FEBRUARY 15, 2007 THE WORLD’S MOST COMMON SERIOUS NEUROLOGICAL DISORDER

AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED WITHIN THE TIMES 2 AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES

CONTENTS

Epilepsy – an individual condition p. 4 Finally free p. 5 Diagnosis p. 6 and young people p. 7 Epilepsy in women p. 8 Living with epilepsy p. 9 Brain imaging & epilepsy p.10 Genetics research p.12 A global perspective p.13 SUDEP p.13 Therapies & treatment options p.14 Helen Hollis – liberated by surgery p.15 Vagus nerve stimulation p.16 Coping with memory loss p.16 Government initiatives p.17 Economic burden p.17 Who looks after your epilepsy? p.18 Welcome to Epilepsy Resources & helplines p.19

Epilepsy is the most common serious disorder that affects the brain. One are likely to have adverse effects or not. The combination of sophisticat- person in 20 will have an epileptic seizure sometime in their life and 50 ed brain imaging and genetic analysis, with the traditional tools of a per 100,000 people develop epilepsy every year. In the UK, this translates detailed clinical history, video recording of and study of the to 450,000 having epilepsy at the present and 30,000 developing it every brain’s electrical rhythms with the electroencephalogram (EEG) are now year. Whilst two thirds of those who develop epilepsy have the condition allowing us to individualise therapy for each person so they have the www.mediaplanetgroup.co.uk controlled with medication, the remainder do not do so well and continue best possible chance of control of their epilepsy without side-effects to have seizures. from treatment. EPILEPSY – A TITLE FROM MEDIAPLANET Our ability to understand the causes of epilepsy has come a long way Epilepsy remains a condition that is serious, common and misunder- in the last decade as result of sophisticated imaging with magnetic reso- stood by many. With the advances in understanding and treatment that Project Manager Christine Lofberg 020 7563 8875, nance imaging (MRI), that visualises not only the structure of the brain are being made, however, the future has never been brighter for those Production Editor Ulrika Fallenius, Editors Margaret in exquisite detail, but also the function of the brain: both normal func- who develop epilepsy. A wider understanding of epilepsy by the public Thomas and Amanda Cleaver, NSE, Design Sophie tions such as language and memory, and abnormal activity that gives at large is also needed to eliminate the stigma that many still feel and Westerberg, Prepress Jez MacBean, Print News International rise to epileptic seizures. These data are vital for planning potentially this report will go a long way towards achieving that goal. For more information about supplements in the daily press, curative surgical treatment for those in whom medications are not suc- please contact Carl-Philip Thunström 020 7563 8877 cessful at controlling their epilepsy. With the mapping of the human genetic code, much current effort is Professor John Duncan Mediaplanet is the leading European publisher in going into understanding how variations in the genetic make-up of Head of the Dept of Clinical providing high quality and in-depth analysis on topical individual people causes them to be at high or low risk of developing and Experimental Epilepsy industry and market issues, in print, online and different types of epileptic seizures. Of even more importance is the Institute of Neurology UCL broadcast. understanding of how individual genetic make-up determines whether Also Medical Director of particular medications are likely to be effective or not, and whether they the National Society for Epilepsy www.mediaplanetonline.com NSE – excellence in epilepsy services

The National Society for Epilepsy patients every year. The Sir William share in the research programmes. by evil spirits. are extensive. Training is delivered (NSE) is the UK’s largest epilepsy Gowers Centre, also at Chalfont St NSE is also becoming increasingly Today, the Society’s residential to lay and professional audiences. charity, offering the broadest range Peter, admits around 400 in- involved in research into the genet- and respite care options cater for Information includes a comprehen- of services of any charity working patients every year for a detailed ics of epilepsy, unravelling the DNA adults who are most severely affect- sive range of information leaflets in this field. Services include resi- assessment of their diagnosis and code to discover the causes and ed by their epilepsy, most having covering almost every possible dential, respite and domiciliary treatment. Patients are referred implications of epilepsy with a goal learning disabilities and some also topic, from diagnosis to medication, care; medical services including through the NHS. of developing personalised treat- having physical disabilities. Care seizures types to surgery, living outpatient clinics and inpatient NSE’s research is renowned ments for each individual with the packages are funded by the refer- with epilepsy, coping with memory assessment, diagnosis and treat- throughout the world. Much of the condition. ring local authorities. Care homes loss, complementary therapies, ment; information, support and research centres on the quest to The charity has been providing are primarily located at Chalfont St pregnancy and parenting, educa- training services, including a confi- develop new and improved methods treatment and care for people with Peter in south Buckinghamshire, tion, employment. Specific infor- dential epilepsy helpline. of imaging the brain using magnet- epilepsy for more than 110 years. It but the charity is now seeking to mation packages are available for Working in collaboration with ic resonance imaging techniques. was founded to offer a safe home develop more care services in the people with learning disabilities. the National Hospital for Neurology The charity runs a powerful 3-Tesla and employment to people living community to ensure clients and all Information resources also include and Neurosurgery, part of Universi- MRI scanner, housed at it’s Chalfont with epilepsy in late Victorian Eng- involved can have a choice of care videos and DVDs. ty College Hospitals Trust, headquarters, which is used for both land, who more often than not were options. This includes an increasing The epilepsy helpline is a caller-led, NSE’s consultants run the largest clinical and research scans. Visiting being confined to asylums in the emphasis on domiciliary care and confidential helpline. It is open each epilepsy outpatient clinics in the researchers come to NSE’s Chalfont mistaken belief that their seizures supported housing. weekday from 10am to 4pm. country seeing more than 3,000 Centre from all over the globe to were a sign of lunacy or possession Information and training services 01494-601 400

4 AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES

Emergency An individual care

Most people’s seizures follow an individual pattern in how long they condition last and usually stop by themselves. Epilepsy is one of the oldest medical conditions known However, sometimes seizures do not stop by themselves or one seizure to man. Aristotle, Socrates and, later, Julius Caesar, were happens after another without the person recovering in between. This among the earliest great people who are said to have had is called and is a epilepsy. Through the ages the condition has been much medical emergency requiring urgent care and treatment. At misunderstood. diagnosis and review all people with epilepsy should be given information about what to do and who to contact in an emergency In the middle ages theories abounded dering about, fiddling with clothes situation. This should also be cov- that epilepsy is caused by evil spirits, and other objects, sometimes mum- ered in a care plan. and in the Victorian era people with bling or making other noises, chew- epilepsy were often condemned to ing or smacking their lips. The behav- asylums in the mistaken belief that iour will often seem bizarre to others, epilepsy is a mental condition. especially as the individual may react Healthy tips But epilepsy is a physical condition when another person speaks to them that can affect anyone, of any age, – but may not understand or properly ● Take anti-epileptic medication background and race. It may be hear what is being said. People expe- regularly and at the required caused by anything that affects the riencing complex partial seizures may times. brain, including a genetic defect, a often be mistaken for being drunk or ● Check with your doctor or malformation in the development of under the influence of drugs, or they pharmacist before using any other the brain, or may be the result of may find themselves being compro- medication as some treatments physical trauma or an illness such as mised by their actions during the stroke, meningitis or a tumour. In seizure. may interact with anti-epileptic some people there will be no evident Sally Gomersall, a mother of two medication and may cause cause. from Newark, experienced complex seizures to occur. People with epilepsy will have partial seizures for many years before ● Take simple safety precautions to seizures that arise when there is an having successful surgery. She said: “I reduce risk of injury during a abnormal electrical discharge of the would come out of the seizure not seizure. nerve cells in the brain. Whilst many knowing where I was or where I had ● Identify trigger factors such as people will have a single seizure at been, only to see the faces of other tiredness, stress or heavy drinking some time in their life, a person with people looking at me as if I was drunk that may bring on a seizure and epilepsy will have recurrent seizures. or just simply weird. One time I had a avoid them. Epileptic seizures can take many complex partial seizure on a station ● Keep fit and relax – many forms. Long gone are the days when platform. I fell onto the railway line, What to do if someone has a enjoyable activities help to lower people were said to either have ‘grand yet no one came forward to help me, I stress and improve seizure control. mal’ or ‘petit mal’ seizures. These guess because they were ignorant of seizure terms are now outdated, particularly what was happening.” as they do not, in any way, convey the Both simple partial and complex ● Make the environment safe, moving things away if there is risk complexity and multiplicity of the dif- partial seizures can spread across the of injury ferent . While most people brain into a secondarily generalised ● Only move the person if they are in a dangerous place and, if the Photo sensitive will imagine the stereotypical falling seizure with total loss of conscious- person is convulsing on the ground, place something soft under to the ground, jerking, shaking and ness, sometimes spreading so quickly the head to protect it epilepsy frothing at the mouth, most seizure that the partial phase may not even be ● Allow the seizure to take its natural course; do not try to restrain types do not involve . noticed. the individual and never put anything in the person’s mouth Epileptic seizures can sometimes be ● Stay calm, noting how long the seizure is lasting triggered by flashing or flickering lights or by some geometric shapes Different types of seizures Generalised seizures ● Do all you can to minimise crowding and embarrassment Seizures can be divided into two Generalised seizures involve the or patterns. Contrary to popular groups: partial seizures and gener- whole brain from the outset and often There is usually no need to call an ambulance, unless: belief, is alised seizures, although a partial happen with no warning whatsoever. ● The person has been injured during the seizure, or has trouble rare and only affects between three seizure can spread throughout the The individual will be totally uncon- breathing after the seizure and five per cent of people with brain to become a secondarily gener- scious for the duration of the seizure. epilepsy. It is more common in ● Another seizure follows on, with no recovery in between alised seizure. Such seizures include the tonic clonic ● children and young people. Partial seizures always start in just – convulsive – seizure in which the You know it is the person’s first seizure ● one hemisphere of the brain, some- muscles will tighten and relax rhyth- The seizure lasts for two minutes longer than is usual for that Common triggers for people with times involving the whole hemisphere mically making the body jerk or individual – or, if you don’t know the person, the seizure photosensitive epilepsy include: or possibly just a small area within shake; if standing, the person will fall continues for more than five minutes. one of the lobes. There are three types to the ground, their breathing may ● Watching television, playing of partial seizure. stop or become difficult, their skin computer games or looking at colour may change turning blue-grey, other computer graphics Partial seizures they may cry out at the start of the Embarrassment following the ering. Such seizures may be so brief ● Watching a faulty television or In a simple partial seizure only a seizure, may bite their tongue or seizure can be one of the worst effects that they go unnoticed. Other gener- other light source that flickers small part of the brain is affected. The cheek and may be incontinent. This is – knowing you have been completely alised seizures include tonic seizures slowly person will be totally conscious and the seizure type that used to be known out of control and unconscious yet in which the muscles suddenly stiffen, ● may recognise that they are having a as ‘grand mal’. having no knowledge of what you atonic seizures in which the muscles Strobe lights seizure. Signs of the seizure may Cosima Pole, a London-based have done during the seizure. It’s the suddenly relax, and myoclonic include twitching of a limb or part of designer, said: “I will sometimes come loss of dignity – and the indignance seizures which involve sudden jerking Tips which might help people with a limb, or the individual may just round from a tonic clonic seizure with on other people’s faces – that can be of a limb or limbs. photosensitive epilepsy include experience an unusual smell or taste, a scratched face and bruised body, a so hard to cope with. Between these seizure types are watching television or using a com- or a tingling like pins and needles. lacerated tongue and blood every- At the other end of the spectrum of many variations. Epilepsy is very puter in a well lit room, using an LCD These symptoms are sometimes where, with every single muscle generalised seizures is the absence much an individual condition. No two screen which is flicker free and cov- referred to as an . screaming at me, yet I won’t know my seizure, formerly known as ‘petit mal’. people’s experiences will be exactly ering one eye if suddenly exposed to Complex partial seizures will name, where I live or where I am. But During an the person the same and some people may expe- a flashing or flickering light. involve a greater portion of the brain by the feelings in my body and the is briefly unconscious and unrespon- rience just one seizure type while oth- and the person will be in a state of fear and horror rushing through my sive, possibly staring blankly for a ers may experience a varied mix. altered consciousness, possibly wan- blood, I know I’ve just had a seizure.” few seconds or with the eyelids flick- AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES 5

