Posts

Well now. The second anniversary of the appearance of the ‘The insidious little bastard’ (the pet name for a seizure) approaches and what a difference a year makes.

At T + 719 days (t=onset) I remain at the magic number of 0, null points, zip – all types of seizure for > 95 days.

• last physical seizure > 395 days ago
• last drop attack > 95 days ago
• last absence seizure > 101 days ago
• last tonic seizure > 144 days agovs. 1 year ago this…

vs. 1 year ago…

So I asked Chat GPT what it thought about matters. I think ‘it’ concurs with my world view.

Neuroplasticity refers to the brain’s ability to change and adapt in response to new experiences, learning, and injuries. The brain is not a static organ; rather, it is constantly changing and reorganizing itself throughout our lives.

Neuroplasticity occurs through a process called synaptic plasticity, which refers to the strengthening or weakening of the connections (synapses) between neurons in response to new information or experiences. When we learn something new or experience something novel, our brain creates new neural pathways or strengthens existing ones to better process and retain this information.

Neuroplasticity can also occur in response to injury or disease. When part of the brain is damaged, other areas of the brain can reorganize and take over some of the functions previously performed by the damaged area. This is known as functional reorganization and is why individuals who suffer a stroke or brain injury can often regain some lost function with rehabilitation.

Overall, the concept of neuroplasticity highlights the brain’s remarkable ability to adapt and change throughout our lives, allowing us to learn, grow, and recover from injury.

Flying again. Sixth time since onset. Where to ? Somewhere warm off the West African coast where the mixture of time lapse photography and still life gives you images like this. Never ever give up hope, there is always sunshine after the rain. D

Nice thing happened today. On the bus a young lady was having an episode of verbal tics and motor tics where she was using her fists to bang her head. She told me she had Tourettes. I explained that I had seizures. I said try this and got her to mimic the duck quacking routine I use to bring my seizures under control. This is just pushing you forefinger onto you thumb rhythmically as if make a quacking duck. Then you ask the person having the seizure to lock on to the rhythm and to copy the actions using their forefinger and thumb. Then to synchronise with the rhythm. She got it and when she was synced her verbal and motor tics and Tourettes stopped as if a switch had been turned off. She was lost for words. Saying this started 15 months ago and none has been able to help this is just so cool. I suggested she try using it at home with her parents and with her friends. I left her seeing and understanding how a simple rhythmic timing exercise could be used to gain voluntary control again. She was quite taken aback.

Good morning all,

I have a general request to make.

As you know, I am prone to seizures – with my major trigger being noise.

This became apparent pretty quickly at onset and which was subsequently confirmed. I could be ‘induced’ into having a seizure by ‘sounds’ at a frequency of around 2Khz.  An interesting frequency – I digress.

Multiple conversations, a busy aural room or quite often just a busy aural place is enough to take me to ‘seizure city’. No large social gatherings for me.

Whilst I have made good progress with ‘re-adjusting’ the way I approach the aural world and how I receive it, including limiting the situations where I might find myself at a greater risk, I struggle with this aural challenge. I do use headphones to limit the number of conversations I am tuned into at any one time. 

One particular aspect still gives me great trouble and this challenge is mobile phones and in particular their speakers.

Sadly, the speaker phones on mobile phones and squawk boxes tend to produce sounds in the 0.3kHz to 3.4Khz. Squashing down the sound they are receiving and pushing out a ‘reduced’ frequency range on their little speakers.

Great for the consumer in price, not so great for my aural challenges. This is bang on my ‘sweet spot range’ for seizures. It literally sends me stir crazy.

What this means is that I seriously struggle to keep ‘it all together’ when people are talking to me via their mobile ‘speakerphone’. I am pretty confident, and I am aware of this, that in recent times there have been a number of occasions where people have put their phone on ‘speakerphone’ and asked me to participate and where I have been a little abrupt.

Not out of intent, I can assure you, but due to me starting to enter a pre-ictal state. I know when the pre-ictal phase is starting. During this I am really struggling to ‘process’ the sounds and frankly, I sometimes do lose the plot and get ratty.

I appreciate that it is a pain that something so normal and usual is a challenge for me. I have had to apologise to people after calls as to why I was ‘off’ as they were not aware of my difficulty in the first place.

