Shedding Light on Epilepsy

A Nurse’s Information Pack

B R A I N W A V E THE IRISH EPILEPSY ASSOCIATION www.epilepsy.ie The Global Campaign Against Epilepsy “Out of The Shadows”, is a joint initiative by the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE) and the World Health Organisation (WHO). It was launched in at the 22nd International Epilepsy Congress in June 1997. The joint mission is to improve the acceptability, treatment, services and prevention of epilepsy worldwide. Brainwave, as the Irish Member of the International Bureau for Epilepsy, is playing its part in promoting the Global Campaign against Epilepsy.

The campaign objectives may be summarised as To achieve these objectives, the campaign has to follows: set up a new Global Campaign task Force in 2010 which aims to achieve the following goals: To increase public and professional awareness of epilepsy as a universal treatable brain 1. Improve the visibility of epilepsy and the disorder activities of the Global Campaign in all countries

To raise epilepsy on to a new plane of 2. Promote activities of epilepsy projects at a acceptability in the public domain country and regional level

To promote public and professional education 3. Assess and strengthen health care systems about epilepsy analysis for epilepsy by acquiring a better understanding of the conceptual model, To identify the needs of people with epilepsy on magnitude and scope of the coverage gap a national and regional basis including the treatment and knowledge gap To encourage governments and departments of measuring the burden of epilepsy and methods health to address the needs of people with for conducting country resource assessments epilepsy, including awareness, education, 4. Increase partnership and collaboration with diagnosis, treatment, care, services and other organisations prevention 5. Develop the necessary infrastructure and resources to achieve the expanded goals of the campaign

International Bureau for Epilepsy World Health Organisation International League Against Epilepsy

Authors Acknowledgments: Brainwave would like to extend a special thanks to all the We would also like to acknowledge the contribution of the authors who contributed to the development of the Nurses following people: Pack. • Elizabeth (Noddy) Dempsey, Clinical Nurse Specialist • Denise Cunningham, Clinical Nurse Specialist in Epilepsy Neurology, Mater Misericordiae University Hospital Services, Brainwave and The Adelaide and Meath Hospital • Ann Connolly, Paediatric Neurology Nurse Specialist, Adelaide incorporating the National Children’s Hospital, Tallaght, Dublin and Meath Hospital, incorporating The National Children’s • Sinead Murphy, Community Epilepsy Specialist Nurse, Hospital, Tallaght, Dublin Brainwave and Beaumont Hospital • Suzanne Crowley, Paediatric Neurology Nurse Specialist, • Geraldine Dunne, National Information Officer, Brainwave The Temple Street Hospital Irish Epilepsy Association • Moinne Howlett Paediatric Clinical Pharmacist, Our Lady’s • Maria Keegan, Epilepsy Clinical Nurse Specialist, Our Lady’s Children’s Hospital, Crumlin Children’s Hospital, Crumlin • The Epilepsy Programme Staff at Beaumont Hospital, Dublin • Grainne Griffin, Epilepsy Clinical Nurse Specialist, Our Lady’s • Claire Dowdall Children’s Hospital, Crumlin • Therese Danaher, Lecturer in Intellectual Disability Nursing, School of Nursing, Dublin City University • Cora Flynn, cAdvanced Nurse Practitioner in Epilepsy, Beaumont Hospital About Epilepsy

What is Epilepsy? Epilepsy is a tendency to have recurrent unprovoked seizures. It is the most common serious chronic neurological condition in the world. A recent epidemiological study shows that in there are 37,000 people with epilepsy. (Linehan et al., 2009)*

What is a Seizure? A seizure is a sudden, paroxysmal, synchronous and repetitive discharge of cerebral neurons that interrupt brain function. In someone with epilepsy, seizures Causes/ Different types of Epilepsy may be triggered by a range of provoking factors such as missed or delayed medication, excessive alcohol, Many causes of epilepsy have been identified. stress, tiredness, illness, menstruation, medication Epilepsies associated with Central Nervous System interactions or skipping meals. (CNS) pathology are labelled as symptomatic localisation related or partial/ focal. Such causes are Classically, two patterns of epileptic discharge have CNS infections, cerebral vascular disorders, brain been recognised: tumours, congenital abnormalities or brain trauma. The generalised epilepsies are idiopathic (with gene • Those arising from focal cortical disturbance foci) or symptomatic (a mixed set of clinical causing partial seizures syndromes).

• Those characterised by generalised synchronous spike-wave discharges causing generalised seizures Symptomatic Or Partial/ Focal Epilepsy In this type of epilepsy, abnormal electrical disturbance is initially localised to one part of the Diagnosis brain. The disturbance may stay confined to an area or it may spread to involve the whole brain i.e. A diagnosis is made by gathering the clinical history, become generalised (secondary generalised). including an eyewitness description of the seizure. Consciousness is lost late in the seizure, if at all, and Other conditions are excluded such as cardiac the person may have a recollection of the seizure syncope (an ECG should be performed), panic attacks starting. The part of the seizure that the person and cerbrovascular attacks. Usually a routine EEG is remembers is called an “aura” or a warning. It should performed; however studies have shown that up to be noted that this “aura” is itself seizure activity. 50% of EEGs show no abnormalities. However a normal EEG does not out rule a diagnosis of epilepsy. Generalised Epilepsy An EEG may help to localise the epileptogenic focus. In this type of epilepsy, the whole brain is affected by All patients with a suspicion of non epileptic attack abnormal electrical disturbance, and the seizures may disorder (NEAD) require video EEG. Neuroimaging be major convulsive (Tonic Clonic) or minor (MRI/CT) is carried out to detect lesions or subtle (Absences). Consciousness is lost early in the seizure congenital malformations. and the individual will have no recollection of what happened during the seizure.

1 Authors: Cora Flynn, cAdvanced Nurse Practitioner in Epilepsy, Beaumont Hospital Denise Cunningham, Clinical Nurse Specialist in Epilepsy Services, Brainwave and The Adelaide and Meath Hospital incorporating the National Children’s Hospital, Tallaght

Nurses Response To Seizures Refractory patients with partial/ focal epilepsy will be assessed to see if they may benefit • Assess Airway, Breathing, Circulation from a resective surgical approach. • Administer oxygen, if cyanosed or E experiencing breathing difficulties, suction Those who are unsuitable for resective secretions as required surgery may benefit from the insertion of a • Monitor pulse, breaths/min vagus nerve stimulator. This is a generator • Administer prescribed medication, as per that is placed into the chest with a lead coiled care plan

V around the vagus nerve which is electrically • Maintain a safe environment: stimulated to reduce neuron excitability and Protect head and limbs from injury, but do reduce seizures. Half of VNS patients can NOT restrain expect a 40-50% reduction in the frequency of Alert other staff members for support seizures. Patients with generalised epilepsy Pull up cot sides and use padded material who do not respond to medication may also A on cot sides benefit from VNS therapy. Do not move the patient during a seizure • When the seizure has terminated, place the patient in the recovery position, record vital signs, observe the patient until fully Non-Epileptic Attack conscious Disorder (NEAD) W • Observe characteristics of the seizure. If semi-conscious, interact with the patient to also known as Non Epileptic elicit memory and speech function e.g. hold Seizures (NES) an object in front of them asking them to name it, give them a code word to What is Non-Epileptic Attack

N remember e.g. ‘Red Bus’. Record their Disorder (NEAD)? responses Non-Epileptic Attacks look similar to epileptic • It is important to document the seizure seizures but are not caused by abnormal

I accurately, recording any provoking issues, electrical activity in the brain. People with duration of seizure, how the patient felt NEAD may experience different types of prior to the onset of the seizure, response to episodes including simple “day dreaming” medication and post ictal recovery episodes and more complex types with whole body shaking. These events can be variable in

