Surprisingly perhaps despite this early work on SUDEP, the subject of epilepsy deaths was neglected for most of the rest of the century. Research that was done on the subject was ignored and instead a `myth' became firmly established in medical texts that epilepsy itself was not fatal.

An example of this appears in a key text of the period by Dr S. Livingston, Living with Epileptic Seizures, 1963 where, having reviewed the literature, he summarises the position as follows :

"As far as longevity is concerned, the patient should definitely understand that epilepsy per se rarely causes death and that there is no reason why an epileptic should not live as long as he would if he did not have epilepsy."

Some emphasis is placed on a study of 77 death certificates by Schwade and Otto and reported in 1954 which concluded :

"The study and analysis made here support the thesis that the epileptic, under adequate medical control with patient and critical guidance and understanding of the problem, is substantially a mortality risk no greater than the average normal person."(my underlining)

A crucial part of the passage is underlined because the conclusion is of course consistent with the view that if deaths are seizure related then appropriate management of seizures could prevent deaths.

A notable exception of the period was Rodin's textbook, The Prognosis of Patients with Epilepsy 1968.

"It appears to be quite obvious that the life expectancy of the epileptic individual does not reach that of the average person. It is also quite impressive that the figures have not shown a dramatic improvement during the past five decades. Although death from a seizure is relatively rare, it does occur on occasion and is not preventable under all the circumstances at the present time. However, it should be emphasized that in view of the variability of life expectancy, general statements covering all epileptics are likely to be an oversimplification."

Dr Lina Nashef offers an explanation as to why SUDEP was forgotten

"..Following two world wars, the subject was addressed again, but the setting had altered and new writers did not pick up where others had left off. Effective modern anti epileptic drugs meant that physicians felt both optimistic and omnipotent. Patients with epilepsy had moved from asylums into the community and there was much less opportunity for observation. Risks from epilepsy were minimized then denied; that seizures could not be fatal became 'common knowledge' despite evidence to the contrary."(L. Nashef, Sudden Unexpected Death in Epilepsy, MD, Thesis (1995).

Between 1970 and the present there has been a steadily increasing, but relatively isolated scientific interest within the research community in the subject of epilepsy related deaths and most especially SUDEP.

"There should be an increased awareness that SUD in epileptic patients is probably not an extremely uncommon complication and that as more is known about its substrates, and mechanisms, that education of the patients and their physicians regarding preventive measures, including careful attention to medication may decrease or eliminate this catastrophic complication of epilepsy."(G.Jay and J.E.Leestma, Acta Neurologica Scandinavica Suppl.82, vol.63 (1981)

Despite this research base, most medical textbooks over this period gain tended to ignore the subject or have made assumptions concerning the lack of risk without reference to the full scientific literature.

epilepsybereaved@dial.pipex.com
Written for Epilepsy Bereaved by Fenn-Smith Solutions
© Epilepsy Bereaved 2000