August

August 31, 21. 142 days since the first seizure.

Good afternoon.

For those of you following this little journey, let me recap on what I was planning to do in August. I will then try to explain how mother nature, that most fickle of creatures, has decided to respond to my mere mortal plan.

Before I begin, I must as ever explain that what I experience is unique to myself. I make no bold or presumtious claims as to the generality of my experiences as they relate to others. Everyone’s experience of functional seizures will be unique to them. Vive la difference.

I must add that I consider myself to be very fortunate, in so far as I recieved a diagnosis within days of my first seizure. In addition, I only experience ‘pure play’ functional seizures. These being absence and physical seizures of variable length.

Others may have more debilitating experiences along with associated co-morbid diagnoses. I take my hat off to those whose seizures are more severe than mine and which restrict the way that they live their lives. You are remarkable. It is only once you have experienced a seizure that you can start to comprehend their insidious nature.

I have always said that we are nothing more than a bunch of proteins, but boy (or girl to be politically correct), when those proteins come together, or not as the case maybe be, they indeed are a force to be reckoned with. Simple shapes these proteins, every one of which can be unique. A masterful Darwinian end product of what efficiently and effectively adapts the best to its changing surroundings and circumstances.

To set the scene, it has taken many years for people to be able to grasp the innate paradox of photons behaving both as waves and particles. Now we have to address a similar conceptual paradox. Is a sensation, a perception, a reality, a wave or a particle in its characteristics. It is always good to start the day with a meaty question.

This is the challenge the collective medical community must now embrace as it frames an experience of both mind and body into a paradox akin to that which science undertook one hundred years ago when starting to think about the very strangeness of the fundamental mechanisms.

Not an easy task. There are those who are walking down this path. They should be encouraged to do so, as we start to comprehend more about the whole system which is the combination of all aspects of human sensory experience.

So to progress.

August was all about reducing the number of physical seizures. This was to be achieved by getting better at recognising the triggers and the different aura. Then by using a range of distracting techniques such as sensory grounding, audio and duck quacking to reduce the incidence. Building upon the success of last month with even more neuroplasticity exercises. The thought process was well if we can start to reduce the physical seizures (represented in blue), this will then leave the more difficult ones to address at a later date. The more difficult ones being the absence seizures. At the same time leaving the headaches to another day and another month as well.

Well how did I do.

Let me start with the headaches even though this was the last item in the to do list. After a discussion with my neurologist, I decided to go with the flow with a suggestion as to how to reduce the headaches I was eperiencing which may be acting as a trigger for some of my seizures.

I have been taking some pain relief previously and prior to my onset of seizures. Co-codamol. I primarily took this for pre-existing back pain. With old age comes old joints. In my case not old age, well there is that aspect to it as I am no spring chicken, rather too much youthful sport, where I placed to much stress on my lower back through rotational sport. 

It was considered that co-codamol may be exacerbating my headaches. The literature supports this view. 

I agreed to give Amitriptyline a trial at its lowest dose, to see if I could take the edge off the headaches. I mentioned to my neurologist that there was a view within me which was just ‘to ride out the storm’, (of the headache) but he wanted to allow me, to allow him, to aggressively treat the headaches. I therefore took 10mg a day for the first 28 days in August to see what the effect was.

As you may be aware, Amitryptiline affects the amount of the neurotransmitter serotonin at the synaptic level. It is a crude, ie non-specific medication, which has been shown to be useful for headaches and migraines. It takes many weeks for you to get the real benefit. At more significant dosages, it is used as an anti depressant which is its primary purpose. The reason I say crude, is that serotonin is present throughout the brain at the synaptic level so taking it affects the whole brain, not just a specific part. There is no research as to to its efficacy on super synapse function. Emerging research on super synapses has been conducted with more potent drugs and these have shown an observational increase in hemispheric communication and accentuated sub conscious processing.

I am very aware of the role of serotonin and dopamine through my work on chemical imbalances at the synaptic level in ADHD and Aspergers. It was therefore a considered decision on my part, to stay at the very low level of dosage.

In August my persistent headaches reduced in number and duration. The other observations were that my sleep became a lot more disturbed at night and I had an increase in or an exacerbation to my REM behavior disorder.

Any chemical you ingest, whether it be chocolate, coffee or something more colourful, has side effects. That’s just a fact.

Now to the seizure activity.

The following chart shows the types of my seizures by month from April, excluding the early days I spent in hospital.

So, if the mere mortal plan was working, there should be a reduction in the number of blue events as time moves to the right, showing the progress by months. Well now, what does the data show us.