Finally seizure free The ketogenic diet The Ketogenic diet is a high fat, low carbohydrate, adequate protein diet, which has been shown to dramatically end or reduce seizures in children. It Top London lawyer and legal Eventually Mark told his university may used as an alternative to, or in conjunction with, AEDs. It can be a diffi- y friends and was reassured by their cult diet to follow but may be effective in a significant number of children with advisor to many celebrities, reaction. He said: “Despite that, I did epilepsy, though not all. Trials are on-going at Great Ormond Street Hospital. Mark Stephens has lived with go through a period of rebelling The diet was first developed in the early part of the last century. It works by against the condition. I did all the mimicking the effects of starvation. When fasting or starving, your body first epilepsy for most of his life. dangerous things I’d been told not to uses up glucose and glycogen before burning up stored body fat. In the do and went through a period of absence of glucose it produces chemicals called ketones which provide ener- refusing to take the medication.” gy. The diet alters the body’s metabolism by replacing glucose with fats as a As Mark’s professional career flour- major energy source. The broken down fat produces ketone bodies that help Throughout his childhood he experi- ished, he struggled to gain control of to alleviate seizures in some people. enced dozens of small absences, which his seizures. He experienced 20 to 30 Calories and proportions of nutrients on the diet are carefully controlled. went unnoticed, and he learned to seizures a day and tried almost every Weight gain can sometimes be a problem if the prescribed amounts are exceed- cope with. He was finally diagnosed anti-epileptic drug available. “It was ed, but in most cases this does not happen as the child’s weight is carefully y with epilepsy as a teenager following a as if the neurologists were playing a monitored and the dietary prescription altered as necessary. Close partnership dramatic tonic clonic seizure shortly game of battleships with pharmacolo- working between the child’s family or carers and the clinical team is vital. after passing his motorcycle test. gy, making guesses as to which drug Some children’s seizures Now in his 40s, Mark has been pre- might work best.” respond very quickly to the scribed most of the anti-epileptic Then five years ago a new drug diet, others can take up to drugs available. turned his life around. He is now three months and some Mark said: “I had mixed feelings seizure free, is able to drive and no will not respond at all. when my diagnosis was confirmed. I longer needs to employ coping strate- How long a child stays on suppose that there was a sense of relief gies to help keep him at the top of his the diet will depend on that there was a reason for what had profession. how much they seem to happened to me. At the same time I felt He said: “There needs to be a greater be benefiting. If the really vulnerable. I had just started at awareness of epilepsy and its com- child is seizure free for university and despite medication my plexities. I was honest with my col- two years, most doc- epilepsy wasn’t controlled. I felt I leagues and clients about how epilep- tors would suggest a would stand out from everyone else if I sy affected me and they were under- trial of slowly return- had a seizure when all I really wanted standing. Epilepsy is so common, and ing to a normal diet. to do was blend in. I found myself fac- yet there is still a stigma attached to it. For more information, ing the dilemma, who should I tell and I just hope that by telling my story it contact Matthews Friends when should I tell them.” will help raise awareness.” 0788 4054811 UCB – dedicated to epilepsy

UCB are committed to improving the lives of people with At UCB, we believe that more people need to under- epilepsy. We also support the Epilepsy Action Sapphire epilepsy. As one of the world’s leading biopharmaceutical stand what epilepsy is – and what it isn’t. We want to nurse programme, which pump primes the specialist companies, we market and develop innovative treatments spread the word that, around the world, millions of people nurse positions that are critical to creating a personalised, for epilepsy which exploit the very latest scientific discov- with epilepsy are leading happy, healthy fulfilling lives. effective treatment programme for patients. eries. That is why we are supporting educational initiatives that UCB is not just a biopharmaceutical company. We are But we are doing much more than this, the patient is al- aim to broaden both medical and public awareness and a company committed to developing holistic, innovative ways at the forefront of our research. We aren’t just devel- understanding of epilepsy. solutions to diseases of the brain and nervous system, oping the most effective treatments for epilepsy, we want We are focusing on empowerment. Through the ‘Take such as epilepsy. From our dedication to cutting-edge to make a meaningful difference to the epilepsy commu- Control’ initiative, established by Epilepsy Action, we research, to our commitment to education and training, to nity: to patients and their families, and to the doctors, support efforts to reach out to those who are disengaged our engagement with our partners in the field of epilepsy, nurses and all those who care for them. From laboratory from the health care system and to encourage them to be- we are improving the lives of patients here in the UK and r bench to bedside, the patient comes first. come more involved in the treatment process and the further abroad. It is this ‘patient-centred’ ethos that is at Epilepsy affects over 450,000 people in the UK (that’s management of their own condition. the core of our culture. one in every 131 people). But an estimated 70% of pa- We also support a number of projects from the Na- tients could be free of seizures if they had the right treat- tional Society for Epilepsy. One of these – the Epilepsy In- ment for their particular epilepsy. Over the past 12 formation Network (EIN) – helps patients to access months, we at UCB have made significant progress in de- information about epilepsy and provides volunteers who veloping a portfolio of medicines to ensure that more people offer valuable help and support to patients at hospitals can get the treatment they need for their type of epilepsy. across the UK. Our planned acquisition of Schwarz Pharma – an inno- We work with health care specialists on the best ways to vative pharmaceutical company with a pipeline of exciting help patients live with epilepsy. Our Epilepsy Masterclass new medicines which complements our own – will enable programme helps doctors and nurses who care for people us further to expand our capabilities and investment in with epilepsy to keep up to date with the latest advances. treatments for brain and nervous system diseases, and to Our Epilepsy Ambassador scheme enables people with become a global leader in the field. epilepsy to talk about their experiences to both medical But our work does not end when our products leave the and non medical audiences, thus improving understanding building. of the needs of patients, and the challenges of living with

For more information on the Take Control initiative please visit: www.takecontroluk.org

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Specific tests for epilepsy:

Electroencephalograms (EEG) An EEG is used to record the electrical activity of the brain by pick- ing up the electrical signals from the brain cells, via electrodes on the head. The electrodes only record electrical activity. When some- one has an epileptic seizure, their brain activity changes. However, unless a seizure occurs during the recording process, the test may just show as normal. An EEG test normally lasts about half an hour but if activity of the brain needs to be monitored for longer, an ambulatory EEG might be undertaken. During this type of EEG the electrodes are attached to a small recording machine worn around the waist. This allows brain activity to be recorded for hours, days or weeks.

Video telemetry This test is done in hospital over a few days. As well as having an ambulatory EEG, a video camera records what the person is doing. This test means that the electrical activity of the brain can be compared with what the person does during a seizure. This can help to work out what type of seizures the person has.

Magnetic Resonance Imaging (MRI) scans MRI produces high quality images of the brain. MRI is based on the principles of nuclear magnetic resonance (NMR) to obtain micro- scopic chemical and physical information about molecules. This information is then processed through a computer and images are produced. As science advances and stronger magnetic fields are utilised the effect on the molecules in the brain is more obvious. Diagnosis Images are clearer, more detailed and with greater contrast. They can show scarring, damage or tumours which may be the cause of Epilepsy can be very difficult to diagnose and misdiagnosis rates are high. About 50 epilepsy. per cent of newly diagnosed or suspected epileptic seizures at primary care level will, Computerised Axial Tomography (CT or CAT) scans CT scans use x rays to produce pictures of the brain. The pictures after appropriate assessment, turn out not to be epileptic in nature. Similarly, between might show an obvious physical cause for the seizures. 20 and 30 per cent of people diagnosed with chronic epilepsy at secondary care level, when later fully diagnosed at a tertiary referral centre, are found not to have epilepsy. Information

A person is diagnosed as having available within four weeks of a spe- Part of the diagnosis will also epilepsy if they have repeated cialist asking for them, says NICE. include looking at a person’s medical Information is vitally important in coming to terms with a diag- seizures that start in the brain. Any- Key to diagnosis is an eye witness history and any other medical condi- nosis of epilepsy. The NICE guidelines state that information one can have a single seizure at some account of the seizure and the circum- tions they may have. should be available so that the individual is empowered to man- point in their life but a one-off seizure stances leading up to the seizure. The specialist may arrange for tests age their condition as well as possible and be fully involved with is not epilepsy. Wherever possible any witness should to be done. These might include a their specialist or GP as a partner in all decisions about healthcare There are more than 50 different attend the specialist appointment with blood test, to rule out other possible types of epilepsy. Many only last a the patient. If this is not possible causes of the seizure such as low and lifestyle. short time whilst others are life long. attempts should be made to talk to the blood sugar or an electrocardiogram Once a diagnosis of epilepsy is established medical professionals The National Institute for Health witness or to obtain a written account. (ECG) to check the way the heart is will assess how much information should be given, or indeed how and Clinical Excellence (NICE) guide- If a number of episodes take place, working. much can be assimilated by the individual. The professional needs lines state that any person who has video footage can be very helpful. to choose carefully the right time to deliver the right information had a possible epileptic seizure should The specialist will want to know Reactions to a diagnosis be seen within two weeks by a spe- what events took place in the lead up People react in many different ways for that person. cialist practitioner with training and to the seizure, if there was a change in to a diagnosis of epilepsy. Often there Access to voluntary groups is important as they can provide addi- expertise in epilepsy. This specialist mood, if the individual experienced is a feeling of shock. Others may react tional information and support. Their details should be made should have an open mind in making any unusual sensations such as an to the loss in independence and the known to all people with epilepsy. the initial diagnosis, which may odd smell or taste, or if they had any restrictions imposed on their life such involve specialist tests (see adjacent). warning that the seizure was going to as having to surrender a driving Where required, these tests should be happen. licence. AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES 7

