Some thoughts on epilepsy, by JD

Image from article 'The visions of artists with epilepsy: Implications for neuroscientists'

In 2011 I was diagnosed with epilepsy. An earlier version of this post originally appeared at Nourishing Obscurity in 2014; (I think) that original post has been lost in NO's technical problems.

I have decided that it should be posted again because my 'journey' has reached the happy conclusion of me being now free of epileptic seizures.

Part one below is my archived copy of that blog exactly as it appeared originally so references to specific dates or times are to be read as being 'as if' eight years ago.

Part two is an account of how I came to be cured and should be read as a separate chapter.

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Part 1: the diagnosis

Woke up this morning on the kitchen floor, which was odd because I had already woken up half an hour earlier in bed and come downstairs for breakfast.

Doc said I had a sudden fall in blood pressure which prompted my own sudden fall. He also said: ‘Sorry I can’t do anything for your cupboard door.’

Fortunately my head is harder than that door. I’ll see him next week for another check. Meanwhile he changed my BP tablets.

At first the GP thought it might be related to my blood pressure and subsequently I saw a cardiologist at one of the local hospitals.

After a brain scan, an EEG (twice), an ECG and an Echocardiogram and after much consultation it seems that I have some form of epilepsy.

Now I am trying to understand what is happening and how best to deal with it so what follows are a few of my thoughts on this malaise and an attempt to describe what it feels like during what the doctor calls an episode. Over the past year I have read a lot of material on neuroscience and related subjects so I almost know what I am talking about.

Currently I am under the care (if that is the right word) of a consultant neurologist and fortunately for me she turns out to be one of the leading specialists in epilepsy. That doesn't stop me 'discussing' my condition with her. "You don't normally do what you are told" she said last week but I do, I do...eventually.

The difference is that I am looking at this from the inside, as it were, and unless she has experienced a similar 'episode' then she must rely entirely on testimony from her patients to which she then applies her considerable experience and knowledge.

Following the first falling down, there have been other episodes over the past eighteen months or so.
There is no regular pattern to them and they do not always result in the classic seizure prompting loss of consciousness. The doctor explained that they tend to come in clusters and that seems to be what is happening.

One of the indications prior to a seizure is a moment of 'hyper-reality' which is how I would describe it rather than 'déjà vu' which is the usual expression but, to me, that is something entirely different. It is more like a clarity of perception or as Wordsworth wrote-

There was a time when meadow, grove, and stream,

The earth, and every common sight,

To me did seem.

Apparelled in celestial light,

The glory and the freshness of a dream.

Awaking from the subsequent loss of consciousness there might be a brief period of confusion but not always. Sometimes this can be minimal and at other times it can be profound. Normally it would be a case of 'where am I?' and on one occasion it was 'who am I?' and where others might have had a fear of loss of identity it just aroused in me a bemused curiosity.

A typical episode would include a bout of 'intensive' thinking followed by a surge of energy through the body and breaking out into a sweat and then it subsides.

There is no regular pattern in all this; symptoms can occur singly or in combination and I have come to believe that it is triggered in some way by my thinking. I can be aware of the 'overcharged' intense thinking whilst following my thought process but at the same time I am also aware of observing this state as if I had two centres of consciousness.

Two examples:

1) Watching the BBC4 programme about Electricity I had quite a big surge/shiver of energy and sweating while I was following the narrative.

It occurred to me that my feelings were not unlike what happens when a cable/wire/circuit is overloaded; so maybe, as an analogy, my neural networks are being overloaded in some way, generating heat and the surge feeling is a resonance throughout my system?

It happened again at the end of the programme while Jim Al Khalili was demonstrating how a Faraday Suit will allow high voltages to pass over the body and that mirrored what was happening within my body.

2) I was thinking about ringing my cousin to ask about her mother, my father's sister, who had similar symptoms in the years before she died. And just thinking of what I might ask her, the 'energy surge and sweating' started and I was able to curtail it by thinking of something else and waiting until it subsided.

At other times I have been thinking about and trying to understand these episodes and this appears to induce one. I have noted this to the doctor and asked her if it were possible to induce a seizure just by thinking about it but, so far, she reserves judgment on that idea.

And then, for the first time, I fell down outside.

