July 31, 21. 100 days on.
Good afternoon all.
I have decided to provide updates at the end of each month so this reporting period may be a little condensed as I transition across to this.
C’etait un mois chaud et collant or more colloquially, hot weather equals more seizure activity. There is anecdotal evidence of this, and as everyone knows, we all become less tolerant in environments where we are physically uncomfortable due to climatic influence.
It is now one hundred and eleven days since my first seizure event. For those cricket fans amongst you, this is that dangerous Nelson number, where umpires and players alike, tend to anticipate an event such as a wicket. It is for some strange reason a superstitious number.
Now, not believing in superstition, and to avoid any mysterious events, I have allowed a black cat to walk in front of me and I have thrown some spilt salt over my left shoulder. I suddenly discover it is now one hundred days since I started to keep records about my seizures.
I can still vividly remember the very first seizure which was most odd. I was lying in bed. I started to shake and then ‘seized’. The first sequence was five in a row.
Immediately afterwards, I asked my wife to look at my face – had I had a stroke ?
Read on for my progress, me thinks you may be a little surprised.
Since, then I have learnt much and continue to do so with every day that passes. One hundred days in, I now find myself more reflective, and able to look back at events, with some good data and to become more objective as to my progress.
Every day is progressive. It started on day one, with me being brutally honest to myself. Acceptance is key. I will learn to manage my seizures.
I was told that there is no “cure”, “no medication” that can help. I told myself you will learn to control it, rather than it control you. I have said before, the only medication I take is the strongest known to mankind. Science and rationality.
On this simple measure, I have made promising progress and continue to become better at this activity with every day that passes.
Ca marche.
For those of you who know me, you will know that I am an avid reader. One author who struck a chord with me when I was growing up many decades ago was Aleksandr Solzhenitsyn. A mathematician, writer and philosopher. He endured much during his life and wrote extensively. I have used one of his short poems previously as is captures much of the human spirit. You can read this below.
During this one hundred day period, I have had 321 seizures.
Within this period, I have had thirty one days where I did not have a seizure. There or there abouts. As I write, my last seizure was on 28 July. Now where is that salt.
My seizures have been a mixture of what I describe as being one of two types.
Type 1. These are physical seizures where my whole body has a good old violent seizure. These have all started on the left hand side of my body. They are tiring and the cumulative effect over a period of a day or days is exhausting.
Type 2. These are absence seizures. Within this category of type 2, there are two sub-types. The slow burners and the rapid onset ones. For all type 2 seizures, I am there up until the moment of the actual seizure and then I disappear. Becoming as described ‘absent’.
In the first two months, I was having absence seizures which I was unaware of, I just did not recognize them, and hence did not record them.
Type 2 are the worst for me. They can leave me shattered for hours afterwards and they are generally followed by a type 1 sequence of seizures. They really do ‘steal time’ from you.
In May and June, I concentrated on recording data and becoming more aware of the characteristics of my seizures before, during (where possible) and after. This was a conscious decision on my part, to allow myself to become familiar with all of the traits and foibles of my seizures. I had to allow the seizures to happen to enable me to learn from them.
This is a key element of the process. My thought process was to understand the overall ‘context’ of the seizure so that I might be able to learn more about what precedes. I was trying crudely to identify patterns.
After all, that it what we humans are good at. To see the pattern learn from it, then unlearn and develop new patterns. A loose reference to neuroplasticity which I have discussed previously and which I genuinely humbly suggest is the treatment plan for
NEAD.
Even though I accepted on day one that my world had changed and all that that would mean, it has taken me the best part of three months to get to this place. This would seem to be the length of time you need to begin to understand the different
seizures you experience. The different aura’s, their different onset times, their different outcomes and of course some of the big triggers.
To start to develop your own simple practical interventions. To start the process of learning what to unlearn and to then to start to use the innate power of neuroplasticity in any meaningful way.
This process cannot be rushed. You have to go through the anguish to truly understand ‘it’ so that you have a clearer understanding of what is happening in terms of your personal experience.
Whilst I am never in pain when having a seizure, the analogy here is that ‘you have to go through the pain barrier’ to know, to ‘get it’ and to learn how to deal with it.
It is a trial and error process as you learn more. I make no general statement as everyone will have their own method and everyone’s experiences will be uniquely different.
Whilst the word snowflake has been hijacked in modern language terms, if I use the word more correctly in this analogy, everyone is a snowflake.
When we look at snow falling at a distance, it all looks similar and homogenous. When we look more closely, we are all unique. This uniqueness should not be underestimated as it is a strength.
Everyone’s experience of their NEAD will be unique to them and everyone will develop their own coping strategies and techniques allowing them to manage their own life experiences.
What works for you, works for you and long may it continue.
In July, I have been using my own data about myself as a tool to manage my seizures. I am now targeting specific aura’s which lead to physical seizures with very specific and repetitive techniques to ‘change’ the outcome.