A length. General Treatment Options The goal of treatment is to be seizure free on What causes NEAD? the minimum amount of medication with no NEAD are caused by various factors, including side effects. Approximately 50-60% of psychological distress or emotional trauma R patients respond to a first line drug, which may have occurred in the past. Often a approximately 10-20% will require a second person will not be consciously aware of such line drug with the remainder of patients events so it is not always possible to pinpoint becoming refractory/resistant to medication. the exact cause. However, this is not essential for successful treatment. B (Brodie et al., 2005)** 2 How common is NEAD? Most people with photosensitive epilepsy are NEAD is not uncommon. About 1 in 5 people sensitive to 16-25 Hz (Hz = flashes per second), attending services for difficult epilepsy are although some people may be sensitive to E found to have NEAD. A small percentage of rates as low as 3 Hz and as high as 60 Hz. people have both NEAD and epilepsy. It is Photosensitivity is diagnosed by an EEG test common for a person to be first diagnosed and precautionary measures are advised to with epilepsy and, over time, for the diagnosis affected persons. In almost all cases the to be changed. About 80% of patients with person on exposure to a trigger, will V NEAD are first diagnosed with epilepsy. immediately experience a generalised tonic- clonic seizure in which they lose Management consciousness, fall and convulse for typically 1 NEAD is managed by a neuropsychological – 3 minutes. approach. AEDs will not control these types of A events. AEDs are usually weaned gradually Photosensitivity can be triggered by flicker; under the care of a neurologist. glare; patterns; and saturated red in an image. Television, computer games and electronic displays sometimes are sources of these triggers though newer generation devices such as LCDs and plasma screens are flicker

W free. Natural light can also trigger seizures, Photosensitive e.g. sunlight shining on water; through leaves of trees; through railings etc. Geometric Epilepsy patterns with strong contrast (bars, stripes, grids, swirls etc.) may also provoke this Photosensitive epilepsy (PSE) describes N reaction in some, especially if combined with sensitivity to flashing or flickering lights, at motion. Prescribed polarised sunglasses, certain frequency, as well as certain geometric preferably with side shades, can help some patterns and glare. Only 3-5% of people with

I people to reduce the effects. Often it helps for epilepsy are photosensitive. Most have the person to cover one eye with one hand to idiopathic generalised epilepsy, but reduce the risk as the provoking image needs photosensitivity is also a feature of to be seen with both eyes to provoke a seizure. progressive myoclonic epilepsies, and can occur in acute symptomatic seizures due to Overall, the condition of photosensitive A alcohol or drug withdrawal. Photosensitive epilepsy is relatively rare and should not lead epilepsy usually begins before the age of 20 to undue restrictions for people with epilepsy years, although it is most common between as a group. the ages of 7 and 19. Girls (60%) are more often affected than boys (40%), although

R Guidelines for viewing TV, attending clubs and seizures are more frequent in boys because using VDUs are available from the Brainwave they are more likely to be playing video website www.epilepsy.ie games. B

3 • frequent seizures Sudden Unexplained • having seizures when no-one is around to Death in Epilepsy help • untreated epilepsy (SUDEP) • abrupt changes in epilepsy medication E What is SUDEP? • not taking medication as prescribed If a person with epilepsy dies suddenly and no other cause of death is found, this is called Advising patients on reducing risk: SUDEP. About 60 - 80 people die from epilepsy • Clarify what type of epilepsy they have and each year in Ireland. Accidents and status V any specific risks associated with it epilepticus (an uncommon type of severe • Be knowledgeable of what triggers the seizure) account for some of these, but the seizures and to what extent these triggers most common cause of death is SUDEP. can be avoided • If they are not seizure-free, suggest they

A seek a referral to a neurologist What causes SUDEP? • Advise they keep taking the medication and SUDEP is connected to seizures but what never make changes or stop medication exactly causes SUDEP is unknown. The most without discussing it with their doctor or likely explanation is that a seizure interferes epilepsy specialist nurse first with the part of the brain that controls • Advise that their doctor will need accurate breathing or the heart. W ongoing information about the number, frequency and type of seizures and any medication side effects Who is at risk? • If seizures occur in sleep, advise the person The risk of SUDEP varies from low to very low about getting a seizure alarm (about 1 in 1000 people with epilepsy), but for N • Advise about sufficient sleep a small number of people the risk may be • Advise about the risks of binge drinking and higher. It is important to understand the recreational drugs person’s particular type of epilepsy and how I best to manage it. It is advisable that patients raise any concerns about SUDEP with their consultant or epilepsy The most significant risk factor for SUDEP is specialist nurse. the occurrence of seizures (particularly tonic- clonic). Therefore the better epilepsy is Advise carers that they can do the following to A controlled, the more the risk is minimised. reduce the risk of SUDEP: Common sense precautions include avoiding • Put them into the recovery position when binge drinking and taking recreational drugs the seizure has finished. Moving the person which may trigger seizures. Other risk factors could encourage breathing to restart if it has

R include: stopped • having seizures during sleep • Remain with the person for about 20 • being a young adult minutes after the seizure has finished and • SUDEP is rare, but can happen in children check their breathing is regular and their under 16 colour is back to normal B 4 Formulate a plan with the Doctor or Epilepsy Status Epilepticus Team which will be followed in the event of a prolonged seizure. A single epileptic seizure of > 30min duration

E or a series of epileptic seizures during which Reasons to call an ambulance can include: function is not regained between ictal events • If you know it is the person’s first seizure in a > 30min period. • The seizure continues for more than five minutes What are the signs and

V • One seizure follows another without the person regaining awareness between symptoms of Status Epilepticus? seizures Importantly symptoms may not always • The person is injured during the seizure include convulsion but are varied: • You believe the person needs urgent medical attention • Person may appear dazed A • If the person is a pregnant woman • Muscle contractions and spasms • If in doubt • Loss of consciousness • High blood pressure • Irregular heartbeats

W What is the treatment for Status Epilepticus? It is a medical emergency requiring urgent hospital admission. Should a seizure

N a. Last longer than five minutes or if b. Multiple seizures occur send for an ambulance immediately . It is I critical that rapid treatment is given as soon as possible. Rescue Medication Rescue medication may be used to: A 1. Stop acute seizures, preventing progression to status epilepticus in those at risk. 2. Prevent repeated seizures that may be R short lived but these clusters may lead to B R A I N W A V E injury etc. THE IRISH EPILEPSY ASSOCIATION 3. Terminate seizures with cyanotic episodes. www.epilepsy.ie 4. Prevent seizures that occur at specific events, cycles or situations. B

5 Diazepam is effective via oral, rectal and intravenous routes. It is easy and safe to administer with an appropriate license for use

E in epilepsy.

Midazolam is effective via buccal, intranasal, intravenous and intramuscular routes. The buccal route is where the medication is placed

V against the side of the gums and cheek. The medicine is directly absorbed into the bloodstream. Midazolam is unlicensed via buccal and intranasal route.

A Brainwave runs a one day training course for Health professionals in the administration of Buccal Midazolam. More information is available on the Brainwave website Clobazam (Frisium) is only available as an oral www.epilepsy.ie preparation. It is effective in the management of breakthrough or repeated seizures when

W Midazolam Buccal Liquid (EPISTATUS) this is given orally. an unlicensed product and is prescribed on a named patient basis. It is for the treatment of Where the individual is conscious, a choice of potentially life threatening tonic clonic oral medications exists and should be used. seizures, which are likely to progress to status When the individual is unconscious, Rectal Diazepam remains the standard but N epilepticus, and is administered via the buccal route. Midazolam has potential. Please note that all individuals affected by epilepsy are different Lorazepam (Ativan) is effective via oral, and may require individual care. I intravenous or sublingual routes. It may be used for short term treatment of clusters or This information is a guide only. If you have repeated/breakthrough seizures where the further questions please contact the person’s individual can take oral medication. It is Neurologist/ GP/ Epilepsy Nurse Specialist/ effective in the management of status The Brainwave advice line on 01 4554133 A epilepticus.