not to do in the event of an emer- Epilepsy affects around one in 279 children. gency and who to contact. An indi- Epilepsy in children It can develop at any age, but its incidence vidual care plan including all this information should be agreed between is highest during the first ten years of life. the parent, the teacher and appropriate Around 75 per cent of epileptic syndromes health professionals for every child and young people with epilepsy. This should also include begin in childhood. information on how to manage seizures, determining if, or at what stage, an ambulance needs to be called. Generally calling an ambulance will not be necessary. Most seizures Epilepsy is not a single condition; take their natural course and the child there are many possible causes of will recover and be able to continue epilepsy and many factors that will with school activities. Sometimes the affect how the condition progresses. child will feel drowsy and this needs A single seizure does not mean a child to be taken account of. has epilepsy and a diagnosis will only However, occasionally, seizures be made on the evidence presented by may not follow the anticipated pat- more than one seizure. Equally, while tern and a situation known as status five per cent of children will have epilepticus may develop. This is when febrile seizures in the pre-school the seizure continues or one seizure years this does not mean that they follows another. Medical intervention have, or will develop epilepsy. will be necessary. Some children may need to take Seizure types their medication during a school day. Seizures will vary from one child to The school should have a medicines another in their pattern, type and policy in place which should cover intensity. A child may experience one procedures such as managing pre- type of seizure or a combination. In scription medicines in school and on some children, as in adults, seizures trips and outings, a clear statement on will only occur at night, while in others the roles and responsibility for they may arise at any time. Seizures administering or supervising the range from ‘absences’ in which there is administration of medicines, and a a brief lapse of consciousness, through clear statement on parental responsi- to ‘tonic clonic’ seizures which are typ- bilities in respect of their child’s med- ified by convulsions. Between these ical needs. extremes are many other seizure types, If a child is having seizures, others not all of which involve total loss of in the classroom may think he is consciousness. strange or may even be afraid. Absences occur in around 10 per Knowledge and understanding are cent of children with epilepsy and key to breaking down fears and the may be undiagnosed for many years. teacher has an important role to play These brief lapses in consciousness in ‘normalising’ both the child and are often very fleeting and very fre- the situation. quent. If undiagnosed they can be mistaken for daydreaming. Epilepsy and learning disabilities Undetected absences can have a Epilepsy itself does not cause learning profound effect on a child’s ability to difficulties, though as the cause is learn. often underlying brain damage this A known trigger of seizures is pho- may result in learning difficulties. tosensitivity, although it is very rare – However there is evidence that a in only around five per cent of people follow a definite pattern of progres- Dosages are usually based on the AEDs do have to be taken regularly as significant number of children with with the condition are seizures trig- sion. Around 75 per cent of epileptic child’s body weight. The dose will prescribed. Most AEDs are available epilepsy underachieve in certain sub- gered by flashing or flickering lights. syndromes start in childhood. gradually be increased until the in various forms to make them more ject areas. Problems in reading and, to Most children with epilepsy can use If a syndrome is described as seizures are controlled or unaccept- palatable for children. Some tablets a greater extent, in spelling and arith- computers and watch television with- benign it is expected to respond well able side effects develop. If side may be chewed, sprinkled on food, metic are common. Learning capacity out any problem. to anti-epileptic medication and may effects do occur another drug may be crushed or dissolved. may be affected, as can planning ability go away as the child grows up. Some substituted or added to the first (poly- and reasoning. Some AEDs may Diagnosis syndromes are more difficult to treat therapy). Gaining good seizure con- Epilepsy and education reduce the child’s ability to concen- If there is a possibility that a child has and may also involve learning or trol can sometimes take a long time. Epilepsy can affect children in differ- trate. Disturbed sleep patterns, the epilepsy they will usually be referred behavioural problems or some physi- Keeping a diary of the child’s seizures ent ways and it is important that the effects of high levels of medication to a paediatrician for diagnosis. Often cal difficulties. can help the specialist identify any school is aware of the extra support and the likelihood of more absenteeism the paediatrician makes the diagnosis patterns that are emerging and help each child may need. Staff may need also give rise to potential for under- using an eyewitness description of the Treatment determine the best treatment plan for to take extra care in supervising some achievement. seizure and other information about The majority of children with epilepsy the child. activities to make sure the child and With all of the above taken into the child’s medical history. However, take anti-epileptic medication (AEDs) Most AEDs usually have at least others are not put at risk. consideration, it is important to to help with diagnosis a number of to control their seizures. Around three two names, a chemical or generic An individual healthcare plan can remember that children with epilepsy tests may be used. These tests are quarters of children on medication name and a trade or brand name help staff identify the necessary safety should be able to participate in all described in the box to the left, and will become seizure free. given by the manufacturer. For any- measures to support a child with school activities, extra curricular are usually painless but younger chil- All drugs have the potential to one with epilepsy it is advisable to epilepsy. This may include information activities and have as normal as pos- dren or children with learning disabil- cause side effects. Whether side take the same manufactured prepara- such as side effects of medication, what sible a childhood. ities may be given a light anaesthetic effects occur or not will vary accord- tion all the time as preparations can action to take in an emergency, what to help them relax and stay still. Nor- ing to the child and their reaction to vary slightly which could have an mal results from these tests do not rule the drug. Medication can potentially effect on seizure control or the devel- out a diagnosis of epilepsy. affect a child’s behaviour as well as opment of side effects. their cognitive, social and emotional Syndromes development. How does the medication work? If a child has been diagnosed with an Identification of the type of epilep- Different drugs work on different Keeping a diary of the child’s epileptic syndrome their seizures sy and type of seizures or syndrome is seizures so each drug is selected seizures can help the specialist identify have a particular group of character- important for correct treatment. It is according to the type of seizure a istics that occur together. Seizures normally recommended that children child is having. Although each drug “ any patterns classified within a syndrome have a with newly diagnosed epilepsy are has a slightly different way of acting, typical pattern, a typical age when treated with one drug at a time they all act on the brain to suppress they start and produce specific EEG (monotherapy) and that only one seizures. They do not treat the under- “ recordings. The syndrome may also drug alteration is made at a time. lying cause and do not ‘cure’ epilepsy. 8 AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES

Pregnancy The UK Epilepsy in women ● Women taking AEDs who are Pregnancy planning a pregnancy are recom- There are aspects of epilepsy and its treatment which are particular to mended to take higher supplement Register women only. Hormonal changes can affect the way epilepsy progresses. of folic acid (5 mg per day) as research shows this to reduce the risk of neural tube defects . Although epilepsy can occur at any effective in preventing pregnancy for allows them to be fully informed time in a person’s life, research has women taking AEDs. There is no evi- about taking their AEDs during preg- ● Women who are likely to still shown a link between hormones and dence to suggest that taking the con- nancy or the possible consequences have seizures during pregnan- seizures. This means that there can be traceptive pill affects epilepsy, of having seizures during pregnancy. cy need to continue taking times in a woman’s life when epilepsy although it may affect the efficacy of Alternatively, if a woman becomes AEDs although their specialist is more likely to start or seizures are the AED itself. pregnant she should speak to her may adjust the dose. more likely to happen, such as hor- AEDs can be divided into two epilepsy specialist as soon as possible monal changes during the menstrual groups, enzyme inducing and non to consider how best to manage her ● The dangers to the baby and the cycle and throughout pregnancy. enzyme inducing drugs. Enzyme epilepsy during pregnancy. mother herself from not taking The two female hormones, oestro- inducing drugs result in the hormones medication are usually greater than gen and progesterone, stimulate or in the oral contraceptive pill being Seizure patterns those associated with taking AEDs. slow down brain cells. This can lower broken down more quickly in the liver, Most women with epilepsy do not see or raise a person’s level of resistance making this method of contraceptive any change in their seizure frequency ● For any woman having a child to seizures (seizure threshold). When less effective. Even if the dose of the during pregnancy. For those who see there is a three per cent risk that In 1996 the UK Epilepsy and Preg- oestrogen levels are high and proges- pill is increased it will still be less reli- an increase in seizures, it is normally the baby may be born with a mal nancy Register was established. Its terone levels fall, women are more able than if enzyme inducing drugs associated with not taking AEDS as formation. Taking AEDs during aim is to identify which anti- likely to have a seizure. As changes in were not being taken. The morning prescribed, vomiting within an hour epileptic medication women are pregnancy may increase this risk, hormone levels occur during puberty, after pill dose would need to be of taking medication, sleep depriva- taking during pregnancy and to this can be a common time for epilep- increased by 50 per cent if an enzyme tion or reduced drug levels. Some and some AEDs could carry collect information on the health sy to start. inducing drug was being taken. women have better controlled greater risks than others. of their babies after birth. The pos- One in three women with epilepsy Non enzyme inducing AEDs do not seizures during pregnancy. ● The developmental abnormalities itive finding of the study so far is finds that their menstrual cycle affect any type of contraceptive that 96 per cent of pregnant associated with AEDs may affects their seizure pattern. Although method and women can use any The menopause women with epilepsy will produce they may have seizures at any time, method of contraception. Some women may develop epilepsy include cleft lip and palate and normal babies with no major con- some women find they are more fre- Contraception should always be during a phase in their life cycle such malformation of face, limbs and genital malformation. quent before and during their period discussed with your GP or epilepsy as the menopause. Others may find internal organs. The study has focused on estab- or regularly occur at another stage specialist. that their seizure control improves or lishing the risks of major congeni- ● During pregnancy the body uses during their menstrual cycle such as their seizures stop completely. tal malformation, such as spina at ovulation. Some women have Conception and pre conception Hormone Replacement Therapy up more AEDs, and the levels of bifida, cleft palette or damaged kid- seizures only during their period and counselling (HRT) does not usually cause any the drug in the blood may fall. neys, to the baby due to AEDs taken at no other time. Between 1,800 and 2,400 children are problems for women with epilepsy. Monitoring blood levels can give whilst the mother was pregnant. Polycystic Ovary Syndrome (PCOS), born every year to women who have Osteoporosis is more common in a good indication if medication The study has found the risks to which can give rise to irregular or active epilepsy. Before considering women taking AEDs. For all women needs increasing. Women affected be increased if the mother was tak- infrequent periods is thought to be starting a family there are a number going through the menopause calci- by morning sickness may need to ing more than one AED. more common in women with epilep- of important issues which should be um and vitamin D might be recom- change the time of taking their AEDs. sy and those taking the anti-epileptic considered. mended to minimise loss of calcium Further information about the UK drug sodium valproate. Ideally, women with epilepsy from the bones. ● Just as for all pregnant women, pregnancy register, and its findings should talk to the doctor responsible ultrasound scans at intervals dur telephone 0800 389 1248 or on Contraception for their epilepsy treatment before ing the pregnancy are useful to www.epilepsyandpregnancy.co.uk. There are many methods of contra- they start to plan a family, to review monitor a baby’s development. ception and some may not be as their epilepsy and treatment. 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Driving Leisure For many people one immediate The way in which we spend our Living with epilepsy effect of having a seizure is that they leisure time is important and individ- have to stop driving. There is a legal ual to us all, regardless of whether or obligation for anyone to inform the not we have epilepsy. Most leisure A diagnosis of epilepsy should not prevent someone from living a full and active life. DVLA of any medical condition activities can be made safer by adopt- which may affect their ability to ing simple safety measures to help drive. This responsibility lies with the minimise any potential risk. person themselves. Watersport activities are often DVLA regulations say you must those which people with epilepsy Epilepsy is a very individual condi- stop driving for a period of one year often have concerns about. Choices tion so choices about what activities from the date of your last seizure. If need not be restrictive – just realistic. to participate in and how to live life you have no further seizures for 12 For example, when swimming it is need to be made on an individual months you can apply to the DVLA a good idea to go with someone who basis, depending on the type and fre- for a new licence. knows about the type of seizures you quency of seizures and the level of The DVLA recommends that any- have and how to deal with them, and control with medication. one who is changing or stopping their to inform a lifeguard. What effect epilepsy has on your life medication should stop driving while Water sports such as windsurfing, depends on what your seizures are like they are doing this and for six months sailing and canoeing are popular and and how well the medication works. afterwards. need not be a problem to someone Most people carry on a normal life. Under the Disability Discrimination with epilepsy providing there is However you may feel you don’t Act motor insurance companies someone on hand to manage a seizure want to go out or do the things you should not add a premium to insurance if necessary. would normally do in case you have a just because a person has epilepsy. Scuba diving, however, is really not seizure. recommended for people with epilep- It may help to find out more about Air travel sy. People taking AEDs are more like- epilepsy, think about some simple Having epilepsy does not usually stop ly to experience ‘nitrogen narcosis’ – safety measures or find out what sup- people from being able to travel by a condition which affects rational port there is. Finding ways of doing air. However, some people find that thinking. what you would like to do and keep- their seizures are triggered by ing as mentally and physically active extreme tiredness such as jetlag, Having and living with epilepsy will as you can might help to make epilep- excitement or anxiety, all of which affect different people in different ways. sy just part of your life and not the can be caused by travelling or flying. What they all have in common is the most dominant part. ability to ensure appropriate precau- When you are diagnosed with Risk assesment tions are taken, allowing them to lead epilepsy the reaction of family and People who have seizures may have their lives to the fullest possible extent. friends can vary. They may feel con- little or no warning when they will cerned and want to offer help and happen and may be at risk of injury support. Some may not understand during or after a seizure. The risk what epilepsy is like or may become depends very much on the type and overprotective. Helping them to number of seizures. Looking at ways understand more about the condition the Disability Discrimination Act. The epilepsy could present a risk to safety. of lowering risk can help people to do FOR MORE INFORMATION ON and how it affects you may help. type of work you can do will depend The point when someone tells their the things they enjoy and be as inde- ANY ASPECT OF LIVING WITH on whether you still have seizures, current or future employers that they pendent as they would like. EPILEPSY: Employment what they are like and how often they have epilepsy is a personal choice. If There are some simple measures Nearly all jobs are open to people happen. However jobs in the armed you develop epilepsy or if your epilep- which people with epilepsy can take call the National Society for Epilepsy with epilepsy and having epilepsy services can still be restricted by law sy changes and starts to cause difficul- to make the home a safer place. These helpline on 01494-601 400 does not necessarily prevent people to people with epilepsy. Other profes- ties at work, your employer is expected include taking a shower rather than or visit from working in the job they choose. sions may have their own specific to make reasonable adjustments so bath and using a microwave rather www.epilepsynse.org.uk Epilepsy is a condition covered by health regulations if a person’s that you can continue to work. than a cooker. Epilepsy in the elderly

Epilepsy can affect anyone at any time of life. However, it is more common in people under the age of 20 or over the age of 60. One in four people who devel- ops epilepsy is over the age of 60. There are many causes of epilepsy, and some are more common in later life. As we get older our bodies start to change. For example, the blood vessels that supply blood to the brain sometimes become narrower and harder, which can affect the flow of blood to the brain. This is often the cause of seizures in later life.

