Issue 13, Summer 2015

RESEARCH

Scientists identify a genetic cause for photosensitivity Photosensitive epilepsy, page 6

FAMILY

How canine epilepsy could help us to understand more about human epilepsy Dogs and epilepsy, page 8

MEDICAL

Is epilepsy affecting your sex life? Epilepsy, men and sex, page 15

www.epilepsysociety.org.uk EPILEPSY REVIEW

Three billion has been a significant number this summer. First the spacecraft New Horizons travelled three billion miles to send back images from Pluto, the last unexplored major body in our solar system. The excitement of scientists at NASA rippled around the world. Closer to home, there were ripples of excitement on a smaller, but still significant scale, as research into the three billion bases that make up our DNA, shone a light on the genetics of epilepsy.

While space exploration reveals the secrets It’s a jigsaw where we don’t even know of a world at the far edge of our solar system, how many pieces will be in the final picture. epilepsy research is beginning to reveal the Our research is ongoing and you can help us secrets deep within our DNA, secrets that are to shape the direction it will follow by taking slowly helping to identify the causes of epilepsy. part in our online research survey. When it Our researchers at Epilepsy Society have comes to epilepsy research we want to know made ground-breaking progress in three what is important to you, what you hope key areas associated with epilepsy: sudden we will achieve and how this could make unexpected death in epilepsy (SUDEP), a difference to your life. You can find out photosensitivity and the ketogenic diet. how to take part in the survey on page 23. Using the most advanced technology, our Research and exploration are full of researchers can look in minute detail at the surprises and one revelation that has caught genomes of people with epilepsy and begin NASA scientists off guard is news that Pluto to unravel the complex genetic architecture has a plasma tail caused by the planet's that contributes to the condition. This is atmosphere being stripped away by solar helping scientists begin to understand why winds. This edition of Epilepsy Review reveals some people could be at a higher risk of that epilepsy too can have a tail. Turn to SUDEP, why some people may be sensitive page 8 to read about canine epilepsy and to flashing lights and why some people how research into dogs with epilepsy with drug resistant epilepsy respond well – and tails – could contribute to a better to the ketogenic diet while others don’t. understanding of the condition in humans. Director of clinical genetics at Epilepsy Society, Professor Sanjay Sisodiya is quick to point out that these are all small steps. There are no absolute answers yet, but Nicola Swanborough pieces of the jigsaw are gradually emerging. Editor

FRONT COVER Editor Nicola Swanborough Epilepsy Society Best friends: Tina Thompson Email [email protected] Chalfont St Peter, Bucks SL9 0RJ You can view more of Tina's work Telephone 01494 601 417 www.epilepsysociety.org.uk at www.epilepsysociety.org.uk/ To receive Epilepsy Review, email us at the Registered charity no 206186 artists-and-epilepsy address above, or see back cover A company limited by guarantee Registered number 492761 England Views expressed by contributors in this publication are not necessarily those of Epilepsy Society Designed by Ben Dugdale Design www.bendugdale.com Information may change after printing and is not Printed by Lefa Print a substitute for advice from your own doctors. www.lefaprint.com Epilepsy Society is not responsible for any actions Printed on chlorine free paper taken as a result of using this information from sustainable forests NEWS 3

AEDs RESEARCH Perampanel offers Breakthrough greater hope A new treatment option is offering in understanding hope of better seizure control and potential seizure freedom for people causes of SUDEP with drug-resistant generalised tonic clonic seizures (GTC). Perampanel, developed by Eisai and licensed in the UK in 2013 for the Scientists have made an important and a greater genetic understanding treatment of focal seizures, has now breakthrough in understanding the will help identify precision treatments, been approved for use in generalised causes of premature death in people as well as pinpointing the causes and seizures that affect both sides of the with epilepsy. risk factors associated with the condition. brain at once. Researchers, led by those from This study is the largest of its kind People with these seizures often fall Epilepsy Society and University College so far, analysing the sequences of resulting in potential physical injuries. London, have discovered that an 18 people who died of SUDEP, Frequent generalised tonic clonic seizures individual’s genetic make-up may 87 living people with epilepsy and can also increase a person’s risk of Sudden contribute to the risk of sudden 1,479 non-epilepsy disease controls. Unexpected Death in Epilepsy (SUDEP). unexpected death in epilepsy (SUDEP). Sanjay Sisodiya, director of clinical Until recently there have been SUDEP causes the death of 600 genetics at Epilepsy Society and limited medications licensed for these people each year in the UK. It is professor of neurology at University seizures. But now the European thought to be more likely in people College London said: ‘This discovery is Commission has granted marketing with frequent convulsive seizures, an important step in understanding the authorisation approval for perampanel, than in those with infrequent seizures. causes of sudden death in epilepsy. It for use as an add-on therapy for This latest breakthrough brings us gives the scientific community a further generalised tonic clonic seizures in a step closer to determining risk in hint at how the genetic make-up of a adults and adolescents over 12. individual people, with the eventual person with epilepsy might contribute Clinical data for the drug, was aim of preventing deaths through to the risk of this devastating outcome. presented at the European Academy personalised diagnosis and treatment. ‘As we look towards more accurate of Neurology in Berlin and showed: By analysing the genes of a person estimation of individual risk, more – 30.9 per cent of people taking with epilepsy, medical professionals personalised treatment and perhaps perampanel were free of may, in the future, be able to identify prevention of SUDEP in the future, we GTC seizures compared with the heightened risk of SUDEP in need to test our findings further and 12.3 per cent taking a placebo advance, contributing towards the would welcome further collaboration.’ – there was a greater reduction quest for prevention. This research was funded by Dravet in GTC seizures in those on Genetic sequencing is playing Syndrome UK with contributions from perampanel (76.5 per cent) an increasingly important role in other bodies. SUDEP can occur in any compared to those who took healthcare, as it may help patients epilepsy, but is more common in some, placebo (38.4 per cent) receive more tailored treatment for such as Dravet Syndrome, a severe – people treated with perampanel had their conditions. Epilepsy affects more form of childhood epilepsy. an improved quality of life compared than half a million people in the UK www.epilepsysociety.org.uk/sudep to those taking a placebo.

Epilepsy app for healthcare professionals Epilepsy Society is launching will enable clinicians to access its new app for healthcare up-to-date information about professionals to help support them all aspects of epilepsy care and in treating and caring for people management at the click of with epilepsy. The Epilepsy Manual a button. It has the potential will be free to download and to have a real impact on the will provide instant access to lives of people with epilepsy.’ comprehensive information about The app will be available this epilepsy for non-specialists. summer on Android and iOS: Jenny Nightingale, epilepsy www.epilepsysociety.org.uk/ specialist nurse said: ‘This resource manual 4 NEWS

