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In response to a question

Hello all 😊 Just a wee question.

A few times this week when getting warning symptoms come on, I’ve been able to stop the seizure from occurring by distraction, left with a horrible headache after which settled after a couple of hours.

My question is:- does this mean progress? Why I ask is I still felt frustrated that I have been having warning symptoms because I was feeling absolutely fine beforehand, and feel I’ve been doing well as I’ve not had a seizure for 20 days.

Thank you all 😊

Progress. You are cutting out the middleman (the main event of the seizure) just leaving the post ictal headache. Over time I found that the postcictal headache also reduced. In what I have written I liken the whole process pre ictal aura, ictal phase and post ictal being a metaphorical piece of string and the objective is to reduce the piece of string. The diminish in the DID acronym. Distract interrupt diminish.

interesting. Seizure free now for 35 days but she’s also seems to be left with headaches. Do they reduce David? Big test next week as she’s away on a residential 🤞

In short they can and have done for me. There is a physio biological reason for this. Imagine the preictal aura being a headache which is indicating a neural disturbance. The neural network is going out of equilibrium. The post ictal headache is the converse of the neural network coming back into equilibrium but over compensates. This is why the post ictal dissipates in realtive terms in a shorter period than the pre-ictal headache is present as the neural network tones down or fine tunes to the point of equilibrium. The autonomous system is readjusting. Pass on good luck to your daughter from me after 35 days she has made great strides and needs to build on the success. Small steps are best repetitively done gradually shortening the process.

In response to a question about headaches.

Great news about the seizure activity. Long may it continue. By keeping a log of events and hopefully prodromes, auras and triggers you may be able to find some useful insights from these which help you to manage the activity. The literature suggests avoiding opioid’s and the neurologists preferred course of action is the use of low dosage Amityptiline. Now. Counter intuitively I like my headaches. What you might say, he is off his rocker. But let me explain. For me, having headaches was really useful in the grand scheme of things. A few reasons. I used to and still do have prodrome headaches. Firstly, a great early warning sign that I need to take extra care. A bit more rest each day. Finding relaxing time – I listen to music. This has helped me mitigate onset of seizure activity by being pro-active. The prodrome signal is roughly 48 – 72 hours for my persistent headache. Secondly, I experienced a massive onset of headache as an aura which immediately led to a seizure sequence. I learnt the difference between the prodrome and the aura in these two examples by correlating to other physiological signs. In the former, I was just more grumpy. In the latter, an increase in blood pressure. I noticed this by the veins on my left hand becoming proud. As an aside the brain matter per-se does not have pain receptors yet the capillaries in which the blood flow do. So if you wish, the headache, some say, is the pain (or sensory) receptors saying to other parts of the brain (the bit of the autonomous system which controls blood flow, pressure, and the myriad of related chemical stuff which keeps us ‘stable’) – whoah there is something which needs ‘regulating’ or another way of saying something is out of ‘equilibrium’. In this example, a distinct physiological aura. In general terms this type of aura and headache resulted in an absence fpr myself. This allowed me to use the DID acronym as in ‘I did’. The full phrase is I can, I did. The DID stands for distract, interrupt and diminish which is what I call the process I used to ‘manage’ my absence seizures. Duck quacking is for physical seizures.. Then the final reason. I always have a post-ictal headache. In that respect the post-ictal headache is when I know the sequence is over. This type of headache is again a massive onset and then dissipates after a few minutes. This was also helpful in the ‘duck quacking’ process as I knew that I had successfully interrupted (note more than distracted as interrupt means new neural pathway). So that is why I liked my headaches. Having said that what did my neurologist have to suggest. He is actually a chap with a keen interest in headaches – see my first comments. Personally, I chose not to use ‘medication’ as I took the view that it would act as a ‘crutch’ as opposed to help diminish through learning about the seizures and ‘unlearning’ the seizure process and sequence. For me the inherent neuroplasticity was a more powerful ‘medication’. Others will have a completely different view and I utterly respect that as headaches can be overpowering and take over. Everyone will find their own way of what works for them. A long way of saying I have managed down my seizure activity and consequently my headaches through the DID process and neuroplasticity without medicating. Good luck in whichever route you take.

Similar to a game of cluedo.

The absence seizures in the room with z fan and a temperature of 31C.

Three in a row massive post-ictal headache.

The day started with right ear ache and muffled hearing and tanked as the heat rose. Clearly a huge trigger the heat that is.