There are other medical conditions may be able to avoid any future prob- quickly. Some AEDs may increase that can look like seizures, so as part lems such as finding a CV condition your risk of osteoporosis. These are of the diagnosis a specialist may look at an early stage. all points that have to be considered at other possible causes besides by the specialist when prescribing epilepsy. Treatment medication. For example, your specialist may Once a positive diagnosis of epilep- If you are taking several drugs for try and rule out causes like diabetes, sy has been made, your specialist will different conditions it may be useful to fainting, heart problems or a cere- start treatment. The choice of anti- use a chart, pill box or drug wallet to brovascular (CV) condition which epileptic drug (AED) is important, remind you which tablets to take and affects the blood vessels of the brain. particularly if you are taking drugs when. Your specialist or GP will also They may ask you to have a blood for other medical conditions. Some help by putting together a treatment test, check your heart, blood pressure drugs interact and affect how well plan which might include a way of and cholesterol levels. By doing tests other drugs work. Other AEDs may taking your AEDs at a time to suit you. for other conditions, your specialist affect memory and the ability to think 10 AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES

Functional MRI Over the last 10 years what is known as Functional MRI has been invented and put into practice. Essentially in Brain imaging & epilepsy this process, the MRI scanner is tuned into the delivery of blood into various parts of the brain. If the activity of the part of the brain is increased, the flow of blood increases and this can be picked up by the scanner. This may be used to visualise the parts of the brain involved in normal functions for example moving a right hand will cause an increase in blood flow to the middle outside part of the brain on the left-hand side. Similarly, more complicated tasks such as memory, thinking of words, looking at a fearful face as opposed to a neutral face will all result in activation of the relevant parts of the brain.

If the activity of the part of the brain is “increased, the flow of blood increases and this can be picked up by the scanner“ Thus, functional MRI can be used for seeing which part of the brain carries out functions and how the different parts of the brain interact and work with each other. We are beginning to understand, using this technique, how epilepsy arising in different parts of the brain may affect memory and Epilepsy arises in the brain as an electrical disturbance and may have many causes. side. The analogy would be that water cognitive processes. For example, in might move up and down a stick of those with epilepsy arising in the Only for the last 30 years has it been possible to take images of the brain in life and celery much more easily than it can temporal lobe on the left, trying to thereby be able to visualise the many causes of epilepsy and also their consequences. move sideways. With the visualisation remember new words, which normal- of the movement of water within these ly would activate the left temporal BY PROFESSOR JOHN DUNCAN, HEAD OF THE DEPT OF CLINICAL AND EXPERIMENTAL EPILEPSY, INSTITUTE OF nerve fibres, the nerve fibre connec- lobe, is much reduced. By recording tions within the brain can be picked the electrical brainwaves and epilep- NEUROLOGY UCL. ALSO MEDICAL DIRECTOR OF THE NATIONAL SOCIETY FOR EPILEPSY out, using the technique known as tic activity during such a functional tractography. This is giving us dramat- MRI scan, we can also now map X-ray CT scans came into clinical use amounts of data that are now pro- binding of water with large mole- ic new insights into how one part of where in the brain epileptic activity is in the mid 1970s and for the first time duced by an MRI scan. cules, particularly proteins, in the the brain is connected with other parts occurring. By combining this with showed the structure of the brain. The core of the MRI scanner is the brain. Diffusion tensor imaging visu- and how these interact with each functional MRI of normal actions and Large abnormalities such as tumours, magnet with the strength of the mag- alises the movement of water within other. For example, we have been able examining the white matter tracts we blood clots, strokes and abscesses net being measured in Tesla. The first the brain. If an area of brain is dam- to show that the connections in the can assemble a 3-dimensional map of could be demonstrated. In addition to MRI scanners had magnet strengths aged or disorganised there will com- brain between the part of the brain areas of the brain that are functioning leading to a better understanding of 0.3 Tesla. The current state-of-the- monly be more space between the that understands language and the abnormally and normally and use this about the causes of epilepsy, this also art standard for clinical MRI scanning individual nerve cells and so water is part that generates words on the left- to plan the best treatment approach. underpinned the development of is 3 Tesla. Current MRI scans show the more mobile and this can be visu- hand side of the brain is reduced in epilepsy surgery, that is surgery to structure of the brain in exquisite alised with a diffusion scan. those with epilepsy arising in this area. Spectroscopy remove the cause of the epilepsy with detail, showing the details of the grey We have also recently been able to In addition to looking at the structure the hope of stopping the occurrence matter and the white matter and the show, for the first time, the connec- of the brain, the MR scanner can be of epileptic seizures. precise folding of the brain, with the tions in the brain that appear to carry used to measure the concentration of In the subsequent years, magnetic ability to show structures and abnor- Increasingly we are the spread of epileptic activity from different brain chemicals such as glu- resonance imaging was invented in malities no more than a few millime- able to see subtle malfor- one part of the brain to another. This tamate and gamma-amino butyric Nottingham and the first reports of tres across. Increasingly we are able information is beginning to be acid (GABA). Glutamate is crucial to MRI in individuals with epilepsy to see subtle malformations of parts mations“ of parts of the extremely useful in the planning of the working of the brain, is released by appeared in 1984. It rapidly became of the brain in addition to small areas surgical treatments. In addition to pre- nerve cells and makes other nerve cells apparent that MRI provided much of scarring that commonly give rise to brain in addition to small dicting the risks of surgery, the infor- fire off. When present in excess, in the better definition and identification of epilepsy. areas of scarring that mation can be made available to the wrong area at the wrong time, an subtle abnormalities in the brain than surgeon so that an operation may be epileptic seizure may occur. In con- did X-ray CT. Over the last 20 years, Imaging methods commonly give rise to planned to minimise the risk of dam- trast, GABA (also produced by nerve MRI has become more and more There are many new ways of acquir- epilepsy age to the important connections. The cells) makes other nerve cells quieten sophisticated as a result of many ing scans that give more information analogy in day-to-day life would be down. The measurement of these vital technological advances, not only in in addition to the standard scans in that the grey matter of the brain is the chemicals in the brain using MR spec- the design of the magnets and instru- which the images are essentially “ city and towns and the connections troscopy is giving us vital new insights ments, but also in the computing based on the concentration of water The nerve fibres in the brain are between the areas of the brain are the into the chemical process for brain equipment required to programme the in different parts of the brain tissue. arranged like small tubes. Water may motorways joining up the cities and activity and how this may go wrong in scanner to take images in different For example, magnetisation transfer move along these tubes much more tractography demonstrates these conditions such as epilepsy. ways and to analyse the enormous images reveal the interaction and easily than it may move from side to motorways. 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Serial scanning by the MRI scan and give an impres- have role in the suppression It has long been questioned whether sion of the part of the brain that is of seizure activity. By using Ongoing epilepsy care epilepsy and epileptic seizures may involved in generating the seizures. a PET scan to measure the result in brain damage. By taking pre- This can be very useful in those indi- opioid receptors in the brain The National Institute for Health and Clinical Excellence (NICE) guidelines state that: cise scans at intervals and measuring viduals who are candidates for epilep- in-between and following ● Adults with epilepsy should have a review at least once a year by their GP or the sizes of different parts of the brain sy surgery when the MRI scans and seizures, it has been possible specialist. Those who continue to have seizures or side effects or need particular this can be addressed. In a large study other data have not given sufficiently to show that in the hours advice, such as women planning a pregnancy, should be referred to a specialist by that we recently carried out, we con- clear information to pin-point the following a seizure these their GP. cluded that in those who have epilep- source of the epilepsy. receptors are increased, with ● Children should be reviewed by a specialist at least once a year, or more often if sy that continues despite treatment, 1 The main use of PET is to visualise the inference that the anti- necessary. person in 3 will have loss of nerve the usage of glucose by the brain and, seizure defence mechanisms cells in the brain that result in shrink- in epilepsy practice, can be used to are being tuned-up at these People with difficult to manage epilepsy should be referred to a age that can be picked up on the MRI times. PET scans with spe- specialist centre if: scans. This information will be very cific chemicals and tracers ● Their epilepsy is not controlled with medication within two years important to evaluate whether treat- are extremely demanding ● Their epilepsy is not controlled with medication after two drugs have been tried ment designed to prevent damage to The main use of SPECT and expensive and will be ● They are experiencing, or at risk of, unacceptable side effects from medication the brain are effective. confined to the research ● Their epilepsy is associated with a psychological or psychiatric condition area rather than to regular is to image the distribu- ● There is a possible doubt over the diagnosis of the seizures or syndrome Other imaging methods clinical use, but they give Complementary to MRI scans are the “tion of blood-flow to the very important insights into The specialist service should include a multi-disciplinary team who are experienced in isotope-based techniques of Positron how the brain works and the assessment of people with complex epilepsy and have access to investigations and Emission Tomography (PET) and Sin- brain how it malfunctions in both medical and surgical treatment. Individuals with controlled epilepsy but with con- gle Photon Emission Computerised epilepsy and can give a lead cerns about specific issues such as pregnancy should also have access to this service. Tomography (SPECT). These tech- “ as to possible future direc- niques involve the injection of a identify areas where there is reduced tions of pharmacological radioactive isotope into the blood- usage of glucose that acts as a marker treatment. stream, which is then taken up by the for the area where seizures are likely brain. to be arising from. In a research con- The treatment gap The main use of SPECT is to image text, PET can also be carried out with the distribution of blood-flow to the specific chemicals labelled with Although anti-epileptic drugs have the potential to stop seizures in around 70 per cent brain. If this can be done in-between radioactive tracers that pick out spe- of people, in reality only around 52 per cent of people achieve control with these a seizure and then at the time of an cific chemical pathways in the brain. drugs due to lack of optimal services. This equates to around 82,000 people with epileptic seizure, a subtraction of For example, opioids are chemicals epilepsy having seizures when they could be seizure free. these images will show the change in produced in the brain that are the nat- blood-flow that occurs when a seizure ural analogue of drugs like morphine. It would cost around £130 million a year to improve epilepsy healthcare and reduce happens. This can then be mapped Opioids are released in the brain fol- Professor the number of people falling into this treatment gap. The payback would be a saving onto the anatomical detail provided lowing seizures and are believed to John Duncan in excess of that figure by reducing the cost of misdiagnosis, estimated to be more than £160 million, and disability living allowance. Difficult diagnosis simplified by hi-tech MRI Moving during an MRI scan can ruin the images. Fortunately there is a hi-tech solution