GENETIC RESEARCH A&E GOVERNMENT Ketogenic diet Postcode lottery Backing genomics There is a wide disparity in the The world’s only minister for life treatment of people with epilepsy who sciences, George Freeman, has are taken to A&E following a seizure, underlined the Government’s a recent study reveals. NASH – the commitment to genomics and its National Audit of Seizure management support for centres of excellence in Hospitals – looked at the services that are promoting innovative and care available to people with healthcare across the UK. epilepsy and found considerable Genomics is the diagnosis and variability across the entire care path treatment of an individual by looking with the need for more organised at their DNA. This is being pioneered A new study has highlighted the and accessible care. in the treatment of epilepsy at importance of exploring further The study looked at over 4,500 Epilepsy Society’s Chalfont Centre genetic factors which may attendances in 154 emergency in Buckinghamshire. explain why some people with departments across the UK. Speaking in Westminster at the epilepsy respond to ketogenic Assessments were often found to be launch of the All Party Parliamentary diet therapies while others don’t. incomplete. Witness statements were Group for Life Sciences, the UK Ketogenic diet therapies only taken in 75 per cent of first seizure parliamentary under secretary of state switch the body’s energy fuels patients. In this same group, only for health said: ‘We must unlock the from glucose to ‘ketone bodies’. 55 per cent were referred to a power of genomics and data and This is particularly beneficial for neurologist or epilepsy specialist and bring them more quickly to patients. those with glucose transporter only 27 per cent were given advice We need to embrace challenging type-1 deficiency syndrome on further seizure management. innovation that will deliver better (GLUT1-DS) where glucose is This was the second NASH audit. health. We need to diagnose earlier, unable to cross the blood-brain For the sites which took part in both, treat smarter and embrace technology. barrier into the brain. This there was a slight improvement in Kit Malthouse, MP and chair of the deficiency is caused by mutations services. NASH hopes to raise the APPG for Life Sciences said the new in the gene SLC2A1. profile of epilepsy and encourage group was a fantastic opportunity to People with mutations in this clinicians and commissioners to raise awareness of the life science gene tend to respond more include it when planning services. industry in parliament. favourably to the ketogenic diet therapies, with some achieving seizure freedom. NEUROLOGY SERVICES SEIZURES But the study, led by Epilepsy Society’s director of clinical Failing patients First aid course genetics Professor Sanjay Sisodiya, A new report by the National Audit Do you feel confident in managing has shown that other genetic Office (NAO) has criticised the your own epilepsy? Do you feel factors beside mutations in the government for failing to improve confident about supporting a friend SLC2A1 gene may be involved in a services for people with neurological or family member with their epilepsy? good response to ketogenic diets. conditions, including epilepsy. Would you know when to call an The research team looked at According to the NAO, the ambulance in response to a seizure? 246 people on a ketogenic diet government has failed to improve Epilepsy Society is working with the therapy who had not been access to services, collection of University of Liverpool to develop diagnosed with GLUT1-DS. Their neurology data and better care a short course on seizure first aid. Now seizure frequency was recorded planning. Only the appointment of researchers are looking for people with at regular intervals. a clinical lead for neurology and the epilepsy to try the course with a family Three were seizure-free at creation of neurological networks member or friend so they can give their every interval, but only one had have been labelled as ‘good progress’. feedback. The study is open to anyone an SLC2A1 mutation thought to The Neurological Alliance, over the age of 16 with epilepsy who is be undiagnosed GLUT1-DS. The supported by Epilepsy Society, is taking epilepsy medication. To take part other two had no mutations in calling for a full review of neurological you must have visited A&E in recent SLC2A1. services. Arlene Wilkie, chief executive years for your epilepsy. The courses will Professor Sanjay Sisodiya of the Neurological Alliance, said: ‘It is be in English in Liverpool so you will said: ‘Our study shows that unacceptable that so little progress has need to live in the North West. To take a favourable response to been made. It only adds to the sense part or to find out more information, ketogenic diet therapies cannot that people with neurological conditions call 0151 794 5993 or email seizure. be solely explained by this gene.’ are not seen as a priority in today’s NHS.’ [email protected] 5

Epilepsy apps – man and dog’s best friend News in brief

In 2014 70% of 211 commissioning groups had no plans to assess needs of neurology patients. Page 4

Only 55% of first seizure patients in emergency departments referred to a neurologist. Page 4 The Royal Veterinary College has worked with Epilepsy Society to produce an app for the WHO owners of dogs with seizures. Read about the parallels – and Global epilepsy differences – between canine This award is a great Epilepsy Society’s medical director and human epilepsy and find out how research into one could honour which I dedicate Professor Ley Sander has welcomed a to all the children with new World Health Assembly resolution benefit the other. urging countries around the world epilepsy with whom An app for dogs? Page 8 to strengthen their efforts to provide I have had contact. The latest apps, page 20 care for people with epilepsy. Professor Sander works with the World Health Organization’s (WHO) SEIZURE CONTROL Professor Helen Cross, Prince global campaign against epilepsy to of Wales Chair of Childhood improve the way epilepsy is managed Omega-3 Epilepsy, on receiving an OBE in resource-poor countries including A low dose of omega-3 fatty acids China, Brazil, Ecuador, Georgia, contained in fish oil capsules may Bulgaria, Kenya and Senegal. help reduce seizure frequency by up to He said: ‘It’s excellent news that 33 per cent in those with uncontrolled delegates at the World Health Assembly, epilepsy. This is according to a small including those from the UK, have study by researchers at UCLA School of endorsed this resolution in support Medicine, Los Angeles. The scientists $137,000 awarded by of improving epilepsy care and research caution however that the results are Health Research Council for people across the globe. Now that preliminary and a larger study is in New Zealand to the resolution is approved, epilepsy and needed to confirm findings. Previous the issues surrounding it will be firmly studies using high doses of omega-3 develop nose-to-brain in the spotlight.’ fatty acids showed no clear benefits. epilepsy drug delivery. 6 RESEARCH Photosensitive epilepsy

One in 20 people with epilepsy also suspected one of these may have been causing her epilepsy. Working as part of an international collaboration, has photosensitive epilepsy. Now Professor Sisodiya then began to look at these genes in a far researchers at Epilepsy Society, working larger group of people with epilepsy. Mutations in the gene CHD2 had already been linked to photosensitivity in some with colleagues across the world, have very rare epilepsies, so researchers set out to compare the for the first time identified a genetic sequence of this gene among participants in their study. Research was carried out on 580 people with various types cause for this type of epilepsy. of photosensitive epilepsy and nearly 34,500 people without the condition. Participants came from nine different countries. ‘Warning – the following report may contain flash Researchers identified 11 unique variants in CHD2 (10 of photography.’ Sound familiar? Without doubt, this is one them new variants) among the 580 people with photosensitive of the most frequently broadcast alerts on British television. epilepsy, suggesting that disruptions in this gene could also Whenever a bank of photographers are gathered in numbers be associated with more common forms of photosensitive – a royal baby, David Beckham’s 40th birthday, the arrival epilepsy. The scientists believe the photosensitivity may of One Direction at the Brit awards – the newsreaders be caused by the mutations partially, or fully, deactivating are never far behind them, waving a proverbial red flag. the gene and causing heightened light sensitivity. From Huw Edwards and Fiona Bruce through to Professor Sanjay Sisodiya said: ‘This finding helps to George Alagiah, the warning is the same. There is rarely explain photosensitivity in a small percentage of people any mention of epilepsy, but the underlying message and will eventually help us understand why they have it is clear: this report could cause a seizure for anyone and maybe lead to rational treatment. But it also shows who has photosensitive epilepsy. that one can find answers!’ Photosensitive epilepsy is a type of reflex epilepsy, He explained that although the functions of CHD2 are triggered by flickering or intermittent light or repetitive not yet fully understood, they know that the gene does patterns. It is the most common type of reflex epilepsy but not instruct proteins that are crucial for directly generating in broader terms it is still comparatively rare. While 1 in 100 nerve impulses – a trademark of epilepsy. people has epilepsy, less than five per cent of them have ‘This opens up new avenues of research into human photosensitive epilepsy. Yet the public perception is that cortical excitability,’ continued Professor Sisodiya. ‘This is an the condition is much more common – largely due to the area of research that we are focusing on at Epilepsy Society number of warnings, a regulatory requirement by Ofcom. Research Centre. Working with collaborators, we will now Now, however, groundbreaking research can tell us be looking for further mutations that may cause exactly why flickering lights can cause seizures in some photosensitivity and cortical excitability.’ people. Researchers at Epilepsy Society, working as part The pioneering research isn’t the end of the story. It of an international consortium, have identified a genetic doesn’t mean that the six-o’clock news warnings will stop mutation which is a risk factor for some people with but it does mean that scientists are starting to unlock the photosensitive epilepsy. genetic code of particular types of epilepsy in some people. The researchers, led by Professor Sanjay Sisodiya, have They are now able to pinpoint an exact genetic mutation been investigating the underlying cause of photosensitive that means a bank of photographers with flashing lights, epilepsy for some years. They carried out a DNA test on or equally strobe lights, certain video games, films and a woman with photosensitive epilepsy that showed a YouTube clips, may spell trouble for some people with deletion involving a small number of genes. The researchers photosensitive epilepsy. About photosensitiveepilepsy Locating CHD2 cause ofphotosensitiveepilepsy. CHD2, have been identified asa 15. Mutationsinoneofthesegenes, in particulargenesonchromosome conditions arerelatedtochanges the DNAinyourcells.Manygenetic (base pairs),representing3%of up of102millionDNAbuildingblocks on chromosome15.Thesearemade There arebetween600-700genes Chromosome 15 identified as a cause of photosensitive epilepsy, are found. CHD2 spansover127,000basepairs.Thisiswherethe10 newuniquevariants, CHD2 and 92,900,320. 93,028,006 pairs 15, between base long arm ofchromosome the on chromosomes arrangedinpairs. Each cellinyourbodyhas46 Your chromosomes frequencies of 3 and 30 hertz (flashes per second) are most likely to trigger per second)aremostlikely to trigger may besensitive outsidethisrange. CHD2 is located at position 26 CHD2 islocatedatposition26 photosensitive epilepsy, but some photosensitive epilepsy,butsome a seizure in 60% of people with a seizurein60% ofpeoplewith 1 in 20 people with epilepsy 1 in20peoplewithepilepsy has photosensitiveepilepsy. Flashing lights between the Flashing lightsbetweenthe

