October – Functional Seizures my journey

31 October 2021. 203 days since the first seizure.

Good afternoon.

Let me start with a post I put out to my friends today. I suggest that this may give you a clue as to how it is all going. I will then offer some of my musings such as they are.

A month of a few numbers and smiles.

452 total seizures with the rate of addition each month reducing – positive
203 days since my first seizure – that’s life
31 the lowest number of seizures in a calendar month – positive
16 days where I did not have any type of seizure – positive
15 days where I had one type of seizure – positive
13:14 the ratio of physical seizures to absence seizures – positive
3 months in a row where the total seizure count has now consistently reduced – positive
3 the clear definition of the types of seizure I experience and allowing me to have distinct and focussed strategies to mitigate these – positive
1 burst ear drum – well that is just life

1 holiday coming up in two weeks time – gotta get those rays.

This is my overall seizure activity by month since April.

This would suggest to me that my own very personal approach to all of this is resulting in the outcome I am aiming for. Which is clearly, for me to control ‘it’ and not for ‘it’ to control me. To manage my seizure activity, allowing me to just do ‘things’. This approach also allows me with a building evidence base, to be able to re-affirm to everyone who may be having a difficult time that there is always sunshine after the rain. What happens to us does not define us, it is how we deal with the adversity of life which makes us so much very human.

So, what did my friend have me learn during the month of October.

Before I muse, it is worthwhile restating some of the ways that I have approached this change in my life. I do not underestimate the extent of this change. I also recognise that my functional seizures, as they are limited to either physical seizures or absence seizures are at the ‘milder side’ of the spectrum with no other co-morbidities. There are those who face significantly more challenges than I.

I have said it before, and I will say it again. I take my hat off to those who are experiencing greater difficulties. It is hard. I know. For me, some of the simple things, such as my independence have been limited compared to what they once were. For example, I can no longer drive, which is my choice. I have to a large extent tried to remove from my ‘life’ those day to day ‘normal’ experiences, those environments where I might become ‘sensory overloaded’. In that respect, my ‘world’ has become a smaller place, but I am content with that. I am of an age, that I no longer need to ‘put myself’ about. I continue to work, with fantastic support from my colleagues. I am able to live a near normal life with tremendous support from my wife Miranda and my two children. They are incredibly supportive. I am able to function well most days. You will have seen from above, that the number of affected days in the past month is roughly half, so I am making good progress and this ratio, of good to not so good, is on balance moving to be in credit with the good days. It is also true that whilst these good days are good days, they are always overshadowed by events of the bad days.

Functional seizures are pervasive and tiring.

A little bit of light relief. An article written as part of the debunk of Neuromythology by Professor Jon Stone. It is called a Tale of Two Turnips.

Enough of this apple pie and motherhood, of which I both love and admire enormously, let me move swiftly on.

On April 11, the day of my first seizure, I gave my then undiagnosed, unexplained event a name. This was for a purpose. I wanted to objectify ‘it’. To give ‘it’ an entity which meant that it was it was both real and yet not the real me that was still there. It was an additional ‘friend’ on the journey of life who had come to stay. Its name was aptly given as ‘The Insidious Little Bastard’. My apologies for the use of such language, but it summed up at the time how I felt. It also allowed me to start the process of understanding whatever it was objectively. Without emotion. Removing the subjectivity and any suggestive or judgmental approach that some may take. It was then and remains now, just an interesting piece of science to me. To explore, to learn and ultimately to allow me to manage TILB effectively. I know that others have adopted a similar approach of objectification and that they too comment that this has been useful.

A second thought is a more tricky one. That is acceptance. I remember the moment vividly when my neurologist explained to me what in his opinion the seizures were. Within a very few minutes, I had a ‘accepted’ what I had been told. The process of acceptance is not one that just allows you to say ‘Hey-ho – so be it’ and to be crumpled or defeated by its meaning and implications. That is not its purpose. What it allows you to do is to move forward. That is the only way we have. There is no reverse gear in life. There is no meaningful purpose in looking back. There is though, enormous benefit in saying and committing yourself to the mindset of, ‘I am interested in the future. That is what matters’. This to me, is what acceptance means at its very core. Others may have a different view of ‘acceptance’. Everyone will have their own internal thought process and I make no bold claim as to the right way or the wrong way. What matters is that people find their way. It is a truism that what works for one may not work for another and once someone has found that which works for them, they should be encouraged along that path.

But I must balance this. Acceptance is a process not an event. The reality of my own situation is that even though I told myself to ‘accept’ on day one, it did take some three months for this to really come into force. It takes time to adjust. For others who may be at different stages in this process I would say this. I have found that you do need time for this adjustment period. You will get there but don’t rush it, just be methodical in your steps and you will end up in a comfortable place. If I may make a complete mess of a metaphor ‘if you take too big a stride, you will take two steps backwards. It is better to achieve small steps with consistency. You will still get there and possibly without as much heartache’.