Clonazepam (Rivotril) is effective via oral and *Linehan et al. Examining the prevalence of epilepsy and delivery of epilepsy care in Ireland; Epilepsia, Published intravenous routes. It is effective in the Online, Dec 1 2009# management of repeated or breakthrough R seizures when given orally and can also be **Brodie, M.J., Schachter, S. C., Kwan, P. (2005) Fast facts: used in status epilepticus. Epilepsy 3rd Edition. B

6 Paediatric Issues

Differences between childhood and adult epilepsy

• There are many differential diagnoses to be considered • There are many epilepsy syndromes, causes, and varied prognosis • The usual refractory seizure type is generalised rather than partial • Most causes are idiopathic • Seizures evolve and change with age • Not necessarily lifelong condition • There is potentially an important relationship between seizures, treatment and learning/ behavioural difficulties • Treatment must take account of educational issues and family dynamics • Need to consider the effects of AED’s on the immature, developing brain • Titration- drug doses are calculated on body weight. (Appleton & Gibbs, 2004)* Doses are increased slowly to avoid dose related side effects and to ensure tolerance • Weight- some drugs can cause weight gain or weight loss. If either of these issues are of concern Diagnosis then careful consideration should be given to drug Parental anxiety is a big issue when treating children choice e.g. Epilim can cause weight gain, Topamax newly diagnosed with epilepsy. Support and advice can cause weight loss given to parents at diagnosis seems to help with the • Behavioural problems- certain drugs and adjustment and subsequent management of the preparations may be avoided as they are known to condition. cause behavioural problems e.g. Epilim syrup can cause hyperactivity • Ability to swallow tablets- syrup, solution or sprinkle preparations may be easier for children to Treatment swallow. However, not all children have difficulty Anti Epileptic Drugs (AEDs) with tablets Basic principles of treatment are similar for children and adults. However, when choosing an AED for the Other Treatment Options treatment of childhood epilepsy a few specific things should be considered: Diets: Ketogenic diet and modified Atkins • Seizure type- specific epileptic syndromes have diets specific first line treatments which are guided by Research has shown that both diets have an research findings antiepileptic effect. The reason for this is not clearly • Age and licensing- some drugs are not licensed for understood. These diets are not suitable for everyone. certain age groups. This means the drug may not be To ensure safety and optimal growth and used as first line treatment in certain ages but may development, children who are on these diets need to be considered after other drugs have failed to be carefully monitored by hospital doctors and a achieve adequate seizure control specially trained dietician. Authors: Maria Keegan, Epilepsy Clinical Nurse Specialist, Our Lady’s Children’s Hospital, Crumlin Grainne Griffin, Epilepsy Clinical Nurse Specialist, Our Lady’s Children’s Hospital, Crumlin

• Ketogenic diet - is a diet high in fat, provides • Summary of treatment plan to date should adequate protein and is very low in be present at neurosurgical meeting for carbohydrates. As this is a very restrictive multidisciplinary team opinion E diet it can be unpleasant and difficult to comply with. • Modified Atkins - is a diet high in fat and Psychology protein and low in carbohydrate (usually Psychology/ neuropsychology are sometimes 10g). It is considered less restrictive than the needed to help children and parents adjust

V Ketogenic diet and food is considered more and cope with the diagnosis of epilepsy palatable. Common Triggers for seizures Surgery (see also Treatment of Epilepsy) The following is a list of common triggers. It is AEDs are considered the mainstay of unlikely all of these triggers will affect every treatment. However when a child fails to child but it is helpful to identify triggers so that

A respond to medication, surgery may be they can be avoided or managed: considered. The work up for surgery can take • Tiredness time and parents need to be aware of this. • Boredom Criteria for surgical consideration usually • Excitement include: • Anxiety or stress • Persistent intractable seizures despite trial of • Poor sleep routine 3-4 AEDs at maximum tolerated • Illness W /recommended doses • Constipation • No realistic hope of spontaneous remission • Flashing lights (only if photosensitive) of epilepsy • Weight gain • Evidence of medical, social and educational • Growth spurt disability due to seizures • Missed/ skipped meals

N • Acceptable risk-benefit ratio for the • Poor nutrition proposed surgery • Travelling (change in time zones) • No indication that the surgery will adversely • Heat or humidity affect the child • Hormonal changes

I • Change in routine Surgical work up usually includes: • Anaesthetic • Detailed clinical history • Alcohol • Scalp EEG • Recreational drugs • Long term video EEG monitoring • Menstruation • Neuroimaging-MRI A • Psychiatric assessment Medication related triggers: • Speech and language therapy • Missed dose of AED • Occupational therapy • Withdrawal of AED • Neuropsychology – including WADA if old • Late administration of AED enough (See Treatment of Epilepsy – • Medication adjustment (increase or

R Surgery) decrease of dose) • Subdural electrode recording & SPECT • Some antibiotic administration (single-photon emission computed • Contraceptive pill tomography) -sometimes required (See • Ritalin Treatment of Epilepsy – Surgery) • Some fish oil supplements B Seizure Diary Death in childhood epilepsy Keeping a seizure diary helps identify seizure (See About Epilepsy – SUDEP) triggers. Known triggers should be avoided. If Certain characteristics are known to be E this is not possible steps should be taken to associated with an increased risk of death: manage triggers. • Epilepsy with onset in first 12 months of life • Epilepsy which is symptomatic in aetiology Discharge Planning: (cerebral malformation) If you are the nurse on duty when a patient is • Severe myoclonic epilepsies of infancy and

V being discharged following a diagnosis of childhood epilepsy please ensure the parents and patient • Infantile spasms (related principally to the have the following information before treatment of spasms-ACTH and steroids) discharge: • Severe developmental delay already present • Prescription for anti-epileptic medication at the onset of epilepsy and understanding of the doses (Appleton & Gibbs, 2004)*

A • Prescription for rescue medication (e.g. Epistatus) and have been informed how to administer this • Information in relation to their diagnosis or details on how to gain information Frequently asked (Brainwave) • Contact details for relevant departments i.e. questions W Epilepsy Nurse Specialist Why is blood level monitoring required? • An application form for Long Term Illness Blood tests may be used to measure the Scheme amount of a medication in a child’s blood, but Educational Issues: not all children require this testing. However, blood level monitoring is necessary when:

N Most children with epilepsy go to mainstream • Seizures are uncontrolled despite high doses school and do not have any learning of medication difficulties. However some children may • Where non compliance is suspected require extra support. The factors that are • A child has an episode of status epilepticus I thought to be important in contributing to (convulsive or non convulsive) cognitive impairment in people with epilepsy • A child appears toxic (i.e. excessively include: drowsy or lethargic) even on a low dose of • Treatment for epilepsy e.g. medication medication • The occurrence of interictal epileptiform • When phenytoin is prescribed discharges A • The underlying cerebral pathology Can illness or infections increase the chance • Disruption of sleep by seizures of having seizures? • The occurrence of seizures and their A child’s seizures could increase in number or underlying pathophysiology severity when they have illness or infection. • Genetic factors High temperature may well be a triggering R • Psychosocial factors e.g. mood, stigma and factor for some. Gastro-intestinal upset can educational deprivation reduce absorption of anti-epileptic medication so the drugs might not work as well as usual, increasing the risk of more seizures. B What about the risk of vomiting anti-epileptic • The State Exams Commission (only where medication? the child is applying for Reasonable Where medication is in tablet form, the tablets accommodations in State Examinations) may be seen in the vomitus. In this situation it TEL: 090 644 2700

