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Brief update on my science project. A month of a few numbers and smiles.

• 452 total number of seizures since this all began with the rate reducing – positive
• 203 days since my first seizure – that’s life
• 31 the lowest number of seizures in a calendar month – positive
• 16 uninterrupted days where I did not have any type of seizure – positive
• 15 affected 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 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’.

I will be updating the website in the coming days with this months update. In the interim though, I wanted to share this. 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. Live life, you are literally designed as a complex adaptive system for this purpose. Go for it.

Mid month update on my little science project. Why is that you ask. Well back in February and March, I had ear infection after ear infection, my right ear drum burst and I was diagnosed as having mastoiditis at the time when my first seizure sequences started. Now in October I find myself in a repeating sequence of multiple ear infections in both ears. The infection is being targeted with a combination of spray antibiotics into the ear and oral antibiotics into the blood stream to try to get it under control. The infection will play nicely within two days or require more robust intervention to head off mastioiditis.

But look at the good news. So far this month all reducing in totals. I have to wait to see how the infection impacts my seizures over coming days. It is all about probability and I have moved into high probability status for seizure activity. Nature is saying to me, so you think you understand me do you. Now let me reveal more to you for you to assimilate and learn from. Fickle old creature nature.

Well now, update on my little science project. I have a 90 min appointment at St George’s London on 9.12.

One of the two centres of excellence in the UK as it relates to my types of seizures. Many referral letters have been written about me all with the word ‘interesting’ in every paragraph. All credit to the various medics who have put pen to paper.

So little old ‘interesting me’ will turn up with my ‘interesting data’. Should be jolly ‘interesting’…..bleeding edge stuff is fun.

I go open minded as ever but will not go quietly….

Another one of those funny little thing that happened on the way to…..

Went for my Covid booster. The lady saw my medical alert bracelet and then started to ask detailed medical questions. To which I answered correctly with a modicum of only answer the question, don’t elaborate.

Anyway, she then asked rather awkwardly for my medical consent. I agreed of course. Took the jab. I then moved to the waiting area for 15 minutes for monitoring. Well you know what my friend decided to come out and play. Tried being the operative word. Did not develop into full physical seizure but it was touch and go.

Exactly 15 minutes after the jab, I quickly exited the building as I had no intention of having a panic filled room of folk seeing someone who had just been jabbed having a seizure. You can imagine the press.

Suffice to say I am fine. It was just the irony of what could have come to pass that made me chuckle

Some people have asked me, ‘What does it feel like, when you are having a sequence of physical seizures’.

Extremely good question. I believe in asking questions. That is how we learn.

Now I am going to give you an answer, my perception, unique to me. As Feynam once wrote no one really knows absolutely, the answer to anything. That is why we seek new knowledge continually.

Everyone’s description of their physical seizures will be different based upon their own perceptions. This is my perception of a physical seizure explained as an analogy in music. My intent here is not to describe the preictal, ictal or postictal seizure changes to my metabolism or the clear biological changes which I can sense.

Just what it is like in the moment. Absence seizures are very different.

Before you read on.

You will see elsewhere that I describe the way I distract my physical seizures is by focusing on being conductor. A third person absent from the moment but controlling the players. My seizures are an orchestra needing guidance. You have to focus on making sure the string quarter is playing in synchronicity with the basoonists.

Choose your own metaphor. We’ll that is my clumsy way of portraying them.

For this to work, yes, you will need a second browser window open, where you can cut and paste the link. This allows to read and play the video simultaneously. 

More importantly, please be very aware that there is a personal health warning here.

Playing and watching the video clip of Hans Zimmers’ live performance of Man of Steel, can act as a trigger event for those who are prone to seizures. Please be sensible if your seizures are triggered by either rhythmic noise or by flashing lights.

This video is not for you. 

It contains flashing lights.

(61) Hans Zimmer – Man of Steel [Live in Prague DVD] – YouTube

Are you sitting comfortably.

Before I begin, let me share with you that this video clip was one of the pieces of music that kept me going in hospital when I was having very many physical seizures over a five day period. I used it to keep me sane. At the time, I had no idea what was happening or what I was experiencing. I was having seizures, nurses were attending, my vital stats were being taken whilst having seizures, medics were trying to capture events on video. Other patients were wondering what the heck was going on. I was just having them. That was the easy bit compared to the controlled chaos that was happening around me.

So let us begin.

The music starts with a gentle feeling. There is an undercurrent looming. The players prepare themselves. The video shows an oscillation. It begins. The aura is detected. A pulsating drum beat begins and progressively increases. At this stage I seek safe haven. A safe place. 

Yet, there is in parallel, a feeling of calmness. The two co-exist. One of conscious and one of sub-conscious. One trying to become more dominant over the other. The calmness dissipates, the drum beat becomes more intense. 

The conflict has begun, yet the two states are tied together in a symbiotic relationship. The seizure starts. It takes control. It reaches a crescendo. Suddenly there is a quietness. The drum beat reduces in amplitude. The calmness tries to return. 

The underlying drum beat continues. There is another conflict.  The seizure takes full control as if to say, I have not finished yet. Yet, the conscious is fighting back becoming more dominant. It will win out. 

In one final attempt the drum beat tries to rest control. Another crescendo. Stillness. The drum beat fades.

The seizure has passed. All is quiet.

Life carries on.

If nothing else, you have just listened to, and watched, a phenomenal performance of a piece of music.

A little update on my science project.

I was looking at the data. As you do when you have a few moments to spare. I am working out exactly how do I go about intercepting my absence seizures and I did this comparison.

The first one shows all seizure types to date excluding when I was in hospital. The second is for the month of August.

The percentage change shows that I am managing to intercept the physical seizures and convert them into only start phase aura and end phase headache with no physical seizure in the middle. I think I am doing well on this front. This gives me every encouragement that once I figure out the intercept process for the absence seizures, I may well be able to effect a similar outcome. Promising stuff. The current seizure count stands at 398. Hopefully before I reach 800, I will have increased the orange segment to a higher proportion and consequently reduced the blues and the reds even further. The reds remain the worst type which really do steal time from you and leave you wasted. Where there is a will there is a way.

In response to a thread on the FND facebook support group concerning managing functional seizures.

I have learnt to recognise the different types of aura I experience/sense before a seizure. I have learnt these by type of eventual seizure. Then dependant of the type of aura I use an appropriate distraction technique. For example, for some of my functional seizures I use audio and sensory grounding. I really focus on being the conductor in a piece of music. If this does not prevent the physical seizure, I then use a duck quaking technique which allows me to bring the physical seizure under control without it fully developing into a full blown seizure. I am still learning about the aura types for functional absences seizures as they are harder to intercept between the onset and when I become absent. I am learning though. I have been able to get most of my functional seizures under my control. That is to say I still have an aura, I detect, I take a course of action, I do not enter the whole body seizure and I then get the post seizure headache which tells me it is over. I cut out the middle part but still have aura start and headache end phase. This gives me confidence and I am more comfortable doing normal things as I am not going to have to lie down and find a safe place to have a physical seizure. I do still though have physical seizures but on my terms in that makes any rational sense.

In response to a thread on FND Facebook support group re daytime naps.

A bit off topic but in my clumsy attempt to manage my own variability, I use my own data on myself to show me when I should go and have a lie down based upon previous seizure activity. I use this to manage my day and to plan my day and naps around historical seizure activity. Collecting the info is one of the many distraction techniques I use to keep myself otherwise occupied. It works for me. I started collecting the data at the end of April after my first seizure. Have fun and enjoy.

In response to a question on the FND Facebook support group regarding how long do vacant seizures last.

Timely, as I had a number of them today.

I have absence and physical seizures. Absences can be between a few minutes and tens of minutes. They can also be back to back with a gap in between of around 30 minutes. Physical ones come in sequences of between 3 to 5 max in a sequence. Each physical seizure up to around 2 to 3 minutes. Sequence time varies up to around 25 to 30 mins elapsed. Absence seizures normally followed by physical seizure sequence later that day.

Nothing like bringing you back to reality with a jolt.

You have good days and then some not so good days. Two absences, one distracted physical but as the absences had occurred the physical sequence came later. Sequence of three. Shattered. Not down trodden, these days happen. Tomorrow will be better and should be less than six.