In response to a question about travelling abroad and tips.

I have flown four times since onset of seizures. Always with my wife who has also learnt to recognise the subtle change in behaviour when I start to have an aura.

Plus what to do in the event of a seizure. Keep calm and everyone else calm.

It is human nature that when they see someone having a seizure they assume ‘they have to do something’ whereas for me and generally others it is best I that I am just allowed to have the seizure.

I am not embarrassed nor harmed by the seizure.

Major trigger for me is/was sensory overload – primarily auditory and visual.

To prepare myself for the flight I went through a process of gradually de-sensitising myself to noises and visual stimuli which I thought I may experience in a busy airport.

I chose a tesco store as it also had a travolator. I purposefully went to tescos to ‘experience’ the ‘trigger’ sensation so that I might learn how to deal with it.

Took a few trips and a few seizures instore but for me it was about making the ‘abnormal’ which acted as a trigger to be the ‘normal’ where my brain recognised the ‘sensory’ input as ‘well that’s just normal’ no need to seize. (On the basis that the seize is an innate involuntary response to an overload condition).

That way I learnt how to turn an involuntary process into one where I could ‘voluntarily’ control it or rather I learnt to teach the brain to not seize.

Takes time and a lot of repetitive action.

During the flight I relied on distraction techniques mainly auditory by listening to a certain type of rhythmic music.

By the time of the first flight I had also learnt how to bring my physical seizures under control so that I just experienced the pre-ictal aura and then the post-ictal headache (no actual full body seizure).

I learnt this by what I call the ‘duck quacking’ technique. I did have some absence seizures on my first flight.

Other practicalities. I wear a sunflower lanyard whilst travelling as being in a place with lots of people/noise/sensory input makes me more likely to need more time to process everything as I am trying to concentrate of not having a seizure by distraction.

This means I can become quite ‘flummoxed’ with even a simple request of ‘passport please’ plus there is the added ‘busy ness’ of being in a queue process where you are under a ‘forced’ response time.

The lanyard is also more useful abroad as Europeans tend to me more aware of it and genuinely give you extra time and space.

Be prepared for a long day and take every opportunity to find quiet relaxing places when travelling. Airports have them you just need to find them.

One unintended consequence of booking seats with extra leg room and then telling the cabin crew that I may have a seizure is that they asked me to move as the extra leg room seats are also the emergency exit.

I jokingly said that in the event of the need to use the emergency exit – just throw me out of the door – as it is highly likely that the emergency is more ‘needy’ than me having a seizure.

I believe in humour and laughing at myself. Others may not so no offence is intended.

Having read this far you may think well what a palava – no.

It is worth it.

The process of travel is just a means to an end. The true benefit is the holiday itself.

You will thoroughly enjoy yourself. I have written more on my weblog which explains more about the above if you are interested.

Live life, enjoy and experience all you can – my seizures were never going to define me and they do not.

Good Luck.

Celebratory song. One of my favourites. Equinoxe 5 if the Spotify embedded link does not work. Play it loud yet considerately, with decent headphones. Enjoy.

Thank you to everyone for my birthday wishes.

I’ve had a lovely couple of days.

Firstly on Tuesday, an at home evening meal with my immediate family which was lovely.

Then yesterday, to celebrate the ‘(148^2) + 11 th’ day on this oasis in the Universe, Miranda and I had a quiet away day. Just the two of us, oh and a whole bunch of Llamas in a nearby place. Reaching this milestone, entitles me to free prescriptions and a free bus pass. There is always an upside.

And to boot, I am now at a seriously low seizure probability rate of 0.06 per day.

Here’s a ‘picture’ I took earlier.

And today’s rhetorical question is.

‘Is there a way of being able to see my hourly probability profile where I might be more likely to be predisposed to an absence seizure ?’

Leading to a really useful guide for possibly others to use.

Myself included.

This is the beauty of data. I have been collecting quite a lot of it for my little science project.

This has shown me to how to understand the ‘profile’ of my seizure activity. I have had an analogous ‘long range forecast’ of 7-10 days based upon historical data for some time.

Over the past many months I have refined this and developed a ‘medium term forecast’.

Many call this the prodrome phase or events of around 24-72 hours in advance leading to a higher probability of seizure activity. But look below.

I now have the hourly profile working. An analogous ‘short term weather forecast’.