15p13

15p12

15p11.2

15q12

is morethanamodernphenomenon. 15p13 to prominence in the 1950s and was to prominenceinthe1950sandwas 13 19 known as ‘television epilepsy’ but it known as‘televisionepilepsy’butit 15p12 6 1

Photosensitive epilepsy first came 15p13.2 children have a 25% chance children have a25%chance

photosensitive epilepsy, her photosensitive epilepsy,her 15p11.2 Photosensitivity can also be Photosensitivity canalsobe hereditary. If a woman has has woman a hereditary. If 15q14 14 20 7 2 15p15.2

of developing it. 15q12 15q21.1 15 15p13.2 8 3 15p21.3 21 Autosomes 15q14 15q22.2 15p15.2 9 15p22.32 15q21.1 22 15q23 10 15p21.3 16 15p24.2 15q25.1 15q22.2 Sex Chromosomes 15p22.32 female 15p25.3 XX 11 17 15q23 4 15p24.2 15q26.2

15q25.1

male XY 12 18 15p25.3 5

15q26.2 turning on.' normally flickering while also beanissue duetothem response to movement can places thatonlyturnon in flickering. Lights in public friends andfamilyfor new lightischeckedby is flickering lights, so every are alsoissues. and surprisinglyceilingfans looks onthebus.Fireworks been givensomestrange eyes immediatelyandhave off water. Ihavetocovermy sunlight throughtreesor though is the flickering of The mostpeculiartrigger means nocinemaeither. the roomaswell,sothat sure allthelightsareonin films or TV I have to make flashing images. When I watch there isawarningabout I havetocovermyeyeswhen When watching TV or films bars Igotoduethelights. and havetobecarefulwhich nightclubs likemyfriendsdo means thatIcan’t goto element ofmyepilepsy however Iwaswrong. applied tostrobelighting, was commonandonly time Ithoughtphotosensitivity generalised epilepsy. Atthe at 15.Ialsohaveidiopathic photosensitive epilepsy 'I wasdiagnosedwith how itaffects herlife. epilepsy. Here sheexplains Somerset, hasphotosensitive Sophie Harries,19,from Sophie’s story My main trigger though My maintriggerthough For methephotosensitive

7 8 FAMILY

Professor Holger Volk and Dr Rowena Packer at the CT scanner with Betty, almost a staff member at the RVC. Tests for dogs with seizures include MRI scans, EEGs and CT scans. Dogs usually have to be mildly sedated for tests, although co-operative dogs can sometimes An app for dogs? have an EEG without sedation.

... well not quite, but certainly an app How common is epilepsy in dogs? for dog owners. The Royal Veterinary Rowena It is very common. In fact it is the most common long-term neurological condition in dogs. There are College has worked with Epilepsy 9.4 million dogs in the UK and 50,000 of them have Society to develop the first ever app epilepsy. That is a prevalence of 0.6 per cent. Certain breeds seem to be more likely to develop epilepsy such as Border that allows dog owners to monitor Collies, German shepherd dogs, Staffordshire bull terriers their pets with epilepsy. The RVC and Labrador retrievers. Studies show that male dogs are more prone to seizures than females. Pet Epilepsy Tracker is based on the charity’s epilepsy toolkit app. What sort of seizures do dogs generally have? Holger We tend to see dogs that have focal seizures with Canine epilepsy experts Professor secondary generalised seizures. If a dog is lying on the Holger Volk and Dr Rowena Packer ground shaking, that is very easy to detect. It would be difficult to detect if a dog was experiencing lapses in hope that not only will it bring a consciousness, sight or vision. As in humans, there is often a better understanding of seizures in genetic component to the epilepsy or it could be as a direct result of a stroke, brain tumour, cortical inflammation or dogs but it could also contribute to a hydrocephalus. We see a lot of dogs with seizures caused wider understanding of the condition by head injuries from traffic accidents or from running into trees and other obstacles. in humans. Here they talk about what epilepsy is like for our canine friends Does epilepsy affect dogs in the same way that it affects humans? Holger Very much so but there are differences. As with people, seizures in dogs are unpredictable and often uncontrollable. In humans, two thirds of people with 9 epilepsy will respond to anti-epileptic medication. In dogs Recently a new drug has been introduced - imepitoin. only one third respond well to this treatment. Some years ago this was prescribed in human epilepsy but it Dogs with recurrent seizures have an increased risk of was not found to be suitable for people who smoked and experiencing fear, anxiety and depression. They are also more so was withdrawn. However it is a very safe drug for dogs likely to develop behavioural changes, have learning difficulties, and may have the potential to help with fear and anxiety. develop defensive aggression and to have a reduced quality Interestingly, in the veterinary field we take a different of life. Even when the medication works, there can be side approach to prescribing medication in dogs. In humans, the effects, just as in humans. Anti-epileptic drugs can make protocol is always to start low and go slow whenever a new dogs sleep a lot, drink a lot and need to go to the toilet or additional drug is introduced. With dogs we tend to start much more. This all impacts on their quality of life. with the dose for optimum seizure control and tolerate The stigma around epilepsy is very different for people and a bit of initial wobbling or co-ordination problems while dogs. I notice on the internet that if someone posts a video the dog is adjusting to the medication. of a person having a seizure there are often a lot of insensitive and negative comments. If someone posts a video of a dog Are there any other treatment options for dogs? having a seizure, there will be more sympathetic comments. Holger We have carried out a small study into the use of People seem to be much nicer to dogs than they are to a modified version of the ketogenic diet in 21 dogs. The their own species. ketogenic diet relies on inducing ketosis so that the body obtains its energy from fat rather than glucose. It is actually How does epilepsy impact on the dog’s owners? very hard to induce ketosis in dogs as they are descended Rowena Studies have shown that when a dog has a from wolves and are biologically programmed to survive a seizure, not only does the dog’s stress levels rise but so degree of starvation. Feeding them regularly as we do is not does the owner’s. It can be very distressing to witness a natural for dogs. dog having a seizure. Looking after a sick pet can present We trialled a version of the ketogenic diet that allows for an emotional burden, as well as practical issues such as more carbohydrates and protein than the traditional high constantly medicating the dog, checking for side effects fat ketogenic diet. More than half of the dogs had more and coping with ongoing financial costs. than 50 per cent reduction in seizure frequency when on Many owners are reluctant to start AED treatment with the diet. Fourteen per cent became seizure free. their pets for fear of reduced quality of life. Side effects from AEDs were one of the top reasons cited by around one Can we learn anything about epilepsy in humans third of owners for a decreased quality of life in their dogs. by looking at epilepsy in dogs? Epilepsy in dogs can present specific issues for dog Holger Most definitely. Research at our canine epilepsy owners who rely on dog sitters and dog walkers during clinic showed that the more accurate indication of whether the working week. Often they are unable to find someone a dog will achieve seizure freedom is the closeness of its who is willing to take on a dog that is likely to have a seizure seizures rather than the number of seizures it is having. and this can make life very difficult. Similar results have been found in human epilepsy, Holger We also see owners who totally change their lives highlighting the dog as a naturally occurring model of around to look after their dog. The bond between owner epilepsy. Our research into drug treatments for epilepsy and dog can be very strong, especially when they spend in dogs could help to further our understanding of the so much time with them. condition in humans. Of course all dog owners hope that treatment will result Our new app for dogs with epilepsy will allow owners in complete seizure freedom for their pet, although to record patterns of seizure activity and medication diaries statistically there is only a 33 per cent chance of this and send this directly to their vet. It will also give them the happening. Many consider one seizure every three months opportunity to share their records anonymously with the to be tolerable for the dog. In some cases, where this is not Royal Veterinary College. This could revolutionise our achievable and the owner feels the dog is suffering, they understanding of the way that epilepsy progresses in may make the difficult decision to elect euthanasia. individual dogs and provide data for long-term studies As a vet it is very important to interact with the dogs we of seizure activity in canine epilepsy. see in order to build up their trust. Stroking them and talking In turn, this could advance our understanding of to them helps to build up a bond and of course, it is hard human epilepsy. not to become attached to the dogs. This makes it very hard when it is bad news.

