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PS Seizures today = 2 Distracted Seizures today = 3 – Good – I am winning. Excludes the overnight ones where I lost. As the saying goes winning & losing battles is irksome and transitory, winning the war is the prize. Current projected total 278 seizures in 90 days by the end of June. Takes some beating. Fascinating Stuff. 
I have nearly finished my first A5 Journal cover to cover in notes and data so next month I will start to collate and publish. Keeps me distracted.

As I have always said, I am very open about my condition. I am okay with it all, and I truly see it a fascinating science project.

Many thanks. I can see you studied Physics. Try to think about this in terms of quantum mechanics. I am reasonably well read and educated. Penrose many years ago postulated that the ‘then’ current understanding of neuroscience was missing a great deal in not embracing quantum mechanics when trying to frame the math around neural networks. One way of thinking of the whole nead debate is to imagine that every single connection in the brain (c.100 billion neurons each with at least one synapse and some with up to 100 (the super synapses where it is now thought subconscious lies and assimilates)) are all subject to a ‘timing’ issue. When the timing goes awry the whole ‘neural’ structure goes into meltdown or more clearly put, chaos which then returns once the timing issue has resolved itself. Yes, you can apply spooky entanglement as well at the macro (and micro) level where each hemisphere gets out of synch with the other and loses its frame of reference. Crossing the midline via corpus c. Hence, the temporal degradation of motor movement and the involuntary ‘splitting’ of the brain into its elements where the super synapses cannot assimilate and just have to go through a chemical process of allowing the chemical processes to work their way through. As you can see I do have a ‘tad’ bit of background understanding of this all. I have a very active brain despite it throwing me this little curved ball to think about.

Well that was fun. Lie on the couch and let me look into your ears. Tremor started then full blown seizure. That got his attention. Nice man. Caring and empathetic. Just as baffled as everyone. Clearly a neurological event. No infection from mastoid breached the blood brain barrier looking at scans. Good news.

Well the seizure count is now 198 and will I get the double century today tomorrow or before. Seeing ent consultant am to investigate mastoiditis present on mri at time of diagnosis of non Epileptic attack disorder. That and cerebral atrophy. Gets better. You never know. Nead can be triggered by physical trauma and infections passed into the brain by the bits which connect to it. We’ll find out tomorrow. Always go with an open mind and set yourself the target of learning something new in every conversation.

I am new to all this. I was diagnosed with nead at the age of 58. No prior seizures or history until April 11. Since then nearly 200 seizure episodes. What I have found to date is that the whole debate between neurological and psychological quite disheartening as it confuses people. My simple view is based upon my own research and reviewing material in my works description it is a neurological process issue. Dress that up how you may wish and with no offence to anyone. Every one will form their own conclusion. However bear in mind this debate is in lineage is much the same as others where our true understanding of neurological science remains very patch at best. We simply do not know enough about the most complex organ the brain. I liken the medical professions attitude to this in the same way that autism has once thought of being frozen mother syndrome. Also bear in mind that the medics you see are not up to date they rely on a lecture they paid some attention to 30 years ago in their training and frankly are not as current as the here and now. In relation to the comparison to how the understanding of autism has unfolded Kanner described it in 1943 Aspergers paper was not translated into English until 1979 and it took a further 35 years before the true concept of a spectrum was agreed upon and was incorporated into the DSM. The DSM is the medical bible and if it is not in there then the condition does not exist. My understanding is that whilst fnd was described as early as 1907 it is only in the past 10 years that a new neurological based understanding is becoming the norm. There is a way to go and the here and now medicine diagnosis typically run 40 to 50 years behind the first real studies. Again no offence to anyone just my simple take on life. Read neurotribes to get a better feel for the timeline of complex neurological traits to become part of the fabric of medical understanding.