MRI, or Magnetic Resonance Imaging, is used pocampus of epileptic patients requires very high reso- lution images with good tissue contrast to see the inter- to help in the diagnosis of many types of neu- nal structures. It is also of immense benefit in all sorts rological disorders, including epilepsy. The of clinical settings, from imaging in restless children to scans, which take between 15 and 30 minutes, patients with Parkinson’s Disease, Alzheimer’s and other require patients to lie absolutely still. Any conditions that cause involuntary movement. movement and the resulting image may not “Studies with our clinical partners show that even if pa- tients rock their heads from side to side continuously dur- be clear enough for doctors to make an accu- ing a scan, doctors using our system still get good quality rate diagnosis. Above: Intermittent 90°-left-to-right, and up-and-down head movement without images to aid in diagnosis. It’s remarkable, saving time and (left) and with (right) PROPELLER HD money,” says Nigel Mason, Country Manager at GE The stark fact is, up to one in 10 people need re-scanning Healthcare UK. PROPELLER benefits anyone having an because motion causes blurred images, making their MRI MRI brain scan by improving the quality and resolution scans impossible to read. With MRI scanning costs at of images by allowing more data to be acquired, and re- around £360 per hour, the expense of uncontrolled move- moving many other causes of image degradation. It pres- ment soon mounts up. The prospect of an MRI brain scan ents the highest quality images possible to help with an to investigate a suspected neurological disorder can be up- effective diagnosis, making life easier for patients and doc- setting enough. In people with suspected epilepsy, an tors alike. MRI scan may be used to look for scar tissue, tumours or Professor John Duncan, Medical Director at the Na- physical damage that may be causing seizures. For a pa- tional Society for Epilepsy, says: “The use of the PRO- tient who may already be a little nervous, the prospect of PELLER method of acquiring MRI scans is a major step a re-scan if they cannot hold still is of little comfort. forward as the blurring of images that result from even For some, the answer has been sedation. However, one minute movement is taken out. This gives greater clarity of in six children does not respond adequately to the seda- sequence to dramatically freeze patient motion. images in everyone, as no one can stay completely motion- tion used during such scans, and one in 14 does not re- GE Healthcare has produced the world’s first high def- less during a scan. Further, it is now possible to get good spond at all. Adult sedation or general anaesthesia services inition magnetic resonance system. Its PROPELLER images of the brain in those who are restless and have dif- are not generally available in MRI suites. Now a techno- High Definition technology now gives doctors unprece- ficulty in keeping still.” logical breakthrough from GE Healthcare is revolution- dented image clarity even if patients move. This is critical ising the use of MRI in neurology by using a software in epilepsy research, because looking at lesions in the hip- 12 AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES

not only normal attributes, such as height, but also traits such as suscep- The role tibility to various diseases and responses to the drugs used in their treatment. Most SNPs are comparatively com- mon. Some variations in the genome, of genetics however, are rare or very rare. Such mutations may be harmful to those Two thousand years ago Hippocrates recognised that that bear them, causing rare, often serious, diseases. Familiar examples inheritance, or genetics, plays a role in epilepsy. Today are Down’s Syndrome, usually caused we know that there are many different types of epilepsy, by an extra copy of an entire part of the genome bearing several genes, and have identified over 12 different genes’ mutations known as a chromosome, and haemophilia, at least one type of which cause that run in families. Sometimes which is caused by a genetic muta- this allows us to identify the genetic change that is tion, usually inherited, in a gene that encodes a protein essential for the responsible for causing the condition, giving us insights clotting of blood. into how epilepsy occurs and how it might best be treat- These enormous strides in our knowledge of the human genome, ed. There are however also cases where people with and in our ability to examine large numbers of SNPs in large groups of epilepsy have no family history of the condition, but also people with epilepsy, have enabled turn out to have mutations in some of these same genes. Dr Sanjay Sisodiya, Consultant Neurologist, National Society for Epilepsy. study of how common genetic vari- ants both affect the risk of developing BY DR SANJAY SISODIYA more common types of epilepsy, and the responses to anti-epileptic drugs Most of these genes encode proteins ing in partnership with the Institute of genetic profiling, based on analysis of accrued by generations over millennia, in those epilepsies. Such work is that act as controllable pores in the Neurology and Duke University in the a single blood sample, may signifi- each of us has our own, unique, indi- beginning to show how genetic vari- walls of brain cells, or neurons. The USA, we are running the largest cantly improve the lives of people vidual version inherited from our par- ants might increase the risk of certain activity of these pores is usually close- epilepsy genetics project of its type in with epilepsy. In the longer term, ents, distinguished by slight differences serious adverse reactions to anti- ly coordinated and controlled and is the world to date, in more than three genetic research may direct the between individuals at several points epileptic drugs. For example, we now responsible for the firing of neurons thousand patients. Amongst other design of new treatments, and per- throughout our individual manu- know that certain patterns of SNPs and thus eventually for much of the milestones, we have identified genetic haps even begin to generate rational scripts. The manuscript is the inherited together greatly increase the activity – normal and abnormal – of variations that influence the dose of cures and preventions. “genome”. risk of developing severe allergic the brain. Mutations in the genes that certain anti-epileptic drugs. Hopeful- Broadly speaking, the human reactions to carbamazepine in people encode these pores often lead to dis- ly, this type of research will provide The genetic code – a blueprint genome contains some 30,000 genes, of Chinese ancestry. ruption of their function, and eventu- important information on how genet- Each person’s genetic code might be each of which encodes a protein – In order for this important work to ally to seizures and epilepsy. ics influences epilepsy in many peo- considered a blueprint or manuscript which might be considered the actors continue, the NSE now needs a multi- Genetic research into rare epilep- ple with the condition. just as a manuscript for a play guides in the play. Variations in genes come million pound investment in its sies, more common epilepsies, and Such research is also likely to pro- actors who make it an entity with life, in several different forms, of which research facilities, to create a world into responses to treatment, is helping duce tests that will guide treatment character and individuality. Manu- the most well-studied, and probably class epilepsy genetics centre which us achieve a fundamental understand- with anti-epileptic drugs, perhaps scripts that have been around for cen- the most common, are called “single will enable its research to be used ing of the very basis of the epilepsies, allowing us to make better choices of turies often come in slightly different nucleotide polymorphisms”, or SNPs. directly in clinical practice. and to think in new ways in the search which drug, and how much, to use in versions. In the same way every person Currently, we believe SNPs underlie for better treatments for them. which patient, and what adverse reac- has the same basic set of genes, or many of the inherited differences In my own research group at the tions we might expect – or prevent. It manuscript. people have in a range of characteris- For more information, see National Society for Epilepsy, work- is predicted that relatively soon, However as a result of changes tics. Such characteristics encompass www.epilepsynse.org.uk/genetics AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES 13

cysts often develop in the brain rather having the condition, or the person than in muscles. Once in the brain a may be hidden away from society. In A global perspective cyst may cause inflammation and some cultures epilepsy is not seen as a swelling which in turn may trigger medical or neurological condition but epileptic seizures. Improving sanita- as a spiritual one, as possession by tion, so that pigs and humans do not evil spirits. In parts of Africa many come into contact with human waste, people with epilepsy are cast out. on epilepsy could help reduce dramatically the Managing epilepsy as we do in the UK risk of this disease and consequently would not necessarily work every- the burden of epilepsy. where. When it comes to developing Epilepsy is a global condition, respecting no geographical borders and potentially It is interesting that not everyone services for epilepsy, we need to take affecting anyone, irrespective of race. A lot is known about potential risk factors for who develops these brain infections into account the local structures for goes on to develop epilepsy. Part of healthcare and people’s belief sys- epilepsy in the so-called developed world although it is fair to say that even today, the answer may lie in the person’s tems, and provide services tailored to genetic make-up. The interactions each individual country. with the benefit of sophisticated diagnostic tests, the causes of epilepsy for a signifi- between genetic factors and environ- cant minority of people remain unclear. mental factors such as poor sanita- Bringing epilepsy tion, poor diet and poor healthcare out of the shadows BY PROFESSOR LEY SANDER, NSE PROFESSOR OF NEUROLOGY & CLINICAL EPILEPSY AND HEAD OF THE WHO systems are not well understood but A few years ago the WHO, in collabo- COLLABORATIVE CENTRE FOR RESEARCH & TRAINING IN NEUROSCIENCES, LONDON UK are likely to play an important part in ration with a number of non-govern- the risk of developing epilepsy. This is mental organisations in the field of populations. The reasons are not fully This is also likely to be happening in an area in which further studies are epilepsy, launched a programme understood but are likely to be associ- other regions in which malaria is urgently needed to decrease the glob- called the Global Campaign against ated with lower standards of living endemic. It is no surprise that the al burden of epilepsy. Epilepsy aiming at increasing aware- and poorer sanitation and hygiene. World Health Organisation (WHO) has ness and decreasing the treatment declared the eradication of malaria as The treatment gap in gap. Initiatives have been developed Different causes of epilepsy one of its main priorities. Malaria can resource-poor countries in several countries with various Some causes of epilepsy, including kill but also has the potential to cause In developed societies up to 70% of degrees of success. Projects in Brazil diseases of brain blood vessels and suffering many years later if the per- people with epilepsy may have their and China have been particularly suc- head injuries, exist throughout the son survives. seizures fully controlled with appropri- cessful. In Brazil, the project served as world. Some causes, however, such as Neurocysticercosis is another infec- ate medication and the majority of the embryo of a national epilepsy bacterial, viral, fungal and parasitic tious condition often associated with people with the condition do receive programme which is now being infections, are more frequent in epilepsy. It is said to be the most com- treatment in the form of anti-epileptic implemented. In China, epilepsy resource-poor countries. A large mon cause of epilepsy in many parts drugs. However, in the poorer countries treatment has reached rural areas and number of people who develop of the developing world and is the great majority of people receive no the Chinese Government is now tak- epilepsy in the tropical world do so responsible for 50% of all neurologi- treatment and suffer as a result. The ing the programme into 16 provinces, due to potentially avoidable causes – cal problems in some parts of India WHO has estimated that over 80% of reaching thousands of people. Much from diseases, infections and para- and Latin America. Neurocysticerco- people in resource-poor countries remains to be done to increase global The great majority of patients with sites. These could be avoided with sis is caused by the pork tapeworm receive no attention, medical or other- understanding of epilepsy, its diagno- epilepsy, are not in rich countries but better sanitation, hygiene and nutri- infection. The worm sits in the human wise, for their epilepsy. In many of sis, treatment and management and in resource-poor countries where less tion, and by better healthcare. Unfor- intestine and releases eggs which are these countries epilepsy is a costly con- to get it out of the shadows – but a is known about the possible causes of tunately, in resource-poor countries passed in stools. If these eggs are dition to treat, and often not consid- first step has been taken. epilepsy. Over 80% of the world’s healthcare is sometimes non-existent eaten by a pig, they develop into cysts ered a priority. Often anti-epileptic population lives in resource-poor and diseases are often widespread. within its muscles. If people eat these drugs are not available. Coupled with a countries and therefore it is no sur- Some of the most preventable cysts in undercooked or raw pork, shortage of facilities and medical per- prise that well over 80% of people causes of epilepsy include infections they can get tapeworms, but not neu- sonnel, this makes diagnosing and with epilepsy live in such countries. such as malaria and neurocysticerco- rocysticercosis. However, if humans treating epilepsy very difficult. Indeed, it is often said that people in sis. A study of children in Kenya who ingest the eggs through contaminated In some countries there is also poor societies are more likely to devel- survived cerebral malaria found that water or food then they may develop strong stigma surrounding epilepsy; Professor op epilepsy than those in wealthier many went on to develop epilepsy. neurocysticercosis. In humans the people may prefer not to disclose Ley Sander