Do dogs take the same anti-epileptic medication as people? Professor Holger Volk is professor of veterinary Holger Much of the time yes. Dogs can be prescribed neurology and neurosurgery and clinical director levetiracetam, zonisamide, gabapentin, pregabalin and of the RVC Queen Mother Hospital for Animals. topiramate but the two most commonly prescribed anti-epileptic drugs for dogs are phenobarbital and Dr Rowena Packer is clinical investigation research potassium bromide. assistant at the RVC. 10

I wanted to make sure that if it a relatively new drug thought to be happened again, I would be prepared. the least invasive of the epileptic drugs. Casey’s seizures are grand mal. She For 18 months her epilepsy seemed falls to the ground, starts paddling her to be well controlled and then she legs, loses control of her bowels and started having breakthrough seizures, starts snapping. It is very distressing to sometimes two in a day. She is now witness. The seizures often happen as slowly changing to phenobarbital. The she is falling asleep or coming out of side effects from the drugs mean she a deep sleep. They always seem to be is a little overweight and can be quite when she is resting. When she is busy sleepy. Since starting phenobarbital and active they don’t seem to bother her back legs seem quite wobbly and her so much. That is one of the reasons uncoordinated. She also has a lot of why we got a second dog, Enzo, to play head twitches which we hope will with her and help keep her occupied. diminish as she adapts to the new drug. She loves to compete in flyball, a Casey has to take her medication at four-dog relay race over jumps, and 12-hourly intervals on the dot – 6am her epilepsy never bothers her then. and 6pm so there are no lie-ins for us. Casey’s seizures usually last two to She is very good at reminding us about three minutes and tend to leave her her medication. Quarter of an hour very tired and hungry. She can also before it is due, she will either whimper become extremely hot so we try to to wake us up or tap us on the arm. cool her down by placing ice on her She is a very intelligent dog. Casey back and between her shoulders. now has to have regular blood tests When she comes out of a seizure to check her therapeutic drug levels. she doesn’t know where she is and This is very stressful for her. starts sniffing everything as though I have given up work so that I can A dog called Casey she has only just arrived. She doesn’t look after Casey full time. She is totally Casey is a beautiful three-year-old recognise Enzo or our cats. After about reliant on my husband Shane and Border Collie. She had her first seizure 40 minutes of stroking her and talking myself. The emotional, physical and at 11 months and is going through her to her she usually falls into a very deep, financial burden of looking after her first change of anti-epileptic medication. hard sleep for a couple of hours. When can be quite difficult to cope with but Her owner, Fran Agnew, talks about she wakes up she is as right as rain. We we wouldn’t want to be without her. the impact of Casey’s seizures take her out for a run and you wouldn’t She is our responsibility and we want know anything has happened to her. her to have the best life possible. ‘The first time Casey had a seizure Casey didn’t have her second When Shane and I got married I thought she had been poisoned. seizure for nine months and then two years ago, we left Casey with a She was sick and shaking. I put my they started to come more frequently. neighbour while we went to Mauritius hand in her mouth thinking I needed Although the vet thought from the for our honeymoon While we were to remove something toxic and she bit outset that it was likely she had away she had two seizures. Now we me quite badly. I was mortified to see epilepsy, we wanted to see if they have bought a caravan so that we can her like that and really panicked. The could be controlled another way and holiday in the UK with Casey and, of neighbours heard me screaming and have all the tests to rule out other course, Enzo. We are hoping that in came and took control. After that causes. It was only after a few more time, Enzo might learn to recognise I went on to Google to find out months when she started having two Casey’s seizures and be able to warn everything I could about seizures. in a week that she was put on imepitoin, us when they are going to happen.'

Epilepsy app – man and dog’s best friend

Epilepsy toolkit app for people RVC pet epilepsy tracker for dogs Epilepsy Society Royal Veterinary College Available from: App store or Google Play (search: epilepsy toolkit) Available from: App store or Google Play

Features include: Features include: – seizure diary and medication reminder – seizure types, diagnosis and managing epilepsy – medication details, record and photograph your drugs – seizure diary – video recording your seizures – medication reminder – first aid and recovery position guide. – option to share date for research purposes. YOUR GUIDE 11

When was the last time you called effects from drugs and living with in to see your local pharmacist? The seizures. What is more, community chances are it was when you picked pharmacists are often open longer up a prescription for your epilepsy than many GP surgeries, are generally medication. But pharmacies can offer just a short walk or drive away, so much more than a dispensing and you don’t need to make an service for drugs. Pharmacies are appointment – you can just drop in. an integrated part of the NHS at the Eisha Gosrani explains why getting heart of the community, offering to know your pharmacist makes expert advice on medications, side sense for anyone with epilepsy

Your local pharmacy

Getting to know your local number of AEDs and with the pharmacist could help you to least side effects. Finding the manage your epilepsy better and right drug at the right dose can make sure that you are getting sometimes take time as it differs the most out of your medication. in each person. The role of the community If you have a query about your Eisha Gosrani is Epilepsy Society’s pharmacist is often seen as purely medication, the dose you have resident pharmacist. Her work dispensing drugs prescribed by been prescribed, how and when includes dispensing new medicines the GP or other prescriber. But to take your drugs or whether and changes to anti-epileptic pharmacists can play a key role in they are likely to interact with drugs, giving patient medication delivering healthcare in the high other medication, your counselling and discussing street, neighbourhood centre pharmacist will be able to help. treatment plans. or the supermarket. Alongside medicinal advice, Pharmacists train for five years, pharmacists can help and advise including four years at a school of on wider health and well-being pharmacy. This means they have issues such as healthy eating, an in-depth knowledge of how exercise and losing weight. They your anti-epileptic drugs (AEDs) can provide the type of support – and other medicines – work and information to help you and the potential effects of a self-manage your health without medication or combination you having to visit your GP. of medications. Over the page we look in AEDs work best when taken detail at some of the services regularly at around the same pharmacists provide and how time every day. The aim of any they can help you. And on treatment is to stop seizures with page 20 you will find details the lowest dose of the fewest of the Find a pharmacy app. 12

YOUR LOCAL PHARMACY SERVICE

All pharmacies provide professional, social services or the following services voluntary organisation, they will refer you to the most appropriate Dispensing medication Of course service to help you to manage The stats the primary role of the pharmacist your condition. is to dispense your medication, make sure that you understand Some pharmacies provide how and when to take it and to these additional services make sure that your medication is Over compatible with any other drugs Delivering prescription medication you may have been prescribed. to your home The pharmacy may arrange to collect your prescription 3m Dispensing repeat prescriptions from your GP, where necessary, MURs at pharmacies You can get a prescription from and may deliver your medication in England 2013/14 your GP for up to a year so that you to your home. can get your medication dispensed on a regular basis at your local Health checks Some pharmacies pharmacy without having to have the facilities to carry out make repeat visits to your GP. blood pressure tests, cholesterol tests or blood glucose tests. Safely disposing of unused or out of date medication If your medication Minor ailments service Pharmacists number of times is out of date, unwanted or left over can provide information on how to people visit their after you have stopped taking it, your treat minor health conditions such pharmacy each year pharmacist can dispose of it safely. as coughs and colds, stomach Never throw away a medicine in the upsets and headaches. bin, burn it or flush it down the toilet as this can harm the environment. Medicines use reviews This is a free NHS consultation with your Interactions between different pharmacist about your medication. 52,500 medications Your pharmacist can You can read more about registered advise on possible interactions medicines use reviews on page 14. pharmacists between different prescribed or over-the-counter medicines. New medicine appointments This is a free NHS service for anyone Medication aids Your pharmacist who has been newly prescribed will be able to give advice about a medication to thin the blood or medication aids, such as drug wallets treat asthma, chronic obstructive or blister packs. Some pharmacists pulmonary disease, diabetes will organise your medication into (type 2) or high blood pressure. blister packs, marked with the day At the moment this service is not version of the drug with that and time of day when different available for epilepsy. generic name. However, if your tablets should be taken. prescription has the branded name, GETTING THE SAME MEDICATION your pharmacist has to give you Giving information on how that brand. to keep healthy Your pharmacist It is recommended that people Going to the same pharmacy each can give you advice and tips about with epilepsy take the same version time and getting to know your how to stay well, including good of their medication every time. pharmacist may help make sure you nutrition, exercise, losing weight There are often several different get a consistent supply of medication. and stopping smoking. They may versions of each anti-epileptic Your pharmacist will keep a record be able to provide you with drug – branded and generic – but of any medicines they have dispensed information and leaflets about different versions of the drug can to you and if you ask, will try to issues which concern you. vary slightly and this could affect ensure consistency of supply. Check seizure control for some people. that you have the correct AEDs while Signposting you to other services If your prescription only has the you are at the counter, as your If your pharmacist feels you need generic name of the drug, your pharmacist will not be able to help from another healthcare pharmacist can give you any change them once you have left. 13

Two weeks after starting a new medicine, 33% of people do not take it as prescribed

Over Unused prescription medicines cost NHS 3m £300m a year MURs at pharmacies in England in England 2013/14

11,647 community pharmacies in England

96% registered of people can pharmacists conveniently walk to a community pharmacy

REPORTING A PROBLEM side effects of medication and WITH YOUR MEDICATION identify any problems that may not be known. Yellow Card Scheme You can also use the Yellow Card ‘A medicines use review For some people, anti-epileptic Scheme to report any problems is a free NHS consultation drugs can cause side effects. Many you may encounter by switching of these are known side effects between different versions of with your pharmacist and are listed in the patient an AED, adverse incidents with about your medication’ information leaflet that comes medical devices, defective with your medication. However, medication or counterfeit/fake if you experience a side effect that medication. is not listed, you should report this You can ask your pharmacist or through the Yellow Card Scheme. GP for a yellow card to send to the The Yellow Card Scheme has been MHRA. Or you can fill in a form set up by the Medicines and online at www.yellowcard.mhra. Healthcare Products Regulatory gov.uk/the-yellow-card-scheme/ Agency (MHRA) to monitor the or call 0808 100 3352. 14

MEDICINES USE REVIEW

A medicines use review (MUR) is a chance for you to talk to your local pharmacist about the medication you are taking and how you are getting on with it. The service is provided by the NHS at most pharmacies throughout England and Wales, and is completely free. Similar services are available in Scotland and Northern Ireland. Of course you can ask your pharmacist questions at any time, but this is a concentrated time for you to focus on your medication during a private consultation and discuss any problems or queries you may have.