For me, this process of ‘acceptance’, of being single minded about it on day one, and being comfortable with ‘doubt and uncertainty’ in its broadest sense, is in my humble opinion the major contributory factor resulting in where I am now with my progress and general wellbeing. It is about moving from a position of neutrality, of indecision, to a position of determination of purpose.

Now that I have tried to explain a little bit about my philosophy, allow me to muse on the autumnal month of October with its tendency to be windy, rainy and with the sun shining brightly in the low horizon. It is also a good month for night gazers to watch the stars without getting too cold.

This month was about consolidation. Doing more of the same. Focussing on each type of my seizures and being able to really differentiate and mitigate each type with the strategies I have learnt. Using neuroplasticity to de-emphasise the seizure by breaking it down and consistently unlearning the learnt pathway which lead to a seizure and replacing this with new pathways with more beneficial outcomes. If you talk to any physiotherapist they will talk about muscle memory. Well, in the context of the brain, conceptually there is no difference. You must put in those repetitions to build the muscle. With the brain, you must put in those repetitions, so that the new neural pathway, the non-seizure pathway, becomes ‘imprinted’, ‘memorised’ and becomes the default learnt behavioural response. It requires single mindedness of purpose. Determination and the belief that every time you shorten that piece of string, which is the seizure, you are gradually and inexorably improving. Every small step you take, moves you gradually to your goal.

One of those goals was to clearly differentiate between the two types of physical seizures and to continue to try to figure out my absence seizures. The ‘bete-noir’.

How did I do.

Well, let us look at some data to see if this offers any insights.

What this shows is that I have made significant progress in when I allow my seizures to happen. I say allow. I would refer you to last months update where I defined this concept I call ‘allow’.

The blue is my full-blown body physical seizures. I had just the one seizure sequence during the day in October. This seizure type is diurnal. I also had some physical seizures which I was able to distract using the duck quacking technique. If you look at the seizure analysis, I further explain this. Most of my full-blown physical seizures are now of the nocturnal type. These are when I am transitioning from wakefulness to sleep. I purposefully start to wind down at 2100 each day and aim to be resting by around 2230. I do not sleep through the night. I will be awake at roughly 90 minute cycles. This is my cycle of sleep. I have a REM sleep disorder and have been able to function well with only a very small amount of sleep from being a small child. That is just me. I record my sleep data as well but that is for another day.

All of my absence seizures are diurnal and tend to coincide with periods of relaxation and or eating. If I am relaxing and eating, the probability increases.

These two pieces of data are very encouraging as it shows how I can influence the timings of my seizures. I am able to remove some of the day to day variability and to be able to plan to do things as long as I avoid high probability time periods. A full analysis which shows a circadian like pattern is available on the seizure analysis page.

I am also learning more about my ‘bete-noir’. I have identified three elements of the aura which now allows me to tell someone, usually my wife that I am about to become absent. This is a major breakthrough for me. Granted, it is only seconds, but moving from no time to two to three seconds is a huge improvement. The challenge for next month is to extend this warning period. Some say though, that once you have detected an aura, you are in fact in the seizure. What I am trying to do though is to extend the period from when I can detect the aura to the time I actually go absent. Silly things, like I may be able to go for walk again alone if I am confident that my warning time is sufficient to call someone to let them know I am about to go absent. This is a confidence issue rebuilding my independence.

This is the major news of the month and I am really pleased.

I also had a bout of ear infections in both ears and there was a concern that I may be experiencing another bout of mastoiditis in my right ear. I went deaf in both ears for a period of about a week and my right ear drum has burst. So something is afoot. I am been looked after by the ENT folk at my local hospital so that base is covered and I am seeing them again this Thursday. Generally my hearing is very muffled but it is not gone, gone. Just having a holiday.

Talking of which I will be taking another holiday in a few weeks to the Canaries to get some last rays before Christmas and this again will work in my favour by being relaxed and with time to think about all the things I want to write about. I have found that writing about my ‘friend’ also helps as it further objectifies it.

On balance, I am incredibly pleased with this months progress and it really encourages me to carry on with the strategies and path I am walking along.

Then to round off the year, I will taking all of my data, all of notebooks and discussing this with the folk at St Georges who are one of the centres of excellence on functional seizures in the UK on 9th December. I am really looking forward to this discussion so things are starting to fall into place.

In closing, I must again thank all of the people who are around me, my wife Miranda, my children and my colleagues at work who have made light work of this period of learning I have been through. The support has been extraordinarily noteworthy and without their support I doubt I would have made such good progress.

Thank you for reading my story and in November I will attempt to write a few papers on holiday which are taken from my copious notes I have compiled over the past few months.

I find my functional seizures fascinating and for me they continue to be a great science project for me to get my teeth into. As ever I remain very positive.