This is because I have been recording data to the nth degree and I now have a solid baseline of objective data against which I can reasonably assess future changes I make.
More granularity, allowing me to become more targeted in the way I manage my seizures. I have an analysis by day and by hour. I have been able to identify cluster times within days. I am starting to be able manage the variability allowing me to have some degree of confidence as to the times through probability when I am likely to have a seizure.
I have identified some of the triggers but certainly not all of them. The major
ones, the minor ones, the odd ones. I have a list of strange things that happen before and after. For example, I know when I am entering a type 2 slow burner onset period. I use more ‘tasty language’. This is the benefit of recording data. You can use it to your advantage.
Learn to unlearn and learn new pathways.
To set the scene here is some data showing the distribution of my seizures over recent months. This is by month and by type. I have excluded from the data below seizures during the time I spent in hospital as these are not representative of ‘real life’ and are statistically abnormal events. The data below is me, going about doing what you would do normally, which is living. I would caution statistics gathered in a hospital environment as they do not compare as they are an artificial environment.
What am I trying to do.
The blue represents physical seizures. The red represents absence seizures. I am focusing on converting physical seizures into more beneficial events. You will see orange and green.
These are ‘converted’ physical seizures. Yes, I have had more seizures in July.
Paradoxically I am content as orange and green are not blue. They are a piece of music, a quick duck quack and not the need to seek a safe place, to lie down and have a whole body physical seizure.
As Buzz Lightyear once said, rescuing Andy, ‘This is falling with style’ after Andy had previously mocked Buzz for not being able to fly. The film explains it better than I do, I can assure you.
What does that mean.
It means that I allow an involuntary physical seizure to develop up until a point. Yes, you did read that correctly. I allow. I then use either specific audio techniques or duck quacking techniques to ‘translate’ or ‘convert’ the involuntary action into a ‘voluntary action’.
Click here for more information about duck quacking.
I am gradually reducing the time allowed for the seizure to develop. For example, I started by allowing the seizure up to ten seconds or to the point of my left arm becoming very shaky indeed before intervening. You have to allow this time so that
you can focus on the seizure itself and allow the process in your brain to start.
Now, I am reducing the time I allow the seizure to develop, thereby teaching the brain how to ‘unlearn’. To gradually draw in the process which leads to a seizure, gradually and inexorably.
Imagine a piece of string.
That piece of string is the physical seizure. What you are trying to do is to reduce the
length of the piece of string gradually, but you need to do this carefully and repetitively, so as to make sure that the piece of string is becoming progressively shorter and shorter, so that eventually it has no length.
Crucially this conversion reduces what was an aura, a physical seizure (or seizures) and a bad headache into an aura, an exercise and then a bad headache. It cuts out the middleman of the seizure. I actually do not have a physical seizure.
What I and others, have observed is that I can move the seizure voluntarily from my left arm to my right arm and now, here is this month’s news.
The seizure now automatically moves to my right arm after a short period of time with no intervention on the left hand side of my body other than me just focusing and saying ‘OK – move’. I hesitate to say ‘at will’. I need another month of data to reflect, practice and collect data.
At the same time the seizure on the left hand side of my body, specifically my left arm is reducing in severity. I am still not be able to hold a cup or form a tripod grip at onset, but is noticeably reducing in severity.
After moving, the seizure in my right arm still needs to be ‘unlearnt’ but once I have ‘unlearnt’ this, my next question will be to myself, ‘Where are you going to manifest yourself now’. I can then address this.
You will see a reduction in the number and size of blue. That is the objective. I am moving these events from ‘involuntary’ actions to become directly under my ‘voluntary control’. This is the first step. Then as time progresses the thought process is that I will be able to be more able to ‘switch off’ the physical voluntary action I take, as it becomes something which I can say to myself. ‘No, you are not playing today’. It is a conscious decision. A conscious non-physical voluntary action. I choose to allow or disallow it to happen.
But what about the absence seizures.
Well one month at a time, I am focusing on one ‘aura’ and ‘seizure’ type. Once I have that under my control I will develop other techniques and strategies for this. I do have thoughts upon how I am going to do this, and that is as they say, for another
day.
Likewise with the headaches. I am concentrating on addressing one aspect at time so that I might get better at that and then having achieved that milestone, then moving to the next. The analogy being you have to learn to walk, then walk quicker before you can run.
As an aside I have been wearing a 24 hour ECG machine this month so that will be passed back to the hospital in the next few days for their analysis to see if there is anything of note to report upon.
I already collect my own data via an MiFit 6 which takes my vital statistics, so I can confirm that I am still breathing and have a heart beat albeit with a resting state of around 55 and as low as 41.
I will publish some more data over the next day or so as I find time. I am also a good way into my second journal so there is lots of information to refine.
Thank you for reading about my experiences