31st January 2022. 295 days after the first seizure event
Good afternoon.
Let me begin with some numbers.
538 total seizures over 295 days.
But what is the trend.
Well below, you will see that broadly speaking, I have a consistent run rate of seizures. The line is reasonably straight. Humans like consistency. The run rate ‘seems’ to be gradually reducing. In January I had 26 seizures. This compares to December, where I had 35. I have dipped below the 30 a month. I should be pleased and I am. I must be doing something right. I can assure you though, that this is not how you feel when you are having a seizure !!
You can see the full data on the Seizure Analysis
page.
January was an another interesting month. Nature that most fickle of creatures, decided that it was time to reveal more. The way that is written, suggests that nature is a sentient being as ‘it’ decided’. Not so, just an example of clumsy language and rather suggests how little we actually know about nature. As someone more astute than I once said, ‘… the more we learn, the less we know’.
Enough of this idle digression. What was the interesting event.
Drop seizures are my new experience.
I think the technical term is a non-focal generalised atonic seizure. A mouthful. What happens. Well, as the drop in drop suggests. You drop. For me, that means I lose consciousness and hit the floor before I know it. The seizure itself is not harmful nor painful. The lights just go out very quickly.
It is more the consequence.
What do you hit on the way down and land upon ? Bit of a challenge really. Unlike my other seizures, I get no warning. It may be over time, I learn the aura, but for this type of seizure event, I am not going to purposefully allow it to happen so that I can study it. To date, I have had a clear drop zone and have landed on soft surfaces.
Moving swiftly on, I have also noticed that my general recovery time from seizures is becoming longer. Coupled with this is an increase in my variability. The most noticeable one being my ability to use language. I am told that it is quite common for language processing to become confused and dysfunctional. I suppose that this is to be expected, as these events which cause interruptions in the neural network, would have a significant impact on the ‘higher cognitive functions’ of the brain. Language, our ability to communicate being one of these. I struggle to find words and verbalise at times. I also ‘select’ the wrong word or words, when describing or in general discussion. Could be interesting going forward.
January has been a tiring month. My overall seizure activity continues to cause me significant difficulties. They are not increasing in numbers per se, but the pervasiveness and the impact they have upon myself and those close to me, is.
I continue to learn as much as I can and I am revisiting some of my library in particular the works of Roger Penrose. As with many others, my own view on the way that neural networks work, cannot be framed within the existing body of understanding. It is beyond quantum theory, although this must play a part. I am also of the view that like quantum mechanics, neural networks are beyond our comprehension at this time. I read an amusing article this month, which, and I paraphrase, summarised itself by saying ‘those who say they know exactly how the brain works, are either charlatans or fools, and probably both’.
Whilst I do like to research and think about things, the reality is that I am more interested in the practical side. You have to go about living and doing ‘normal’ stuff, so for me it is about learning to manage and live with the insidious little bastard.
Having said that I also read an article published in the BMJ this month. I enjoyed it for two reasons. The first being that there is a nice picture showing some of the interplays within the neural network. I suspect that has been put together using fMRI scans. The second being a good overview on the incidence and prevalence of FND. It is worth a read and can be found here.
My own take is that in the same way that linear constructs do not represent life, a construct of the way that the brain uses an agency model to predict, and is the basic premise of the predictive brain processing theory, is incomplete. There is something beyond prediction which is probability. In the same way that the general principles of ‘prediction’ fall when considering the quantum world, a model which suggests that the brain is ‘predicting’, falls for the same reasons. It may be a ‘learning’ collection of proteins (the brain), but it is not fixed or deterministic in its outcome. It is based upon probability. This is completely different to ‘prediction’. It may look like similar due to the number of probabilities which are possible giving the impression of ‘prediction’.
Simple exercise. Roll two dice. What is the probability or possibility of any given combination. Over an infinite amount of time what is the distribution of outcome. Some confuse this with prediction. Now, consider quantum theory upon the same exercise. You are not predicting, you are observing a past event as that is all you are able to do.
Now to get you really thinking, replace the two dice with let us say 100 billion neurons each with an indeterminate number of inter connections. Oh, and there are also back connections. Did I mention, the related non electrical messaging protocols. Silly me. Then you have to add the dimension of time, as every single point of connection is working both independently in time (they are conceptually and physically within their own dimension of time/space) and, they are working within the concept of spooky entanglement where their state can change without reference to time. What about the distance, oops, there I go again, forgot to mention that one, the real measure between events as time is a human construct. It starts to become interesting.
The above also excludes our understanding that with every cell division, we evolve. That is to say, whilst there is a macro process of evolution in play, there is also a micro evolutionary process. This happens to us, in real time as we journey through our life. Every cell replication will introduce changes. Mutations. Then there is the view that we can actually imprint learned memories upon our DNA. It becomes boggling.
Some would say that we have a better understanding of what happened 13.7 billion years ago, when compared to our understanding of the brain, and even then there is no consensus. By the way, we actually don’t know what happened 13.7 billion years ago. Hopefully, the James Webb telescope may give us a better reference point.
Well, as they say, it is best to keep the mind occupied as ‘use it or lose it’.
The picture I refer to above is this.
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.