tant for there to be discussion on the seizure-free on the right medication. surgery to stop their seizures had not Epilepsy related deaths different options for managing any Seizure-freedom is the major factor in been considered. There was a total risk. Tailored information on SUDEP improving quality of life for people lack of information on management is part of the general package of with epilepsy, but it is also the most of the risks of fatality from a seizure Many people, often including healthcare professionals, essential information that people with important way of reducing the most even though the people who died mistakenly think that epilepsy is a benign condition. It is epilepsy need so that they can make significant risk factor for fatalities in were not known to be seizure-free. relevant treatment decisions and life- epilepsy. The numbers of deaths from epilep- not. There are at least three seizure related deaths every style choices. The problem is that many people sy have not fallen since 2002. Propos- In terms of general statistics, with epilepsy do not have the choice als for new legal powers for Coroners day in the UK. Sudden Unexpected Death in Epilepsy although SUDEP can affect any age it of accessing a specialist epilepsy to insist on a report from a hospital or (SUDEP) accounts for just over half of these deaths, with is much rarer in children and more service offering prompt and accurate general practice on preventable common in young adults. The most investigation, diagnosis and treat- deaths may provide a valuable legal young adults most affected. significant risk factor for SUDEP is ment. We know that four out of 10 challenge to drive improvements to the occurrence of seizures with stud- patients in every GP Practice could be services, but there remains an urgent BY JANE HANNA, DIRECTOR, EPILEPSY BEREAVED ies reporting a 23-fold increased risk seizure free, but are not. need for political action by govern- of SUDEP for people who have not In 2002 a UK government funded ment to tackle the low priority afford- been seizure free during the preceding report on epilepsy deaths led by ed to epilepsy. When SUDEP occurs families and car- seizure-related cardiac events. Night year compared to people with fully Epilepsy Bereaved working with med- Whilst bereaved families wait for ers often experience bewilderment, seizure monitors are also being controlled seizures. Generalised ical royal colleges found that up to action, NICE recommends that when isolation and prolonged distress researched for their effectiveness in tonic-clonic seizures and night-time 400 of 1000 epilepsy deaths were SUDEP occurs health professionals because they do not realise that a alerting other members of the family seizures are the types of seizures most potentially avoidable. Some deaths should offer information on SUDEP seizure can be fatal; the death usually or professional carers to a night-time associated with SUDEP, yet there are occurred whilst patients were on long support services. Epilepsy Bereaved occurs during sleep and is wholly seizure. some types of seizures carrying little waiting lists to see a doctor with offers a confidential SUDEP service unexpected. Although the mecha- Just because someone has a diag- or no risk. National guidelines on the expertise in epilepsy. For many for anyone affected by a bereavement nisms are not fully understood, nosis of epilepsy does not mean that epilepsies state that the risk of SUDEP patients, the nature and frequency of through epilepsy and an opportunity research shows that a seizure can trig- they are at risk of SUDEP so it is is very much lower if a person’s seizures they were experiencing were for bereaved families to be active in ger a person’s breathing to stop, or important that people with epilepsy seizures are being controlled and peo- not being monitored by GPs and, if the SUDEP campaign. cause a fatal heart rhythm. Prelimi- access accurate individualised infor- ple with epilepsy and their carers are they were, action was not always nary research has identified that some mation from the clinician or nurse alert to the risks of night-time taken to refer to specialist services. SUDEP deaths may be prevented responsible for managing their seizures. Most did not access epilepsy specialist through the use of a pacemaker in epilepsy. Like other chronic condi- The good news is that for every 10 nurse services and many of those who Contact Line – 01235 772852 people with epilepsy who experience tions such as asthma it is then impor- patients with epilepsy, 7 can be might have benefited from epilepsy www.sudep.org 14 AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES

Bio-feedback – consciously controlling activity in the brain Bio-feedback is a technique which may be helpful for people who experi- ence partial seizures or secondarily generalised seizures that begin with some kind of warning or aura. Over time some people can learn skills to help to consciously control activity in the brain. In some people this may help stop the seizure spreading. Furthermore, the technique may increase a person’s self-esteem by giving them a sense of control over their epilepsy. This therapy is not widely used, as it requires a lot of input from the thera- pist, and much practice and time on the part of the patient to achieve results. Biofeedback may be offered to adults and young people in clinical psychology departments in some hospitals.

Complementary AEDs – the potential to therapies Research into the use of complementary therapies in control seizures epilepsy is currently limited. Although there is Epileptic seizures can have a major impact on every aspect of a person’s life and, in growing interest and more work is being carried out, some cases, are potentially life threatening. The highest risk factor in having epilepsy there is currently little scientific evidence as to the comes from the seizures themselves and the goal of treatment must be to give complete effectiveness of many of complementary treatments, seizure freedom as soon as possible after the onset of seizures. It has been said that one and the outcome is often variable. seizure, once in a while, is one seizure too many.

Complementary therapies are often referred to as alternative therapies. In the case of epilepsy they should not be considered an alternative to anti- epileptic drugs. They can, however, sometimes be used as a complement Most people with a diagnosis of Treatment is usually started with a seizure freedom by around 10-20 per to conventional medicine, to help improve wellbeing and give people a epilepsy will be prescribed anti- single drug at a small dose. Dosage is cent. The quest for new drugs is there- sense of taking control of their own bodies and their lives. However, epileptic drugs (AEDs). These have the gradually increased, if necessary, fore on-going as is the need to while some people may find complementary therapies beneficial, others potential to control seizures in until the seizures are brought under improve existing drugs for first line may find they interfere with seizure control. around 70 per cent of cases. However, control. The key is to start low and go use (monotherapy), in terms of their Relaxation therapies, such as massage, acupuncture or reflexology, can starting treatment with an AED is a slow. If the first drug is not successful, efficacy, safety, pharmacokinetics be helpful for those people who find they have more seizures at times of major event for a patient and should a second drug may be tried and the (metabolism of the drug) and their stress of anxiety, but great care needs to be taken with aromatherapy. not be undertaken without a careful first may be gradually withdrawn. cost effectiveness. Although certain aromatherapy oils such as jasmine, ylang ylang, evaluation of all relevant factors and This process may continue until the The National Institute for Health camomile and lavender have a calming effect and may be helpful in until a diagnosis has been established right regime is established. Around 47 and Clinical Excellence (NICE) under- improving seizure control, other oils such as hyssop, rosemary, sweet beyond any doubt. per cent of individuals will respond took an appraisal of the newer AEDs, fennel and sage are thought to have an alerting effect on the brain and AEDs act by suppressing seizures successfully to the first drug they try, reporting on their clinical and cost may trigger seizures in people with epilepsy. and are not curative. Once treatment 32 per cent of the remainder to the effectiveness in 2004. They looked at Some herbal medicines may interfere with seizure control. In particular has begun the therapy is likely to be second and nine per cent of the seven drugs that were licensed in the Ayuverdic medicines may aggravate epilepsy and may best be avoided. long term – sometimes, depending on remainder to a third. UK between 1989 and 2000. They Ayurverda is an ancient Indian branch of medicine which uses herbal the circumstances, for life. The drugs Some individuals will need to take noted that almost all studies compar- remedies and other therapies. are powerful and adverse side effects two or more drugs in combination ing the older drugs with the newer There are different views concerning the safety of St John’s Wort. A are common. Possible side effects (polytherapy), but the ideal result is to found no statistically significant dif- review of 30 patients at Birmingham University Seizure Clinic has so far include drowsiness, weight loss or achieve seizure freedom with a single ference in seizure outcomes. Also, shown no evidence of any significant increase in seizures in people tak- weight gain, and allergic reactions drug (monotherapy) in the lowest while it is generally believed that the ing anti-epileptic medication and St John’s Wort. However, other such as skin rash. possible dosage, with the fewest side newer AEDs carry fewer side effects research suggests that St John’s Wort may affect the blood levels of many More than 20 different AEDs are effects. Even within a particular and are better tolerated than the older types of medication including anti-epileptic drugs. The Committee on currently licensed throughout the seizure type, one individual will drugs, the appraisal committee deter- Safety of Medicines recommends that people taking anti-epileptic drugs world. The choice of drug prescribed respond well to a particular drug mined there was, at the time, insuffi- do not take St John’s Wort, and that anyone already taking this herbal is influenced by the type of seizure or whereas another might not; also one cient evidence to support this. remedy see their doctor to discuss the possibility of withdrawing it. It is epileptic syndrome. The selection is patient may experience adverse side Particular consideration was given important to speak to the doctor first if considering stopping St John’s largely empirical rather than rational, effects and another may not. to the teratogenicity – potential to Wort, as the dose of anti-epileptic medication may need to be altered to with the prescriber selecting the drug Twelve new AEDs have been intro- cause defect in the unborn child – of prevent side effects. on the basis of experience of what is duced in the UK in the last 20 years – AEDs. All the older AEDs have been When considering any area of complementary therapies, it can be likely to work best for the particular three have already been dropped associated with malformations and helpful for the person to discuss the possible effect this may have on their seizure type, rather than being able to because of adverse side effects and the risk is higher among those taking seizure control with their GP or epilepsy specialist, and with a qualified predict precisely, at the outset, which even the best of these new drugs have more than one drug. But the commit- practitioner in that particular field of complementary medicine. drug will be effective. only increased the potential for tee found there was insufficient data AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES 15

Helen Hollis – liberated by surgery Helen Hollis felt she had been thrown a lifeline when pocampus which meant that surgery that surgery has released her inde- was an option. I was thrilled and excit- pendence. “I looked at an old seizure she was offered surgery in May 2005. Although she ed! I did worry about the risk I was tak- diary the other day and there were so still experiences the occasional seizure, she feels her ing but the medical staff were wonder- many seizures recorded in it every ful. They explained the risks and bene- week. I have to remember just how life has been turned around. fits and were very reassuring.” frequent and severe they were before A few weeks later, Helen underwent the operation. I am vastly better off. I surgery and her life turned around. have had just three seizures since my That was almost two years ago. operation. My confidence has grown. Although she still experiences the I have travelled on a train alone. I go She speaks candidly about her things like not being able to run them very occasional seizure, Helen realises into town alone. Liberation is great!” epilepsy, and her thoughts prior to, about in the car like other mums.” and after surgery. In a typical day Helen would expe- The mother of two was 19 when rience up to eight complex partial she had her first tonic clonic seizures. In her words: “These are the seizure at her grandfather’s funer- type of seizures where I was aware of al. It took another five years for her what was happening but my con- epilepsy to be diagnosed, during sciousness was altered. I often felt as which time Helen felt ‘detached though it might progress to a gener- from reality’. alised seizure and it was very fright- She said: “The diagnosis was ening. I did not want to lose con- almost a relief, it gave an explana- sciousness and I was anxious about tion for my experiences. But in what my family might have to cope spite of the diagnosis I struggled to with. At these times my confidence gain control of my seizures. The was rock bottom. medication made me tired and “I would have to go in to town with UNSUITABILITY COULD slowed down my thinking. My mum when I was having a bad day. confidence suffered and there were Mum had to watch me like a child. I ARISE BECAUSE: times when my dignity was dared not go anywhere alone as I was bruised.” worried about putting down cash or ● There are contraindications; Helen regrets that her children, credit cards and losing them.” there is a possibility of interac- now aged 12 and 9, have never In 2005 Helen was referred to the tions with other drugs the person known their mum ’without epilep- National Hospital in London and is taking, for example oral sy’. She said: “When I had a series underwent tests at the NSE’s Assess- contraceptives of seizures it must have affected ment Centre in Buckinghamshire to ● It is already known the drug is them and their school life. They see if she was a potential candidate poorly tolerated by the individual dealt with the situation admirably for surgery. ● The patient is a ‘woman of and I am very proud of them. It She said: “The tests showed my child-bearing potential’. can’t be easy for them and I regret seizures stemmed from the right hip-

