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Today is 30 years since Miranda and I exchanged vows. She is my rock.

For this month I will be concentrating on figuring out my absence seizures. They are nuanced.

I am content with progress and the actions I am taking with my physical seizures and headaches. Read the August monthly update.

My absence seizures are difficult for me. They are the worst of the two types of seizures I have. I have purposefully left these to be the last of the three big items I wanted to try to address, as they are not easy to either distract or recover from afterwards quickly or easily.

With my physical seizures, I am very confident at sensing the different aura. I have always had around ten seconds advance warning of the physical seizure activity. I have become reasonably practiced at managing these seizures.

The absence ones are far more difficult to anticipate. I am aware that something is happening. I do sometimes, but not always get a massive headache onset. This is coupled with a noticeable increase in blood pressure. The veins on my hands stand proud. However, the absence seizure aura also puts you into a state of ‘pause’. You know it is happening but there is nothing you can do about it. It is as if the tide is coming. You can see it. You can feel it. But as Canute found out, you cannot turn it back. There is an inevitability about it. This is one type of absence which develops and happens in a few seconds.

Then there are the slow burners. Again, preceded by a headache. This is the storm brewing type. It is as if you are awaiting the storm. It develops slowly. Insidiously. This is where the name I gave to my seizures came from. It looms. Then happens with no warning.

These absences can last a few minutes to tens of minutes and leave me afterwards very slow. My use of language is impaired. I feel tired. Sometimes I have paralysis. This can affect all of my limbs.

I have written about these two types of seizures before, so I will not repeat myself.

So my goal is to better understand the nature of these absences and to figure out a better way of managing them.

I will report back at the end of the month as to my progress.

Posted on FND – Non Eplileptic Attack Disorder facebook support page.

Update on my little science project.

Not one to be undone by technology, I have updated the website from my phone whilst I had a few moments to spare in between dips in the pool.

As my school reports used to show, ‘good solid progress’. If nothing else look at the final graphic at the bottom.

I am content with my progress. The aptly named, insidious little bastard was never going to have an easy time with me.

Within this months update, I float a few concepts I am exploring. The site name has been changed to reflect the more apt description of functional seizures as I learn more.

I hope all is well with everyone and that you are all surrounding yourself with positive thoughts and people.

http://spencerdavida.com/monthly-updates/

A little long so my apologies in advance. Musings from a pleasant climate.

Some people have asked me what is this ‘thing’, this ‘word’ people go on about called neuroplasticity in relation to seizures. And what does it mean when people talk about ‘unlearning’ the learnt and learning new pathways. Sometimes people use these phrases interchangeably without giving any practical examples.

What follows below is one of my ‘clumsy’ analogies. I am not a medic, just someone who has functional seizures and who is learning to manage them more positively as every day passes.

Every day I learn more and understand my own unique experiences with greater clarity. Everyone’s experiences will be different. I make no claim as to the generality as to how my experiences and explanations reflect people’s individual experiences.

As we are complex adaptive creatures, every day is a new learning experience, and I embrace this innate strength which lies at the very core of that which we call being human and being alive. The emphasis is most definitely on being alive. It is a truism that if you are not in an experience of enjoying that fickle creature, which we call nature, then you are by definition not alive.

Imagine you are driving your car. A mechanical piece of engineering based on creating repetitive explosions and then using the power unleashed. Focusing the energy generated, or more correctly transferred as energy cannot be lost just transformed, onto a set of wheels that moves you forward. Yes, you are sitting in a bomb.

But that is not the point I wish to convey.

The first time you got into this functional energy translation machine, someone would have explained a couple of things. There is a spinning wheel which needs to be engaged via gears to harness the energy. You engage this by using a pedal called a clutch to go up and down the gears. There is another pedal which makes the spinning wheel go faster as you increase your momentum and achieve a velocity which is greater than the frictional resistance of the ground allowing you to move in the direction you choose by turning another wheel.

More likely, someone would have said. There a three pedals. A gear stick and a steering wheel. You put your feet on the pedals. One to go. One to stop and one to change gears. Use your left hand to change gears. Turn the steering wheel so that the wheels point in the direction you want to go. When you are ready depress the clutch, change into low gear and then depress the go faster pedal. When you want to stop. Depress the brake pedal. One last instruction. Avoid objects such as trees and walls and especially people. Now off you go, you have learned how to drive and it’s your bomb to fly.