This was in November last as I was on my way to buy the morning papers. Fortunately my neighbour saw what happened and picked me up. One minute I was walking along and then the next thing I remember was regaining consciousness and seeing a slightly out of focus face and feeling his hands supporting me by the shoulders. I have no recollection of falling nor of getting up again. I am told that we had a coherent conversation while I was lying on the ground and how that can be explained is a mystery. How can I be unconscious (as in unaware of my surroundings) and yet conscious (as in being able to have a conversation but without the automatic process of memory formation of that conversation) at the same time?

Then last month I fell down outside the house again but prior to falling I had that 'clarity of perception' mentioned above.

As before, I can't remember falling down or getting up again and there were no witnesses this time. I find it interesting that I got to my feet again without being consciously aware of the action of standing up or of replacing my cap and my glasses. My 'inner zombie' was in control; on autopilot.

There was a moment of slight confusion afterwards so I went back into the house to staunch the wound on my forehead and to change my glasses, having broken the ones I was wearing.

Then I went to see the local GP and she put two stitches in my left eyebrow. (Why am I blessed with such nice lady doctors?)

Some further thoughts on the feeling of 'déjà vu' or 'hyper-reality' are expressed in these words and they are a reasonably accurate description of what I have experienced-

Everything.....is Brilliantly illuminated and seems to shine from within. All colours are intensified to a pitch far beyond anything seen in the normal state, and....the mind's capacity for recognizing fine distinctions of tone and hue is notably heightened.

Somewhat alarmingly that was what Aldous Huxley felt and saw after taking mescalin!

So my brain is spontaneously and for a few brief seconds generating a chemical process which mimics the effects of psychedelic drugs.

Or is it?

Because I had exactly the same hyperreal effect when I was drawing this picture. My subconscious took over completely to the point where the class tutor said she was going to demonstrate some technique and I wanted to get up and watch but I couldn't move, so 'locked-in' was I in the process of looking at and drawing the subject before me. That was a very weird experience and it has me searching for some way of explaining it.

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Part 2: the cure

“todo hombre puede ser, si se lo propone, escultor de su propio cerebro”.
(“Every man can, if he so desires, become the sculptor of his own brain”.)

-Santiago Ramón y Cajal https://www.nobelprize.org/prizes/medicine/1906/cajal/biographical/

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I woke up on the floor of the dining room and I was staring through past the double doors into the kitchen. The sun was streaming in through both windows and I didn't have a single thought in my head; I was just lying there. When I say not a single thought I mean the constant internal chattering had ceased, no words, only an awareness of the image before my eyes. I don't know how long I was lying there but eventually I stirred myself and got up to sit at the dining table. And then the brain started to function and I thought "I must have fallen over again."

This latest 'episode' happened shortly after my medication had been increased to 4x250mg tablets of Leviteracetam. At first I had been prescribed 2x250mg tablets, subsequently increased to 3 and then 4 as my episodes/seizures continued.

So I rang the hospital and made an appointment to see the neurologist. I explained what had occurred and how this one was different in that there was no immediate thought of 'where am I?' or 'what happened?' which are the usual things as the mind comes back into focus. She said that I would probably need to increase the medication again but she wasn't sure by how much and she would let me know. 

I did not mention that I had noticed that adding the third tablet had preceded a seizure as had this fourth one but I was not sure if there was a connection or not. Surely not, the medication is supposed to 'cure' me or, at the very least, to mitigate the effects of the malaise? And I recalled reading that nobody knew how Leviteracetam worked, only that it was an effective treatment. I did ask her that question at a previous consultation but her answer was suitably vague because neither she nor anyone else knew the answer. 

It was the same in our first meeting when I asked "What is the cause of epilepsy?" The answer at that time was that nobody knows the cause or causes but they know what can trigger a seizure; the strobe lighting effect is the 'trigger' that everyone knows, we often hear warnings on TV news reports - 'contains flash photography'.

So I returned home and waited for the 'verdict' to arrive in the post. It was three weeks before the letter arrived and when I read it I just went "Wha....!!! NO! That can't be right!" 

She had recommended a doubling of the tablets to eight per day instead of four. I sat down and thought about it and after a few days and bearing in mind that I had a suspicion that the tablets were helping to induce the seizures (as noted above) I decided to reduce the tablets to three per day and then wait to see what would happen.

