400 years before Christ was born, Hippocrates wrote his essay on the so called ‘sacred disease’ – Epilepsy. He was trying to debunk the theory that epilepsy represented a ‘possession by the spirits’.
2410 years later, we have made little progress.
Epilepsy is not a disease, it cannot be caught, or ‘cured’. It is not a mental illness. It is not ‘evidence of madness’. It is the second most common neurological condition after Migraine – and yet migraine carries no stigma of madness. Popular folklore associates epilepsy with sub-normal intelligence – Julius Caesar, Alexander the Great, Charles Dickens, Handel, Byron, van Gogh, and Dostoyevsky would beg to differ.
One in every 20 people in the UK will experience a seizure at some point in their life – it is that common. Over 400,000 – one in 170 – go on to develop long-standing epilepsy which needs to be controlled by medication.
The current test for epilepsy is the standard Electroencephalogram (EEG) which measures brain activity; during the test the Doctor looks for abnormal waves – 50% of known epileptics won’t show any abnormalities, so the test is a very imperfect diagnosis of those who are suspected of being epileptic.
The response of the medical profession is to err on the side of caution, and advise medication. In some ways it is a reasonable response, some 1000 people die every year as a result of seizures. On the other hand, it is a reasonable assumption that they may well be medicating the many people who will only ever experience the original seizure – if indeed it was a seizure at all. The medication involved is a powerful ‘cosh’ designed to calm the ‘overexcited’ brain activity. It has profound legal, physical and mental repercussions.
If you take the medication, and remain seizure free for one year – and you will never know whether that is because the medication is effective or because you were not destined to experience another seizure – then under current legislation, you can regain your driving licence, and it will be conditional on you continuing to take the medication. If you wish to stop, you must then wait yet another year before driving again. If your job involved a PSV driving licence, you will never regain it.
By chance this week, I was contacted by two people who have both been taking the medication for many years. One is called Robert Lapsley, the other I shall call John Smith.
John Smith was diagnosed epileptic at the age of 12. He was prescribed Epanutin (phenytoin) and continued to take it for the next 43 years on repeat prescriptions. This is what the medical profession refer to as ‘managing epilepsy’. His blood should have contained between 40 and 80 mg of phenytoin. When, at age 55, he finally went into ‘crisis’, blood tests showed that his blood contained a toxic level of 210 mg of this powerful drug. He had no idea.
Now John’s ‘epilepsy’ diagnosed 43 years ago, takes the form of sleep disturbances, followed by sleepwalking, and, is in his words, an ‘absence’ of awareness lasting a few minutes. 2009 was the first time anyone had contemplated his medication, and following the blood tests it was changed to Clonazopam.
In early December he was admitted to hospital with chest pains. Initially he was sent home after rudimentary tests with some paracetemol. By the New Year he was back in hospital and this time fluid round the heart was diagnosed.
A busy A & E emergency cardiac ward is a nightmare for anyone who suffers from sleep disturbances, sure enough John rose in the night, fell on the floor, and was ‘absent’ for a few moments. When he regained lucidity, he found himself surrounded by nurses and Doctors, applying blood pressure equipment and trying to examine him.
‘Y-O-U A-R-E I-N H-O-S-P-I-T-A-L said a nurse D-O Y-O-U K-N-O-W W-H-E-R-E Y-O-U A-R-E. I just lay there hoping they would go away’
Having only just woken, he was not best pleased by this excess of attention. He told them loudly, and employing some rich language, to go away and leave him alone. It was enough to see him labelled as non-cooperative/ possibly aggressive. Risk assessment is all in nursing these days.
John returned home, and continued to sleep walk – remember his medication had been changed – and during one of his night time excursions, he fell down the stairs, broke his back in two places, and a bone in his foot. At roughly the same time he experienced a 4/5 day state of ‘delusion’ and confusion. Not surprisingly he asked his Doctor to arrange an urgent appointment to see the consultant who had changed his medication. She – at the time of his writing, six weeks later – had still declined to do so, but had referred him to the local mental health team. He is outraged. He does not think Epilepsy is a mental health issue.
Which brings us to Robert Lapsley. I was sent a link to a full description of Robert Lapsley’s troubles.
Robert Lapsley is 45 years old and has been epileptic since childhood. Until fairly recently he lived a normal life. He worked, he got married, he had a son. He was independent, self-sufficient, a useful member of the community. Two years ago his medication was changed and those closest to him began to observe adverse changes in his personality and general demeanour. The family claims that it reported these changes to Robert’s doctors and was given an assurance that the new drug was best for the patient in the long run.
Again we have a childhood diagnosis of epilepsy, a life long repeat prescription of medication, which when changed, produces a marked difference in behaviour. Mr Lapsley has also suffered falls and managed to break both his arm and a leg. He was also delusional and hallucinating.
He has also been referred to his local mental health team.
Why, you may ask? The clue lies in the Mental Incapacity Act, both in the UK and in Scotland, which makes provision for a Guardian to be appointed who has the power to decide what treatment the allegedly ‘incapacitated’ person receives. In Mr Lapsley’s case, the local council has not only rejected the consultants recommendations, but has applied to the courts to be given power to decide where he should receive treatment, as well as which treatment. Both the UK and the Scottish Act ‘allows treatment to be given to safeguard or promote the physical or mental health of an adult who is unable to consent’ – in other words, it confers considerable power to a government body to make decisions on behalf of an individual who has been assessed by a mental health team as being vulnerable or making decisions which are not in their best interests.
I find it as troubling that both of these people have had difficulties with their current medication as I do that both of them had been on repeat prescriptions for a powerful drug which can build up to toxic levels for some 40 years before hand. It may be that both would prefer to be on some other medication, or indeed, perhaps none at all.
I shall be watching both cases with interest to see what decisions are made by their respective mental health teams, and whether demanding to be treated in a way which suits them is taken to be an indication that they are not acting in their best interests, thus allowing treatment to be imposed on them.
If anybody is aware of similar case histories, would they be kind enough to make contact with me?