of causing a perturbance of the neural network which would lead to the sensory disorder, the loss of synchronicity and timing which the neural network works within. Ultimately leading to functional seizures.
A perturbance within the neural network would be unpredictable in outcome but predictable in the way the neural network degrades, as it is has to reconfigure itself from the initial perturbance. Likewise the length of time of perturbance would be predictable as the neural network regains its statis.
But what we see is the after effect of the perturbance. What event could cause such a fundamental perturbance.
Well let us now consider what it is we measure when we measure brainwaves.
There are different types each working at different frequencies. An EEG records these to rule out epileptiform waves which are related to ‘classic’ epilepsy. These typically are localised (focal) and you can point to the area in the brain where specific uncontrolled electrical activity is taking place.
But what if we are looking at the wrong data when trying to confirm the presence of a neural perturbance at a specific frequency which has a consequence of causing the initial perturbance leading to manifestation of a non focal seizure. Interesting hypothesis.
But a hypothesis unobserved is as all hypotheses are. Unproven.
Now to address that, what if we ran a lab test where we created a neural perturbance purposefully to see at what frequency a non focal seizure event could be induced. To prove the point, one would have to do this in a controlled manner and demonstrate that the introduced perturbance directly resulted in a functional seizure event.
Further to demonstrate it was not a focal seizure you would have to conduct the experiment on both hemispheres. Who would do such a mad experiment to prove that at 2 kHz, non focal functional seizures can be induced as a direct consequence of a neural perturbance at 2 kHz affecting the entire neural network causing it to enter a seizure event.
I did.
Now this has been observed, and I have good data, the next step is to persuade someone to wire me up for a EEG.
That way the final link is made and shows that delta waves at a specific frequency through the auditory neural network are perturbed to the extent that resonance occurs causing the overall neural network to seize or at least behave like those ants.
Delta waves at 2 kHz are the key and if it is the case that the perturbance of the neural network at this frequency is upon the delta waves, then this would result in many of the downstream events characterised by an event which is called a functional seizure.
Delta waves gone haywire or at resonance.’
For those wanting to explore this further, there is a natural resonance within various structures of the body. This has been demonstrated over the years. The 2 kHz frequency is within the spectrum of the natural resonance of the human skull and bones contained with it. For those anatomically interested, the small bones which allow you to hear, are part of a bony structure which migrated from the jaw during our evolutionary period. Originally used to pick up other creature noises, otherwise known as lunch. The jawbone would be rested on the ground to detect low frequency vibrations. ‘Honey, call the kids, lunch is on its way’. Clearly, the last statement was never heard nor recorded and is added for a bit of light relief.
We are all the product of simple proteins which through a propensity to evolve through billions of iterative replications, ‘exhibit’ evolutionary advantage. Sometimes, that evolutionary advantage also has a consequence of unintended consequences. Is that one way of explaining involuntary action. I say that last statement with some measure of tongue in cheek but to make the point that ‘it aint Freudian’.
I would also refer people to my post of 7th June and would encourage people to read the book Neurotribes. In the same way that heightened auditory sensitivity has an evolutionary biological advantage, Asperger found exactly the same concepts in the 1940’s – it just was not translated into English until 1979.
Neurodiversity has advantages not only to the individual but to society as a whole.
Enough of this digression, I hear you say. What about the ‘Christmas’ effect.
Before we look at the data, let us consider some important background and words.
I make a very specific distinction between predisposition, prodrome, trigger and seizure. Further I classify, my seizures into two types. Diurnal and nocturnal. Although I use the term nocturnal what I actually mean is those seizures which occur at the transition point between wakefullness and sleep. These words will mean different things to different people. For clarity, this is what I mean when I refer to these particular words throughout my writings.
A predisposition is something which we are all subject to. Conceptually, in the same ways that our genes give us a predisposition to certain conditions, I contend that we are all predisposed to functional seizures by virtue of the fact we all have one thing in common. We have a brain. That is all that is required to experience a functional seizure as it is manifestly a consequence of having a brain.
A prodrome is an early warning signal, sometimes days in advance of a future event. If you will, it is the long term weather forecast. There is rain forecast but we are unable to predict on what day, at what time and upon whose head, any given raindrop will land. For me, the most useful prodromes are a persistent headache lasting for at least a day and recent historical low REM sleep pattern.
A trigger is an environmental experience that precipitates a seizure sequence. Using the analogy of the rain, rain clouds have to ‘rain’ to become lighter to ‘pass over’ mountains. It is going to rain. A seizure is going to happen. In this context the trigger is the mountain. For me, the major trigger for my diurnal seizures is an auditory overload at a very specific frequency although I do not rule out a general frequency interference pattern causing resonance.
I suggest that my seizures are a general non-focal neural network perturbance. For me, they are visible to others in one of two ways. The first being a physical and ultimately violent tremor. The second being an absence. My physical seizures are of two general types ‘diurnal’ and those I experience when I am transitioning from the period of wakefullness to sleep.
Within this short update I have purposefully focused on diurnal physical seizure activity. This leaves the diurnal absence, nocturnal seizures and nocturnal absences outwith of this update as they have different characteristics. Let me explain one at a time for good reason as they are related but with some key differences in terms of predisposition, prodrome, trigger and seizure. I suggest that they are also, being of a different type of seizure event, distinct. They are more related to the interchange of consciousness and subconscious. I suggest that the overall link is delta waves which were once thought to have little import in the REM sleep process. This view is emerging showing a marked change in understanding of the role of delta waves in REM sleep. I refer you to previous updates where I touched upon sleep, consciousness and subconsciousness and the interplay.
I have found that my diurnal seizure activity increases when I am in the state of sensory overload. This is primarily auditory overload. My sensory overload is compounded when I am in a room where there are multiple conversations are taking place and there is general noise. My auditory sensation is open on ‘all channels’. I lose the ability to differentiate and to be able to discriminate (filter) the different conversations and noises. I am in a room. This is a box and the auditory impact is multiplied by virtue of simple echo and rebound. Put me in an open space and the effect of the auditory impact is reduced.
So what is this ‘Christmas’ effect and what has it got to do with diurnal seizures. The answer is plain to see in the chart below.
This chart is my overall seizure activity by day for the month of December. I shall if I may, ask a rhetorical question. What happened on December 25, 26 and 31 which resulted in an increase in seizure activity. Unlike other philosophical questions, such as does a tree make a sound when it falls in a forest with no one to observe or hear, my diurnal physical seizure activity increases when there are people in the room and making sounds.
It is neurological. I refer you to an article written by Professor Jon Stone which is far more amusing than my clumsy writings.
If you remove the ‘Christmas’ effect, my seizure activity has actually reduced month on month. The comparative chart per day is below.
This is my overall seizure activity since April. You can see a full set of data on the Seizure Analysis.
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.
For previous months update select the month from the expanded menu under Monthly Update on the homepage.