Who is eligible for a review? Issues you might like to discuss You will be eligible for a review include: if you are taking one or more – how effective is your medication prescription medicines or if you – is it giving you seizure control have a long-term health condition – are you experiencing any such as epilepsy. However, you are side effects still welcome to talk to your – is it easy to remember when pharmacist at any time even if you to take your medication don’t meet these criteria. – are there any reminders/alarms You can arrange a review that could help you to take through your pharmacist, or they them regularly may even suggest one. However if – are there any containers that you have an urgent problem with might be easier to open if you your medication such as severe side are having difficulty getting effects or if you have taken too your medication out of its much medication, do not wait for a present container review. See your GP or pharmacist – are there any alternatives straight away. to your current treatment – how can you be certain that you What happens at an MUR? are prescribed the same version Your MUR will take place in a of your medication every time, Find out more at: private consultation room where without your medication being www.epilepsysociety.org.uk/ you will be able to sit down with switched to a cheaper version? making-most-your-pharmacist your pharmacist and will not be overheard by staff or customers. What happens after an MUR? Your pharmacist may ask you After your MUR your pharmacist questions about your medication will draw up an action plan, and how you are getting on with recording when the meeting took it, but you may also like to ask place, what was discussed and any questions. It is helpful to take actions that you agreed. You will along a list of all the medications receive a copy of the plan and you you are taking, how much you take can ask for it to be sent to your and when. Include any over-the- GP, epilepsy specialist nurse counter medicines and herbal or your carer. remedies too. Your pharmacist If your pharmacist recommends will only know about medication a change to your prescription, this you have received through that will need to be agreed by you and pharmacy. They do not usually the person who usually prescribes have access to medical records. your medication – usually your GP. MEDICAL 15 Erectile dysfunction It’s a man thing

At Epilepsy Society’s conference, we asked what you would like to read more about in Epilepsy Review. One of the most requested topics was erectile dysfunction and the impact of epilepsy on sex, particularly for men. Here Nicola Swanborough talks to the experts

More than 50 per cent of men with epilepsy experience involved in sexual activity, given the right stimulus. Erectile sexual health problems at some point in their life. While many dysfunction is the inability to achieve and maintain an erection. enjoy a healthy and fulfilling sex life, research shows that Both are surprisingly common in all men – not just those for others low sex drive, erectile dysfunction and lowered with epilepsy. fertility rates can be significant issues. Yet experts say men Most men experience a lowered sex drive or erectile are often reluctant to talk about these issues with their doctor dysfunction at some point in their life, for example at times or healthcare professional. of increased stress or as a symptom of low mood and ‘Ask any man with epilepsy how his condition impacts depression. In the general population 7-8 per cent of on his day-to-day life and he will talk about worries with 20-40 year olds experience erectile dysfunction, with this work, the limitations of not being able to drive and the figure increasing to 11 per cent for 40-50 year olds, cognitive side effects from medication,’ says Professor 40 per cent in the over 60s and 50 per cent in the over 70s. Matthias Koepp, consultant neurologist at Epilepsy Society. Studies show that men with epilepsy have an increased ‘Rarely will he talk about sexual problems. risk of erectile dysfunction of up to 57 per cent, but the risk ‘Despite living in a society where we are bombarded can vary according to severity of the condition and whether with sexual imagery, when it comes to talking about sex on they also have depression. Among those attending a personal level, we don’t – and men are particularly bad. appointments at outpatient clinics the rate can be as low as We can’t find the language to express something that can three per cent, but it can increase to more than 50 per cent affect us both at a physical and psychological level and that for people being evaluated for epilepsy surgery. can have a major impact on our quality of life, particularly Infertility, where a couple struggle to fall pregnant after on our relationships. We’d rather suffer in silence than more than a year of trying to have a baby, is again quite open up to a GP or neurologist.’ common among those with epilepsy but also in the general Lowered sex drive or libido is the reluctance to get population. Around 15 per cent of all couples experience 16

More than 50 per cent of men with epilepsy experience sexual health problems at some point in their life

Twenty per cent of people in the UK experience depression at some point in their lives, but for people with epilepsy, this figure rises to between 30-55 per cent.

some difficulties although this rate seems to be slightly also been shown to increase the risk of problems with sex, higher for men with epilepsy. indicating that better seizure control may lead to a more The relationship between epilepsy and sexual satisfactory sex life. But as is so often the case with epilepsy, dysfunction is complex. Evidence points to several there can be a delicate balance between optimising both potential contributory factors: the location of the epilepsy in seizure control and a healthy sex life. the brain, seizure frequency and severity and the side effects Epileptic seizures are caused by the random and of some anti-epileptic drugs. But accompanying conditions excessive firing of certain cells in the brain. Epilepsy such as depression and anxiety can also be significant. medication targets the chemical imbalance that causes Professor Koepp explains: ‘Sexual arousal begins in the this to happen and is specifically directed at the brain brain with neurotransmitters increasing the communication cells responsible. But the medication may also affect other between brain cells and triggering an increase in the flow parts of the brain including those involved with sex. of blood to the sex organs. This causes tissues to expand Evidence shows that some anti-epileptic drugs can and harden. affect the cerebral cortex, or outer area of the brain, ‘Anything that interferes with the nervous system or blood compromising a person’s ability to feel sexual desire. circulation could potentially lead to erectile dysfunction. At the same time, certain drugs can alter hormone Anything that affects a person's sex drive will make it more metabolism, affecting a person’s ability to become difficult for the brain to trigger an erection. sexually aroused. ‘Epilepsy, of course, is generated in the brain and seizures Professor Koepp continues: ‘Sexual desire is dependent occurring in regions of the brain linked to sexuality – the on correct levels of hormones, especially testosterone. frontal and temporal lobes – may impact on sexual functions.’ Some enzyme-inducing epilepsy drugs make your liver A small study, reported in the British Journal of work harder and so reduce the levels of testosterone Psychiatry, looked at 44 adults with temporal lobe epilepsy in your body. This is particularly true of carbamazepine, and 47 with generalised epilepsy. The study showed that oxcarbazepine, phenytoin, pheonbarbital, primidone 63 per cent of the men with temporal lobe epilepsy had and topiramate (see table, opposite). a low sex drive while only 12 per cent of the men with ‘If epilepsy drugs appear to be contributing to sexual generalised epilepsy reported problems. health problems, then alternatives should always be Frequency of seizures and severity of seizures have considered – lamotrigine and leviteracetam tend to The Heat Within by John Daniels www.epilepsysociety.org.uk/artists-and-epilepsy ask forareferraltoyourneurologist.’ talk aboutyourepilepsymedicationand,ifnecessary, fertility issues,itisalwaysimportanttoconsultyourGP, membrane function.’ phenytoin, carbamazepineandvalproicacidonsperm treatment,’ hesays.‘...studiessuggestadirecteffectof is notedinpatientsonlong-termanti-epilepticdrug maturation ofsperminthetestes.‘Poormotility infertility mayberelatedtotheimpairedformationand Engel), SwedishepileptologistTorbjörnTomsonsaysthat higher dosesformenwithfocalseizures. enzyme-inducing medicationwhichmaybeprescribedat in thetemporallobe,orwhetheritcouldbecausedby as towhetherthisisadirectresultoftheepilepticactivity primary generalisedseizures.Howeveritremainsunclear to affectmenwithfocalepilepsymorethanthose affect aman’s sexlife Medication thatmay and improvedmood.’ but this could just be a reflection of better seizure control that sexualdysfunctionappearstoimproveaftersurgery to becandidatesforepilepsysurgery.Evidencesuggests prevalence ofsexualproblemsbuttheyarealsomorelikely citrate (Viagra)maybeprescribed. to be a problem, then specific medication such as sildenafil be abetterchoiceofdrugs.Iferectiledysfunctioncontinues sodium valproate Carbamazepine, oxcarbazepine andpossibly or quantity Medication thatmayaffect spermquality primidone andtopiramate oxcarbazepine, phenobarbital,pregabalin, Carbamazepine, clonazepam,gabapentin, dysfunction Medication thatmaycontributetoerectile pregabalin, primidoneandtopiramate oxcarbazepine, phenytoin,phenobarbital, Carbamazepine, clobazam,clonazepam, Medication thatmayreduce sexdrive phenytoin, primidone,topiramate phenobarbital, Carbamazepine, oxcarbazepine, Medication thatmayreduce testosterone levels Professor Koepp continues: ‘If you are experiencing Professor Koeppcontinues:‘Ifyouareexperiencing Writing inThetreatmentofepilepsy(Shorvon,Perucca, Research shows that lowered fertility rates also seem Research showsthatloweredfertilityratesalsoseem ‘Men withtemporallobeepilepsytendtohaveahigher

