Author: David Spencer

My first Christmas with my new friend.

I knew it would be challenging as I would be in sensory overload City.

Started with four physical seizures as the entree. The day then progressed with a mixture of distracted seizures and absences. Then to round the day off a long physical seizure with on going after tremors. A difficult 24 hours for me I just hope I didn’t ruin the day for the rest of the family.

It was just the sensory overload, the number of people talking. Not a lot you can do about it other than try to mitigate the probability. Quiet space and auditory distraction. Tired today.

Musings. Now for one of those Christmas intellectual challenges.

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 he 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.

Well you have to celebrate things. Eight months after my first seizure event.

Some achievements make you happy others make you think.

Today I reached the milestone of having endured 500 seizure events. The ratio is broadly 3 physical to 1 non physical (absence). What I have learnt is that they are demanding. Life changing for both myself and Miranda. At best they are fun and amusing. At worst your world is a different space.

Yes, the condition is rare so I don’t get to meet people of similar experiences but I am hoping to change that in the new year. I am okay, positive with a little p and dealing well with the doubt and uncertainty.

I will not lie though it is hard. So to cheer me up I chose this. A song I adore.

Hans Zimmer & Alan Walker – Time (Official Remix) – YouTube

Now here is a positive event.

I had a quite extensive audiology test today. No pointy sticks. During the test which involved differing frequencies in one ear and ‘white noise’ in the other ear something remarkable happened.

The audiologist of 43 years said never seen that before. I asked him to repeat the test by swopping ears. He was more concerned as to what was unfolding. I said let’s see if we can repeat the event. At the same frequency, the same event occurred.

Now what was the event.

After three. One, two and seizure. Yep. My seizures can be induced at a frequency of 2 kilohertz.

Absolutely fascinating. Makes for an incredibly interesting conversation with ent specialist tomorrow and St George’s on Thursday about seizure types.

I got the audiologist and the grad student who was helping to use the duck quacking technique with me to bring the seizures under rapid control so everyone had a positive learning experience.

Happy chappy.

Pre release stats and science project updates. Quite a complex yet elegantly simple explanation to follow in a few days time. I aim to publish prior to seeing folk at the centre of excellence being St George’s on 9th December.

Since 11 April

486 total seizures – that’s life monthly incremental rate decreasing – positive
231 days since first seizure sequence – that’s life
29 seizures in November lowest total seizure count in month – positive
20 days without a seizure of any type – positive
10 days with a seizure of any type – positive
12:0 ratio of nocturnal physical:absence seizures – positive
6:10 ratio of diurnal physical:absence seizures – positive
4th month in a row of reducing total seizure activity – positive
4 the clear types of seizures I have – positive
2 clearly identified early warning prodrome signals – positive
1 statistically correlated prodrome signal – positive which can be used to predict seizure activity – amazingly positive

1 happy bunny called David. Serious progress made in demonstrating through experiment and observations, those concepts I alluded to in previous months.

Now a few days to put together The Paper I said I would write 😁😁😁😊😊

Update on expirement now that I am back in very cold blighty.

Some fascinating data supporting concepts I outlined a few months ago. One significant piece as it relates to my seizure activity is a reduction in time spent in REM sleep phases leads to increased physical seizure activity.

This is a correlated prodrome.

A prodrome signal being something which happens days before an actual seizure.

The aura are those events which preceed a seizure by seconds.

I am now able to look days in advance to spot the very early warning signs.

Think about it: if it was possible to identify all prodrome activity days in advance, that would be akin to predicting when a volcano is going to erupt.

We can’t do that yet, but we may be able to it with seizures.

A small breakthrough me thinks.

More reasoned arguments with data to follow in coming days.

Very pleased with experiment and to date the overall seizure count is again fewer than last month.

There is something here which is exciting.

A little analogy.

Where I flew to is a product of the ever moving deep plate tectonics and surface volcanoes.

The first of which is a gradual process occurring over eons. They shape the overall land mass of our planet upon which we live.