E is safe to repeat the dose once the child’s tummy upset has settled. Where medication is For leaflets to support parents giving an in a coloured liquid form, it too may be explanation of epilepsy see www.epilepsy.ie obvious in the vomit and likewise can be repeated. If however, the child vomits 45 Exactly what do these people need to be told? minutes or more after taking the drug, it would Tailor the information to the specific child. V not be advisable to repeat the dose. Where possible, write down the essential points and make copies. It is important for Can seizures change as a child gets older? teachers, childminders and others to be made Yes, particularly if the seizures started early in aware of: the child’s life. In some cases seizures can • Type of seizure the child usually resolve (e.g. benign rolandic epilepsy of experiences, how it starts, how it A childhood) whereas in others it continues into progresses, parts of body involved etc., so adolescence and adult life (e.g. juvenile they know what to expect myoclonic epilepsy). Changes in seizures may • How the seizure is normally managed also be due to: • How and when to administer first aid • Type of epilepsy the child has been • Whether or not the child gets an ‘aura’ or diagnosed with, e.g. some epilepsy warning

W syndromes follow a similar course as a child • How long the event may be likely to last gets older • How long the child needs to rest after the • Hormonal changes at puberty may cause a event change in seizure pattern, usually related to • How frequent the seizures are the menstrual period • Is there a pattern to them? • Exposure to seizure triggers (see list) • What the possible trigger factors are e.g. N flashing lights, certain computer games etc Who needs to be told that the child has • In case of emergency, what action must be epilepsy? taken, who should be contacted, where While it is up to the parents to decide who they emergency medication is located and how it I disclose this information to, there are key is to be administered personnel who “need to know” and circumstances in which it is vital that they be informed. For example: • Teachers or Crèche staff who have

A responsibility for a child’s wellbeing in the parents’ absence • All sports coaches, especially swimming instructors • Baby sitters / child minders • Other parents who may be in charge of the R child during play dates/ sleepovers *R. Appleton and J. Gibbs, Editors, Epilepsy in childhood • Summer camp instructors and teachers of and adolescence (third edition), Martin Dunitz, London (2004). extracurricular activities Journal of the Neurological Sciences, Volume 231, Issue 1, • Scout leaders, student-exchange host Pages 106-106 families, exam supervisors J.Haller B Intellectual Disabilty & Epilepsy

EPILEPSY AND system and brain tumours. Epilepsy can result due to the nature of the underlying INTELLECTUAL DISABILITY intellectual disorder. It is important to state that people with epilepsy as a group have the same range of People with intellectual disabilities are intelligence as the general population. diagnosed with epilepsy and treated in the Having a diagnosis of epilepsy does not same way as everyone else. Epilepsy can be imply an intellectual disability. However, a difficult condition to diagnose in any among people with intellectual disabilities person and it can be particularly so with the incidence of epilepsy is higher than it is people who also have an intellectual among the general population. disability. Stereotypical mannerisms, behaviour issues and poor communication skills can often lead to the delay in The term Intellectual Disabilities (ID) diagnosing. People with an intellectual disability have similar needs to the whole The official term “Intellectual Disability” as population. Due to the organic nature of designated by the Department of Health and some syndromes, epilepsy may be more Children in Ireland refers to a lifelong complicated and difficult to control among condition marked by deficits in some people with intellectual disability. understanding new and complex issues, Those predisposed to having complex needs coping with everyday life, and having had a include people with more severe ID, those history of notably reduced intellectual ability with more co-morbid conditions, poorer in childhood. People with ID have a access to care and reduced communication developmental delay that may prevent or skills. Getting to know each individual delay progress through some of the person is essential to understanding and childhood milestones of human dealing with these complexities. development. The incidence and prevalence of intellectual disabilities is difficult to clarify as children may not be diagnosed at birth or Specific Epilepsy Syndromes for sometime after. Intellectual disabilities can develop during the prenatal, perinatal or associated with ID post natal stages and, as with epilepsy, the Certain specific epilepsy syndromes are causes are often unknown. associated with increased levels of intellectual disabilities. Most of these are diagnosed in childhood, examples include: Dual Diagnosis – people with • Rett syndrome epilepsy and ID • Sturge-Weber syndrome Some of the most common intellectual • Lennox Gastaut syndrome disability disorders associated with the • Landau Kleffner syndrome development of epilepsy are congenital malformations of the brain, metabolic • Tuberous sclerosis disorders, trauma, infections of the nervous • West Syndrome – Infantile Spasms Authors: Therese Danaher, Lecturer in Intellectual Disability Nursing, School of Nursing, Dublin City University Geraldine Dunne, National Information Officer, Brainwave The Irish Epilepsy Association

People with Epilepsy and ID: cerebral palsy and, in later life, those Making Choices about Care with Down’s syndrome • Nursing supervision may be People with epilepsy and ID may have necessary at all times for some reduced ability to people which may curtail their • access a diagnosis

E freedom, for example, to live in • participate in investigations community settings • have input into specific management • Difficulties with staff availability and plans staff ratios can impact on the • express their views regarding person’s participation in activities V treatment options • There may also be interaction issues • plan their future to consider also, such as interaction • communicate their needs effects with other conditions as well • express their choices regarding daily as between other treatments and anti epileptic drugs

A care

Due to these issues their needs may have to be voiced by a nurse or family The Role of Nurses working in member who understands the the Intellectual Disability person’s preferences. Where more Context W than two disabilities are involved, Nurses working closely with people thoughtful care planning is required to with epilepsy and ID over a consistent improve quality of life. time tend to get to know the person, their family and the multidisciplinary

N team involved. Experienced nurses Epilepsy–related issues in will have developed expertise from Developing Care-Plans for listening, from observation and

I People with ID monitoring and from communicating • There is a higher incidence of sudden with all those concerned with the unexpected death in epilepsy person’s care. In some services, nurses (SUDEP) among people with ID design resources to help the person with ID and epilepsy to communicate

A • There is a higher incidence of non their needs, manage their own epileptic attack disorder (NEAD) in epilepsy, seek support, manage people with ID medication and live a more • There is a higher incidence of independent life. complicated and difficult to control R seizures • Certain groups of people are at increased risk of developing epilepsy e.g. people with autism, people with B Behaviour Observation Behaviour is the action or reaction of a person usually in relation to the Epilepsy can be difficult to diagnose environment. Behaviour can be and may be misdiagnosed in around conscious or subconscious, overt or 25% of people with intellectual covert, and voluntary or involuntary. disabilities. The way we behave or act can be E Seizure observation records are vital attributed to how we control to helping identify seizure behaviours ourselves. The following four types of and to clarify and refine diagnoses. It behaviour may help to view can be sometimes be difficult to tell observations differently, as it is some seizures apart from other kinds V sometimes difficult to categorise the of behaviours. This is especially true in problem. people with Intellectual Disabilities Typical Behaviour and related diagnoses. Typical behaviour as opposed to Observing the behaviours within a behaviours associated with

A context of knowing the person well neurological disorders, can be allows nurses record behaviours, described as everyday behaviours that observe commonalities, spot trends people display as they progress and notice particular physical signs through the lifespan. evident in the person. Epilepsy Behaviour