sex atwww.epilepsysociety.org.uk/sex You can find out more about epilepsy and targets sexualfunctioningmay beapositivewaytogo.‘ think andbehave.Cognitive behaviouraltherapythat can helpyoumanageproblems bychangingthewayyou neurologist. Cognitivebehavioural therapyisathat psychological therapyshouldbemadebyaGPor or depressionseemtobethedriver,thenareferralfor continues DrThompson.‘Iftheseareruledoutandanxiety prescription drugs, alcohol, recreational drugs andsmoking. testosterone canallcauseproblems.Sotoocertain diabetes, raisedbloodpressure,cholesteroland low men ingeneral,notjustwithepilepsy.Heartdisease, is aproblem,thenitalwaysworthyoffurtherinvestigations.’ to finding a solution. ‘If erectile dysfunction happens and it problem, talking about it and seeking help are the first steps are broughtundercontrol. personal fearsmayformbarrierslaterinlife,evenifseizures relationships. Lackofexperienceduetoopportunityand reluctant toengageinanactive,healthysexlife,orform Ongoing seizuresmayhaveresultedinapersonbeing on what should be a shared and fulfilling experience.’ then makingintercoursethegoalcanputadampener remove thepressure.Ifsomeoneisexperiencingproblems, physical actofsexwithoutithavingtoendinanerectioncan primary goalofsexualintimacy.Derivingpleasurefromthe possibilities, thismayhelptoallayconcerns. and concernswithyourpartnertalkthroughthe is nottheendofworld.Ifyoucanshareyourworries during sexthanatanyothertime,andifitdoesthen fulfilment of the experience. activity, thenthisislikelytoimpactonthepleasureand during intercourse,ormayevenbetriggeredbysexual people. Ifoneofthemisanxiousthataseizuremayhappen Dr Thompson.‘Sexisaveryintimateactivityinvolvingtwo with epilepsyandcanimpactonallareasoftheirlives,’says inhibitors) –canalsocontributetosexualdysfunction. medications –modernSSRI(selectiveserotoninreuptake is 25-30percent.Alongsidethis,someanti-depressant The rateofsexualdysfunctionamongmenwithdepression with epilepsy, this figure rises to between 30-55 per cent. depression atsomepointintheirlives,butforpeople drive, mental health can also play a significant role. the physicalcausesoferectiledysfunctionandlowsex of psychologyatEpilepsySociety.Shesaysthatalongside important forsexualactivity.DrPamThompsonishead The workingrelationshipbetweenmindandbodyisalso Worries aboutsex? ‘Physical causes should first be investigated by a GP,’ There aremanycausesforerectiledysfunctionthataffect Dr Thompsonstressesthatrecognisingthereisa Sexual problemscanalsostemfromsocialexperience. ‘Equally, havinganerectiondoesnothavetobethe ‘In facthavingaseizureisnomorelikelytohappen ‘Anxiety anddepressionareverycommonamongpeople Twenty percentofpeopleintheUKexperience

17 18 WELL BEING Epilepsy by degrees

Peter Nagle was diagnosed with Going to uni can be one of the best experiences epilepsy at the age of 17. He of your life – new friends, new independence, studied economics at the University of Exeter and took his masters at new opportunities. Having epilepsy shouldn’t the University of Bristol. Now 25, stop you enjoying any of these but it has to be Peter is an economist with the Bank of England. a consideration. Former student Peter Nagle gives his tips on coping with epilepsy at uni 'Student life can be pretty random – late nights, lack of sleep, poor diet, while Sophie Harries shares her experiences too much alcohol. You’re all away from at the end of her first year studying dietetics home and trying new things and even though it may not be obvious, there is a lot of pressure to conform. You don’t want to be the odd one out but you cases it can be preventable. Discuss have to know what will work for you. your own risks with a healthcare professional. Find out more at Think about what triggers your www.epilepsysociety.org.uk/sudep seizures and how you can make sure having a good time does not Before you head off to uni compromise your health – or your go and see your GP or epilepsy degree. My seizures were generally specialist. Have a chat with them triggered by computers and staying about lifestyle changes and any out late. I tried to minimise my screen issues with your medication. I am lucky time – no computer games and I would that my sister is a doctor, so before print out material I had to read. I would I went to uni she made sure that I also write by hand first. had all the right medication with me. In my second year I had a seizure due to lack of sleep and not taking my When you get to uni register with medication. When I was at home I was your uni GP and find out where quite independent but I relied on my your local pharmacist is (Find a parents a fair bit to make sure I was pharmacy app, see page 20). You taking my medication. That seizure might like to have a chat with either or was a wake-up call. both of them about your epilepsy and I played a lot of water polo at uni your medication. Some people choose which my parents weren’t too happy to wear some sort of medical jewellery about. My personal view was that I or carry an ID card with them with was unlikely to have a seizure while details about medication, seizures and swimming but I made sure everyone who to contact if they have a seizure. in the pool knew about my epilepsy. I am very open about my epilepsy Understand why it is important and quite happy to tell friends to take your medication and about it – it stops it from becoming a how a missed dose could result in big deal and gets rid of the fear of the a breakthrough seizure, as it did for unknown. Also, telling friends about me, or how alcohol and drugs can your epilepsy means they will know increase your risk of a seizure (www. how to help you if you have a seizure. talktofrank.com/). Be aware of Sudden Once you know who you are going Unexpected Death in Epilepsy. It is very to be living with at uni, you might like rare – about 1 in 1,000 people with to get to know them via Facebook. epilepsy die of SUDEP – but in many Whether you choose to tell people 19 about your epilepsy is up to you but Sophie Harries,19, is making friends in advance may help studying dietetics at the you decide who you would feel most University of Plymouth. comfortable about telling when She has idiopathic term starts. generalised epilepsy with photosensitivity. Memory was a big issue for me when I was a student. I was taking 'My first year at university carbamazepine which slightly dulled has been amazing. I have my thoughts. Through the university made some amazing friends I was able to arrange to have extra who don’t care about my time during my exams. This just helped epilepsy and see me for to take the edge off things and make who I am. At college I was revision less of an ordeal. known as 'Epi' or ‘the girl Before going off to study, I suggest with epilepsy’ whereas at uni people are genuinely you contact your uni’s disability advisory interested and ask me questions. service and have a chat about your I’m not going to dress it up though. I was incredibly epilepsy, how it affects you and whether worried about how living alone in a flat of complete you might need extra support with issues strangers would pan out and during freshers’ week I did such as memory and concentration. feel a little isolated as I wasn’t able to go out with everyone. However as time went on and people became more Through the disability student knowledgeable, events were arranged taking my epilepsy allowance you can apply for financial into consideration. help to buy equipment that will help The support I’ve received from my lecturers is you overcome these sort of problems. outstanding. The university’s disability assist team make This could be anything from a sure everything I possibly need is in place such as extra dictaphone for recording lectures time in exams, a separate room and they even provide or a laptop for accessing and storing voice recorders for lectures if I need one. information. You might even be able However my shiny star award goes to the maintenance to pay for someone to take notes for team for my halls. My first room had steps in it which were you during lectures. Find out more a big no-no, so they moved me to another room. The main at www.gov.uk/disabled-students- light in this room flickered like mad which was a problem allowances-dsas as I also have photosensitive epilepsy. Straight away the maintenance team swapped the light with a brand new There is lots of help out there, as LED one. They also replaced the light in my bathroom and and when you need it. I had a bus pass in all the communal areas of the flat. I also have a specialist which meant I could take a four-hour nurse at the local hospital who I meet regularly to make bus ride along the Jurassic coast from sure everything is ok and to support me which is helpful. Exeter to my home in Bournemouth Overall I would say that the ‘uni experience’ hasn’t been (www.gov.uk/apply-for-disabled-bus- affected by my epilepsy greatly as I still go out to pubs with pass). A good tip is to buy a disabled my friends. We do a pub quiz every Tuesday (each time coming person’s railcard rather than a young very close to winning £200 but never winning!), we have flat person’s railcard as this will work out meals and just generally have an amazing time. It’s not all cheaper. (http://www.disabledpersons- about drinking and going to clubs, it’s about making friends railcard.co.uk/). for life and they will accept you for you, epilepsy and all. I would say don’t leave work to the last minute, get Download Epilepsy Society’s ahead and plan assignments and revision. It will pay off. To epilepsy toolkit app to your someone with epilepsy who is worried about going to uni mobile. That way, wherever you are, or to someone who doesn’t want to go because of their you will have up-to-date information epilepsy, I would say speak to the uni, take a look at the about epilepsy at your fingertips, support you can get, speak to your future lecturers and if including your seizure diary and you feel comfortable then go for it! Don’t let your epilepsy details of the meds you are taking. hold you back, I’m not! I am on my way to fulfilling my www.epilepsysociety.org.uk/app dream of becoming a dietitian, I have my first placement in the summer which I am so excited about I can’t even explain!' Good luck with your degree and enjoy. Find out more You can read about Sophie’s photosensitivity about university life at www. on page 7 or to read her full university blog go to epilepsysociety.org.uk/university' www.epilepsysociety.org.uk/sophiestory 20 WAYS AND MEANS There’s an app for that Epilepsy Society's digital expert Ben O’Keefe browses a selection of the latest apps which you may find useful for helping to manage your epilepsy and other related issues such as poor memory and stress