The second of which are a process which whilst slow, are in comparison more ‘realtime’, measurable in generations of human existence. Volcanoes erupt from time to time. These shape the more local and visible land mass we live on generation to generation.

Each eruption whilst broadly being an ‘eruption’ has differing characteristics and which are given different names to classify them. 

Whilst we understand a good deal about volcanoes we do not know the full details of everything about them. 

One of the key pieces of information we do not know is a fundamental one. When is a volcano about to erupt. 

We do know some of the early warning signals. We use seisemonitors. We may look at smoke emissions, but predicting when an event will occur remains a mystery as well as its type and duration. 

Back to the overall nature of the place I flew to. Its very existence although nonsentient is however influenced by two cooperating and symbiotic processes.

These being firstly its own physical place, presence and structure with its symbiotic partner being the environment it exists within and the forces which it is subject to.

I may have given the analogy a good enough description by now for you to be able to picture the object of the analogy. I shall return to this later.

Update on Novembers experiment so far.

Interesting data which is under further analysis.

Statistically significant spike in seizure activity. 22 in 9 days. And they are time clustered. Statistically significant reduction in REM Sleep phase during the same period. This is absolute time not as a percentage to other sleep phases. Important point. Not sure yet whether this is a prodrome sign for oncoming physical seizure activity or is as a consequence. I now have two good data series showing this correlation. July and two weeks in November. Further detailed analysis underway.

I joked a few months ago about understanding the characteristics of my absence seizures by the time I hit the total seizure count of 800. If the current spike continues I will be at 494 by end of November.🤔🤔. As ever that fickle creature reveals itself slowly and every month I learn so much more and this revelation is about my physical seizures.

Whilst it has not been an ideal 9 days to date whilst on holiday, as the saying goes, no pain no gain. The data is encouraging.

Another encouraging start to the month and another month of experiment.

With all experiments you need to test the environment to see what happens when you change the environment but not the subject.

The first fourteen days in autumnal Great Britain. We fly early on Sunday. The next fourteen in the temperate climate of the Canaries. The last experiment of a similar type in Cyprus, revealed some interesting data and a ‘reversal’ in my type of seizures. More absence than physical.

Let us see how the next fourteen days changes the current picture and what that fickle creature of nature has in store. For my part, I will continue to make those small and repetitive steps on this journey.

What is remarkable is the inexorable reduction of total seizure activity but let us not count the chickens before they have hatched or not philosophically. Interestingly, the data for the month of November has been skewed after a day of pointy stick activity. See previous posts. If you take that one day out of the picture, my overall seizure activity is an amazing total of four.

I have nothing against ENT consultants. They have never harmed me. I have though in my life always tried to avoid people putting pointy sticks (or variations on a theme) into any of my orifices. Just call me old fashioned, but it seems to me that pointy sticks of any shape or name and medicine just don’t sit right somehow.

Sometimes though you have to go with the flow and allow otoscopes. What did they find. I still have reduced hearing and pain and it would seem the next step is to have a chat with a surgeon about resolving my repetitive ear infections and bursting ear drums. It could just be a simple case of what happens to many including my own children which is/was the insertion of grommets. I have discussed this at length (2.5 seconds – just take the pain away and see if my hearing will improve) and have agreed in principle as long as I do not have the magic cream on the back of my hand – I want proper sedation, plus I do want a post op teddy as my children received, as a reward. You have to be fair and consistent. 😁😁 Nothing in the diary yet, but likely.

Why do I avoid pointy sticks. Well after otoscopes of various sizes, left and right by multiple medics I was a little sore. Then came the payback. A very long sequence of five physical seizures. Thank fully by the time that happened, I was at home and able to be in a safe place.

Bit of a dampener on my stats, but adds another anecdotal story as to the relationship between my ears and my seizures.

Reply from my brilliant daughter Emma.

You have to have the magic cream in order to get the teddy. Sorry – fair is fair. ☺️