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Colin Grant, a radio producer and drop-out medical student, has written this book about his brother’s epilepsy and the history of epilepsy. Epilepsy affects 1 per cent of the world’s population, or about 60 million people. His brother, Christopher, had grand mal epilepsy, which was poorly controlled as a result of poor compliance with his medication. Christopher was the youngest of seven children born to his West Indian mother. The book is oddly titled (A Smell of Burning), until one learns that he is referring to the epileptic aura, which is often of a burning rubber aroma. The musician-composer George Gershwin had olfactory hallucinations during his auras.
Famous sufferers of epilepsy have included Graham Greene, Julius Caesar, Van Gogh and Dostoevsky, who recorded the detail of his 102 seizures which occurred between 1860 and 1880. Dostoevsky describes enjoying the ecstatic quality of some auras. Grant outlines how King George V of England kept his son John from public view because of his epilepsy. Grant also suggests that Caesar’s epilepsy may have clouded his judgement and altered his behaviour.
British neurologists — Gowers, Jackson et al — were to the fore in understanding the physiology of epilepsy, especially with electroencephalograms (EEG) and video telemetry. Grant spends much space on epileptic auras preceding grand mal seizures. I did not know that some people with epilepsy learn to abort a seizure following an aura.
The history of grand mal epilepsy is not pretty. Sufferers were seen as being possessed by a devil, of being spooky and afflicted. Seizures in public can be stigmatising and erroneously associated with impaired sanity. Prolonged, severe, uncontrolled seizures can lead to mental deterioration. In the past, some people with epilepsy were subjected to exorcism. Their marriage was discouraged and in the eugenic 1930-1940s, castration was proposed. Grant describes how repeated, severe convulsions in his brother Christopher “chipped away bits of him each time”.
The text is well annotated (14 pages of notes), fairly well indexed (six pages) and has a reasonable bibliography (four pages) and has clever chapter titles, eg, ‘The Visitor’ — Christopher’s euphemism for an unexpected attack; ‘Best Kept Secret’ — fear of humiliation; ‘I am me no more’ — Dostoevsky’s description of epilepsy in his book The Idiot. This is certainly not a book for parents of children newly diagnosed with epilepsy. The final chapter describes Christopher’s death from epilepsy. He died from SUDEP — sudden, unexpected death in epilepsy. Some 3-to-4 per cent of people with epilepsy have such episodes. Christopher was, however, poorly compliant with his medications, having an on/off relationship with them.
Good control is the key to most chronic conditions and Christopher certainly lacked that. Grant refers to the serendipitous discovery (by Hauptman in Germany) of the anticonvulsant properties of phenobarbitone in 1912. Phenobarb was introduced into the UK in 1920 and phenytoin in 1930. Grant has little to say about newer anticonvulsants such as sodium valproate, gabapentin, lamotrigine and topiramate, which have controlled epilepsy such that seeing a convulsion in public is now a rarity.
Grant has a distinct dislike of hospital consultants, stating that “a teaching hospital is a human freak show presided over by ringmasters with white coats and stethoscopes” (p109) and “we, the students, were the meat; the consultant was the skewer” (p4). Really? Further: “Our medical education was predicated on a tradition of ritualistic humiliation by consultants like strutting, imperious peacocks.” A bit OTT? Grant does not tell us why/when he dropped out of medicine.
Department of errors. Grant writes of his mother’s optical tic, which he thought due to calcium deficiency. He gets confused between physiognomy and phrenology. Neurosurgery certainly has a place in epilepsy management, though early neurosurgical interventions — such as frontal lobotomy — were ill-advised.
Grant tells the story of his brother’s epilepsy well. This, however, is not the story of epilepsy, but rather a personal history of epilepsy’s suffering and an acceptable history of epilepsy, if perhaps negative at times. I somewhat think that neurologists, and more especially epileptologists, may be a touch disenchanted by A Smell of Burning.