I do try to inform new people I meet in meetings etc, of my seizures and of this particular noise trigger of mine, asking for the volume to be turned down and to limit conversations to one person at a time. Sometimes I do though forget. Even walking through a busy room with multiple conversations or just being a ‘busy noisy place’ has the same effect.

This is why I have headphones and why I always use my headphones when using my mobile. The headphones I use have a much more ‘rich’ and wider frequency spread and limit total aural input allowing me to process.

So, my request, is for people wherever possible to allow me to connect to ‘speakerphone’ mobile phone conversations using my headphones. I can join the call as a conference call – which is so, so very easy to do on mobiles, allowing others to be party to the ‘hands free/’speakerphone’ conversation and with me safely participating without a significant risk of seizure to myself.

The sound quality is also better !!

I am more than to explain this is greater depth on a 1:1 basis.

I know that some might feel this is silly and I understand that. As I have previously said, I am in a group of its thought of 4 in every 100,000 who have this type of seizure, so I really would not expect people to have come across it before other than by chance.

When I start to enter the pre-ictal phase my motivation changes rapidly and my entire attention is on interrupting the seizure process to prevent myself from entering the ictal phase. This can come across as being rude, off, ratty but it is a time critical focus I have to apply to prevent the full ictal phase taking hold.

Happy for this to be shared, it holds no embarrassment for me and I have always been very open with all.

Many thanks.

David

A little bit of light relief whilst you are here.

True story.

That “too much custard” moment.

Forgive my sense of humour and I hope that this does not offend anyone. This is not my intent.

At the start of my journey, I was admitted to hospital. A few days into my stay, no-one knew what was causing me to have seizures. Every now and then, junior doctors would come and have a look at me, especially when I was having a seizure. There was much interest and an ever-greater feeling of perplexity as they walked away not knowing what to do. Even during the night.

One lunchtime I was just finishing my apple crumble and custard and I felt a seizure sequence beginning and I pressed the nurse call button.

At that time, my physical seizures were very physical and required me to be contained by at least two people, lest I left the bed and ended up on the floor. Guard rails are not that high on hospital beds.

I experienced the seizure sequence.

Afterwards when my senses returned, I was thinking about things, and I said to the nurses playfully: ‘too much custard’ and smiled.

This confirmed to all that I had lost the plot.

In the absence of any diagnosis, the nurses continued to kindly push me around the ward in a wheelchair and from time to time, to the outside world for some fresh air. Afraid to let me walk in case something untoward would happen.

Custard is clearly a dangerous foodstuff lurking with dark intent.

Once I had been a good boy and had been captured on video and EEG having a seizure sequence, my friendly neurologist came to see me to discuss his thoughts.

He said drily to me ‘so, too much custard I hear’. We both smiled at each ruefully, as if to say, ‘shall we call this condition, too much custard then ?’

In the absence of any understanding, the word on the ward and amongst the medical staff had become ‘it’s all about custard, you know, I saw it with my own two eyes.’

We both knew considerably more than that.

In the weeks following, the very same neurologist invited me to give a short talk to some of the aspiring junior doctors and future neurologists as to what ‘a functional seizure is’ from the patient’s perspective, and what were my individual experiences.

They had a 90-minute introduction on the topic. I left with them a key message

a) there is more to custard than meets the eye, and it comes in many flavours.

I offered them the analogy of ants to read and further expanded upon a potential root cause of my seizure’s. Several months of severe ear infections and mastoiditis.

To move the conversation forward in a light-hearted way, I suggested that the effect of eating custard had not left me with a lifelong psychological trauma which would lead to future seizures. Nor had I previously experienced a psychological custard trauma which would manifest itself as being of a fraudulent Freudian construct.

In the custard moment, what this simply showed was that there was a direct biomarker and biological process leading to a custard seizure.

This is the release of neurotransmitters from the digestive tract to the brain casing an overflow, a perturbance to the equilibrium, timing, and latency (sticky custard effect) within the neural network at many levels.

In my case leading to a physical seizure and then an absence seizure.

Me thinks they will remember the talk on custard.

This being a metaphor for the work of neurotransmitters upon a given part of the brain which has been pre-disposed to be hypersensitive to ‘what it considers to be a threat’ and which had previously resulted in a neural network disturbance.

Multiple infections.

Remember being alive is a perpetual reaction between symbiotic proteins and authoritarian proteins.