W Knowing the person allows us to begin Epilepsy Behaviours are observable to differentiate their behaviours into signs from a person’s physical and epilepsy related behaviour and other communication behaviours. The signs categories of behaviour. will be different to the person’s usual behaviour. N How do I know if what I Intellectual Disability Behaviour observe is due to Epilepsy, ID or Intellectual disability behaviours are observable behaviours associated

I something else? with various syndromes or behaviours Commonly observed behaviours associated with institutionalised among people with intellectual lifestyles. disabilities can arise from several Autistic Behaviour causes. These include typical

A Autistic behaviour can include behaviours as well as epilepsy related observable physical signs and and non-epilepsy related behaviours. communication skills typical to autism. These may include people repeating behaviours consistently, poor eye

R Behaviour Observation Chart contact or limited interactions with The chart over leaf will assist you others. differentiate between four main categories of observed behaviour. B B R A I N W A V E

Examples illustrating Epilepsy Related Behaviour and other behaviours

Typical Behaviour Epilepsy Behaviours Intellectual Disability Autistic Behaviours Behaviours

Absent minded Staring Boredom Atypical gazing

Picking fluff from sweater Repetitive movements Finger flicking Stereotyped behaviour

Stretching Atonic movements Stereotyped behaviours Body positioning

Licking lips Lip smacking Mouthing objects Atypical face movements

Shouting Pre ictal scream Ritualistic shouting Self stimulatory soundings

Fixing clothes Complex partial seizure Stereotyped Stereotyped behaviours/complex partial behaviours/complex seizure partial seizure

Running Atypical running seizure Avoiding environment/ Avoidance of feared place/ictal Atypical running seizure running

Crying Dacrystic seizure Upset behaviour/ Dacrystic Behavioural disinhibition/ (seizure with crying seizure Dacrystic seizure behaviour)

Laughing Gelastic seizure Enjoyment/gelastic event Idiosyncratic behaviours (seizure with laughing associated with behaviour) autism/gelastic event

Drinking a glass of water Ictal behaviour associated Stereotyped behaviours/ictal Stereotyped behaviours/ictal with complex partial seizures behaviour behaviour

Note: “Ictal” refers to the seizure event itself Women & Epilepsy

In order to enable • The progesterone-only pill is not recom- informed decisions mended as reliable contraception in women and choice, and so as taking enzyme-inducing AEDs to reduce misunder- • Women taking enzyme-inducing AEDs who standings, women choose to use depot injections of progesterone with epilepsy and their should be informed that a shorter repeat partners must be injection interval is recommended (10 weeks given accurate inform- instead of 12 weeks) ation and counselling • The progesterone implant is not recommended about issues such as in women taking enzyme-inducing AEDs contraception, concep- • The use of additional barrier methods should tion, pregnancy, be discussed with women taking enzyme- breastfeeding, caring inducing AEDs and oral contraception or for young children and having depot injections of progesterone menopause. • If emergency contraception is required for women taking enzyme-inducing AEDs, the All healthcare professionals who treat care for, or dose of levonorgestrel should be increased to support women with epilepsy should be familiar 1.5 mg and 750 micrograms 12 hours apart with relevant information and the availability of • A barrier method of contraception should also counselling. be employed particularly if breakthrough bleeding is an issue • Additional care needs to be taken when Epilepsy, menstrual cycle and fertility Lamotrigine is the AED of choice as the COCP • Catamenial seizures refer to an increase in can interfere with Lamotrigine levels seizures around the time of the menses, either just before or during the first few days of Conception menstruation • All women of child bearing potential with • All women with epilepsy should be counselled epilepsy should be offered pre-conceptual about their fertility and the possible side-effects counselling and advised to plan each of their anti epileptic drugs (AEDs) pregnancy as much as possible • There is a decreased fertility amongst women • Women with epilepsy should be informed with epilepsy (WWE) about the risk of epilepsy and AEDs in pregnancy and should be advised to contact Contraception the Irish Epilepsy and Pregnancy Register for the most up to date information • In women of childbearing potential, the risks • The risk of major and minor fetal and benefits of different contraceptive malformations in any pregnancy is 2%. This methods, including hormone-releasing Intra risk increases two-three folds in women taking Uterine Devices, should be discussed a single AED. Certain drugs and certain • If a woman taking enzyme-inducing AEDs such combinations of drugs carry higher risks as Phenobarbitone, Primidone (Mysoline), • Details of major and minor malformations Phenytoin (Epanutin), Carbamazapine should be discussed to include (Tegretol), Topiramate (Topamax) or neurodevelopmental impairments Oxcarbazepine (Trileptal) chooses to take the • A minimum dose of 5mg Folic Acid should be combined oral contraceptive pill (COCP), a prescribed following the onset of menses or at minimum initial dose of 50 micrograms of least 3 months prior to conception. The reason oestrogen is recommended. If breakthrough for the increased dose is that certain anti- bleeding occurs, the dose of oestrogen should epileptic medications use up more folic acid be increased to 75 micrograms or 100 already in the body at a faster rate, leaving micrograms per day, and ‘tricycling’ (taking reduced amounts of the vitamin in the body, three packs without a break) should be which is essential in the early development of a considered baby's spinal cord Authors: Sinead Murphy, Community Epilepsy Specialist Nurse, Brainwave and Beaumont Hospital

Pregnancy • All seizures in labour should be stopped • Women with epilepsy need accurate immediately with the use of Lorazepam information during pregnancy, and the (PO, IV) or as per hospital policy possibility of status epilepticus and SUDEP should be discussed with all Breastfeeding E women who stop their AEDs against • In general, mothers with epilepsy on medical advice AEDs prior to delivery should be • Women with epilepsy may experience a encouraged and supported in their change in seizure pattern during decision to breastfeed. However each pregnancy and if this occurs they should mother needs to be supported in her V be reviewed by their specialist urgently choice of feeding • Doses of AEDs should not be increased routinely in pregnancy but should only be adjusted on clinical grounds After the birth • Other factors such as non-compliance • New parents should be advised on and vomiting should be considered if simple safety measures that need to be

A seizure pattern deteriorates employed such as feeding/ changing the • Care of the pregnant woman should be baby on the floor, no bathing the baby shared between the obstetrician and the unsupervised, and the use of a playpen specialist • Parents should be advised that the risk • A detailed ultrasound scan should be of injury caused to the baby by maternal performed at 18-22 weeks gestation, to seizures is low (special epilepsy alarms check for any major/minor mal- are available for mothers home alone) W formations because of history of • Women should attend their specialist epilepsy and if taking any AEDs within 6 weeks of delivery to enable a • Mothers taking enzyme-inducing AEDs review on her epilepsy and her AED should be prescribed oral vitamin K therapy 10mg daily in the last month of • Advice on contraception and re- commencing Folic Acid should be

N pregnancy, to prevent hemorrhagic disease of the newborn as some AEDs discussed may interfere with the clotting function in the newborn Menopause

I Labour • Women should be aware that their seizure pattern may change at this time • Women should be advised to consider • HRT should be prescribed for the same devising a birth plan in consultation with indications as in women who do not her obstetrician and specialist have epilepsy • Most WWE will have a normal labour • WWE on long term enzyme-inducing

A and vaginal delivery but stress, pain, drugs are at risk of developing bone sleep deprivation, over-breathing and demineralization. This should be dehydration increase the risk of seizures investigated and a calcium supplement in labour prescribed • The usual oral AED medication should • General advice on bone health to be administered in labour and include diet, exercise and smoking R postnatally should also be addressed • Women should consider the use of a TENS machine; gas and air and epidural anesthesia to aid rest, pain and stress relief. Pethidine should be avoided, as it

B is metabolized into norpethidine and this may induce a seizure Treatment of Epilepsy

Investigative Procedures Electroencephalography (EEG) The EEG is used to support a clinical diagnosis of epilepsy, assist classification of seizure type and syndrome, and to determine whether the patient is photosensitive. The initial EEG would usually be a routine EEG. More than 50% of patients with epilepsy will have a normal trace (Brodie et al., 2005).*

Activation techniques include hyper- ventilation and photic stimulation. If the initial EEG is unremarkable and the diagnosis remains in doubt, a sleep deprived study is recommended. Alternatively, the patient may have a prolonged inter-icital recording using ambulatory monitoring, preferably for 24 hours.

