30 September 2021. 172 days since the first seizure.
Good afternoon.
Let me start with the big news of the month and then allow me some time to explain further about my seizure activity. The important news is that Miranda and I celebrated our Pearl wedding anniversary by being in a place we both love and where we feel very comfortable. Cyprus. We had a truly special two weeks with just the two of us together and plenty of quality time for us to just enjoy each other’s company.
The holiday had been booked before I started to have seizures in April, and the period we were away allowed for me to continue to make good progress in managing my seizure activity in a relaxing environment. I will come back to that phrase ‘relaxing environment’.
So, what happened in September.
It was to become a month of two halves. One in the UK in a ‘normal environment’ and one in Cyprus in ‘relaxing environment’. My two ‘laboratory’ environments for comparison and contrast. If you wish, one without triggers and one with triggers which would normally lead to a physical seizure.
If you recall, I had planned for September to be the start of the process for me to more fully understand my absence seizures. My ‘bete-noir’. The reason for this is that I am content with the way that I am managing my physical seizures. I have been able to reduce their impact. I have learnt mitigation and distraction techniques. I have learnt how to move this type of seizure, both physically and chronologically in terms of times in which I allow these to ‘happen’.
Not so the absence seizures. These are the worst of the two types I have.
The objective was to place myself in a ‘relaxed environment’ as much as possible to reduce, if not remove, all of the triggers which I have experienced leading to a physical seizure. These being broadly categorised as sensory overload. What I was trying to achieve was to remove the physical seizures from the equation leaving just absence seizures to understand. This was so that I might understand what was going on around me that led to my absence seizures.
As with all mortal plans, I had to wait for that fickle creature called nature to reveal to me what it thought of my rational thought process. And nature did.
For the full seizure analysis data click this link
(For those eagle eyed, you will see a sinusoidal pattern forming in the graphic distribution by hour. Not dissimilar to Circadian rhythm charts et al.)
To begin let us first look at the overall seizure activity in two segments. The first being when I was away, in the ‘relaxing environment’. The second when I was back in the UK, in the ‘normal environment’. What is the data trying to reveal to us.
Straight away you will see that there is a marked difference. Whilst away in the ‘relaxing environment’ I had more absence seizures than physical seizures. This absolute number and ratio was then reversed when I was back in the UK in my ‘normal environment’.
This is very interesting indeed. Yes, I accept that sometimes we can ‘convince’ ourselves that because something is going to happen, then it will happen. The analogy being you state a self-fulfilling prophecy. This though is not the case here.
At first glance you might summise that a reason for this marked reversal in the two different environments, and I ask that you note the word environments, one without triggers and one with triggers is pretty obvious. You are on holiday and relaxing so what would you expect.
However, that would be true, if not for the following. Let us look further into the data to see the distribution of seizures by hour of the day.
We are now starting to see something very interesting indeed.
The time when I have physical seizures in the two different environments.
Whether or not I am in a ‘trigger free’ or ‘trigger rich’ environment had no impact on when the clustering of physical seizures occurred. Yes, during the day I did have physical seizures. These I was able to distract in between the period of aura onset and actual seizure. Although some say, that as soon as the aura is detected you are in fact having a seizure.
This suggests that in fact, my physical seizures are of two types.
The first type being ‘triggered’ by events such as sensory overload. These happen during the day and are distractable. The second type being physical seizures occurring at the junction, the interplay at the time of switch over from wakefullness to sleep. This second grouping are nocturnally driven or at least driven by a mechanism similar to a super circadian clock to which I have referred to in the past.
In attempting to understand my absence seizures in a controlled environment, I have stumbled onto the fact that I am having two very different types of physical seizure. The former I have learnt to understand. The latter is truly fascinating as it leads us further down a direction of a more fundamental question.
Let us consider that neural networks ‘learn’ and ‘remember’. I have previously commented on the ‘imprinting’ which goes on within the neural network to make a specific response a ‘learnt’ or ‘default’ response or action the brain takes given a set of sensory stimuli.
Now, could it be the case, that one of these innate processess, the need for sleep, and in particular REM Sleep, if disordered, could lead the brain to be confused, conflicted as to whether or not the conscious or sub-conscious should have primacy. For conscious and sub conscious we could replace these with simple synapse and super synapse activity. We call this a REM Sleep disorder. This is well documented and can be confirmed through sleep studies. Of course, my question was a rhetorical one and for good purpose.
What if now we consider that these nocturnal physical seizures are where the brain has received a set of sensory stimuli, or not as the case may be, and has taken those sensory stimuli, or not as the case may be, as being the prerequisites for the brain to enter the super synaptic mode of REM Sleep. The switch over from conscious to sub-conscious. Yet, the in parallel, sensory stimuli to ‘switch off’ the conscious, the active part of the brain have not been brought into play. A disconnect or disruption in the neural network which puts the brain both into super synaptic mode (of sub conscious) without the motor paralysis which should accompany REM Sleep.
All of my physical seizures have remained at the transition point between wakefulness and sleep. I would refer you back to last months update about the timing, the ‘handover’ between the conscious and the sub-conscious and there being an overarching ‘circadian’ like clock in play here.
A veritable Venn diagram where the seizure activity is the co-joined element.
There is then the question as to why the increase in absence seizures between the two environments. When you look at the data there is no clustering or change in distribution. They occur during waking hours as opposed to physical seizures with type one happening during wakefulness. Physical seizures type two seem to be more prevalent at the changeover time from wakefulness to sleep.
The data suggests that the hypothesis outlined in August may have some merit. More data is required though to add statistical weight to this. I continue to develop this hypothesis.
This again brings me back to the two states of conscious and sub-conscious being in a ‘disrupted’ state. One trying to take control, but unable to do so and where both states exist at the same time.
So, in trying to understand my absence seizures, nature has taught me how to differentiate between the two types of physical seizures I experience. More homework set by the literal master of the universe, or a least the master of the earth.
What about those absence seizures.
At the same time as the above, I have now learnt to recognise some of the characteristics of the aura which precedes and absence seizure. What I have found though, is that even though I can recognise them, the very fact that I can recognise them means that I am already absent and therefore I have entered the state beyond which as yet I have been able to interrupt.
This remains work in progress. The absence seizures are really difficult to interrupt. To date I have not been able to figure out a way of distracting these. Hope springs eternal and I will continue in my attempts.
Now to overall seizure activity. How am I doing on that front.
My progress remains characterised as steady progress. The reality is that ‘learning’ to ‘unlearn’ and ‘learn’ new pathways is a slow process and you need treat each day differently and with respect. Every day you need to reinforce the new pathways you are creating. My seizures whether absence or physical type one or two are part of me. They are my now ‘new normal’ and you just have to live your life without them taking control. I was never going to allow that to happen.
Some days are better than others and I remain positive about my progress. From where I was in April, I am content. I can do most things in my life (except driving) granted with modification. I have lost elements of my independence however, I have learnt to control most of my physical seizures during the day.
I treat my seizures with a great deal of humour and I continue to be able to work productively with the ongoing support of my colleagues. For this I am grateful to them.
The month of September allowed me to hit another positive milestone. I have now reduced the number of seizures I have had in one month to below 50. This gives me every encouragement for the future.
Once again, I must thank all those around me, Miranda and my children in particular for the support they have given to me. Whilst I may be having the seizures, I know that it is not easy on those who care for you.
There is one final picture I would like to share. This was sent to me and sums up how I am approaching my progress.
Thank you for reading about my experiences which I find fascinating and which I remain positive about.
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.