After a number of lessons, of trial and error, you learn all of this, assimilate it, get a feel for how the functional aspects of the car work and you are comfortable. So comfortable in fact, that after a reasonably short period of time, you can do all of this involuntarily. It becomes second nature. An interesting phrase if you think about the word second. You can allow this to become a safe learned action and after a while you just jump in the car. Turn on the ignition, and thats all you think about. The experience, the complex set of instructions have all become a learned experience.

Now over time, someone’s says to you. There is an easier way. We have a different way of doing all of the above. Just by using two pedals and a steering wheel. An automatic. Ha ha, tremendous you say. Let’s give it a go. You jump in. You put your feet by the two pedals and immediately have a blind panic. There are two pedals not three. I only have to use one foot. Which one. You put your left arm where the gear stick is and it has three positions. Parked. Go forwards. Go backwards. That’s novel.

Anyway, as you have the confidence of being able to drive a manual car and have the learned experience. You put the lever into go forward, depress the go faster pedal and off you go. Again avoiding objects such as trees, walls and especially people.

On your journey you find you left arm forever trying to change gears but it is not required. You also find your left foot wants to do something but it is not required. You struggle as you have to unlearn the previous learned experience. After a while you master this and you say to yourself, well this is easy and a lot less hassle than driving a manual car. You are content. You unlearn the old way and learn a new way.

The functional experience and the way that you do things has now become by default the way to drive an automatic car. It used to be how to drive a manual car.

One day though, you have occasion to get back into your manual car. You climb in and settle down for the journey. This may be the result of the automatic car having a functional day off. As a thought experiment do cars have functional seizures. 

As an aside, for film buffs, the original Bladeruuner film (okay I am showing my age) was based upon a thought experiment of ‘Do Androids dream of electric sheep”. Ridley interpreted this dysfunctional alternative brilliantly, although Isaac Asimov may have railed against it, as the Laws of Robotics, as outlined in his trilogy of novels called Foundation, were clearly not followed. But I digress.

Back to my analogy.

You say to yourself, simple really, driven one of these for many years before I had an automatic. No problem after all it is just functionally the same as an automatic.

But suddenly you find that the car is stalling, you depress the wrong pedal and suddenly the car is functionally not behaving as you remember. In fact it is not doing the things it is meant to do automatically. Strange sounds are coming from the engine as you depress the accelerator pedal without the functional gear being engaged. The car wont move forward and when it does, it is jerky and not smooth. It is also doing things automatically or involuntarily which you really have no control over.

You then think to yourself, so what I need to do, is to switch off the involuntary actions which are the learned response of how to be in a functionally automatic car which ‘knows’ how to do things in the background and which sometimes does things you didn’t voluntarily initiate. 

Then having switched off this learned involuntary response, you say to yourself, I now need to really concentrate on performing the voluntary actions of driving a functionally manual car and to re learn new pathways.

After a few bumps in the road, you do so, and you have unlearned the learned and have learnt new neural pathways.

A long winded muse on the chemical powerhouse which we call our brain exhibiting neuroplasticity. Rather than complex hydrocarbons, such as petroleum, which we feed our car, we feed our brain complex carbohydrates and oxygen with the spark plug of cellular activity being based upon a missing electron of the oxygen molecule.

With thanks to my wife Miranda who inspired me to explain this analogy and who had to re-learn how to drive a manual car recently in the dark.

Short post put out on NEAD support group.

Short story. Left Gatwick to fly to Paphos. Arrived. Driven by Miranda to the house in Latchi where we are staying. No seizures. Mission accomplished whooppee. When you set your mind to it, you achieve and overcome the hurdles. Brilliant.

Just taken some photos of Jupiter and Saturn. Beautiful. We did it. Something not very likely to occur given my seizure activity since April. But we did it. All of the effort over past four months has paid off.

I have decided to rename the site and the description.

This is largely in part to use a more positive and supportive description of what my seizures are. May I also be very clear, that this renaming, reshaping is not by inference or otherwise meant to diminish the significance or to lessen the impact which a functional seizure may have on any individual. They are very real and are debilitating. Everyone who has a functional seizure will be impacted by them in their own unique way and experience. They are not a ‘walk in the park’ nor should they be dismissed as being a minor event.

They are functional seizures. These have previously been called a variety of names, more latterly, non-epileptic attack disorder, or NEAD. This explains what they are not. I and others, find it far more helpful and useful to describe what the seizures are and not what they are not.