In some cases the patient may be sent for video telemetry which is EEG recording for long periods on equipment remote from the patient, in combination with synchronised video allowing correlation of clinical and electrographic events. Video telemetry is mandatory as part of evaluation for epilepsy surgery, and may be the only way to scan should be performed if MRI is distinguish epileptic from non-epileptic unavailable, or in patients for whom MRI is seizures. contraindicated (e.g. those with cardiac pacemakers, non-compatible aneurysm clips Structural and Functional Imaging or severe claustrophobia). Imaging studies of the brain to look for underlying structural abnormalities are Functional imaging can identify focal essential for the appropriate diagnostic abnormalities in cerebral physiology even evaluation of most patients with epilepsy, when structured imaging results are normal. particularly those presenting with partial- Single Photon Emission Computed onset seizures. Tomography (SPECT) can demonstrate increased blood flow in brain regions The imaging modality of choice is Magnetic associated with seizure activity. With Resonance Imaging (MRI). It has a higher Positron Emission Tomography (PET), sensitivity and specificity than Computed epileptogenic areas can be detected as Tomography (CT) for identifying structural hypometabolic regions interictially. Both of lesions such as malformations of cortical these functional neuroimaging techniques development, hippocampal sclerosis, are useful adjuncts in the workup for arteriovenous malformations, cavernous epilepsy surgery. hemiangioma and low grade gliomas. A CT Author: Denise Cunningham, Clinical Nurse Specialist in Epilepsy Services, Brainwave and The Adelaide and Meath Hospital incorporating the National Children’s Hospital, Tallaght

Medical Management Of and blood-cell counts, depending on the patient's history and the type of Epilepsy adverse effects reported with the AED Anti Epileptic Drugs (AEDs) are mainly being used. E used as long-term treatment to prevent the occurrence of seizures. Surgery Treatment is indicated following two AEDs are considered the mainstay of or more unprovoked seizures but may treatment. However when an also be considered in patients after a individual fails to respond to single seizure if the likelihood of medication, surgery may be V recurrence is considered to be high or considered. The work up for surgery when a recurrence might have serious can take time and individuals need to consequences. Providing detailed be aware of this. A person with instructions to the patient and/or epilepsy may be suitable for surgery in relatives about the nature of the the following circumstances: treatment, as well as its risks are a • Antiepileptic drug treatment has A prerequisite for successful therapy. been tried but has proven unsuccessful One of the most important principles • The seizures originate from one in the treatment of epilepsy is an localised area of the brain individualised approach to both drug • The person’s ability to function choice and dosage. Factors to be normally would not be affected by considered include type of seizures,

W removing this part of the brain epilepsy syndrome, patient age and • The irregular part of the brain is life situation, risk factors, and the accessible to the surgeon and can be patient having adequate follow-up. removed without further damage The aim of drug treatment is complete • The areas of the brain responsible for prevention of seizures with as few side speech, sight, movement or hearing effects as possible. are not a part of the brain to be N Monotherapy is preferred, and the removed drug chosen is determined by • The person is thought to have a good considering the efficacy spectrum and chance of becoming seizure free after the tolerability profile that is least I surgery likely to interfere with the quality of life • The person has no other medical of the individual patient. Almost 60% problems which would make them of patients with recent-onset epilepsy unsuitable for the surgery achieve seizure control with the first or second AED (Brodie et al., 2005).* Criteria for surgical consideration Polytherapy is used in refractory

A usually include: patients after careful consideration of • Persistent intractable seizures the balance between seizure despite trial of 3-4 AEDs at maximum suppression and adverse reactions. tolerated/ recommended doses Measuring AED serum concentrations • No realistic hope of spontaneous can help to ensure compliance, to remission of epilepsy R assess side effects and to establish the • Evidence of medical, social, and most effective concentration in a educational disability due to seizures seizure-free patient. Other tests may • Acceptable risk-benefit ratio for the include measurements of electrolyte proposed surgery levels, liver and kidney function tests, • No indication that the surgery will adversely affect the person B Surgical work up usually includes: disconnection procedures e.g. • Detailed clinical history corpus callosotomy, multiple subpial • Scalp EEG transection • Long term video EEG monitoring E • Neuroimaging-MRI Vagus Nerve Stimulation • Psychiatric assessment therapy • Speech and language therapy Vagus nerve stimulation (VNS) has • Occupational therapy been approved as an adjunctive • Neuropsychology – including WADA therapy, i.e. a treatment to be used in

V if old enough conjunction with another therapy, The Wada test looks at language and usually AEDs. VNS therapy is indi- memory. Language (speech) is cated for reducing the frequency of controlled by one side of the brain (in seizures in children, adolescents and most people, the left side). The Wada adults with partial onset seizures, with will confirm which side controls or without secondary generalisation,

A language. Memory can be controlled or generalised seizures that are by both sides of the brain; the Wada refractory to antiepileptic medications. helps determine which side of the Vagus nerve stimulation requires brain has better memory. If the side implantation of a programmable that controls language or has better signal generator subcutaneously in the memory is where seizures may be chest. Electrodes carry electrical coming from, the surgeon may signals from the generator to the left W consider further investigation e.g. MRI vagus nerve in the neck. The most or brain mapping before surgery. common side effects of VNS therapy • Subdural electrode recording & include temporary hoarseness, cough, SPECT (single-photon emission a tickling sensation in the throat and computed tomography) is shortness of breath. These side effects occur during the stimulation periods

N sometimes required and typically decrease over time. SPECT shows the blood flow in the There is evidence that VNS may have brain. A radioactive compound is positive effects on mood, memory and injected during a seizure. A

I drowsiness. comparison of the patterns of cerebral blood flow between and during a seizure assists localisation of the epileptic focus. Complementary • Summary of treatment plan to date Therapies should be present at neurosurgical A Although some people find meeting for multidisciplinary team complementary treatments helpful in opinion treating their epilepsy, there is no scientific evidence to suggest that any Surgical procedures usually aim to: type of complementary treatment is • Remove a mass of epileptogenic successful in controlling or curing R tissue e.g. anterior lobectomy epilepsy. Because of this lack of • Remove structurally abnormal tissue scientific evidence, it is recommended e.g. hemispherectomy or lesion- that complementary treatment should ectomy be used with antiepileptic medication, • Separate the epileptogenic cortex rather than on its own. from the rest of the brain- B Acupuncture Herbal Treatments Acupuncture involves treating the There are different types of herbal whole person, body and mind, by treatments available, for example, using needles, and sometimes heat, to general herbal medications and E stimulate the nerve endings. The aim Chinese herbal medicines. Herbal is to improve the general state of treatment uses plants as a cure to treat health, creating a better mental, the whole person. Limited research physical and emotional balance. Very has shown that herbal treatments may little research has been carried out into be helpful as a complementary the use of acupuncture in epilepsy. treatment for epilepsy. V However, of the research that is However, certain herbal remedies may available, there does not appear to be trigger seizures for some people or any harmful side-effects relating interact with anti-epileptic medication. specifically to epilepsy. Therefore it is advisable that the person with epilepsy discusses any Aromatherapy A herbal remedies with their doctor or Aromatherapy involves the use of pharmacist before starting the herbal pure aromatic oils taken from various treatment. plants. General relaxation is one way that aromatherapy can be used and Yoga oils such as ylang ylang, camomile Stress is often a precipitating factor for and lavender, appear to aid relaxation seizures. Yoga is believed to induce W and may be helpful for some people relaxation and stress reduction, as it is with epilepsy. said to help people become balanced in mind and body. Various studies Aromatherapy should only be given carried out in the past involve small by a qualified aromatherapist. This is numbers of patients. A Cochrane because some oils can trigger seizures Database Systematic Review (2000) of

