In response to a question about reducing seizures posed on the FND Action – Non epileptic attack disorder support page.
My own experience is that I have been able to bring the number down. It’s taken me three months with a lot of focus on it and I have learnt to recognize some of the many different triggers and auras then take distractive actions dependent upon which one/type. Early days for me but anything above 5 a day and I am having a bad day. I tend to peak around 7-8 on bad days and the bad days come in two or three days at a time. I keep charts and a log available at spencerdavida.com. I focus on neuroplasticity as they way I learn to unlearn and relearn new pathways with more beneficial outcomes. Still learning and a way to go. Everyone is unique and different so I make no bold claims as to the generality of what I am doing. Keep going and whatever works for you is the path to follow.
I focus on converting the physical/absence seizures to distracted seizures. The total of 7-8 a day is the total of all seizures and the number of distracted ones over time increases in % terms. I am delighted with a distracted seizure as all it leaves me with is a bad headache. That’s on the work plan as to how to deal with that but crucially I am progressively reducing physical seizures so that all they become is an aura, a distraction technique and a headache with no need to lie down.
Well, I need for no futher proof, as I have experienced it first hand, however as with all proofs you have to test them, to see if they break under different conditions by applying external factors. If you will, a ‘stress test’ of the concept.
So here is a real life example which happened to me and which was observed by others. Where was I and what was I doing. I was at a family gathering with about so many people. All I am allowed to say on this point, is that the number was within the current guidelines for gatherings. It was a hot day. People had finished eating and conversations were starting. The emphasis for the purposes of this short note is ‘multiple conversations’.
A known trigger for me. I find it difficult to selectively process a conversation when there are many going on around me. It is if I am a radio receiver and all channels are open. The noise is just overwhelming.
I sensed the aura. I have learnt that this aura, which starts as a general tingly feeling in my lower left leg. It is not as intense as pins and needles but similar but with less amplitude. I then can sense a strangeness on the largest organ of the human body. My skin. It does not tingle. It does not feel as if ants are crawling inside or on top of the surface. It is rather a gentle tingle. A heightened awareness and sensitivity. Maybe it is all of the small capillaries filling with blood (similar to when you pinch you nail and it blanches, and as you remove the pressure the nail becomes pink). I digress.
The aura ‘developed’ into a tremor in my left arm. Ah ha. My friend has arrived at the party. But wait. I have learnt how to entertain the visitor. I allow the tremor to develop until it is very shaky. I then with the help of my wife start the duck quacking technique. Yet, I have failed in one aspect. I have not removed all other sensory distractions. Namely the multiple conversations which are still happening. Then to remind me that this must be done. My right arm joins in. I now have two manifestations. A very shaky left arm and an increasingly shaking right arm. Am I about to lose control and require the warm comfort of a safe place. A bed to lie upon. A blanket to contain my thrashings as a seizure unfolds. A pillow for my head.
No. I change the environment.
I move indoors to a quiet place. No other sensory distractions. I can focus on the task at hand. Forgive the pun. With the help of my son, I start the quacking process again. This time I can gain synchronicity in my left arm. The tremor stops. The tremor moves. My right arm starts to violently shake. I start the quacking process. I gain synchronicity. The tremor stops.
The post seizure headache arrives and I am happy as I know it is over. The headache is sharp but transitory and passes soon. Life carries on.
95 days after my first seizure event, and after a mere 285 seizures, I was able to demonstrate in public ‘moving the seizure’ and bringing an involuntary action under voluntary control. A huge step for me. I have been practicing this for weeks now, and whilst it is early days, it is evidence of new neural pathways being formed. Even more importantly, it is the first step to making this the ‘default’ learned response. I do not want to overstate the extent of this small achievement as one swallow does not make a summer.
So to some detail. What do I do. Well I have to detect an aura. Further, the type of aura has to be the one which I have learnt to recognise as being the precursor to a physical seizure. I then have to wait for the seizure to ‘start’ in my lower left leg and the first repetitive tremors in my left arm. At this point, here comes the simplicity. I mirror someone who is making a ‘duck quacking’ sign with their forefinger and thumb. I have to be sat opposite them. I focus on the simple opening and closing of the other persons finger and thumb. I ‘allow’ the tremor to develop until it is quite ‘shaky’. Then I put all of my concentration into forming the same shape with my left hand and try to ‘match’ the opening and closing of the others persons finger and thumb. This will take a minute or so for me to ‘convert’ my tremor into being able to slowly close my own finger and thumb. With more concentration and with no other sensory distractions, I gradually start to synchronize with the other persons movements. The time to do this has shown to be variable over recent weeks, as I have practiced it. It just takes as long as it takes. Then, once in synchronisation, the tremor stops. As if a switch had been turned off. I can then easily and voluntarily mimic the other persons movements with little effort. This has turned an involuntary action into a voluntary action. I am in control.
