How
are you without your caffeine hit of a morning? How do you function
without your required eight hours of sleep? Six? Four? Maybe two?
How about if you were shaken violently awake more and more frequently as
your allocated sleep time progressed?The concept of 'sleep debt' is no longer a novel or unfamiliar one and the impact persistent sleep deprivation has on our abilities to function or even maintain any kind of bodily and mental equilibrium has been the source of many fairly definitive studies, including ongoing research being done at the University of Edinburgh's Sleep Research Unit.
According to many of these studies, sleeping for four hours a night for six nights in a row will lead directly to higher blood pressure, higher levels of cortisol (the hormone associated with stress) and a significantly weakened immune system. Under any kind of consistent pressure like that, for most people, something would give; somewhere along the line you might simply 'crash out', worse, you could continually 'stress out', leading to all sorts of other issues, or worse yet, it could lead to total 'burn out'. Something in the self regulating system that is the human body tells us to avoid sleep debt or to pay it up as soon as possible. For some people though, digging yourself out of sleep debt might not be as simple as it is for others. For some it can never be as simple as just 'get some sleep', some people will always have an unpayable sleep debt.
This was the opening theme of a speech I gave to the Quarriers Epilepsy Conference in Aberdeen late last year. I begin again from this point because, since my full diagnosis with Frontal Lobe Epilepsy almost five years ago now, I've discovered many other people with epilepsy, epilepsy field workers, charities, epileptologists (specialist epilepsy nurses), most GPs and even many neurologists, depending on their specialities, don't understand the workings or the physical and social impact of the condition. If all of those people, with their specialised knowledge don't/can't fully understand, how on earth can I expect anyone with no knowledge whatsoever, or only the restricted and often stigmatised knowledge most people have of epilepsy in general, to understand? A lifetime of nascent creativity means I'm driven to find other means of communicating, of engendering understanding, there's always another way of looking at things
There are a few things most of those people on that little list would be likely to know or understand which, if you have no direct experience of epilepsy whatsoever other than what most people assume they know either by the process of social and cultural accretion and osmosis or simply through hearsay, it's worth noting a few simple facts around it in order to perhaps dispel some common misconceptions before continuing.
Epilepsy is a genus of 'conditions', not a single homogenous one; there are more than 140 conditions and at least 40 different seizure types or patterns associated with it. All of these combined make epilepsy the most common neurological condition, yet social perception of it is sometimes mired in severely outdated prejudice and misunderstanding.
What makes a condition or a seizure 'epileptic' is its root in a neurological abnormality, which causes irregular electrical discharges in or across the surface of the brain, called an epileptiform. Where, in the physical structure of the brain, the epileptiform is located largely determines the nature of the seizure pattern and condition. These irregular electrical discharges act on the brain's major inhibitory neurotransmitter, Gamma-Amino Butryic Acid (GABA), lowering it beyond the threshold where the body prevents seizure. Most Anti-Epileptic Drugs (AEDs) try to bolster or strengthen GABA in dosages relative to the seizure pattern being experienced so that seizures can be 'controlled'.
Management of, or attempts to restrict effects on or control levels of, GABA are not exclusive to epilepsy as it is acted on in other ways by other conditions where seizures may occur, like diabetes; these are not epileptic seizures. Epilepsy is defined as having repeated and/or persistent seizures, not just one. Seizures in epilepsy are determined by a combination of MRI scans, EEG readings and VideoTelemetry sessions, as well as physical observation of the phenomena. Investigation is often prolonged and invasive in its attempts to be definitive.
According to Epilepsy Scotland's figures, and they may need some updating but are as full a picture as can be determined by any available quantitative research, 54,000 people in Scotland have epilepsy; that's one in every ninety seven people, as many people as have insulin dependent diabetes. The single most common form, Temporal Lobe Epilepsy, accounts for ninety percent of those, whilst the second most common, Frontal Lobe Epilepsy, accounts for just less than two percent, that's around 1080 people in Scotland. For any of those numbers, epilepsy can have occurred at any age and to anyone, there are a multitude of reasons for its rearing of its electrical storms in their heads, which can only be determined by looking at each individual case and sometimes not even then. There is no simple fix for many people either, with twenty to thirty percent of people with epilepsy being resistant to AEDs.