The blues are increasing. Now that is odd. How can something increase when you are taking a positive and conscious action to mitigate their onset and reduce the incidence. Surely there must be more to this high level breakdown than meets the eye on first analysis.

Let us now drill down a little further into the data.

Maybe this will reveal a sublime sub-context. How about if we breakdown the data into the days of the week. Perhaps now this will reveal to us a further insight as to what is happening.

Well now, we start to see some clustering on different days. I wonder what could be acting as triggers on Tuesday, Thursdays and Saturdays which results in a higher number of physical seizures. 

But what is this I spy. Is that a correlation between blue and red on Tuesday and Saturday. Another dimension to this rubriks cube of colour possibilities. Where there are blue and red, this would suggest absences seizures occurring first, and then at a later time, a physical seizure which seems to be the cycle. This has been my general experience.

Now add to this, I work between three and six hours a day, Monday through Friday. I have very considerate work colleagues, who allow me to work in a relatively quiet environment. I can also do a large part of my role from home. For this I am very grateful. There are some who can no longer work and this can only add to their sense of isolation, which does affect mood and thus the way they are able to manage their seizures. For me, the flexibility and balance provided to me by my colleagues, has had in my humble opinion, a direct impact and has significantly helped in reducing my seizure activity. For this, I cannot thank my colleagues enough. This is noteworthy.

This supports the view, which I and others have, which is that physical seizure activity can be managed in a work environment provided appropriate and practical adjustments are made. Openness is one of the key elements here.

Saturday and Sunday are more social days where I sometimes spend time with many members of my family. Sometimes in excess of ten and this represents a very high trigger activity. Sensory overload. Multiple conversations and with my brain being open on all channels, resulting in a very high degree of probability of sensory overload.

But there is another dimension. Days of the calendar, and here you can see what is becoming a more interesting picture. This shows the days where I did not have a seizure either absence or physical. There are many gaps.

We conclude the seizures are no longer occurring daily.

But there is one more dimension which this small dataset has to show us.

Seizure by hour within day.

And it is here, that the data truly reveals itself.

Most physical seizures have now migrated to that period of time where you would normally expect to be transitioning or starting the process of transitioning from wakefulness to sleep. Or more fundamentally, where the conscious brain is handing over the keys to the nightwatchmen, the subconscious brain. There is a much lower number of physical seizures throughout the day with fewer physical seizures which I allow to develop. These are the ones under my control and the absence seizures again are interspersed. They do not cluster in terms of an absence and then a physical seizure.

There is something very interesting going on here. It is early days but the data strongly suggests that my daytime physical seizures are a manifestation of the timing where the conscious and sub-conscious are ‘in conflict’ as to which one has ‘overall’ control of the whole brain. Typically only one can have the primacy of ‘overall’. It further suggests that if you use the analogy that consciousness is driven by single synapse activity and subconsciousness is driven by super-synapse activity, it is evident that again the timing is out.

Super synapses are coming out to play during the day. It is suggested that their process is to internally assimilate the mass of sensory information which the whole brain has received, since they were last in a period of downtime. As an adjunct, one example of this process of assimilation can be classified as REM sleep and is typically characterised by paralysis. 

An example of the daytime super synapse activity would be the purposeful and functional loss of connection between our extended nerves in our hands and legs. They themselves, once out of connection are not driven by a command and control system from the conscious brain, they rather act independently constantly sending signals back to the command and control centre which is switched off, it is in assimilation mode, hence as no message is received back, they become more excited and hence why my physical seizure occurs. That is to the say, the physical seizure is not caused by the conscious or sub conscious brain per se, but rather by the loss of connection between the long nerves and the brain.

The tail is wagging the dog.

This is a very brief introduction and clumsy explanation of a construct I have been developing in recent months. A more elegant document is in draft form.

The basic premise is that my physical seizure activity is primarily caused due to a timing issue, if you like a super circadian clock, which the left and right hemisphere are subject to and which synapse and super synapse synchronisation is also subject to, which leads to the two states of consciousness and sub consciousness.

Back to those proteins, photons, waves and particles characteristics. A veritable ‘strangeness’. A mechanism by which we may be able to rationalise elements by building upon the single dimension of neural networks, adding the dimensions of time, distance density of nerve connections, applying probability analysis and to add spice to the mix, incorporating quantum mechanics.

For those of you who know me, I of course add governing dynamics. In the context of cellular activity, this holds true as well.

But enough for this month. Enough to keep my grey matter ticking over for a while, if not a lifetime.

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.