Last updated 22nd June 2024
Well that was a fun day. Thursday, April 11, 2021. I went to bed not aware of what was about to unfold. What was going to become a new chapter in my life journey. At around 2320 I started to have unexplained seizures. Multiple events each lasting for five minutes. An ambulance was called and then a second one. They arrived within eight minutes. I was stabilised and taken to my local hospital. The initial concern was that I had possibly had a stroke, a TIA or something not very good. The role of the hospital was to figure out what was going on.
I maintain my progress on this website by a combination of monthly updates and ad-hoc posts which you can navigate and search upon.
Everyone who experiences seizures of any form will quite naturally ask themselves the following question.
‘What is the prognosis of my diagnosis, will it improve ?’
All that I can say, is that everyone’s experience and journey will be unique to themselves. My journey has been a positive one. The strategies I have used have helped me ‘manage’ my seizure activity have resulted in the progress charts below.
A key metric I have used to manage my seizure activity is the probability of me having a seizure or sequence of seizures. This probability increased in December 2023 due to recurrent issue with my right ear. This spike was at a level of 2.2 on my index, with 7 being severe enough to warrant serious concern. After some minor surgery it decreased and as at 22nd June 2024, my current probability is around 0.31 events per day. I anticipate a seizure event happening every rolling 72 hour period at this level.
I have developed my own short term, medium term and long term weather forecast, based upon biometrics and have a pretty good idea of when it ‘is going to rain’. I use this forecast model to manage my seizures to a low level.
‘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.”
Content with my progress.
This site is about functional seizures. They were once called non epileptic attack disorder. Many feel a far more positive and supportive description is functional seizures. I personally prefer the term ‘neural network disorder’ as this more correctly says what they are, and not what they are not. It affects a small number of people in every 100,000. As the canon of understanding grows, more people are both made aware of it and more people are positively diagnosed. If this site helps one person in any small way, its objectives have been met. I am a great believer in serendipity and the butterfly effect. The author is someone who has been very fortunate to have been diagnosed with this condition after being captured on video whilst having an EEG within hospital. This has allowed me to move rapidly through the stages of acceptance to arming myself with the strategies to allow me to control it, rather than it, control me. Others may have lived with this condition for decades without a diagnosis. I live with this condition. Every day I learn something new as I strive to understand and manage my seizures. Any information on this site is provided on an ‘as is basis’ and does not represent any form of medical opinion or otherwise. These are just my personal experiences and will be different to those experienced by every individual. You should not rely on any information here as being a replacement for sound medical advice which you should seek if an any doubt.
The capacity to learn is a gift; the ability to learn is a skill; the willingness to learn is a choice – Brian Herbert