for surgery. A multi-disciplinary In some cases, a decision will be approach should be undertaken in made to undertake intracranial EEG, a available to assess the teratogenicity Surgery this pre-surgical assessment, includ- surgical procedure using subdural of the newer drugs. The greatest risk ing the neurologist, neurosurgeon, and depth electrodes. comes with sodium valproate – a fac- psychologist, psychiatrist, neuro- Psychometric assessments will also tor that is clearly stated in this drug’s Surgery is a treatment option for some people whose physiologist and radiologist. be carried out to establish that cogni- Summary of Product Characterisa- epilepsy is proving resistant to anti-epileptic drugs Tests will include a thorough tive skills will not be impaired and tions. Nevertheless the experts advis- review of the clinical history and psychiatric assessments will also be ing the appraisal committee advised (AEDs). It will only be considered if the part of the seizure pattern, MRI and, in some undertaken. Equally, it is essential that this drug may still be an appro- brain from which the seizures are arising (the focal cases, other imaging techniques such that the patient, families and carers, priate choice for women of child- as PET and SPECT (see article on brain are fully informed and counselled bearing age with some types of gener- point) is clearly identifiable, is accessible to the sur- imaging). Scalp electroencephalo- before any decision to go ahead with alised seizures, providing an informed gram (EEG) will be included, as may surgery is taken. choice has been made. geon, and if it can be assessed that removal of that part EEG-video telemetry in which video Currently around three per cent of These findings, coupled with an of the brain will not adversely compromise the patient. recordings of the patient having people with intractable epilepsy will assessment of the cost of the drugs seizures are compared with the EEG be considered eligible for surgery, (the older drugs being significantly traces of electrical activity within the totalling around 500 cases a year. less costly than the new), led to the brain to give a clearer correlation However, it is thought that there are recommendation that the newer Epilepsy surgery usually involves part of the brain known as the hip- between the way the seizures are pre- between 750 to 1,500 people each drugs should only be tried when peo- the resection of the damaged or pocampus, located in the temporal senting and the electrical activity that year in the UK who could have epilep- ple are not achieving seizure freedom abnormal part of the brain. This lobe, can result in complete seizure is taking place. sy surgery. This is perhaps because with the older formulations – or when may be a small amount of tissue freedom in more than 70 per cent of many patients who could be eligible the older drugs are not suitable for such as a lesion on the brain, or, in cases. But even in those patients who may not be being referred to specialist particular reasons. A re-appraisal of extreme cases when there is a lot do not achieve complete seizure free- Currently around centres and therefore remain under- the epilepsy drugs by NICE is now of damage to one half of the brain, dom, the surgery can result in far investigated. due. may involve the removal of the fewer seizures and a greatly improved three per cent of people With advances in brain imaging complete hemisphere. The other quality of life. In children, surgery with“ intractable epilepsy techniques, it is hoped that more peo- strategy for surgical treatment is can also lead to improved develop- ple can be identified who may be able AEDs act by palliative, either to interrupt path- mental outcomes. will be considered eligible to have this form of surgery. ways of seizure spread by discon- Before the decision to go for sur- for surgery, totalling suppressing seizures and necting the area of the brain that is gery is finally made, the patient will are“ not curative causing seizures, or vagal nerve undergo many tests to pinpoint pre- around 500 cases a stimulation. cisely the epileptogenic tissue and Success rates are high and some any potential adverse effects, and to year “ procedures, such as the removal of establish the individual’s suitability “ 16 AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES

Memory loss Vagus nerve stimulation It is not unusual for people who though it will vary from one per- have epilepsy to have difficulties son to another and some people with their memory. may find their memory is perma- Vagus nerve stimulation regular electrical signals to the nerve, drugs have failed to fully control Any type of epileptic seizure has nently affected after a seizure. usually giving 30 seconds of stimula- seizures. It may also be used for people the potential to affect a person’s The side effects of taking anti- (VNS) involves mild elec- tion every five minutes during the who are not suitable for, or who do memory – and the more seizures an epileptic drugs (AEDs), such as day and night. These signals travel up not want to have brain surgery. individual has the more frequently drowsiness or attention problems, trical stimulation of the left into the brain, spreading out widely Side effects can include discomfort memory difficulties may occur. can have an effect on short-term vagus nerve as it passes through the nerve fibres. in the throat, a cough, difficulty swal- The location of the seizures with- memory and may make it difficult The signal can be boosted by pass- lowing and hoarseness of the voice, in the brain may influence the type to learn and store new informa- through the neck. It is used ing a magnet over the stimulator. This though these usually only happen of memory loss a person may tion, although when AEDs bring to treat epilepsy as well as can be helpful for people who have an when the vagus nerve is being stimu- encounter. For example, seizures in seizures under control this can aura or a warning that a seizure is lated. These effects may reduce with the frontal lobe of the brain may help to improve memory. This depression. about to happen as it may prevent the time or the person may get used to give rise to problems in remember- improvement is probably not due aura from developing into another them. ing what to do in the future as this directly to the AEDs, but is more type of seizure, or may reduce the The effects of VNS improve over part of the brain is responsible for likely due to the cessation of the The vagus nerve is a major communi- length of the subsequent seizure or time and full effect is usually seen prospective memory. Seizures aris- seizures. cation link between the body and the the recovery time. If the person has no 12–18 months after the implant. If ing in the temporal lobe may pres- Surgery may have an impact on brain. VNS Therapy works by sending warning before their seizures, some- after 18–24 months there is no ent difficulties in remembering a person’s memory, if the part of mild electrical signals to the brain via one else could use the magnet for improvement in seizures, the person things, as this lobe is responsible for the brain that has been operated on the nerve, disrupting the abnormal them when a seizure happens, poten- may choose to have the stimulator new learning. And people whose is important in memory function – electrical activity that can cause tially reducing the seizure length or switched off or removed. seizures start in the left side of the but for some people a reduction in seizures. the recovery time. The magnet is usu- brain may have problems remem- their memory may be a price worth It may reduce the number and ally worn on the wrist like a watch. bering words and get stuck in mid- paying if the surgery successfully intensity of seizures in some people, It is not clear who will respond best conversation, because the left side stops or reduces their seizures. but it is unlikely to completely stop to VNS therapy and it is usually con- of the brain is usually the side that There are several techniques and the seizures happening so anti- sidered if a number of anti-epileptic controls language and words. aide-memoires. A psychologist can epileptic drugs will usually still be Some people experience post- advise on ways to manage memory prescribed. VNS Therapy may also ictal confusion, ie in the period difficulties, and can also undertake reduce the length of the recovery time immediately after a seizure, and a memory assessment to determine after seizures, and some people find VNS Therapy have difficulty recalling any sort the extent and impact of the diffi- that it has a positive effect on their of information. This will usually culties. Referrals for a memory quality of life. It has been suggested NICE Clinical guidelines state that VNS Therapy is indicated for use as an go away once the person has had a assessment are usually made from a that VNS Therapy enhances the adjuntive therapy in reducing the frequency of seizures in patients whose chance to recover from the seizure, person’s GP or from their specialist. mood, memory and alertness for some epileptic disorder is dominated by partial seizures (with or without people. Also, after findings showing secondary generalisation) or generalised seizures. that it has a positive effect on individ- uals suffering from depression, VNS To date approximately 35,000 patients worldwide have been implanted is also indicated for the treatment of with the VNS Therapy System and the UK figure amounts to 1,800 patients. chronic or recurrent depression. In epilepsy treatment, a stimulator, The American Academy of Neurology has concluded that: “Sufficient evi- a little like a heart pacemaker, is dence exists to rank VNS Therapy for epilepsy as effective and safe based on implanted under the skin in the per- a preponderance of Class 1 evidence” of intractable partial epilepsy. son’s upper chest. Electrodes are con- nected to the stimulator at one end In addition to having a positive impact on seizure control, VNS Therapy and are coiled around the left vagus can enhance alertness, mood, memory retention and reduce daytime A psychologist can advise on ways to man- nerve in the neck at the other end. The sleepiness. age memory difficulties and can undertake a stimulator is programmed to transmit memory assessment to determine the extent and impact of the difficulties.

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for an annual review of their condi- tion. There are toolkits and guidelines to assist clinicians in providing better Government care and these can be interested pro- Economic fessionals in both primary and sec- ondary care. The final service development is the Initiatives post of ‘GP with a Special Interest’ in burden epilepsy (GPSIE). Some PCTs up and Over the last twenty years, a number of government down the country have embraced this reports highlighted the poor quality of epilepsy care in idea and identified and trained GPs to spend some of their time working It is estimated that there are around 456,000 people the UK and a clinical standards audit (CSAG)1 published with the Primary Care Trust (PCT) to supplement specialist care. Arrange- with epilepsy in the UK – this is the equivalent of one in 2000 even suggested ways of changing the way that ments about how to structure a GPSIE person in 131. Of these, 42,000 (one in 279) are chil- epilepsy care was provided. service are worked out locally. Of course not all PCTs feel the need for dren under 16, and one in 91 are over 65 years of age. GPSIE and so if anyone with epilepsy BY DR W HENRY SMITHSON, GP ESCRICK NORTH YORKSHIRE, feels their condition is not well man- CHAIR EPILEPSIES GUIDELINES GROUP AT NICE, HON SEN aged they should put pressure on their Approximately 131,000 are women of ‘child-bearing age’, ie between 12 and PCT to consider improving services 50. Around one in five people with epilepsy will have a degree of learning CLINICAL LECTURER HULL YORK MEDICAL SCHOOL with either specialist GPs or nurses. disability or impairment. The number of new cases diagnosed every day in This service can support and inform the UK is around 75. patents, families, friends and carers Misdiagnosis rates, where a diagnosis of epilepsy is wrongly made, are Frustratingly, health strategists large- a GP working in Doncaster whose and reduces the stigma and impact of estimated at between 20 and 31 per cent. At an assumed midway rate of 23 ly ignored these reports until the pub- daughter had epilepsy. His group the condition. Regrettably service per cent misdiagnosis, this equate to 105,000 people having a diagnosis and lication of a Department of Health worked with the voluntary sector and development is currently under receiving anti-epileptic drugs even though they do not have epilepsy. funded report on epilepsy related the Pharma industry to address the financial pressure in many areas. The Clinical Guidelines for the management of the epilepsy, published in deaths. It is estimated that perhaps a suboptimal care and the paucity of 2004 by the National Institute for Health and Clinical Excellence (NICE) thousand people a year die of epilepsy specialists by becoming the first GP reported that the medical cost of treating people with epilepsy in related causes of which half are sud- with a special interest in epilepsy and (1) Clinical Standards Advisory alone was over £23 million, rising to almost £28 million across the whole of den and unexpected2. This report training 2 specialist nurses to work Group. Services for Patients with the UK. The non medical costs are significantly higher at more than £111 published in 2002 showed that about alongside him and develop a satellite Epilepsy. London: DoH, 2000. million in England (over £132 million across the UK), bringing the combined half the number of sudden unexpect- service under the supervision of a (2) Hanna NJ, Black M, Sander JW et costs across the UK to in excess of £160 million. In addition it is estimated ed deaths might have been avoided if neurologist in Sheffield. al. National Sentinel Clinical Audit that 58,900 people with epilepsy are claiming Disability Living Allowance at epilepsy care was improved. This was found to be clinically and of Epilepsy-Related Death: Epilepsy a cost of £184 million per year. The Chief Medical Officer for Eng- cost effective and so the charity – death in the shadows. London: The It will cost £15 billion to treat the total current UK population of children land promised an action plan3 and Epilepsy Action funded an increasing Stationery Office, 2002. with epilepsy during their lifetimes. This figure does not include social serv- this was launched in 2003. This sug- number of ‘sapphire nurses’ to com- (3) Department of Health. The Annu- ices and educational costs. This is equivalent to £0.5 billion per annum to gested several initiatives to improve memorate its fortieth birthday. The al Report of the Chief Medical Offi- treat children with epilepsy. care. number of specialist nurses grew to cer of the Department of Health Despite this economic burden, epilepsy attracts very little government The Action plan was broadly wel- about a thousand but are now being 2001. London: DoH, 2001. funding. In 2002/03, only one per cent (£3.78 million) of the grant from the comed by the epilepsy charities, but cut back because of the financial diffi- (4) National Service Framework for UK government’s medical research council went to fund epilepsy research their fear of effective improvement in culties of the ‘modernised NHS’. Long Term Conditions. Department and only 1.4 per cent of the total overall grants given by UK neurological care being restricted by lack of ring- The second was the publication of of Health 2003 funding bodies went to fund epilepsy research. fenced funding and poorly defined guidelines (by SIGN in Scotland and SIGN. The Scottish Intercollegiate objectives was indeed proved correct NICE in England and ). Both Guidelines Network in Edinburgh All the information provided in this article is taken from the Joint Epilepsy with the restricted impact of the NSF guidelines are based on best clinical NICE. The National Institute for Council’s report Epilepsy Prevalence, Incidence and Other Statistics, published for long term conditions.4 evidence but the NICE document also Health and Clinical Excellence in in 2005. The Joint Epilepsy Council is an umbrella body representing more However, four developments have considered cost effective data. These London than 20 epilepsy organisations throughout the UK and the Republic of Ireland. had a positive effect for people with guidelines were developed to set out epilepsy. The first was a professional- how epilepsy could be better man- ly driven independent non-govern- aged. They are slowly being adopted. ment initiative and the other three The third was the inclusion of driven by the Department of Health. epilepsy in the new GP contract as The first was the development and part of the Qualities and Outcomes growth of Epilepsy Specialist Nurses. Framework (QOF) and set out mini- This was an independent initiative mum ‘targets’ for epilepsy care in and had nothing to do with govern- general practice. This QOF framework ment. It came about as an improve- has some drawbacks but at least ment identified and driven by doctors brings epilepsy into the NHS radar. and nurses working in the NHS. This People with epilepsy are now invited service gap was initially identified by