They are functional and during the time an individual has a functional seizure, and there are many types, certain aspects of the brain and the body are not quite in step. There is a timing issue which ‘interrupts’ (sometimes ‘disrupts’) the connections between all of the elements which collectively form the physical and metaphysical aspects of the whole ‘human’.

They are non destructive in nature. That is to say the actual process of the seizure, does not cause damage to the persons biology or have the characteristics of what medical practitioners classify as ‘disease.

In that respect they are just a part of being alive and are part of our makeup. To be alive means that you are adapting, changing and responding to the environment you exist within. That is why humans as a species are so prevalent.

The term functional seizure is, some would say a ‘clumsy’ or ‘imprecise’ definition or classification. But consider this. The term functional seizure actually has depth in different dimensions. It is a spectrum. A continuum in more than one dimension.

For some, their experience of a functional seizure will be slightly annoying or irksome. A twitch here or a jerk there. For others a functional seizure will be far more severe which could be a paralysis. The spectrum is both broad in it’s nature and deep in its significance. Everyone has the ability to have a functional seizure. The only pre-requisite is to possess a rather complex and as yet, not understood organ. A brain. Every element of the complex adaptive organ which we have clumsily described as ‘our brain’ can exhibit a functional seizure.

Some would say that to live you have to experience the full gamut of being alive.

Others might say that a functional seizure is the conflict between two aspects. The conscious and sub-conscious. Both equally powerful, existing in their own state, time and dimension. A veritable symbiotic relationship where each requires the other. Just sometimes, they have a falling out. A sensory timing hiatus formed through a loss of synchronicity of timing and signaling. When the two states have entered this hiatus a process of assimilation, sensory processing and redefinition is required. There exists a temporary vacuum of stasis. A functional seizure.

Yet, this is only one dimension.

I firmly believe that almost everyone alive will have experienced a very minor form of a functional seizure. This could have been perceived as a ‘deja-vu’. It may have been perceived when transitioning from wakefulness to sleep and vice-versa. That grey, ill-defined, fuzzy, indescribable, unobservable to a third party ‘trance’ like state. It may have been that ‘white light’ in the distance when people are in the recovery room and the anesthesia is wearing off.

It is that place where consciousness and sub-consciousness are blurred and neither makes sense to the other.

Another story of well a funny thing happened to me today.

Backdrop I am determined to get on a plane for a four and half flight 3 September to my second home or rather where my second home should and will be, Cyprus around Laatchi.

But I have to retrain my brain not to either have absence seizure sequence of a full blown physical seizure either in the airport or on the plane.

So we have started to practice me being in the busy environment where there a lots of trigger events that set me off. Piped music, multiple conversations, open space yet closed space, a myriad of colours, lighting, escalators, people and the list goes on.

Essentially every known trigger so that I can start to experience a seizure sequence and then learn how I can distract the sensory overload. We went to a Tesco superstore at Brooklands where one of training Concorde lives as a exhibition piece.

The objective was for me to spend time in the place and see what unfolded. My wife’s phone needed an upgrade. We are Tesco mobile customers so we went there and up the escalators similar to ones at Gatwick. We found the mobile shop to replace her phone.

The colleague served my wife. I sat on a tall chair just observing. If you had given me a fishing rod I could have become a gnome mascot as I had an absence seizure just sitting and waiting. Too much sensory overload.

After that sequence I then had a physical seizure but starting in my right arm. The left arm knows now he is not allowed to play and the seizure manifests itself directly on my right hand side. Bit of duck quaking and brought under control. The headache appeared. So mission accomplished. One absence and one physical seizure and a new phone. Plus I got to learn about all of the trigger events I will have to distract.

Exhausting. All credit to Tesco staff who saw my medical alert bracelet and asked if I needed any assistance.

First sortie into seizure prone zone achieved. It will be better next time and we will make more trips to desensitise it for me. The things you do and this is before the fun on the plane. Well the carrier have allowed me to travel so once on the plane there is no turning back.

On absence seizures.

I have know from the outset that the type 2 seizures I have, absence ones, are the worst of the types of seizure events. I had a sequence today of two absence seizures one after another. This has just confirmed the ‘worstness’

Why.