Epilepsy is frequently misdiagnosed by as much as thirty percent and a high percentage of those are people with Frontal Lobe Epilepsy. This is likely because the brain's Frontal Lobe is a complex structure which interacts with many other crucial brain functions, often resulting in non typical seizures and patterns difficult to define with traditional homogenised approaches to epilepsy diagnosis and treatment. The electrical discharges involved often disperse quickly and widely, frequently causing electrical activity in other areas of the brain, so the seizures and patterns may not even always act like those of Frontal Lobe Epilepsy.
Before returning to some more of the specifics of Frontal Lobe Epilepsy to explain the nature of my hypothecated politics of sleeping, it's worth noting some of the basics around seizures. Whilst I've noted above the amount of conditions and seizures associated with epilepsy, there are some 'simple' guidelines to understanding the types of seizures most people with either Temporal Lobe or Frontal Lobe Epilepsy experience.
Seizures can vary widely in how often they happen and how long they last. They are generally divided into two main groups, which are not wholly definitive but which can help in understanding what happens in a seizure. These two groups are called partial (sometimes called focal) seizures which most often begin and happen in one area of the brain, and generalised seizures, which affect the whole brain. Partial seizures can be further divided into two main categories, simple partials and complex partials.
Simple partials affect one area of the brain, often resulting in an unusual movement (such as a twitching of an arm or leg) or a difference in sensation or vision (like seeing strange colours). A person experiencing a simple partial knows it is happening but cannot stop it. Their consciousness and awareness are not wholly impeded. This can act as a warning or 'aura' indicating a complex partial or secondary generalised seizure may be on its way and allow the person time to get to safety.
Complex partials affect a larger area of the brain and consciousness/awareness is lost for varying amounts of time. Whilst experiencing a complex partial seizure a person will appear unresponsive even if they seem conscious. They will not be fully aware of what is happening to or around them. Commonly experienced or observed behaviour patterns during complex partials see people smacking their lips, plucking at clothes or wandering aimlessly. Due to the loss of awareness this can put the person in danger, for example wandering onto steps and falling or walking into a busy road.
A partial seizure can also spread in or across the brain and become a full generalised seizure, known as a secondary generalised seizure. These are usually 'tonic-clonic'.
Generalised seizures affect the whole brain and there will always be some loss of consciousness. There are different types of generalised seizure but the most common can be grouped under five categories.
Tonic clonic seizures, which used to be called 'grand mal', are the most well known type of seizure and what most people associate with epilepsy. A person experiencing a tonic clonic seizure will lose consciousness and if standing or sitting up will fall to the ground. The person will stiffen (the 'tonic' phase) and then spasmodically jerk (the 'clonic' phase). Breathing may become irregular and as a result the person could turn blue. They may also make grunting noises, bite their tongue or cheek, or be incontinent. After a couple of minutes the jerking usually stops and they will slowly recover. They may feel groggy, sleepy, confused and achey (limbs, head or any areas which may also have been hurt during the seizure) with rate and means of recovery varying according to the individual and the source of seizure.
Absence seizures, which used to be known as 'petit mal', are signified by a brief loss of consciousness, often only for a few seconds. A person experiencing an absence seizure will stop what they are doing, remain still and appear to stare into space. These can take place many times a day, often go unnoticed, and can appear like day dreaming. Absence seizures can have a serious effect on concentration, ability to learn, process and store information as well as general cognition.
Atonic seizures, sometimes known as 'drop attacks', involve loss of muscle tone, the body, if standing, will suddenly go limp and fall to the ground. They are generally brief and usually recovered from relatively quickly. In tonic seizures the body will stiffen and breathing become irregular with the person experiencing the seizure also falling if unsupported. Myoclonic seizures are sudden muscle spasms affecting limbs, the head and sometimes the whole body; they commonly occur upon or after waking and when sleep is needed.
