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?

Lilith July 18, 2010 at 13:32

Is this why they have started prescribing Pregabalin for depression in 80
year olds? Because they think epilepsy is a mental health issue? Pretty
alarming stuff the way these drugs are handed out. (Depression is a side
effect of Pregabalin, it also causes tremor.)

Anna
G July 18, 2010 at 08:31

This post makes worrying reading.

Coincidentally, my next post looks at the Mental Capacity Act; and when
mental capacity is found lacking – Best Interests.

In itself, I think the Mental Capacity is a good thing and defines peoples
rights with regard to decision making.

However, it is open to misinterpretation and abuse. I worry that outcomes,
at times, are based on the assessors personal belief system – which may be
flawed. The two cases you describe illustrate this; then Best Interest become
whose Best Interests?

I shall follow with interest and request that I may link to your post when
I publish mine.

Brian July 17, 2010 at 21:52

PS re change in medication: even a changed from a branded to a proprietory
form of the same medication can have adverse effects. That’s why I take my
meds with an explanatory letter from my GP when I travel.

Brian July 18, 2010 at 11:15

Oops! I meant generic instead of proprietory. Being a public-spirited
sort of chap I asked my GP if I could switch to save money (people with
epilepsy don’t have to pay for our prescriptions-such is the public’s fear
of seizures!) but he said that the practice had a policy of prescribing
branded meds for the above reason.
PS I assume Anna refers to the post
above.

Brian July 17, 2010 at 21:44

Anna,
I was diagnosed with epilepsy at uni when I was 20. I’ve beeen
prescribed all the usual anti -epilepsy drugs (those that you mention plus
Vigabitrin) over the years because after a time they stopped having the
desired effect (ie stopping seizures – the dosage can then be altered to
minimise side effects). I’ve been taking Epanutin Chrono (sodium valproate)
for several years now and touch wood I’ve not had a seizure. I was referred
for psychotherapy in my mid-twenties because epilepsy can as in my case cause
depression because of its limiting effects on one’s life despite however
positively one thinks and attempts to manage it. For me, because my managers
at work had prejudiced views on the capabilities of people with epilepsy and
so gave me easy unstimulating work that bored me to death (actually it caused
stress which triggered seizures) I found the psychiatric help useful.
One
occasion that I recall and laugh at now was after I returned to work from a
months’ sick leave after a bad series of seizures, change of medication and
depression , was the return to work interview with my line manager. I
explained the sometimes hit-and-miss process of getting the dosage right. He
wrote a meeting note for my file stating that my absence had been due to
“experimenting with drugs”. I was told to sign the note which I did so,
assuming that his howler would shout out to anyone reading my file. Nearly,
twenty years later I worked with a fundamentalist Pentecostal Christian who
believed I had been possessed by the devil when I had an absence seizure at
work. As our line manager was a strict Muslim, his request for me to be moved
was actioned immediately.
So in summary, that’s why I don’t trust
fundamentalist religious types or the vast majority of Civil Service managers.
I would strongly recommend anyone with epilepsy or their friends and family to
contact Epilepsy Action for help and assistance.

Eleanor July 17, 2010 at 16:18

At the age of thirty it was written into my medical notes that I was a
hypochondriac. I was given anti depressants which I took for a couple of days,
but with three children to care for, this was not a good idea, so I stopped
taking them.
I had Tuberculosis at the time, but no one noticed, despite
the fact that I had had it as a child and my mother died from it. I was very
ill before someone did noticed.

I also knew someone with Epilepsy and on some sort of medication. He was in
a daze most of them, but his doctor didn’t seem to be even remotely interested
in that, just so long as he didn’t have seizures.

Demetrius July 17,
2010 at 15:14

Years ago I had pyschologists dancing about with rage when I insisted on
full scale medical examinations in cases of inexplicable behaviour issues. A
surprising number were diagnosed as the more unusual forms of epilepsy.

Anna
Raccoon July 17, 2010 at 14:30

http://www.publicguardian.gov.uk/forms/opg-forms.htm

PT Barnum July 17, 2010 at 18:47

Thank you, Anna. I am grateful for that (and no, I don’t know how I
missed the stuff previously posted here either) and will fill those forms in
asap.

I have a comparable form of epilepsy (or ‘epilepsy’ indeed) to John
Smith, following a head injury, along with some frequently relabelled
psychiatric/psychological condition (PTSD or BPD or some other alphabet soup
next week) and a track record of calling mental health professionals
‘prats’. The idea of finding myself legally subject to the prats’ whims and
prejudices and my entire life handed over to bureaucrats is beyond chilling.
To think that sleep-lawn-mowing (as I have been known to do at 3 a.m.) would
have me labelled as nuts should be funny. Now it isn’t.

PT Barnum July 17, 2010 at 14:11

This has frightened me badly. I’ve long experienced the consequences of
being regarded as a ‘difficult’ patient, i.e. one who asks a lot of questions
of medical personnel, but this is on a whole other scale. Is there any means
of putting a healthy and not-diagnosed mentally ill person between me and the
effects of the Mental Incapacity Act? Judging by the cases of these two, it
really seems to be a case of ‘There but for the [current oversight of the
State] go I’.

Anna
Raccoon July 17, 2010 at 14:23

PT Barnum,
Yes, in answer to your question, there is.
I am
surprised you haven’t come across me banging on about this before – everyone
should have one. It is called a Lasting Power of Attorney, and effectively
you apoint who you want to give decision making power to in
the event of the courts deciding that you are not making the correct
decisions for yourself.
You can downlaod the forms from the Public
Guardian’s web site, and you do not need to pay anything until such time as
the document is registered in order that the person you appointed can use
it. However, it is important that the document is filled in and signed
now, before anyone suggests that you are
not in a ‘good frame of mind’. Too late to do it once that opinion has been
voiced.

Gildas July 17, 2010 at 12:37

It must be somewhat chilling to face the prospect of being dealt with by
the local mental health team. The whole culture seems Orwellian.
Gildas the
Monk

Richard
Baron July 17, 2010 at 12:14

This looks like bureaucracy impersonally and correctly following procedures
that probably do make sense much of the time, instead of individuals stopping
to think about the specific case.

I congratulate one patient for being prepared to have his real name used,
and respect the anonymity of the other. But subject to any patient’s desire
for privacy, might it help to name the doctors, nurses and officials involved,
and the hospitals or other institutions in which they work? That might remind
them that they are individuals who are personally responsible for what they
do, and that being a good cog in the machine is not good enough.