Now for the party trick. The seizure moves. My right arm develops the tremor. To date, 99% of seizure activity has started in the left hand side of my body. It is if the brain is saying, hang on a moment, I used to be able to do this involuntarily on the left hand side, I am not allowed to do this anymore, so where can I do it now. I know, lets try the right hand side of the body. However, as this is a relatively ‘new’ involuntary action, I can bring this involuntary action under voluntary control a lot easier by using the same techniques as above. The involuntary action in my right arm has not turned from a learned response to a conditioned or auto reflexive response. In relative terms of time, the right arm quickly synchronises with the other persons. I can then mimic the rythmic movement. The tremor stops. The involuntary action has been turned into a voluntary action. I am in control.
Now for the really interesting bit. I get a post seizure headache. Life carries on. I have just cut out the middle man of a physical seizure.
As I mention, it is early days and this only brings seizure events of a specific type under control, but as a start, I am content with progress. I did mention to my neuro team what I was trying to achieve with the above when I met with them over a week ago. What I now need to do, is to be able to do this small step above repetitively and consistently. After this, I have then to figure out how to extend this to the rest of my body and for seizures which are of a different type. Once I have refined this process, this leaves the absence seizures but I will take things progressively and with caution. I have yet to figure out a way of bringing those under control but the more I learn the more I challenge myself to ‘unlearn’ the ‘learnt’ and ‘learn’ new neural pathways.
The first ones which appeared are the post physical seizure ones. In a paradoxical way I like these. Why. Well, this is how I know a seizure sequence is over. They come as a ‘flooding’ experience and are transitory in nature and last for a few minutes up to around ten minutes. No pain relief is required and I can live with these. I take these as a positive sign.
The other ones are more problematic. I haven’t fully understood what is going on but they have the following characteristics. They start and can last for hours. They are not localised. The pain is not behind my eyes or limited to one area. It is a general headache and they are severe. They are really quite debilitating. What I have noticed is that these headaches are persistent and through observation and records, I can see that they always end up with me having a type 2 sequence. They remain after I have had a type 2 sequence and I can have multiple type 2 sequences. This series of events does not resolve the headache. What is appearing in the data is that a type 2 sequence, and there may be multiple type 2 sequences, are always followed by a type 1 sequence. It is only after the type 1 seizure sequence that the headache ‘clears’. It is replaced by the transitory post seizure headache as above. I describe this type 2, type 1 and headache experience with the following analogy. Imagine a very heavy weather system is forming. You can feel the ‘heaviness’ of the air. In reality, you are sensing the change in barometric pressure. Clever old things we are. Birds have compasses, we have pressure gauges. The storm gets nearer, the dark clouds appear and it looms with intent. The storm may linger. It is oppressive and brings foreboding. Then comes the thunder and lightning and once passed there is always sunshine after the rain.
In this analogy, ‘normality’ for me is only returned once I have had a type 1 seizure sequence ‘to clear the air’.
Now just to add yet another dimension. There is a third type of headache. Akin in severity to those which precede a type 2 sequence. They have different characteristics though. They have a very short onset period. Literally seconds. Along with the headache, I have a ‘plussing’ feeling in both legs. This is where you can feel both legs become warm as if being filled with warm fluid from the feet upwards. You can then feel, an intense ‘rushing’ of blood in your head. You can feel the ‘white noise’ which the blood makes, as it swirls around the vessels in your skull. I do not feel dizzy or lightheaded. And then bang. What happens next is a pure type 2 event. I freeze. I become immobile. I cannot talk. I have disassociated. Unlike the type 1 sequence or the more gentle type 2 variant, which also leads to disassociation, this happens very quickly and with very little warning. I may have to reclassify the two seizure types I have identified into three, as the characteristics have subtle differences. More correctly though, I think it would me more accurate of me to split these into the the trigger events as the end result is the same. I will ponder on that classification.