Most people will have only one type of seizure but it is not uncommon to have more. All of these seizure types can happen when a person with epilepsy is awake or asleep. Some people only have sleep seizures. Others have seizures both when they are awake and when they are sleeping.
Most of the foregoing information is exactly the type of thing presented to people with epilepsy in literature they are given on diagnosis. For most people, faced with the sometimes overwhelming prospect of living with what can be a severely debilitating condition, they take from it only what is relevant to how the condition affects them. It is most commonly only those with a specialised interest in epilepsy in general who will retain all of the information and build on it to increase their understanding of generalities and specifics which might apply to their areas of research, support, advocacy or representation. So you might be forgiven for thinking, having read this far, 'Wooft dude, tmi!'.
The thing is, before I share a few more facts and figures not generally privy or presented to those given an epilepsy diagnosis, in Scotland currently, it's worth pointing out, I don't think there's much of it I could conceivably not have said.
In the past five years I've had many conversations with people about epilepsy. Conversations about what it is, how it happens, how it functions, how it affects people medically, neurologically, pschologically, neuropsychologically, socially, culturally and, crucially but generally barely acknowledged, politically. At first this was in attempts to understand what was happening to me, then to understand what was happening to everyone with epilepsy, then, to narrow it down a little, everyone with epilepsy in Scotland. Then, from what little understanding I could glean, to try and understand why Scotland at large, in its support structures and in its level of cultural understanding, was failing so many of us.
Sadly, most of those conversations, aside from those with very specific specialised fields of interest or knowledge, only served to prove people generally didn't really understand epilepsy and didn't understand people with epilepsy and how it governs their lives. I wholeheartedly believe that to understand a person with a long term health condition you must understand both the person and the condition. If the condition is so debilitating it becomes a disability, as for all people with disabilities, you need to understand the person and the disability. I've faced the whole spectrum of socially limiting reaction, from blatant wilful ignorance and prejudice to well intentioned but nevertheless misappropriated misinformation, simply because people didn't take the time to understand either the person or the condition but felt able to voice an opinion regardless of the social setting or its appropriateness to it.
The very nature of having any kind of ongoing diagnosis of epilepsy, particularly for those resistant to medication or with poor seizure control, can make it doubly disabling, physically and politically. It is difficult to find a way to raise your voice when what you say needs so much pre-understood information, when society has so many culturally embedded conceits and stigmas, some actually having roots in cultural precedents of the Middle Ages, as well as the physical stigmas of not being able to control your own body in a public space.
Add to that the notions that even being involved in a protest or march may have elements which are instant 'triggers' for some people with epilepsy and for others may significantly lower their threshold in such a way as to begin clusters of seizures for an indefinite period of time. And that's before considering the high incidence of people with epilepsy who have other complex health conditions or disabilities. Or that employers can simply cite health and safety legislation for immediate dismissal of people diagnosed with epilepsy since the possibility of seizures in many workplaces could place them or their workmates in immediate danger. You might be starting to get a picture of why there are precious few 'warriors for epilepsy' and of the uphill battle faced by charities, in just as straitened circumstances as much of the third sector if not more so, in trying to both provide support for people with epilepsy and in trying to raise awareness of epilepsy generally. For people with epilepsy and those who support them it is an incredibly person specific condition, society at large is only just beginning to understand it as a single word despite its medical, social, cultural and political ramifications.
There are even further, perhaps more immediate, pressing and specific political considerations around epilepsy in Scotland too and a few more facts and figures should at least give access to a window on them.
On January 16th, this year, Alison McInnes MSP, deputy conveyor of the Scottish Parliament's Cross Party Group on Epilepsy, raised parliamentary questions following the group's discussions of recent guidelines issued by the Joint Epilepsy Council. These guidelines recommended a minimum of 60 epileptologists, epilepsy specialist nurses (ESNs) in Scotland as adequate provision of support for the 54,000 people with epilepsy in the country. There are currently only 34, just a little over half of the recommended provision.
The national guidelines are simply not currently being met.