There is though one caveat. As with all weather forecasting models (which as an aside are a computational challenge for greater than 5 days – just look at pictures of the swirling weather systems at the poles on Jupiter which show us why) it suggests that it may rain, but upon which whose lucky head that raindrop is going to fall, is never quite known.

That is to say, everyone’s profile will be unique to them but the underlying concepts and methods are still valid.

The figures are the ‘probability’ (as opposed to ‘prediction’ – these are two different concepts) in ‘relative terms’ compared to one another for that particular day within the ‘prodrome cycle’ of myself.

This allows me to manage my seizure activity with far more granularity than before.

For those who have seizure activity, one of the simplest of many markers which can be shown to increase/decrease the probability of seizure activity is below.

Here it can be seen that a decrease in sleep and in particular REM sleep (a simple way of measuring delta brain wave activity for the more technical) leads to absences within 24-48 hours.

REM Sleep phase is the ‘green’ block. Disregard the 7h 50m comment as it is irrelevant to the point I make and is actually the time lying down in any 24 hour period as an average.

If you wish a long-term weather forecast, which allows what I call interrupt mechanisms to be used. In this example, the effect of reduced delta wave activity results in a disordered harmony between delta waves and other waveforms.

This precedes seizures and is strong indicator of future seizures. In other words, an advance aura. Think of it as a ‘butterfly effect’ as it relates to the function of the neural network.

Grossly oversimplified explanation but a simple tool for people to use to manage down their seizures and to plan their days ahead.

Email which I sent to my work colleagues.

Interesting chart.

Good afternoon all,

As an fyi – I made this public today.

Update on my little science project.

And this is what happens when you apply science and rationality. After all, as once said by a rather smart guy (Feynman) “science teaches us how to deal with doubt and uncertainty as no-one really knows.”

I have flatlined at 0, zero, null points in eurospeak, physical seizures with just the absences to continue to work on and they are reducing.

The PR is 0.16 per day. Content with my progress. 🙂

Off now to update this months commentary which I have maintained since day one.

I intend to publish my findings at some point after my daughter’s wedding day on 17th September as that quite rightly, is THE event of our year. Ear infections et al might get a bit of a mention !!

Again, I must offer my deep and sincere thanks to all of you for your support. It has been a major contributory factor in my good progress along one of the most fascinating of journeys.

My journey began on a very interesting night last April, when the attending paramedics decided to declare me ‘status epilepticus’ after a protracted period of seizure after seizure. I had the entire stock of diazapam from two ambulances and a car-based paramedic intravenously administered to stabilise me.

Quick-thinking on their part for which I am grateful.

Since then, I have been very fortunate to have had all of the right people around me, and with me, on my journey. I have approached this in a measured way, continually learning more all of the time about my seizure activity.

I continue to push my boundaries in a controlled way.

The capacity to learn is a gift; the ability to learn is a skill; the willingness to learn is a choice – Brian Herbert

I have always believed in serendipity.

Most of our modern day understanding stems from such events.

13 months ago I had my first seizure sequence. I was responsive during this sequence and thought that I had had a stroke. As did the paramedics as they rushed me to hospital.

11 days later I had a further seizure sequence. More violent in nature and I was unresponsive. It took the entire stock of diazepam from two ambulances and a further car based paramedic to stabilise me. I was declared status epilepticus. Not a good status. I spent five days in hospital having every test known performed.

I was discharged with an unknown prognosis.

From day one, I approached the situation in true Appllo 13 mode ‘what have got thats good with the vehicle’ and focusing on ‘let’s work the problem not make it worse’. I began my science project collecting data for analysis and figuring out what was happening and how I could manage and reduce my seizure activity.

The support I received from Miranda Emma, Sam, Antonio, my wider family and work colleagues was and remains phenomenal.8

In the past 13 months I have had 618 seizures. My last physical one being 79 days ago. My last absence 8 days ago and the probability of me having a seizure sequence is now at 0.1 per day.

But where is the serendipity.

Well part of the medical team is based at St Georges in London. This is one of the two UK specialist centres who help people like me with my types of seizures. Only 4-12 in 100 000 people will experience them.

Today St Georges acknowledged that the approach I have taken and the methods I have used to reduce my seizure activity is a good one. I have been invited by St Georges on a zoom call next week to share this with other patients who experience the same so that they may hear about this and hopefully take some comfort and potentially learn methods and mechanisms which may lead to an improvement along their journey.

Serendipity.

The good thing is that the story as it all unfolded is already documented.