My neurologist has suggested that we ‘aggressively’ treat the headaches. I have agreed to this so see if there is a way of managing the more intense prolonged periods of headache. One question I did pose to my neurologist, is whether or not it is better ‘just to ride out the storm’. Work in progress on this front.
My little science project continues to keep me busy. The data I have recording upon myself is now starting to show interesting things. I can now see clusters of events happening at four ‘time zones’ across the now 89 days since diagnosis. It is showing a decrease in the total number of seizures (physical and non-physical aka absence) month on month. The ratio of non physical type 2 the worst to physical type 1 is reducing from 33% in May to 26% in June. I am now also recording those type 1 where I have been able to distract. Ie stop it in their tracks. To get into this category the aura must be there. I must have tried audio distraction first with no joy. The aura must have developed to be starting the tremor sequence in leg, and left arm and then I deploy a finger thumb routine where I have to mimic the person doing the finger thumb exercise. I have to get my finger thumb sequence synced with my wifes. I can then get the tremor under control in left arm. The tremor then tracks to right arm and I do the same finger thumb exercise to bring that tremor under control. Once under control. The seizure sequence has ended. I know as I get a post seizure headache without the full body seizure. The plan is to convert all aura where this would typically lead to full seizure under control. It is early days, but the data is promising. Then I have got to figure out how to do the same for type 2 which are the worst and I don’t get much warning. Neuroplasticity in action. No meds taken. Shows promise but early days.
In relation to a thread posed on FND site as to whether or not FND is caused by trauma and in particular ear infections.
I presented in hospital with seizure activity. CT scans all normal all other tests normal. So no stroke, tia bleeds or tumour. Discharged .After second sequence a week later back via ambulance. This time kept in for five days to run through all tests MRI, ECG and video EEG. In hospital. Better to have as much looked in an acute setting rather than spend months waiting for outpatient appointments. Whilst video EEG, I was a good boy and had a seizure sequence so good data collected. From this epilepsy ruled out and I was diagnosed with NEAD. The only recent trauma I had had was severe ear infections mainly right ear where eventually the ear drum burst and the fluid flowed. Left ear was not as bad. Concern was mastoiditis which MRI had picked up on. Saw ENT consultant who spent a great deal of time making sure that mastoiditis was under control and that there had been no breach of blood brain barrier good. Now when I was first diagnosed I accepted it and my entire focus was then and is now about the future. I am really not interested in the past. In relation to cause no one knows as a fact. It is all anecdotal. My focus has been entirely on saying to myself how practically how am I going to manage this going forward. I’m going to control it not the other way around. So look to the future and concentrate on learning those coping strategies techniques to improve things. Distraction sensory grounding but fundamentally use the innate ability of the brains neuroplasticity to unlearn pathways that lead to seizures and replace those pathways with a more beneficial outcome. Neuroplasticity is the key to managing and improving life going forward. Bit rambly but hope you get my drift.
Please note that I make no assertion as to a direct causal link between ear infections and NEAD. There is anecdotal evidence of people presenting with this. I am unaware of any longitudinal studies. I remain of the view that no one knows of a factual link.
I had a tremendously meaningful and full of learnings discussion with my neuro team yesterday at St Peters. They asked me lots of questions and I gave them lots of answers probably more so than they were expecting. I started explaining about how I had accepted my condition day one and how I was approaching the future pragmatically. I then went on to explain in great depth, my types of seizures, what they are the like for me, what I experience. I described in some detail what is a non epileptic attack disorder (from my perception) using a variety of analogies, one being ants which you can read on my website in some detail. I then went on to describe how it feels for the person having a type 1 physical seizure and a type 2 non physical seizure as they are remarkably different. I gave them ratios of seizure types, seizure type distributions by hour, day and month allowing me to manage. The purpose of all this is to work out where I put myself most at risk of a higher probability of seizure activity. Then I explained about neuroplasticity and the tools I am using to distract, where I use the inate power of the brain to unlearn pathways that end badly with a seizure and learn new pathways which lead to more positive and beneficial outcomes. I could go on. I did. The lead consultant was impressed and said he had not heard a better description of NEAD this year. He asked “Are you writing a book”. I showed him my first journal which is cover to cover comprising notes, thoughts, records, data on myself which is also stored in a database to manage all of the stats. I did not disabuse him of that thought as well, the more I learn, the more I want to share in a constructive way. The website spencerdavida.com is now up and running and this is where I do intend to publish articles and maybe these will form chapters of a book. Who knows. I truly believe in serendipity and the butterfly effect so something good is going to come from this serendipitous event. More to follow. I feel good about the science collected so far and I have now have a base of data base upon a willing subject. Me. This will be about how far can you take the concept of neuroplasticity and use this to counter the effects of the brains pathways getting confused leading to seizures. Tis early days. With much promise. I still though run about 5 seizure events a days which appears at the moment to be constant. On the website there is analysis of seizure type, by week, by month, by day and broken down into types of seizure, physical, absence, and those I have learnt to distract and how I distracted them.