It is well established that antibiotics have lost their effectiveness thanks to their being overprescribed. And the same goes for painkillers, valium, ritalin and many more. Does the same thing happen to essential prescription medications? (I do not consider painkillers to be essential. I have never taken any nor have I ever been prescribed antibiotics.) How many prescription drugs lose their effectiveness over time as the body assimilates them? How many eventually become a problem as the body's immune system must be compromised in some way by constant use of what to the immune system are 'foreign' substances?

So having gone back to three tablets per day I waited to see what would happen. 

For three months nothing happened, the longest spell without any seizure or any hint of a seizure, without all or any of the preamble described in part one earlier. I went back to the hospital to see the doctor for a previously arranged appointment after those three months. I explained how I had reduced the medication and why. She was not amused and, to be fair, she had a point. I was disregarding her advice which was tantamount to questioning her professional expertise and integrity. But I explained my reasoning and we had another long discussion about how there were so many unknowns in the field of neurology, something she had already acknowledged even in our first meeting. 

So it was agreed that I would continue along my chosen path and a further appointment was made for three months hence. Those further three months passed without incident and in the next consultation she agreed to gradually reduce further the tablets and I did that until I reached a point where I finally stopped the tablets completely which I think was in 2015, I can't recall exactly when. And so far, seven years later, there has been no relapse nor even the hint of a relapse. 

Am I cured? I don't know but I am seizure free and that is the most important thing.

So how did I do it? Again I don't know but I will say that psychosomatic illness is an acknowledged medical fact and I must assume that psychosomatic wellness is also a medical fact although an unacknowledged one. It needs to be more widely known and promoted. 

Here is Jeanne Achterberg talking to Jeffrey Mishlove about "imagery in healing" and how what, in sports psychology, is known as 'visualisation' can be used by anyone to promote their own well-being. That is not to say that presciption medication should be abandoned but they are not necessarily the only route back to wellness, as I have satisfactorily demonstrated to myself at least.

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Reading list and some further notes:

Irreducible Mind - Edward Kelly and others
http://www.amazon.co.uk/Irreducible-Mind-Toward-Psychology-Century/dp/1442202068/ref=sr_1_1?s=books&ie=UTF8&qid=1332358278&sr=1-1

One Cosmos Under God - Dr Robert Godwin
http://www.amazon.co.uk/One-Cosmos-Under-God-Unification/dp/1557788367/ref=sr_1_1?s=books&ie=UTF8&qid=1332358083&sr=1-1

Wholeness and the Implicate Order - David Bohm
http://www.amazon.co.uk/Wholeness-Implicate-Order-Routledge-Classics/dp/0415289793/ref=sr_1_1?s=books&ie=UTF8&qid=1332358185&sr=1-1

The Doors of Perception/Heaven and Hell - Aldous Huxley
https://www.amazon.co.uk/Doors-Perception-Heaven-Hell/dp/0099458209

The Biology of Belief - Dr Bruce Lipton
https://www.brucelipton.com/books/biology-of-belief/

Last word goes to Aldous Huxley once more:

And anyhow the body seemed perfectly well able to look after itself. In reality, of course, it always does look after itself. All that the conscious ego can do is to formulate wishes, which are then carried out by forces which it controls very little and understands not at all. When it does anything more - when it tries too hard, for example, when it worries, when it becomes apprehensive about the future - it lowers the effectiveness of those forces and may even cause the devitalized body to fall ill.

In the book Irreducible Mind, professor Ed Kelly writes that the brain is permanently on the edge of instability

"....neurotransmitter molecules are released into the synaptic cleft. The release is triggered by arrival of calcium ions at critical sites in the transmitter storage areas, the vesicles. But as these small ions pass through their membrane channels (diameter circa 1 nanometer) their positions becomes nearly fixed; hence, by Heisenberg's uncertainty relation, what happens next must be represented as a cloud of possible trajectories in the vicinity of the vesicle. This injection of a true quantum uncertainty - that is, an uncertainty involving more than incomplete knowledge of classically conceived details - goes on constantly at every one of the trillions of active synapses in the waking human brain, and this by itself is sufficient to establish that the brain is subject to quantum principles. This necessary entry of quantum uncertainties is also consistent with the findings of dynamic system theorists, who emphasize that in the waking state the brain operates continually on the edge of instability, with small changes in input potentially leading to large changes in overall behaviour. (p. 612)."
http://www.amazon.co.uk/Irreducible-Mind-Toward-Psychology-Century/dp/1442202068