Advancing New Therapies For People Living With Epilepsy Please join us at the upcoming AED IX conference March 21-23, 2007 in Sunny Isles, Florida or the 2nd Eilat International Educational Course September 2-9, 2007in Eilat, Israel! Find out more about our grants, programs, and conferences at epilepsy.com and epilepsytdp.org 18 AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES

gist if the sort of epilepsy is complex Adults or isn’t responding to regular treat- Adults with epilepsy may see a range Who looks ments. They take on most of the care of professionals in primary and sec- of children with epilepsy and often ondary care but more routine moni- have the assistance of a specialist toring now takes place in general nurse. practice. Again, care must be tailored after your epilepsy? The Epilepsy Specialist Nurse: is a to the individual’s needs and the type nurse with training and experience in and severity of their epilepsy. looking after either children or adults The General Practitioner: acts as a with epilepsy and provides informa- co-ordinator and guide to ensure best The best answer is that you do! Individuals living with long term conditions have to tion and support to individuals and referral when epilepsy is suspected, families and sometimes acts as a link when changes occur in seizure char- make personal decisions about their health and their treatment and how to manage between hospital and GP services. acteristics and for monitoring the that condition. Doctors, nurses and other health professionals who help in manage- They monitor the effects of treatment established condition. Your GP prac- and may recommend a change in tice is now able to offer an annual ment must remember that epilepsy is a poorly understood label that encompasses a dose or type of medication and refer review of your condition by using the wide range of potential seizure activity and brings with it a feeling of stigma, of loss of you back to the consultant if there are skills and strengths of British family problems. They also inform organisa- medicine in knowing patients and control, restrictions on driving, leisure, education and employment. tions and members of the public being a source of long term continu- about epilepsy and work with patient ing care. BY: DR W H SMITHSON GP ESCRICK NORTH YORKSHIRE, CHAIR EPILEPSIES groups. The number of ESNs grew The Medical Specialist: is the doc- GUIDELINES DEVELOPMENT GROUP NICE, PRIMARY CARE LEAD AUDIT from a handful fifteen years ago to tor with an interest and expertise in about a thousand. The development the condition and is usually trained in Epilepsy care can assist in this self- of the specialist nurse has trans- neurology but psychiatrists, general management by providing a timely formed epilepsy care in the UK but physicians and elderly medicine spe- and accurate diagnosis, investiga- cialists may all have the necessary tions tailored to the individual, treat- experience to run a specialist epilepsy ments specific to the type of epilepsy, service. Your GP will know the best information about the condition, reg- The crucial thing is to person in your part of the country. ular monitoring and rapid access to The Epilepsy Specialist Nurse: has specialist services if seizures change find a professional who the same role as their paediatric coun- or become more frequent. “understands you and terparts. The increasingly complex health The GP with a Special Interest in service now offers a number of differ- your condition Epilepsy: some PCTs have appointed ent ways of managing epilepsy and and trained a few GPs to have a more the ‘care pathway’ will depend on the extensive knowledge of epilepsy. This age of the patient, on the type and “ GPSI service is yet to be standardised severity of the epilepsy and on pure regrettably some of these posts are but these specialists may well work good luck. The key to good care is by now under threat because of the with neurologists to diagnose and agreeing a ‘management plan’ taking financial difficulties in the NHS. treat the more complex epilepsies. Of into consideration the views of the The Paediatric Neurologist: is a course, you may find that your own individual, the specialist and the gen- consultant paediatrician who spe- practice has a GP or nurse with a par- eral practitioner. For children and for cialises almost exclusively in disor- ticular interest in the condition. people with learning differences the ders of the nervous system. There are family or the carers’ views are also only a handful of paediatric neurolo- important. and may be referred to a paediatric hospitals but some paediatricians gists in the UK and they are generally neurologist if the epilepsy is of a com- work in the community. The main role based in a university hospital. They Children plex type or is difficult to control. of a paediatrician is to make the diag- act as a second opinion for general Quite an array of talent! But the cru- Children with epilepsy will meet their The Paediatrician: is a specialist in nosis and start treatment that is tai- paediatricians and have special cial thing is to find a professional who GP, their local specialist who should children’s illnesses and has experi- lored to the type of epilepsy. They will knowledge of rare epilepsy syn- understands you and your condition have an interest and expertise in the ence in treating most of the childhood also help the patient decide on long dromes and other treatments when so you can all work together to man- condition, an epilepsy specialist nurse epilepsies. They usually work from term treatment and refer to a neurolo- regular medicines fail. age it better.

Epilepsy Action campaigns to (no. 541) in Parliament to gather sig- tions in Parliament about the situa- other areas of the UK. An epilepsy natures from MPs to show their sup- tion. specialist nurse who left their post in save epilepsy specialist nurses port for a particular issue. The response to the campaign from Nottingham will not be replaced; Epilepsy Action has written to its Epilepsy Action members and MPs resulting in the service being reduced members and local MPs in the areas has been fantastic. The post of an by 25%. Epilepsy Action is calling on Epilepsy Action is currently cam- The All-Party Parliamentary Group where there is a threat to epilepsy spe- epilepsy specialist nurse in Ipswich Nottingham University Hospital’s paigning to save the jobs of the many on Epilepsy (APPG) met on 4 Decem- cialist nurses asking them to put pres- has been saved through media work NHS Trust to review its decision to cut epilepsy specialist nurses who have ber 2006 to discuss the threats to sure on local health trusts to review and the publicity that was generated. epilepsy services in Nottingham and been threatened with redundancy, epilepsy specialist nurses and to spe- the proposed changes. The media has The post of an epilepsy specialist the surrounding areas. reduced working hours, or spending cialist nurses in other neurological also been used to generate publicity nurse in Leeds is no longer at risk. less time on specialist epilepsy duties conditions. Since then, John Battle about posts that are under threat, and However, the jobs of epilepsy spe- due to cuts in NHS funding. MP has tabled an Early Day Motion a number of MPs have asked ques- cialist nurses are still at risk in many AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT EPILEPSY, DISTRIBUTED IN THE TIMES 19

• Epilepsy West Lothian Other useful contacts www.epilepsywestlothian.co.uk Epilepsy resources 01506 464446 Brain Injury Rehabilitation Trust www.birt.co.uk • Fund for Epilepsy 01924 896100 www.epilepsyfund.org.uk The Joint Epilepsy Council is the representative body of • Epilepsy Connections 020 7592 3270 Epilepsy imaging Group www.epilepsyconnections.org.uk www.ion.ucl.ac.uk the UK’s main epilepsy organisations. 0141 248 4125 • Gravesend Epilepsy Network 020 73918905 01474 351 673 • Epilepsy Research Foundation FABLE (VNS) JEC Members • Enlighten www.erf.org.uk • Gwent Epilepsy Group www.fable.org.uk www.enlighten.org.uk 020 8995 4781 01495 763 131 helpline 0800 521 629 • Joint Epilepsy Council 0131 226 5458 www.jecuk.org • Epilepsy Scotland • International League Against Epilep- Global epilepsy campaign 01943 871852 • www.epilepsyscotland.org.uk sy (ILAE) www.who.int/mental_health/neurology www.davidlewis.org.uk 0141 427 4911 www.ilae-uk.org.uk • National Society for Epilepsy 01565 640000 helpline 0808 800 2200 Headway: the brain injury www.epilepsynse.org.uk • Meath EPILEPSY Trust association 01494 601 300 • Epilepsy Action • Epilepsy Specialist Nurses www.meath.org.uk www.headway.org.uk helpline 01494 601400 www.epilepsy.org.uk Association 01483 415 095 helpline 0808 800 2244 0113 210 8800 www.esna-online.org.uk • Brainwave: The Irish Epilepsy helpline 0808 800 5050 0114 2712186 • Mersey Region Epilepsy Association HemiHelp: Info & Support for Association www.epilepsymersey.org.uk Children with Hemiplegia www.epilepsy.ie • Epilepsy Bereaved • Epilepsy Wales 0151 298 2666 www.hemihelp.org.uk +353 1455 7500 www.sudep.org www.epilepsy-wales.co.uk helpline 0845 123 2372 01235 772850 Helpline 08457 413774 • National Centre for Young People with Epilepsy (NCYPE) Matthews Friends www.ncype.org.uk (the ketogenic diet) 01342 832 243 www.matthewsfriends.org THE EPILEPSY INFORMATION NETWORK 0788 4054811 • Organisation for Anti-Convulsant The EIN is an innovative service developed by the National Society for Epilepsy (NSE) in response to the 1999 Clin- Syndrome The Muir Maxwell Trust ical Standards Advisory Group report to Government which highlighted the need for quality information to be www.oacs-uk.co.uk www.muirmaxwelltrust.com available at a local level to support people with epilepsy. The importance of information provision for all people 01253 790022 0131 454 0606 with epilepsy was further highlighted in the NICE clinical guidelines, 2004. The EIN primarily provides epilepsy information services in healthcare settings, working alongside healthcare • Quarriers Neurosupport professionals. The services are manned by trained volunteers, who are supported by regional managers. www.quarriers.org.uk www.neurosupport.org.uk Today there are more than 100 such services in hospitals and clinics throughout England with more in develop- 01505 612224 0151 298 2999 ment. The service is regularly evaluated by NSE and the neurologists and specialists it works with. In the most recent • St Elizabeth’s Centre Support Dogs survey, all who responded said the EIN complemented the services they already offered and 95 per cent said their www.stelizabeths.org.uk www.support-dogs.org.uk patients benefited from speaking to an EIN volunteer during their hospital visit. 01279 843 451 0870 609 3476 The EIN is showcased in a Good Practice guidance document supporting the Government’s National Service Framework for long term conditions, as a model of good practice for its innovative services. UK Epilepsy & Pregnancy Register The EIN has latterly expanded to schools with a programme to make pupils more aware about epilepsy and how to www.epilepsyandpregnancy.co.uk respond to someone having a seizure. Developed by NSE and delivered by EIN volunteers, the Schools Awareness Pro- gramme ties in with the national curriculum at Key Stage three. Voluntary Organisations Disability Group For more information, contact the National Society for Epilepsy www.vodg.org.uk 07857 886 134 Would you like there to be a cure for epilepsy? You are not alone. Registered Charity No. 1100394

• Epilepsy affects over 450,000 • Over the past five years every people in the UK alone. pound of Foundation funding has • Every day 75 people are diagnosed led to a further two pounds being with the condition in the UK. allocated to epilepsy research by To make a donation organisations such as the Medical Even with control of seizures, quality of life today visit: Research Council. “I can't think of anyone better for people with epilepsy can be poor. www.erf.org.uk/givenow.htm However, new research offers the very real The Foundation is also very efficiently run. call 0208 995 4781 to support than the Epilepsy possibility of developing therapies that • Last year 87 pence in every pound or send a cheque made Research Foundation because could transform the lives of those affected. was spent on research and payable to Epilepsy more research into epilepsy The Epilepsy Research Foundation is a national charity at the forefront of these associated charitable activity. Research Foundation to: can only be a good thing.” research developments. We identify and Great progress in understanding the causes Epilepsy Research Foundation Damian Cronshaw fund promising research at its earliest stages of epilepsy has been made in recent years, and our track record is excellent. but there is still much to be done. PO Box 3004, London, W4 4XT