Update on my little science project. Apologies if a bit long. I have so, so much to convey in my thoughts. The data continues to show promise as does the subject. Did you know that epilepsy is diagnosed in 1% of the population and within that 10%, it is suggested, have non-epileptic attack disorder, NEAD, thus not requiring epilepsy medication. Yet it is still offered as an intervention. The only medicine I take is the most powerful one known to mankind. Rationality and science leading to understanding and a positive outcome. Anyway I wrote the brief article below to help people around me understand a tad about it. It has been shared within the UK FND support groups for others to use as a template to offer to their employers as a risk assessment for people returning to work. In my case ironically a GP Surgery full of folk who may need a little bit of encouragement in learning about the subtlety. I started back at work in the past few days albeit an hour or two a day. Health warning this is my experience and everyone with NEAD will have their own unique experiences. As ever I remain positive and fundamentally believe in the word serendipity.Non Epileptic Attack DisorderWhat is it – a neurological event where the nervous system goes from being in balance with itself, to being in a state of chaos, moving back to stability over a period of time. Imagine a colony of ants marching in a coordinated line. Then, draw your finger across that line. Breaking the chemical trail the ants follow. Watch the ants go into a state of disarray. This appears chaotic as they try to re-establish the line. In a short time, they do. The line is reformed. Order is back.Try it – but try not to squish the ants. They have a hard enough time. Just following that line is difficult.What happens to the person – for me, I have two types of seizures. Physical and non-physical. I know when a physical seizure is about to happen. I get a pre-warning of around ten seconds called an aura. This allows me to either put myself into a safe position and/or distract the event from happening. If I cannot distract myself, I need to lie down and be made safe. I will find a space where I can lie down and adopt the recovery position on my side. The seizure can be quite violent, so I need to have my head protected. A pillow under my head against a hard floor. I also need to have a blanket pulled over me to contain my arms and legs. I may inadvertently punch you on the nose. I must not be held down. The seizure will last for a few minutes and will pass. I am not in pain. I can breathe easily but may breathe heavily due to exertion. I do not become incontinent. I know when it is over. I can say the word hippopotamus and I have a very bad headache.What I ask you to do – stay calm and stay with me. If there is someone with you ask them to contact Miranda who will be in the building. It may be distressing for you to watch. I am not in any pain. I will lie on the blanket in the recovery position. Keep my head safe by putting the pillow under my head. Pull the blanket over me and hold the sides. This is to contain my arms and legs. Do not forcibly hold me down. Keep the blanket in place until I say it is over. I may have multiple seizures in one sequence. When I start to be more still ask me how I am. Ask me to say where I am. Ask me to say hippopotamus. My speech may be impaired but will return. I will say when it is over. If you would like a demonstration of how to make me safe just ask. I will not be embarrassed. What happens afterwards – I may be slow in my thoughts. I may use some ‘tasty’ language to describe how I am feeling. Please do not be offended. I may take a short while to ‘get with it’. Within a few minutes, I will be able to talk to you. I am lucid and back. My head hurts. The nervous system returns to normal quite quickly. Life carries on as usual.How do I distract myself – I put my headphones on. I listen to music. I focus on being the conductor. You will see me conducting the orchestra. I may ignore you. Not because I am being rude. I am really concentrating on distracting myself. I may use sensory grounding techniques. I will gently rock on my feet. I may walk up and down. I may press my hands together.What about the non physical seizures – these are harder for me to manage. I do get a short onset warning but not an aura. I will zone out. I lose concentration. I become confused. I will not finish a sentence. I may lose my speech. I appear vacant. These happen when I am engaged with people. You will notice a marked difference in how I appear to you. I am not in pain. I will not drop to the floor. I will just sit down in a chair. These last a few minutes sometimes longer. It takes me ten minutes to fully recover afterwards. Just keep an eye on me and ask me how I am doing. I will let you know when it has passed.What can you say to me – anything you would say normally. I am very open about my condition. I am not embarrassed by it. I understand you may have questions. Please ask me anything. It is not a fully understood condition. In every 100,000 people not many will have this condition. I don’t expect people to have come across it very often before.4 commentsLikeCommentShareActive

Update on my little science project. Well after five weeks from the first seizure I have learnt a lot. I keep a journal to record good data. It shows a significant downward curve in the frequency. Having said that the physical seizure count is 102 in the last 23 days with 9 days interspersed within that period having none. I am getting more of the non physical seizures which run about 3 on average a day in addition. These leave you confused for about 10 minutes afterwards. I always have an aura before the physical seizure. The physical seizure peak was 19. Fascinating stuff, well for me anyway. Good steady, small and achievable steps being the order of the day. As an fyi what really works is good distraction techniques and sensory grounding. The project continues to show promise. As ever I am okay with it all and positive. Top tip. If it happens keep calm. Keep the person safe and let it flow and it will pass. You are not in pain just disassociated

Diagnosed with non epileptic attack disorder NEAD on Wed 28 April after two ambulance trips to st Peter’s over 10 day period. Diagnosis confirmed via video eeg so very fortunate to have diagnosis made quickly. Referred to St Georges neuro team. Now life begins again with many new challenges to learn. I am okay with it and positive.