N and should therefore be avoided by clinical trials into use of Yoga in people with epilepsy. These oils Epilepsy revealed that “no reliable include rosemary, sage, hyssop, fennel conclusions can be drawn regarding (these herbs when used in foods and the efficacy of yoga as a treatment for I drinks are perfectly safe). Note- epilepsy. Further studies are necessary wormwood should be avoided. to evaluate the efficacy of yoga in the treatment of epilepsy.” Biofeedback Biofeedback works on the principle There are different types of yoga that you can learn to control body available. Strong pranayama (breath A processes which were previously exercises) and trataka, (gazing at a thought to be entirely involuntary. meditation object) should be avoided Using an electroencephalogram (EEG) by people with epilepsy, as they could you are able to see the activity of your trigger a seizure. More information brain on a computer screen and about yoga is available from the Irish through various methods can learn to Yoga Association www.iya.ie and the R alter your brain activity. British Wheel of Yoga (the governing Although it can certainly be effective body for yoga in Great Britain). for some people, biofeedback training requires a lot of time and dedication *Brodie, M.J., Schachter, S. C., Kwan, P. (2005) Fast facts: from the person with epilepsy and the Epilepsy 3rd Edition.

B professionals concerned. Helping Your Patient

Helping Your Patient Get the Most out of LONG TERM ILLNESS SCHEME (LTIS) Neurology Appointments All persons with epilepsy are entitled to anti-epileptic medication FREE OF CHARGE through the Long Term When a diagnosis of epilepsy is made the person may Illness Scheme. Where an applicant is eligible for the be unsure of what they need to know and you can Primary Care Re-imbursement Scheme (PCRS was help them prioritise what is important for them and formerly the GMS or Medical Card) this covers help identify their support and information needs. Other issues can be discussed with their epilepsy medication also. The LTIS is granted irrespective of nurse, GP or Brainwave representative at other times. means to all persons NOT entitled to a P.C.R.S Card. For the LTIS apply to your health board for a form to Preparing for the appointment with the be completed by the applicant and a doctor/consultant. neurologist • Before the appointment Epilepsy & Lifestyle Appointments are made months and even years in A diagnosis of epilepsy can have implications for the advance. The patient can programme the time and person’s lifestyle on several levels. date into a calendar on a mobile phone to ensure they remember. Some health insurers operate an Driving email reminder service also. A good witness account combined with an accurate A diagnosis of epilepsy can have implications for the seizure diary is important. Clinics may use slightly person’s lifestyle on several levels. In Ireland, the law different protocols for observing seizures. The currently requires that a person with a diagnosis of Brainwave website has a leaflet on recording epilepsy must be 12 months seizure free before being seizures. Ask the witness to describe what they saw eligible to drive. Licensing for a person with a history rather than trying to interpret the seizure type. of epilepsy currently applies to categories A1, A, B, Before the seizure - what was the person doing, was EB, M or W (motorcycle, car light van, work vehicles). there a trigger or a warning? A doctor’s certification will be required to verify that During the seizure – what was observed; what parts the person is seizure free for driving purposes. of the body were involved; was consciousness lost, A person with a history of epilepsy cannot currently if yes, how long did it last; did the seizure differ be licensed to drive in category C1, C, D1, D, EC1, EC, from previous seizures, if yes, how? After the seizure - Were they sleepy; confused; ED1 or ED (heavy goods vehicles, bus, etc). However upset? How long did the recovery take? a forthcoming EU Directive to be enacted by the end Additional relevant details should be included as of 2010 will alter this ruling in relation to those more necessary. than 10 years seizure free. The EU Directive will also change the rules in relation to certain Group 1 • On the day of the appointment exceptions which presently exist in Ireland. For details Clinics operate timed allocation appointments so it of these exceptions and further information on driving is important to be there at the allotted time for check regulations, see Brainwave’s website “Rights & in. If there is a delay en route let the clinic secretary Entitlements” www.epilepsy.ie. know. Busy clinics may run late. Tests may be ordered or Leisure & Travel the patient may see other team members at the Consultants discretion. Adequate time needs to be Restrictions may be advised in respect of certain allowed for this. leisure and sport activities but every case needs individual assessment depending on seizure control, Checklist for the consultant appointment - be sure to seizure type and degree of supervision. Extreme bring the following: sports are usually inadvisable e.g. Bungee jumping, • The appointment letter paragliding, parachuting etc. Contact sports require • Their anti epileptic medication – so it can be individual assessment but any involving blows reviewed and discussed directly to the head (e.g., boxing) are inadvisable. • A support person who has witnessed the seizures Swimming is possible in a pool (not open current e.g. and can describe them sea, lake, river) under supervision, with a qualified • A list of relevant questions i.e. what do they most pool attendant; it is advisable for visibility to wear a need to know? brightly coloured swimming cap. Cycling depends on • A copy of the seizure diary for their file seizure type and frequency – it is not advisable for • Copies of all current prescriptions those with frequent drop attacks. Helmets must • Documents which require the doctor’s signature always be worn. People with epilepsy may travel by • Recordings of seizures on CD/ DVD/ Mobile phones air, bus and rail but preparation is important as is • A notebook to take notes of guidance given (the good seizure management in these situations. Travel support person might do this). Before leaving insurance is essential in conjunction with the EHIC review these notes with the doctor to ensure card (for European travel). Plans for lone or extended accuracy travel should be discussed with the person’s doctor in advance. For detailed travel advice see the Brainwave website; www.epilepsy.ie. B R A I N W A V E C s H v e s A a i p z t G A W r R a g u E P E P M e y u T e g T e P H M S r o

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E R T E R M F R S N W E B I E F N I O R C E S I E L E S N N A K C I T S S T T L Y L S WHAT YOUR PATIENT AND THEIR CARER NEED TO KNOW ADULT MALES

CAREER PROGRESSION BONE HEALTH LIBIDO SEXUALITY FERTILITY DRIVING SAFELY RELATIONSHIPS EMOTIONAL SUPPORT RELATIONSHIPS LIFESTYLE & TRIGGERS

ADULT WOMEN

CAREER PROGRESSION CONTRACEPTION FOLATES AGES PREGNANCY

COMPLIANCE CHILDBIRTH STIGMA BONE HEALTH COGNITION BABY CARE MEMORY RETENTION MENSTRUATION INSURANCE FERTILITY EMOTIONAL ISSUES SEXUALITY ENTITLEMENTS DRIVING SAFELY LONG TERM ILLNESS SCHEME EMOTIONAL SUPPORT RELATIONSHIPS LIFESTYLE & TRIGGERS YOUNG ADULT

CONTINUING EDUCATION

TEENS EARLY SCHOOL LEAVING EMPLOYMENT VOCATIONAL ISSUES TRAINING EXAMS CAREER OPTIONS PEERS PEERS RISK TAKING RELATIONSHIPS INDEPENDENCE DRIVING LIFESTYLE & TRIGGERS LEISURE & TRAVEL SOCIAL ISSUES INDEPENDENT LIVING DATING LIFESTYLE & TRIGGERS SEXUALITY SEXUALITY Safety in Home Education In the kitchen In respect of state examinations young people • Use cordless appliances and use a with epilepsy may be eligible for reasonable microwave rather than a conventional accommodations in examinations which may