Particular concern was raised in the questions over reports the group were privy too which indicated, despite being in what could easily be called crisis levels of short staffing, ESNs are being forced to cover other clinical ward shifts or deal with bed management issues due to other staff shortage levels. This can only be seen as reducing further the time available for ESNs to have available to use their specialist epilepsy patient care, whilst untrained staff compromise that care or it is simply not proferred at all. In response to the questions, the government indicated responsibility for overseeing both provision and supervision lay with individual NHS trusts. Ms McInnes stated in replying, perhaps somewhat partisanly but her main point remains:
'...instead of allocating additional funding to increase numbers of these nurses or taking steps to ensure they are not forced to cover additional shifts, the Minister is instead passing the buck onto health boards. The Scottish Government is responsible for overall NHS planning and should be ensuring the right resources are available when and where they are needed.'
Add this to the fact that the only neurologists with an epilepsy speciality in Scotland are focussed around the main diagnosis centres, three in Tayside, three in Edinburgh and four in Glasgow, with many areas having no neurology department never mind a neurologist with the right speciality and a storm appears to have been brewing. That's just 10 neurologists and 34 ESNs for 54,000 people with epilepsy.
During the wait of referrals, the diagnosis, the confusion and debilitation, despite the valiant efforts of overburdened NHS staff and of the stretched support and field workers from charities, as the condition asserts itself and has its way, whilst the medication is built up to dose (which in itself can take months) and the side effects (oh the wondrous side effects! Use any search engine, none of which I am prepared to advertise proprietorially for, especially the one starting to look suspiciously like Skynet, and search for AEDs, any AEDs will do; I'll give you a little starter, I currently take fairly high doses of Carbamazepine and Zonisamide, happy reading!) bite harder, do you think they feel adequately supported? Do you think their families or loved ones feel reliably and fully informed, able to help and support in the ways the person with epilepsy most needs?
I have Frontal Lobe Epilepsy and have between 30-120 seizures every day. At the higher end of the scale around two thirds of those occur when I try to sleep. Simple partials are triggered as my brain tries to move through even the first sleep phases. As my body continues to try to sleep, simple partials cluster into complex partials, complex partials cluster into secondary generalised seizures. On bad weeks, when my seizure pattern is persistently high and clustered, I will secondary generalise 4/5 times a week (to give a little sense of perspective, around three tonic clonic seizures a month would generally be classed as having a disability). During these times, the more seizures I have, as my threshold is consistently lowered, the more I am likely to have and the more I have whilst sleeping, the more I am likely to have whilst waking. As my sleep becomes more restricted I become more prone to absence seizures, atonic seizures and myoclonic jerks. I tend not to go out when frequency is at the higher end of the scale. On balance, according to the EEG techs at Edinburgh's Western General, even on good weeks, I 'sleep' no more than two hours every single day.
As the condition progresses without respite I am developing serious cognition issues. Most weeks I have 2/3 days now where I wake having had enough seizures or clusters to render me not only unable to understand where I am and/or unable to recognise my loved ones, but also taking longer (a matter of hours some days) each time to re- find the pathways into cognition and memory. In the five years since my first diagnosis I have been treated with eight different AEDs, singularly or in combinations, overall and none have reduced my total seizure count or frequency or given me any lasting seizure control. In May I see my epileptologist (understandably with what amounts to a staffing shortage crisis ongoing, appointments are restricted to six monthly alternating between neurologist and ESN) and it is more than likely I will be recognised as fully refractory (resistant to medication) and a full review will be triggered.
Having exhausted not a few NHS resources in getting this far, and given that I would then officially be one of 20-30% of 1080 people (that's around 216-324) in Scotland with refractory Frontal Lobe Epilepsy (also given that I know my seizure frequency to be at the higher end of the comparative scale among them) with resources stretched across the board as they are, do you think anything much will change for me as a result? With those resources stretched as far as they are, are those 1080 people likely to have even their requisite 2% of 34 ESNs or 10 neurologists dedicated solely to their care? Of those who are allocated, how many are likely to be available solely to the 216-324 people, who have no other means of seizure control other than careful risk planning and management around the multitude of things which affect seizure thresholds? Whose likely to speak up for them or are they likely to speak up for themselves and demand appropriate care? Living with the condition in all of its debilitating guises, in and of itself, understandably, doesn't appear to allow much space for the ushering forth of those warriors for epilepsy justice!
