30th November 2021. 233 days after the first seizure event.
Good afternoon.
Let me begin with some numbers suggesting once again, good incremental progress. I also have an appointment at St Georges on 9th December so all is coming together nicely me thinks.
486 total seizures – that’s life monthly incremental rate decreasing – positive
233 days since first seizure sequence – that’s life
29 seizures in November lowest total seizure count in month – positive
20 days during the month without a seizure of any type – positive
10 days during the month 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 based upon REM sleep – positive which can be used to predict seizure activity – amazingly positive and helpful in managing my seizures
This is my overall seizure activity since April. You can see a full set of data on the Seizure Analysis.
Another months worth of data showing that the way I am managing my seizure activity seems to be working for me. Let me restate, I take no medication, just science and rationality. You will see that I have now been able to reduce the seizure types to the two ‘core’ types.
I had the good fortune to get away for another few weeks of late sunshine for the latter part of November. This is now the second time I have flown and for those considering flying, yes it can be done. I will admit that I do have to ‘prepare’ myself for the flight and during it I wear noise cancelling headphones to reduce the possibility of a seizure. I am also able to distract the physical seizures with the duck quacking technique. As others have said as well, if you focus on something other than thinking about seizures, they tend not to drift into your consciousness.
Being away also gave me a chance to collect another set of data so that the month is split into one half being the ‘normal’ life you lead and the ‘relaxing’ holiday mode you try to be in when you are away. This is helpful when considering and learning about my trigger events as I can really start to understand what they are and what are a major influencers.
So, to the first half of the month how did I do.
And now the second half to compare. This is when I was away on holiday. If it were the case that my seizure events are caused primarily by ‘just being alive’ aka ‘stress’, then there would be a reduction in seizure activity. Note the 4th November was a result of a hospital visit and ‘pointy sticks’ aka Otoscopes being inserted in both ears. This day is excluded in the summary statistics at the top of the page but included here for completeness.
But what is that, how can seizure activity increase when you are on holiday. In a relaxing environment where the normal ‘stress’ of being alive is reduced. Well, this now leads us onto a very interesting line of thought. One which I have alluded to in previous months.
What is different between the two halves of the month. Are there any correlations in the data collected since April which suggest a reason as to why there is this increase in physical seizures. Is there something in the water abroad. Or is it something which was there all the time but which only time would reveal if enough data were collected.
Let me digress for a moment. When my neurologist briefly explained to me about my seizures, he told me that there was no cure, no medication. The way to be able to deal with this was through firstly acceptance and then management. I accepted my seizures on day one and have put all of my focus into managing them.
To be able to manage them, I have learnt to recognise the different types of seizures I have. I have learnt the different aura’s which come with each type of seizure. They are subtlety different. I have learnt to be able to distract, to compress, to reduce my daytime seizures, in terms of both severity and frequency. I record data allowing me to review activity.
What this months data now allows me to do, is to go further. I am now able to predict days in advance as to when I might have one type of seizure. That is my daytime physical ones.
This for me, is important as being able to manage the variability of when seizures happen is incredibly helpful. It allows me to start to return to a ‘normality’ of not having to be overly concerned as to whether I am going to have a physical seizure during the day. It has also allowed me to confirm that I have now reduced the seizure activity to two core types. Daytime absences and evening/nocturnal seizures.
I am still struggling with the daytime absences as they are difficult to ‘interrupt’ and I will be talking to St Georges about these and to understand from them what strategies people can adopt to manage these.
The same goes for the evening/nocturnal absences but I am less concerned about these. Why. Well, when they occur, I am in a safe place and the time they occur is consistent. I have joked with friends that my nigh time routine is now one of clean your teeth, go to the toilet have a seizure and go to sleep.
Let me return to the differences in the two halves of the month.
Through the data I have collected it is evident and correlated that the key difference which has resulted in an increase number of physical seizures is the amount of actual time I spend in REM sleep.
Not only has this occurred this month, it also occurred in July and you can see the data set on the Seizure Analysis.
This strongly suggests that my seizure activity is all linked to my REM sleep disorder which was diagnosed after a sleep study years ago. The sleep study was in effect an overnight EEG. The reason I had this performed was due to motor activity during sleep.
The manifestations of a REM sleep disorder are that you physically act out your dreams and do not go into paralysis as you would normally do. I had many occasions where I had ‘sleep-walked’ and found my self in a place where I had no idea as to how I got there.
If you think about it, a seizure could be described as me entering REM Sleep during the day and acting this out though the physical seizure. Similarly, my absence seizures could be described as me going into a sleep phase, yet still being ‘conscious’ albeit ‘locked in’ and unable to respond.
It suggests that my REM Sleep disorder has progressed into seizure activity and interestingly I have found research which supports this link and progression.
Could it be that what I experience as a disturbance in my neural network, which manifests itself as seizure activity, this conflation of consciousness and sub-consciousness, of voluntary and involuntary, of wakefullness and sleep be predicated upon an overall loss of timing synchronicity between the left and right hemispheres. Where the cause of the loss of synchronicity being the interconnections contained within the corpus callosum. After all, it is just about neurotransmitters. One for the academics and philosophers to debate.
I will explore this with the folk at St Georges this coming week to see if there is any merit in the suggestion.
A brief update this month so I will finish there. I have a busy week ahead with audiology tests and a visit to St Georges so I will be learning much more this week.
Thank you for reading my story. 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.
To experience is to live, and that is our purpose, whilst we await for our telomeres to finally unravel, and we depart this oasis which sits in the vastness of the universe.
For previous months update select the month from the expanded menu under Monthly Update on the homepage.