I know reading posts (on the non epileptic attack disorder facebook page) that some people have had difficulty with their neuro teams and diagnosis. I just wanted to pass on that my experiences at Ashford and St Peter’s Hospital have been exemplary. I have said before that I consider myself very fortunate to have been diagnosed so quickly after a short period in hospital. From the time of first seizure event to diagnosis was a mere 14 days including all tests. Today I met with the neuro team for a follow up and I cannot recommend the entire team enough. The team are also linked into St George’s and it is a great pathway if people are looking for a route to diagnosis, understanding and empathy.
‘Can a NEA be triggered by flashing/flickering lights ?’
I have had two sequences triggered by lighting. Both in hospital. The first the fluorescent lights used in wards. The second very bright light to shine into ears was being moved to look into left ear. I got full beam in left eye. In both scenarios multiple physical seizure events ensued.
I have also had a slow burning trigger which resulted in what I call type 2 and then type 1 when I was being driven in a car and the sunlight was very bright. It seems the intensity of light and the sensory overload on my visual ‘system’ or sensitivity had gone off the scale.
I remember watching Apollo 11 landing on the Moon. Shows my age. It fuelled an already science led mind to learn many things including the science method.
If you have watched the film Apollo 13, you will remember the scene where the Flight Director on hearing about the oxygen tanks explosion, which was evidently not in the plan, says the words to the team and I paraphrase,
‘Let’s view this from a position of status. What have we got that’s good’. Later he then says, ‘I want to know what it (sic) can do. Not what it was designed for or built to do’.
You can read this months update in the my update section. Let’s look at status.
Physical seizures, I call them type 1, are full blown whole body seizures. I always have an aura. Left leg feels warm. Left arm develops tremor. Sometimes it stops there. Other times the right arm may join the party. Then I seize. Seize what you may ask. Well I have a seizure. The events recorded below are where the event has developed into a full seizure. Non physical seizures, I call these type 2, are what would be best described as absence seizures. I freeze. I am actually unable to move or talk. I become locked in for a period of time. They are remarkably different to type 1. Of the two types, type 2 are the worst for me. They take a lot longer to recover from. I have more to say about the characteristics. I have also previously tried to explain my experience of these events which are unique to me and I make no statement as to generalise these. Everyone has their own experience unique to themselves and I fully respect that. You can read my comments as blog posts.
This shows my distribution of seizure activity by day.
This shows my distribution of seizure activity by month.
Now this is where it start to become interesting. This shows my distribution of seizure activity by hour.
Now to the data. Some 83 days in, there are some interesting cluster events. Type 2 nearly always leads to multiple type 1’s. I had noticed this early on but the data now confirms this. There are then three statistically showing time periods of seizure activity. If you look at the chart ignore the data of ’empty’ value on the far left. This is when I was in hospital and should be ignored as the environment was not statistically normal and should be excluded. There is a clustering around 1230 to 1400 thereabouts of seizure activity. Then 1700 to 1830 thereabouts, a different type of cluster of type 2 and type 1. Then there is the cluster at 2230 which is where I am preparing for sleep and the nature of overall brain activity is changing from active to sleep onset. This latter cluster is all type 1. Purpose. If I can identify the periods of high seizure activity I can do something about this. Distract. I can also correlate it to activity. What was I doing. What colour of socks was I wearing (aka. environmental factors) and learn what is not a good thing to do as it puts me at a higher probability of seizing. Interesting stuff.
Now that I have some base data to work with. I can now start to proactively work on and answer my questions of how I can become better at distraction, enhancing the strategies I am using to put into effect changes due to neuro plasticity (the brains innate ability to relearn new connections replacing unhelpful pathways with more useful and beneficial ones) and trying to smooth the overall variability.
It is early days and I make no claims as to magic or otherwise. I am just someone sharing my experiences of how I live and live (with the emphasis on live) within the context of this new chapter in my life.