This can contribute to a previously primed neural network entering the seizure process where the neural network timing, sequencing, and messaging moves from its normal state of equilibrium to the quantum state where conscious and subconscious try to and do coexist.

The seizure is a symptom and has become the default learnt response or course of action to take.

As an aside, I have a sweet tooth.

In the same way that apple crumble and custard metabolise to serotonin, chocolate metabolises to dopamine.

From custard to chocolate, the latter which I have used to interrupt both physical seizures and absences seizures once they are in both the pre-ictal and ictal phase.

I prefer milk chocolate.

I know of others who eat darker chocolate, after all it is a matter of taste.

If nothing else a reason to treat yourself and your brain to some chocolate.

So, if you are at home eating some apple crumble or in a coffee house having a yummy cake made with milk your probability of an absence seizure may rise as the neurotransmitters from the gut cross the blood brain barrier and join the party. Takes a few minutes. Not long.

In time though, the very same mechanism which resulted in the absence, will correct itself and normality, whatever that means, returns.

The ants do find their line again.

If you look at my ‘cat profile’, you see the times of the day I generally eat stuff which rapidly metabolises.

This also gives an insight into why low dosage SSRI medication is often given without a real explanation.

(C) David Spencer 2022.

Good afternoon all.

Hope all is well. This may be topical seeing some posts today. The data is of myself.

It is a polynomial representation of the reduction in seizure activity. Early intervention focused on reducing physical seizures and then absence seizures. Some have PM’d me about the monthly update. Putting the finishing touches to it…..Remember – there is always sunshine after the rain.

Ooerr. At T + 660 days (t=onset) I have hit the magic number of 0, null points, zip – all types of seizure for > 31 days. Truly special thanks beyond words to all of my amazing family who have been so, so supportive and understanding throughout this learning curve. At T0, no one really understood what was happening, how long the road was or even where it went. Tis early days at 0, however the longer at 0, the stronger the imprinting becomes of new neural pathways replacing the ‘dodgy ones’ which would have led to seizure activity. I’ve put a bit of extra effort into my intervention routines over the past few months to reduce the activity which had plateaued at 0.06. Cautiously optimistic – nature is a fickle creature. Quietly though, very pleased indeed with this.

In response to a comment.

Thank you. It can be done. Despite what others say or believe. Evidence is truthful and objective. As you say family support and much humour are prerequisites as well as the determination. From the Book of Meditations written by Marcus Aurelius.

Now the roller does not have the gift of following its own movement wherever it will, nor does water or fire, or anything else subject to a nature of life without reason: there are many barriers or impediments in their way. But mind and reason have the power, by their nature and at their will, to move through every obstacle.

Marcus Aurelius

In response to a question how am I doing.

Keeping well very low absences and the ones I do have I allow to happen as I retrain myself to move the absences back into the delta wave cycle of night time rem sleep. My absences are where I enter rem sleep whilst conscious so making progress putting the disorder back to where it should be happening. Slow process as I can only practice this once a month which is the current run rate of absences. Progress though.

Same process I used for the physical. I learnt how to induce the absence. Having learnt that it was a case of unpicking the sequences which were in the absence. One trick. Lie down close your eyes and imagine events happening 10ft in front of you a film or a memory. What you are doing is projecting a subconscious thought into conscious you are then in the state of absence of not being there in the projection but an observer but you can learn how to influence and control the absence. You decide and are in control of the length of time absent and gradually reduce. Its fun.

In response to a question on magnesium.

Re magnesium. I am always cautious about introducing chemicals into my body without specific purpose. I am not anti supplements I just challenge the need. I take no meds by default and only use when clinically required. Most of the drugs we ingest are made naturally and what we ingest is mans best attempt at synthesis and acts as a booster or top up. Clearly if your results from bloods show low magnesium that it is a clinical reason to discuss with your medical team. The famous or infamous balanced intake we all try to take meat veg and greens milk etc ie the basics should contain the rda of many elements. Too much of an element in the same way as too much of anything tends to have a poor outcome. Just my simple view. Hope it helps.

In response to a question.

Still here. Happy New Year.

If I have a resolution, it is to keep learning. Never too old. An end of year report on my little science project can be found at the link below. Stable, measured progress which is evidence based. Others may develop their own ways of seizure reduction using some the techniques as a starting point which I have developed since onset. Content.

Monthly Updates