On Epilepsy

It has to be on the shortlist for medical condition that everyone knows about or, in fact, that every culture has known about. Indeed, there are Babylonian and Assyrian words that refer to ‘the falling sickness’, and most other civilizations, from Africa to italy, have described it in some way or another. (The Babylonians, more than 2000 years B.C.E, had even characterized types much as modern medicine did almost four thousand years later) Yet, for something so ubiquitous in a cultural sense, it has remained mysterious at best, or damning at worst.

Of course, I don’t want to create the impression that science is clueless about epilepsy![i] But the condition has been one of the most difficult to characterize, and certainly to manage. It has been defined, historically, by its most dramatic signs – ‘attacks’, ‘convulsions’, ‘fits’, ‘seizures’ and so on. Often, but not always, in scenarios where these terms apply, the diagnosis is obvious. But as soon as one admits to the spectrum – from a mere lapse in consciousness to a never ending shaking and writhing that could end in death, the alternative diagnoses become plentiful, and differentiating them almost impossible at times[ii]. To take but one example, periods of excessive emotion and the behavior it led to resulted in Gower coining the term ‘hysteroepilepsy’. The diagnostic net has, over time, been cast too narrow (with epileptics often being accused of ‘faking’, or of being insane) and to wide (Jackson’s idea that ‘‘a sneeze is a kind of healthy epilepsy.’’)

Unsurprisingly, as our predecessors did with most things that were ‘strange’ or ‘mysterious’ (except when it involved their religion – there is certainly nothing strange about a woman turning into a salt pillar or the rivers of a city turning to blood), epilepsy was seen as something ‘non-organic’[iii]: at best it was seen as a ‘mental disorder’, but often the explanations involved evil spirits ‘possessing’ the victim.

But whilst the disease might not have a ‘demonic’ origin, it may justly be viewed as ‘evil’: to lose control and consciousness, often without any warning or provocation, and subsequently urinating, or biting your tongue, or aspirating, and then to awake, after hours of sleepy confusion, with a headache and muscle pains – it is something worth fearing. Furthermore, beyond the immediate ‘physical’ problems, there’s the stigma, the fear others have when the ‘attack’ happens, the limitation of occupational opportunities, the loss of independence, the fear of swimming or taking a bath…

As an aside, not everyone has a negative view of having epilepsy. Dostoyevsky, for one, seemed to look forward to his attacks (or rather, the ‘auras’ that preceded them):

” For several instants I experience a happiness that is impossible in an ordinary state, and of which other people have no conception.  I feel full harmony in myself and in the whole world, and the feeling is so strong and sweet that for a few seconds of such bliss one could give up ten years of life, perhaps all of life.

I felt that heaven descended to earth and swallowed me.  I really attained god and was imbued with him.  All of you healthy people don’t even suspect  what happiness is , that happiness that we epileptics experience for a second before an attack.”

Problems with assigning retrospective neurological conditions to famous historical figures aside, Dostoyevksy’s epilepsy is interesting for many reasons, and Mocost has done a brilliant job (as always) exploring them.

Anyway, further complicating matters is the plethora of underlying conditions that could present with seizures and fall within the ‘epileptic spectrum’. These range from focal areas of pathology to widespread damage or abnormalities, from big genetic abnormalities to single gene mutations, from the occurrence of a few seizures seemingly without any cause to a malicious syndrome or increasing seizures and cognitive decline. To think and speak of ‘epilepsy’ as an entity, or a well defined ‘set’ is a bit like suggesting that ‘sport’ refers to an entity or a ‘set’ – a group with things like curling, mountain climbing, chess, formula one, sailing, Unbeatable Banzuki and football in it seems rather arbitrary unless well defined ‘subgroups exist, which does somewhat negate the usefulness of the ‘parent term’. And we certainly don’t have well defined subgroups for epilepsy as we do for sport…

The (fictional) pretty face of epilepsy

Things became easier, but not easy, with the advent of electroencephalography, and characterizing seizures by their electric ‘fingerprints’ began. But people with epilepsy can have normal EEGs between seizures, and people without epilepsy can have abnormalities. More recently, both structural and functional brain imaging have furthered our understanding, and coupled with surgical advances, provide (some) patients with the hope for a cure. Of course, curing it without having to have a part of your brain removed in the process is the ideal, and progress is being made that could result in a implantable, ‘pre-seizure’ abnormality detecting device that could subsequently prevent the predicted seizure.

So, it’s not all bad news.

References/Further Reading

Edward H Reynolds, Ernst Rodin. The clinical concept of epilepsy. Epilepsia (2009) 50 Suppl 3 p. 2-7

And, what the hell, Garden State