They tend to creep up on you. I sometimes do get an aura, which is the feeling that your legs are filling up with warm water from your toes upwards. I have not yet been able to repeatedly ‘sense’ the imperceptible flow from conscious state to that surreal state which is the absence. It is really difficult. I do perceive that I am entering into an altered state but it is so gentle yet sudden, there is actually very little warning. It is not like a physical seizure where you can clearly sense and see the seizure developing. It is truly insidious. Then once you are absent, you are in this altered state and it lasts for as longs as it lasts. Once you start to return, you are slow. As if you are waking from a deep sleep, or gently being warmed up by the heat of the sun you start to move first your fingers, then more of your physical body. Yet the brain takes longer to find its place. To put into sense the context of where you are. What you are. It is as if you are waiting for the super synapses to synchronise. For the colony of ants to find the line again. It is most odd.

Then here is the worstness. The aftermath which is generally a sequence of type 1 physical seizures. They are violent. The increase in intensity as the sequence unfolds. They leave you exhausted. After the final one you are tired physically and mentally yet cannot sleep. You have to get up.

Todays two absence seizures took this experience to a new level the physical seizures were probably the worst ones I have had. In total I had nine seizures in the space of three hours, all seizure types.

Probably the worst few hours I have experienced.

Another experience to add to my interesting journey.

Previously after being discharged from hospital, I was fitted with a 24 hour ECG monitor to see if anything was awry. As a consequence, I was then invited back today to have the full seven day 24 hour monitor fitted so that some useful data can be collected. The data is about heart activity before, during and after seizures. Could be interesting.

I am now wearing an R.Test 3 monitor. Clever stuff. Small and compact. You can just go about you daily activities as you would and then remove it when you have a bath or a shower. Simple disconnection and reconnection to the pads stuck onto your skin. When I enquired about fitting new pads should the old ones become less ‘sticky’ to the skin, the Nurse kindly advised me to stick the new pad on my ribs on ‘my bra line’. Well, that was a first, and caused quite a laugh between myself and the Nurse. There is much more to this condition that would first appear !!

The Nurse explained about how the monitor works. I have to press a button before a sequence as a ‘marker’ so that the analysts can then look at the diary which I am also required to keep to compare activity against what I wrote down as happening.

So off I trotted fully armed and with bra less monitor attached.

As I am a good boy, I had my first seizure early afternoon. A physical one. Well, the monitor started to ‘miaow’ like a cat. Either my heart rate went of the scale, stopped or something else who knows.

So I now am turning into a bra less cat which makes unnatural noises when I have a physical seizure for the next seven days.

The things you learn in life. So much fun.

Looks like I will be flying then. With information sheets to hand out. Good that they not said ‘you are unable to fly with us’.

Thank you for contacting (deleted) Special Assistance.

Please note that the airport can only provide Special Assistance up until the seat of the aircraft. There is no Special Assistance provided onboard the aircraft. You will have to travel with a carer, which on your booking (deleted), you are travelling with your wife.  On the day of your flight please inform cabin crew about about your diagnosis so they are  aware of your condition. If you will need assistance with walking distance and queing at the airport , please let us know we will add this to your booking.

If you require any further assistance, please reply to this email or you can contact our special assistance team on (deleted) and we will be more than happy to assist you.

Time to start to take practical steps on flying.

Note sent to the airline. Let us see how they respond.

I am due to travel to (destination) with my wife on the above booking reference on date. I have been recently diagnosed with NEAD – non epileptic attack disorder and need to inform you that I may need assistance during the flight. I have various type of seizures, some of which I can control and need no assistance whatsoever. However, should I have a physical seizure, I will need to lie down, have a pillow to protect my head and a blanket to help contain my arms and legs as the seizures can be quite violent. These seizures last for a minute or two. I do get a warning that I am about to have a seizure, so I can make myself safe and may just have one seizure or a series of up to around four in a short period of time. I do not lose consciousness, or drop to the floor, or have difficulty breathing, or become incontinent, or need medical interventions for my disorder. Since being diagnosed, this will be my first flight and I obviously don’t know how it will affect me. I find that lots of noise can trigger seizures, so I will be wearing noise cancelling headphones throughout my time at the airport and during the flight to try and negate this from happening.
May I please ask that you advise me of what special assistance you can provide to me whilst on board. I will contact special assistance at Gatwick North for assistance at the airport prior to embarking should it be needed. I will also need similar assistance to (destination) later in the year.
I have also attached a one-page summary which may be of use as it further describes in layman’s terms a little about NEAD.