In the meantime, support workers report an increasing number of people with epilepsy, particularly those without other complex additional needs, regardless of seizure frequency or control, are finding it more and more difficult to access the new benefit system. Many are having to appeal two or three times against decisions, and go through the stresses of the process and the impact on their finances as well as on their ability to care for themselves, or access appropriate care, despite having a clear disability supported by physical and documentary evidence from a neurologist with an epilepsy speciality.
At my last appointment, in November last year, my neurologist, a top European specialist in Frontal Lobe Epilepsy who devised one of the scales for diagnosis, indicated he did not think, beyond this latest round of AEDs, that I would be a likely candidate for investigative surgery since my ictal (during seizure) behaviour and EEG work indicated my root epileptiform lies too deep in the Frontal Lobe to access without being sure of not causing any other damage in the attempt. This whilst also indicating he considered me to have been experiencing less frequent but clear activity in both my temporal and occipital lobe not necessarily linked to it. I asked him, towards the end of the usual 15-20min appointment, if there were were budgetary priorities factored into that recommendation and if, given that I had discovered he also consulted at a nearby private clinic, he would make the same recommendation were I to book an appointment there?
He acknowledged there were always budgetary considerations behind any medical decision in the NHS and simply could not say what the recommendation would be in private consultancy without them unless I booked an appointment! In retort, as I left, trying to muster some bravado from a sunken heart and head, I explained quickly how I had relocated to Edinburgh from Fife, deliberately because Fife has no neurology department and I had been diagnosed in Edinburgh, so I could be registered under him, hoping to receive the care I needed, it was only then I was realising just how much that might cost! (I called the clinic the next day, in curiousity and as a matter of research, asking how soon I might be able to book an appointment with their epilepsy specialist, bearing in mind though not saying so, that I would not see him under the NHS for a year, my next alternated appointment being with an ESN. This was Friday, I was told a consultation could be booked for Monday, how would I like to pay? I couldn't possibly afford the ongoing costs of private consultation and treatment, I rely on PIP, to top up my meagre self employed earnings, to pay for my care, not least on the promise of a knowing smirk!)
With all of this considered, and put into the context of stretched resources and skills at a premium, a final note should perhaps be made here to the extent that precious little new or pioneering research is currently being done on treatment by Scotland's epilepsy specialist neurologists, certainly not at the rate it is advancing in Europe or the US. Resources are stretched to crisis points and are barely there to implement new research funded elsewhere if it is successful, far less to allocate in time or finance for home grown solutions. At the jagged edge of it all, that feels so like interest is a depleted resource too. It is a travesty also, for a condition widely acknowledged by practitioners to affect people with a diagnosis almost more on a social level for many than on an isolated clinical level, that no definitive academic research, either quantatively or qualitatively, is or has been done in the UK, which tries to asses this, far less in Scotland.
For me then, as I begin to gather testimonies for my recently instated PhD, 'A Political Ethnography of Frontal Lobe Epilepsy in Scotland', everything I transcribe as I try to gather a picture of the social and cultural context all 1080 people find themselves in and how they perceive it, everything I write, everything I've written here, as I hope my cognition holds out long enough or consistently enough for me to complete the study, and everything we do in the social enterprise I founded last year to provided advocacy services and routes into employment for people with epilepsy, all of it, for me, is the politics of sleeping.
(Thank you for reading! Part 1 has necessarily been information heavy for the reasons explained in the blog. Part 2 will be much more personal, being based partly on my own submission into the ethnography, drawing on a few lived experiences of being a person with Frontal Lobe Epilepsy in the working class communities of Scotland, as well as being, thankfully I hear you say, much shorter!)
Originally published on https://www.kiltr.com/4 months ago:
