June 12, 21. Exactly to months with my new friend.
Good afternoon.
Long read apologies in advance. I wanted to share with you my first two months of my own experience with NEAD. My first seizure sequence was on 11.4.21 and I was fortunate enough to be diagnosed on 28.4.21 after having a barrage of tests with the important one being an EEG where I was a good boy and had a seizure sequence whilst wired up and being captured on video.
My consultant when explaining things to me said in essence, I want to discharge you now and get you to go home. There is nothing this hospital can do for you and I will refer you to St George’s. He then explained that there was no medication that could be offered and all I was given was the neurosymptoms website.
I know that the above discharge process is a common one. Some feel this is harsh.
However, for me it allowed me to rapidly move through acceptance to working out pragmatically what this all meant. I keep a daily diary where I record the days events. Good and bad. Once discharged I took on board the concepts of sensory grounding, distraction techniques and about using the brains own innate elegance in terms of neuro plasticity so that I might unlearn those habits and processes where the brain ends up ‘seizing’.
I am not a fan of the computer model of the brain as it is a gross over simplistic view of reality. I do though fundamentally believe in neuro plasticity as being the key to dealing with NEAD as well as another. That is to be able to be comfortable with the doubt and uncertainty which confronts us all.
At the end of the day the best medics are those who say well actually, we really don’t know why this is happening, but let us together try and find a way that works for you. Plus, they understand that that answer of I don’t know is an okay answer in the context of people who are comfortable with doubt and uncertainty. I could go on but enough for now as what is important here is the data below.
You will see a massive reduction in the number of seizures I have had.
Starting from where I was in hospital for a five day period. A spike when first at home and the sensory overload of coming to terms and having a lot of family around me. Then a reduction as I start to learn and practice sensory grounding, distraction techniques. Then a period at home doing nothing and then a gradual return to work. This has only been 2-3 hours a day in an office and me working from home.
Patterns are emerging which relate to days where I have overloaded myself in terms of sensory processing and have had seizure sequences. I continue to collect data on myself and whilst it is early days, the data suggests that immediate discharge, acceptance and moving to be comfortable with doubt and uncertainty has played a big part in managing my seizures.
I do not underestimate the effect that this condition has upon my life and I do not claim any magic or suggest that this is representative of the wider community experiences. This is just my own personal reflection of how I have been affected and how I deal with it.
I sincerely do not underestimate the effects upon each and everyone, and everyone’s own experience will be unique to them. Red are physical seizures blue are absence seizures which for me are the most difficult to deal with. The blue count is lower as it took me a few weeks to start to record these.
Thanks for reading my personal experiences.
