My first seizure event was on 11 April 2021. Since then, I have been collecting data on myself.
This is a very high-level, non-technical overview of the types of seizures I have. I have avoided the use of technical terms here wherever possible which means that the descriptions are mine and may not reflect the names other people use.
I do though make some technical distinctions. That is between prodrome, aura and trigger events. For a more detailed technical explanation please read the papers in the Articles section. I must also stress that these comments refer to my seizures and I make no statement as their generality as they relate to others.
As functional seizures are a disturbance to the individual’s neural network, everyone’s perception and experience of this disturbance will be unique to them and will almost undoubtedly manifest themselves in an individually unique manner albeit with the general hallmark of a neural network disturbance. I would refer you to my Article on Ants as to what I mean by this neural network disturbance.
You will see that I refer to seizure sequences. I tend not to have an individual seizure. They do come in sequences. If there is a pattern, an absence seizure tends to be a prodrome to more generalised physical seizures. Physical seizures tend to come along like the proverbial bus. They appear in numbers not on their own.
What do I mean when I use the terms prodrome, aura and trigger.
In my language what I mean is that a prodrome is a signal I can detect days before an actual seizure sequence.
Some are subtle. Some are obvious to me, and some require me to use the data I collect on myself as a ‘predictor’ or rather an early warning system.
The subtle ones can be broadly classified as being more noticeable by others. For example, I become a little grumpy. I may be short tempered. Interestingly, as the seizure sequence becomes closer to happening, I tend to use more ‘colourful’ language. Whilst I have not plotted it, I would suggest that my use of profanities increases as the seizure becomes nearer to the event.
The obvious ones are characterised by headaches. These are ‘whole’ head, headaches not limited to a particular area. They can be there at night, when I wake up and the intensity grows prior to a seizure sequence.
Then there are the ‘predictors’. Through the collection data, for me it is evident that one marker is incredibly useful. That is the amount of time I spend in REM sleep. Statistically, the data I collect on myself shows a direct correlation between a decrease in the amount of time I spend in REM sleep to an increase in the number of physical seizures I then have in coming days.
Where I refer to an aura, this is for me a ‘sensation’, a ‘feeling’ which generally precedes the actual seizure by around 10-15 seconds. Although, for some, I have learnt to detect the aura a few minutes before and to take interventionist action. One of the visible aura, is the increase in blood pressure. You can see the veins in my left hand ‘swell’ in size. Another aura specific to my absence seizures is a very rapid onset headache.
Where I refer to a trigger event, this is broadly events which are happening in the environment around me which leads to a seizure. For me, these trigger events can be broadly classified as being of a sensory overload with the main ‘overloading’ coming from my aural sensations. Having said that, the fact that it is a sensory overload means that it the combination of sensory input I am receiving at any one time, and whilst vision and smell can contribute and do, it is the aural sensory overload which seems to be the major sensation which causes my ‘overload’. I have found that there is NO direct correlation between stressful and non-stressful environments in general terms. For example, if we consider normal life as being stress full and a holiday being stress less, the change of my environment from stress full to stress less has had no DIRECT reduction in the number of seizures. What I have found is that there is a DIRECT correlation between seizure activity and environmentally significantly increased sensory overload.
My types of seizure.
1 Full blown physical seizure of a diurnal nature.
These are as per the description. They are whole body seizures and happen during the day during full wakefulness. They tend to be in sequences of up to five in a row. Each one may only last a minute or so. They occur throughout the day and there does not appear to be a general time clustering of occurrence. They have a discrete aura. This is a ‘plussing’ sensation which can start in my lower left leg, feet upwards. Their physical manifestation starts with a tremor almost all times in my left arm. This is first noticeable by others by my hand left hand twitching. They are violent in nature. After the sequence I am slow in my thoughts. I have great difficulty with my language processing. I have real difficulty talking. I test my returning to normal by saying outload hippopotamus. They always end with a rapid onset headache which dissipates quite quickly. Being able to say hippopotamus and having the headache is the signal to me that the sequence is over. Sometimes, but not always before I have fully returned to normality, I will have a temporary full body paralysis. They leave you very tired. The day following these sequences I am tired and I find it difficult to maintain concentration. Their real impact is not at the time but the following days. They also have a cumulative effect over the course of the week in terms of tiredness and lethargy.
On the 6th December, I had a battery of audiology tests. This was after another ear infection in both ears. At the time of infection it was concluded that I may have tinnitus. During the tests, it was possible to ‘induce’ a physical seizure event under the following conditions. In one ear I had an earplug which played ‘white noise’. In the other ear I had an earplug which generated a tone pulse. At a frequency of 3 KHz I had a physical seizure. The test was repeated and reversed in terms of ears, and the same event happened. When the white noise was in my left ear, my physical seizure started in my left arm and I was able to bring it under control using the duck quacking technique. When the white noise was in my left ear, my physical seizure started in my left arm and simultaneously in my right arm and I was able to bring it under control using the duck quacking technique.
Major trigger events.