Any.do Task List & To-do List Simple Log MediSafe Meds & Pill Reminder Google play Google play Google play

What they say What they say What they say Any.do is an all-in-one life manager. Save Log and track any type of data easily An app with a virtual drugs box to help time organizing your family tasks, work then view as a list, graph or exported you take your medicine on time and safely. projects and personal to do’s in one place. as a spreadsheet. What we say What we say What we say A comprehensive app which divides This app is fairly easy to use. You can Easy way to track anything, including your medication into either morning, set up reminders for your day and have seizures. Basic but it does the job well. noon, evening or night. It also has them recurring either daily, weekly, You don’t need to register. a handy ‘weekly adherence’ report monthly or yearly. You’ll need to create which can be exported and shared an account to sync information across What we like with your doctor. You can also add other devices such as your tablet and Easy to use. ‘as needed’ medication such as buccal share with friends and family who Good to have data in a graph. midazolam, so you can keep track also have the app. of how often it has been used. What we don’t like What we like Doesn’t have reminders. What we like Has voice recognition. Nice visual representation Easy to set up reminders. of a drugs box. ColorNote Notepad Easy to set up your reminders. What we don’t like Google play ‘Permissions’ required are quite What we don’t like extensive and potentially off putting. What they say If you take a lot of medication the A simple notepad, perfect for writing drugs box can get quite cluttered. notes, memos and to-do lists. Breathe2Relax App store What we say Find a pharmacy One of the more basic apps but with App store What they say all the features that you would expect A portable stress management tool to including a calendar which flags up the What they say help with mood and anxiety. Practice number of notes you have for each Need to pick up a prescription and not exercises to learn stress management day. You can change the text size. sure where your nearest pharmacy is? through diaphragmatic breathing. This app will find all those in your What we like local area. What we say Easy to set up and use – no registration. This may certainly help with relaxation. What we say But be careful not to set the inhale/ What we don’t like Easy to use, this app will find and list all exhale breaths too high (start around The interface is functional but not the pharmacies in your locality giving 4/5 seconds) or do too many repeats. especially attractive. you exact distances to each. You can Slow, deep breathing over long periods get directions and a phone number. can cause dizziness and may induce seizures in some people. Epilepsy Toolkit What we like Google play and App store Wherever you are, you can always What we like find a pharmacy where you can Simple to follow and can be adapted Read about our free epilepsy app get your epilepsy medication or to your own individual needs. on page 10. ask a pharmacist for advice. PROBLEM SHARED 21

I have recently been diagnosed with epilepsy at the age of 46. It has come totally out of the blue and while I have told my close family about it, I don’t know how to tell my friends – especially those who I only see occasionally. I don’t really know how to start the conversation and I am concerned that some of them may start treating me differently. I even worry that they won’t want to see me any MediSafe Meds & Pill Reminder more in case I have a fit. My husband tries to reassure me Google play this won’t happen but it’s all going round in my head. I wish there was someone else with epilepsy who I could talk to. Geraldine, Staffordshire

I was diagnosed with epilepsy last at work and when I started my current You can read more replies to January at the age of 24. I have been job I spoke to the whole team about Geraldine's letter at: very open about my epilepsy with what to do. Epilepsy Society has some www.facebook.com/epilepsysociety friends, family, colleagues and actually great info you can print out – www. most people. epilepsysociety.org.uk/first-aid-seizures There are a few reasons for this. Amanda, facebook.com/epilepsysociety Firstly, while I am suffering from NEXT ISSUE seizures, I wanted people to have an I would be up front and honest I have complex partial seizures and idea of what was happening and how about having epilepsy and if your often find myself in unexpected to look after me if I had a seizure in friends are truly your friends they places and feeling quite confused their company. Secondly, I wanted shouldn't treat you any differently. and very tired. I recently found them to try and understand what I They should support you no matter myself wondering around have been through and how having what has happened. someone's back garden having epilepsy has affected my life. Thirdly, I wear hearing aids and I worry got off the bus in an area I was not I wanted to raise awareness and when I meet new people that they familiar with. On several occasions understanding of epilepsy. will treat me differently when they the police have been called. To start the conversation you could see them. I am still the same person, I have consequently become tell them that you're having to take and you are too. quite an anxious person. I have to medication every day now, or that Stephanie, facebook.com/epilepsysociety really force myself to go out on my you're currently unable to drive. own, often feeling the safe option Charley, facebook.com/epilepsysociety I'm 33 and was diagnosed with is to stay at home. epilepsy out of the blue two months My wife is very supportive but My epilepsy came completely out ago. Epilepsy is part of who I am now. she cannot be with me all the time. of the blue too. I was 17 and I gradually and naturally told all my Does anyone else experience thankfully the majority of people I told friends as I saw them rather than similar problems? Do you have reacted well. Many people asked how making a point of it. any tips for coping. they should deal with a seizure in case Everyone has been cool. Life goes Neil, Doncaster I had one but nobody avoided me on, we adapt, we embrace change because of it. I'm 34 now and just tell and create new routines. Some things WOULD YOU LIKE TO SHARE YOUR new people if/when it comes into get me down such as the no driving, THOUGHTS WITH NEIL? conversation. I don't remember any no being left alone with my kids, Or do you have a question to negative reactions. no swimming alone… ask our readers? Email nicola. I'm quite confident regarding my If anyone sees me having a fit, it will [email protected]. epilepsy – I'm not ashamed of it. I'm simply enhance their understanding uk, write to Editor, Epilepsy Review, quite open about it and I think that of epilepsy and strengthen the bond Epilepsy Society, Chalfont St Peter, helps because people feel free to ask of our friendship. Surprising how Bucks SL9 0RJ, or reply questions, which helps them feel less many people live with epilepsy or at either address below: scared about what might happen know someone who does. I find facebook.com/epilepsysociety if I have a seizure. that reassuring. forum.epilepsysociety.org.uk I think this is particularly important Michael, facebook.com/epilepsysociety 22 AND FINALLY Tonic comic