E cooker to reduce the risk of burns. Avoid the entail the use of a separate room if required use of sharp knives, particularly carving. and which also means the person would not be • Use a trolley to move pots and hot dishes penalized for having a seizure during the exam. rather than carrying them, and keep water This provision must be applied for in advance levels in kettles at the minimum to reduce of the June exams and may not come into play scalding risks unless a seizure occurs. See the State In the bathroom Examinations Commission site www.sec.ie. No V • Showers are preferable to baths; use a account is taken of time missed from school or shower chair but not a shower curtain which the cognitive effects of seizures and can lead to entanglement. Hard floor medication on memory and learning. surfaces can cause injury – carpet is better. Brainwave in partnership with the Institute of Avoid glass shelving Technology, Sligo runs a 1 year Pre- In the bedroom employment Training programme Training For • Top bunks should be avoided and if sleep Success (TFS). To enter you must be a person A seizures occur, a ventilated pillow (supplied with epilepsy, be registered with FÁS and be free to new Brainwave Members) is recom- capable of independent living. For further mended (or no pillow at all), instead of soft information on TFS contact Honor or Maire at pillows which may pose a hazard 071 9155303. This programme is funded by • Freestanding furniture and fittings should be FÁS. secured in case of seizures involving wandering Employment In the living room W • Trailing flexes should be bundled together or Employment prospects are enhanced by good tacked to skirting boards seizure control. There are only a few areas • TV’s and other equipment should be secured currently not open to people with a history of or preferably wall mounted. Avoid glass epilepsy, these include becoming a tables and glass door panels. Open fires professional pilot, HGV driver (due to change need a surround fireguard as used for young soon), and train or bus driver. Admission to children the armed forces and emergency services may N • Radiators with sharp edges can be covered be difficult also. While most people do with guards with curved hoods manage to work at what they choose, the • Ground level accommodation is safest. degree to which their seizures are controlled is Where there are stairs it may be wise if the important. A person whose seizures are well controlled may have no difficulty working as a

I person has frequent seizures for them to have a downstairs bedroom and bathroom child care worker or teacher but there could be or at least to limit their use of stairs so as not supervision issues in the case of a person to make to unnecessary use of them. For whose seizures are uncontrolled. more detailed advice see www.epilepsy.ie Living Independently Lifestyle Management In conjunction with sensible precautions,

A lifestyle management and safety guidelines, Lifestyle triggers for seizures include stress, there are some additional measures the skipped meals, missed sleep, alcohol, missed person can take to maximise their medication, or a combination of these, independence. For adults living alone there especially when a person is out of their usual are alarms which can detect seizures with pattern at weekends, holidays and travelling to movement and wandering both around the different time zones. Other triggers may include house and also in sleep. These may be linked

R street drugs and energy drinks which contain to a monitoring centre or may dial pre- large amounts of caffeine. A combination of programmed numbers of key holders nearby healthy diet with regular meal breaks, adequate who can come to the person’s assistance. sleep and a programme of relaxation and stress When out and about, it is advisable to wear an prevention is always advisable. Physical epilepsy identity bracelet which is supplied triggers may be less avoidable; these include free to new Brainwave members and is linked illness, fever, pain, periods, some medication

B to a 24 hour confidential bureau which keeps interactions, and flicker and glare for those who details of the person’s treatment, next of kin are photosensitive. and other relevant details which may be required by casualty staff. Brainwave The Irish Epilepsy Association Aims and Objectives of the organisation

Brainwave The Irish Epilepsy Association is the National member led charity for people with epilepsy in Ireland. Brainwave has offices located throughout the country.

Vision Brainwave’s vision is to achieve a society where no person’s life is limited by epilepsy

Mission Brainwave The Irish Epilepsy Association is committed to working for, and meeting the needs of everyone with epilepsy in Ireland and their families and carers l To provide support, information and advice to l To assist in the development of support groups people with epilepsy for people with epilepsy in the area of training l To provide information and advice to health and employment professionals in dealing with epilepsy l To provide information on issues related to driving: insurance, changing legislation l To improve public understanding of epilepsy (in l To provide practical aids to people with epilepsy order to eliminate fear and prejudice) through (pillows, bracelets) awareness campaigns and education l To operate as a public forum and an advocate programmes for the condition of epilepsy l To undertake, encourage and assist research l To raise funds to support its work in an into the causes of, cure for and management of awareness-creating manner epilepsy and into the social and psychological effects of the condition l To promote legislative and civil rights for people with epilepsy and to campaign to eliminate all discriminatory practices and policies affecting them

Resource List: International Bureau for Epilepsy (IBE) - www.ibe-epilepsy.org Epilepsy Foundation USA – www.epilepsyfoundation.org Joint Epilepsy Council of UK and Ireland (JEC) – Neuroscience for Kids – www.jointepilepsycouncil.org.uk http://faculty.washington.edu/chudler/neurok.html International League Against Epilepsy (ILAE) – Beyond Epilepsy – www.livebeyondepilepsy.com www.ilae-epilepsy.org Matthew’s Friends – www.matthewsfriends.com The Republic of Ireland Epilepsy and Pregnancy Register – www.epilepsypregnancyregister.ie Neurological Alliance of Ireland – www.nai.ie Epilepsy Action UK – www.epilepsy.org.uk EpilepSy Nurses Association UK (ESNA) - www.esna-online.org.uk The National Society for Epilepsy UK (NSE) – www.epilepsynse.co.uk International League Against Epilepsy UK (ILAE) – www.ilae-uk.org.uk The National Centre for Young People with Epilepsy UK (NYCPE) – www.nycpe.org.uk Beaumont Hospital Epilepsy Research Group – www.epilepsyprogramme.ie Epilepsy Scotland – www.epilepsyscotland.org.uk IrishHealth.com Epilepsy Clinic - Epilepsy Bereaved UK – www.sudep.org www.irishhealth.com/clin/epilepsy B R A I N W A V E THE IRISH EPILEPSY ASSOCIATION

Head Office Brainwave - The Irish Epilepsy Association 249 Crumlin Road, Dublin 12 TEL: 01 4557500 Email: [email protected] Web: www.epilepsy.ie

Training: Training For Success Sligo Institute of Technology, Sligo TEL: 071-9155303 Email: [email protected] and tansey.maire@it - sligo.ie

Regional Offices: The Ground Floor, St Canices Hospital, Kilkenny TEL: 056 7784496 Email: [email protected]

35 Washington Street, TEL: 021 4274774 Email: [email protected] and [email protected] c/o OCIL, Clonminch Road, Tullamore, Co. Offaly TEL: 057 9346790 Email: [email protected]

9/10 The Paddocks, Ballydowney,Killarney,Co. Kerry TEL: 064-6630301 Email: [email protected]

Grand Central Complex, 2nd Floor, Canal Road, Letterkenny, Co. Donegal TEL: 074 9168725 Email: [email protected]

St. Vincent’s Business Park, Finisklin Road, Sligo TEL: 071 9154625 Email: [email protected]

Ozanam House, St. Augustine Street, Brainwave would like to thank the following funders whose TEL: 091 568180 support enabled the production of this information re - Email: [email protected] source: Social Services centre, Henry Street, Limerick • UCB (Pharma) Ireland Ltd. who have provided an unre - TEL: 061 313773 stricted educational grant towards this project Email: [email protected] • • Everyone who represented Brainwave in the 2008 Dublin The Dundalk Club, Roden Place, Dundalk, Co Louth Women’s Mini-Marathon TEL: 042 9337585 Email: [email protected]