Through observation and data collection it is evident that the most significant trigger event for this type of seizure is sensory overload. Primarily aural with a visual aspect to it. Through analysis, it is evident that I lose the ability to discern and/or differentiate between multiple conversations taking place. In simple terms, my brain is open on all channels and the amount of noise and the different frequencies of noise in particular cause me to have a sequence of seizures. The most effective way I have found to manage this is by using ear cancelling headphones and by simply taking myself to a quieter place.
My progress.
I have made significant progress with these events. I have learnt to distract most of them, and I now just have the aura and post seizure headache. It is now rare that I have these during the day. I have during the past six months been able to gradually reduce the length of seizure, its severity and it impact on my daily life. Elsewhere you will see that I refer to a seizure being a piece of string and reducing it gradually by unpicking the learnt behaviour which led to a seizure and replacing it with a more beneficial outcome. It is also the case that most of my physical seizures have ‘moved’ to become nocturnal, please see below for a further description of this.
Practical management.
I have found listening to music, imagining myself being the conductor and focussing on this has had the effect of deferring the seizure. I have found that sensory grounding techniques, such as wring my hands, rocking from heel to toe and pushing down and thus my body upwards has helped defer the seizure. I have learnt that through a process I call duck quacking, I have found that I can interrupt the ictal phase of the seizure, leaving just the pre-ictal and post-ictal phase headache. Using this technique, I have also found that I can ‘move’ the seizure from my left hand side of my upper body, to the right hand side of my upper body. This process of duck quacking, I call distraction as the seizure is not deferred. Where I have been unable to either defer or distract, the final option I use is to find a safe place, lie down with a pillow to protect my head and allow for the seizure sequence to occur.
2 Absence Seizures.
3 Full blown physical seizure of a nocturnal nature.
These are as per the description except they are not truly ‘nocturnal’ as I am not fully asleep. They are whole body seizures and happen at a very specific time each day. This is during the time I am transitioning from wakefulness to sleep. They tend to be in sequences of up to five in a row. Each one may only last a minute or so. They only occur whilst I am lying down and there is a general time clustering of occurrence. They represent most of the seizures I now have. They have a discrete aura. This is a ‘plussing’ sensation which can start in my lower left and right leg, feet upwards. Their physically manifestation starts with a tremor almost all times in my left arm which builds to my right arm. This is first noticeable by others by my hand left hand and arm twitching. They are violent in nature. After the sequence I am slow in my thoughts. I have great difficulty with my language processing. I have real difficulty talking. I test my returning to normal by saying outload hippopotamus. They always end with a rapid onset headache which dissipates quite quickly. Being able to say hippopotamus and having the headache is the signal to me that the sequence is over. Sometimes, but not always before I have fully returned to normality, I will have a temporary full body paralysis. They leave you very tired. The day following these sequences I am tired and I find it difficult to maintain concentration. Their real impact is not at the time but the following days. They also have a cumulative effect over the course of the week in terms of tiredness and lethargy.
This type was the first I experienced in April and which led to attending A&E with the paramedics thinking that I may have had a stroke.
Major trigger events.
Through observation and data collection it is evident that the most significant trigger event for this type of seizure is transitioning from wakefulness to sleep. I am lying down, relaxing and starting to enter the sleep cycle.
My progress.
I continue to have these sequences. I know when they are going to occur, and I am in a safe place. To an extent, I am content with this as you say yourself, ‘Well it is time for bed, you go to the toilet, clean your teeth, lie down, have a seizure and then fall asleep’. Clearly, having a seizure is not really what you wish to happen, but in the grand scheme of things, it is happening at a specific time of day so you can manage this. My plan is over the next period, to understand the process more fully and to work towards reducing the occurrence.
Practical management.
To date, I have just allowed these to happen. Mainly because I am in that in between state of wakefullness and sleep and in a safe place. It is easier for me to just let it happen. I do though sometimes get up after the first seizure has completed to ‘break the cycle’ of repetition. I am conscious though that by not taking action, it re-affirms the neural pathway that this is ‘an okay’ response. I am aware that I must address this, but have consciously chosen to address the other seizures first.
4 Nuanced Seizure.
These are when I have a combination of absence and physical seizure. I have categorised these separately as they are fewer in occurrence but are different to the other types of seizures I have which are of a discrete nature. They occur during the day and typically happen when I am lying down. I have not had that many of this type of nuanced seizure, although I sometimes wonder if when I have an aura which tends to precede a physical seizure and which does not develop, have I had a seizure. A subtle one.
My progress.
As there have been a relatively small number of these, I have been unable to really understand these and therefore cannot comment on progress.
5 REM Behaviour Disorder.
I have a ‘pre-existing’ REM behaviour disorder. During the night I will ‘twitch’, ‘jerk’ without having a full seizure. I have not had a physical seizure during my ‘sleep’, rather they occur when I am transitioning from wakefulness to sleep. The following day, I am tired. I rely upon my wife telling me that I have had ‘a bad night’ as I am unaware that I am having these episodes.