Stand-up comic and all-round funny girl if there’s any way we can get scientists to also work on other canine traits that might be transferable to humans. Juliet Stephens has the last laugh when Personally, I’d love some of that unquenchable joy at it comes to her epilepsy retrieving a tennis ball, no matter how many times it’s thrown. And if there’s any reverse process, that we might affect dogs with human traits, I might ask if the scientists Recently I moved out from the big city to the ‘Shire. I wanted to have a go at combatting dog breath...? left behind the bright lights and relentless distractions It wasn’t until about five years ago that I first became of metropolitan living after 16 years, and I finally have a aware of seizure alert dogs. My first encounter was at a garden. I still don’t drive, on account of my epilepsy, and workshop for teens with epilepsy up in Sheffield. I was one this makes me anxious about getting around these gorgeous, of three invited guests, alongside a neurologist from the leafy, sparsely scattered villages. Or even around this Sheffield hospital and a lady from the seizure alert dog specific village – I still haven’t done the four mile round trip training centre. That she brought a puppy with her to the to the supermarket, for example, though I’m confident workshop naturally and inevitably meant she was the most that I will. Eventually. It’s a quick run that would take ten popular speaker, leaving me and the neurologist to sip our minutes in a car, but many more minutes on foot, and then cold tea at the side of the room while there’s heaving the groceries home again afterwards. the teens launched a barrage of questions and Perhaps I’ll take inspiration from our Scandinavian clambered over each other to pet the dog. friends and their Huskies and fashion some kind It was fascinating to hear about of harness-and-sledge. the training process, and that the dog I’ve arrived at these life changes – is trained to respond to the individual’s cohabitation and commitment – years, triggers, which may be undetectable almost decades after some of my to the human eye/nose/sense. peers, and I find myself finally quite I don’t have any ‘aura’ before my comfortably on a trajectory that involves seizures, so I tend to drop like a stone pets, children and finger-paintings on the and take down any furniture etc. with me fridge. I don’t have any kids yet, however. Like on my way. I think it would be wonderful to the Ascent of Man, my progress in terms of have a trained dog to nudge me to lie down, to taking care of another life will likely start with the minimise damage to myself. (NB – it is crucial that pitter patter of four paws before thinking about the dogs are trained. I’ve heard that some people with lifelong commitment of supporting life with two legs. epilepsy say their pet dog ‘tells’ them that they’re about I grew up with dogs – beautiful black Labradors, so to have a seizure, but as I learned from the lady in Sheffield, adorable with their deep brown, almost mournful eyes the dog’s changed behaviour is precisely because it does and ‘why on earth wouldn’t you give me that biscuit’ know, but is acting out of fear and distress. The training expression. is so the dog can learn the client’s signals and overcome Our second dog, Holly, was a fellow epileptic and though the anxiety of the oncoming seizure). I only saw her having a seizure once, she and I shared the My darling Mum is forever suggesting to me whatever morning and evening medication ritual. She was prescribed she has recently read is helpful for people with epilepsy phenobarbital, so whenever I saw my neurologist to talk – valium suppositories, a ketogenic diet, a seizure alert dog. about my meds, I always said I’d be open to trying most The infrequency of my seizures makes me ineligible for a things, but I didn’t want to be able to share meds with seizure alert dog – they are rightly for people with severe the dog. epilepsy and regular seizures. So I think I’ll find my four- A twist of circumstance in recent years now means that legged friend via a more traditional route. Maybe they’ll my Mum and also my eight-year-old nephew have both also turn out to have epilepsy – they say pets are like their been diagnosed with different kinds of epilepsy, and all owners – so we could bond over that. But I won’t share three of us take leviteracetam (albeit different doses). their drugs, y’hear! I feel less conflicted about potentially lending or borrowing tablets from my human relatives than from my canine ones. In this issue of Epilepsy Review there’s a wonderful feature about canine epilepsy and how research into epileptic woofers may translate to benefitting human JULIET STEPHENS people with epilepsy. I think it’s great – and I wonder LAUGHING ALLOWED EPILEPSY SOCIETY 23

On set with Emmerdale

Epilepsy Society’s Zelma Hutchinson has been on set with the cast of ITV’s Emmerdale, advising on the continuing storyline around vicar Ashley Thomas’ epilepsy. Ashley, played by actor John Middleton, (right) was Conference update diagnosed with epilepsy in June following a car crash. But as the So that we can bring you the most storyline unfolds, the tv studio was his own research very seriously,’ up-to-date news about exciting keen to call in the experts to ensure said Zelma. ‘He was very keen to developments in our genetics that they were giving an accurate hear about the impact of seizures research, our Epilepsy Society representation of Ashley’s seizures on the lives of people with epilepsy. conference will take place in and the impact on his life. ‘He said that rehearsing tonic spring 2016. Zelma, who is regional team clonic seizures before filming on The conference will be held at manager at Epilepsy Society, spent set was exhausting and gave him the impressive and accessible the day advising John Middleton an incredible insight into what Central Hall in Westminster, on the real-life experiences of it can be like to live with seizures.' London, just opposite Westminster people with epilepsy. The episodes featuring Ashley’s Abbey. Past speakers at Central Hall ‘John was really well informed epilepsy are due to be broadcast on have included Winston Churchill, about the condition and had taken ITV from 20 August 2015 at 7pm. Gandhi and Martin Luther King. We are looking forward to sharing some ground-breaking RideLondon-Surrey100 news with you and hope that you will be able to join us there. A huge congratulations to our Epilepsy Society's medical director, 83 cyclists who rode 100 miles in Professor Ley Sander and our less than nine hours to support director of clinical genetics, people with epilepsy. If you have Professor Sanjay Sisodiya will been inspired by their amazing present our exciting new focus on achievement, why not apply now world class research and advances for your chance to join Team Help inform our research in treatment. Purple in 2016. We have a number We will also be welcoming other of Golden Bond places available for At Epilepsy Society, medical research renowned epilepsy experts who supporters. These places come with is key to our work to improve the will be talking about their work fundraising targets that allow you diagnosis and treatment of epilepsy in pushing forward medical and to run for a cause that is close to and, hopefully, one day to find a cure. research boundaries to really make your heart and help to fund our Now we are keen to hear what is a difference to epilepsy treatments. vital medical research into epilepsy. important to you when it comes to We will also hear about the vital Or you could apply for a ballot place epilepsy research, what you hope work in improving NHS epilepsy (the ballot opens on 10 August we will achieve and how this could services, from Juliet Ashton, 2015) and still ride as part of our make a difference to your life. For national nurse consultant, team. You can find out more at example, do you think our research epilepsy commissioning. www.epilepsysociety.org.uk/cycling should focus on epilepsy genetics, You don't need to be a member new drug treatments, brain surgery or to come along, everyone is the psychological impact of epilepsy? welcome, but please contact us We would be very grateful if you to reserve your place in advance. could take the time to fill in our Watch out for more details at online survey at www.epilepsysociety. www.epilepsysociety.org.uk/ org.uk/researchsurvey which will help conference or call our membership us to understand your views and office on 01494 601420. inform our work. If you would prefer To attend the conference, we ask a paper copy of the survey, email for a £25 donation which includes [email protected] lunch and refreshments. We look forward to hearing from you. In memory of Tom

The Scott family lost their son, Tom, to SUDEP (Sudden Unexpected Death in Epilepsy) last year, aged 23. Please support our research team who are working hard to identify the causes of SUDEP so that other families don’t have to go through such pain. To find out more or to donate, please visit www.epilepsysociety.org.uk/tom

Issue 12, Spring 2015 Issue 11, Winter 2014/2015 Issue 5, September 2012

FAMILY CULTURE WELL BEING

How exercise can help with Supermodel and actress How not being able to drive due to seizures can impact your seizures Agyness Deyn talks about on quality of life, employment her new film Electricity Exercise and you, page 6 and self esteem Epilepsy – the film, page 6 Driving force, page 8

MEDICAL RESEARCH WELLBEING MEDICAL Welcoming a new era in the The menopause – will it affect Ongoing seizures? Side effects? diagnosis and treatment of your epilepsy? Dr Fergus Rugg-Gunn explores epilepsy at the world-class Dr Dominic Heaney explains, page 8 your options Epilepsy Society Research Centre When the AEDs don’t work, page 8 Brain imaging and genetics, page 15

WAYS AND MEANS GOVERNMENT WAYS AND MEANS Making sure you get the same MPs call for better epilepsy How to find an epilepsy version of your anti-epileptic services and more funding service near you medication every time Pharmacist Janet Clark explains, page 20 a full life for everyone Epilepsy in parliament, page 18 Our new interactive map, page 20 affected by epilepsy www.epilepsysociety.org.uk www.epilepsysociety.org.uk www.epilepsysociety.org.uk www.epilepsysociety.org.uk

01494 601 300 ER-2012-5-11406-art.indd 1 30/08/2012 19:08 11643-ER-Isu12.indd 1 11598_ER-Isu11.indd18/03/2015 14:51 1 11530_ER-Isu9-OL.indd18/11/2014 14:38 1 04/02/2014 18:11 Epilepsy Review magazine Confidential Helpline – 01494 601 400 If you would like to receive future copies of Epilepsy Review, Monday to Friday 9am – 4pm, Wednesday 9am – 8pm. call our membership office on 01494 601 402 or visit National call rate. Information and emotional support. www.epilepsysociety.org.uk/membership