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Epilepsy News Epilepsy Ireland Issue 84 Spring 2019 IN THIS ISSUE: First National Conference • Brexit: will it affect epilepsy medication? • Kevin O’Connell: my first seizure on the Consequences of • Mark O’Reilly: epilepsy and fitness Sodium Valproate • Prof. Mark Cunningham: the role of neuroscience
CONTENTS NOTE FROM THE EDITOR Conor Culkin 3. News Update We have another busy issue of Epilepsy News, which includes a variety of articles I hope you will enjoy. Speakers from the recent 4. Impact of Brexit on conference on the consequences of Sodium Valproate feature Medication Supplies on the front cover of this issue. This important event brought 5. Report on Sodium together professionals and policy makers with the families Valproate affected by Sodium Valproate and was organised by Epilepsy 6. TFS Award Winning Course Ireland, HSE, OACS Ireland, FACS Forum and Trinity College. On page 5 we have the latest news on the drug which includes a 7. Overcoming my Epilepsy HSE report on the issue. Brexit has created uncertainly about 8. The Role of Neuroscience medication and on the previous page we clarify the situation in relation to epilepsy 9. New Light on drugs. Mitochondrial Epilepsy This issue also includes a revealing personal story from Kevin O’Connell (Page 7) a 19 year 10. Epilepsy and Exercise old journalism student who will document his epilepsy story in a series of articles for 11. Learning to breathe again Epilepsy News. On page 9, Dr. Gareth Morris from FutureNeuro discusses mitochondrial 12. Fundraising epilepsy, a piece which is taken from a new blog called ‘Epilepsy In English’. In addition, 13. Joe Schmidt supports fitness expert Mark O’Reilly offers some exercise tips for people with epilepsy on International Epilepsy Day how you can start and most importantly be safe while improving your health. On the following page Epilepsy Ireland member Jenny Snook discusses an alternative treatment 14. Regional Events that helped her anxiety and epilepsy, which is known as ‘The Buteyko Breathing Method’. Finally, I would like to announce some personal news. After nearly three years editing Front cover: Epilepsy News and working fulltime as Epilepsy Ireland Communications Officer I am Pictured at the First National moving onto pastures new. I would like thank everyone who helped contribute to this Conference on the consequences magazine since the autumn issue of 2016. I hope the articles have been informative and of Sodium Valproate (l-r) are Geoff thank everyone who has contacted me with feedback and suggestions. Day (OACS Ireland); Karen Keely This is a great organisation with lots of dedicated people and I hope I’ve played a small (Chairperson, OACS Ireland) and part in Epilepsy Ireland’s success. Best of luck to all for the future. Dr Peter Turnpenny, (Consultant Geneticist, Exeter, UK). The conference was held at Trinity College on March 22nd. STAFF APPOINTMENT: LUKE MEANY Luke Meany is the newest member of the Fundraising and Communications team here at Epilepsy Ireland. Luke joined the team at end of November as a Graduate Fundraising and 249 Crumlin Road, Communications trainee. Luke Dublin 12. is highly enthusiastic about Tel: 01 4557500 his new role and is motivated Fax: 01 4557013 to help develop numerous Email: info@epilepsy.ie fundraising initiatives here at Web: www.epilepsy.ie Epilepsy Ireland. Luke studied Registered Charity Number: Sociology and Social policy in 20010553 UCD and most recently received CHY Number: 6170 his Master’s Degree in Sociology and Politics from NUIG. Design and layout by PlipSpace.com Printed by Doggett Print & Design 2
NEWS UPDATE response to stress are related to seizure then correlated the degree of night-time activity. supervision (e.g, no supervision; a listening device, roommate, or physical checks at https://goo.gl/fXNdJs 15-minute intervals; or 2 of the following: a listening device, roommate, additional European Scientific Journal device, or physical checks at 15-minute Highlights the Contribution of intervals) with outcomes. Irish Neurological Charities The total number of SUDEP instances was A collaborative paper led by the 3.53 cases per thousand patients. The first Michael Fassbender shows his Neurological Alliance of Ireland has been residential centre incidence rate was 2.21 support for Brain Awareness Week published in the European Journal of cases per thousand patients in comparison Internationally renowned actor Michael Neuroscience entitled “Building a Supportive to the second centre where a rate of Fassbender showed his support for the Framework for Brain Research in Ireland”. 6.12 cases per thousand was recorded. Love your Brain campaign for National Brain The paper highlights the vital role played Importantly, the study found that the Awareness Week (March 11th to 17th). In by neurological charities (including first centre had higher levels of nocturnal his endorsement video, Michael highlights Epilepsy Ireland) in supporting research supervision than the second centre. A larger the need to raise awareness on behalf of the into neurological conditions in Ireland proportion of patients with SUDEP were 800,000 Irish people living with neurological and profiles a number of NAI member more likely to have nocturnal convulsive conditions. organisations. seizures compared with control participants. The campaign aim was to promote greater Overall, the paper provides an important Patients who died from SUDEP were also awareness and understanding of the brain overview of the landscape for brain research more likely to have a higher frequency of and brain conditions as well as the need for in Ireland, highlighting the progress and nocturnal convulsive seizures. more investment in services, research and potential in exploring rare and genetic As nocturnal seizures and sleeping position prevention. Love your Brain was supported conditions but pointing to the need for often are factors in SUDEP, investigators by over 20 patient organisations including dedicated investment in neuroscience emphasized the importance of nocturnal Epilepsy Ireland and research groups were research as well as the development of an supervision in preventing SUDEP. involved in organising events for Brain infrastructure to support research which Awareness Week throughout the country. https://goo.gl/1a1r5F includes technology, legislative changes, For more information visit loveyourbrain.ie. research networks and support for early https://goo.gl/wecMtw career researchers and clinicians. FutureNeuro receive funding for You can download the publication via the new epilepsy treatments link below. FutureNeuro researcher, Dr. Gary Brennan The Links between Stress and has recently received funding as part of a Seizures https://rdcu.be/biOuo Government investment of €10.8 million in Professor Stafford Lightman at the University research funding. of Bristol began investigating the links between stress and seizures in 2014. This Dr Brennan, who is also a StAR Research research is vital as although the association Lecturer at the Department of Physiology between stress and seizures has been noted and Medical Physics, RCSI has received a it is still not fully understood. Lightman’s grant of €419,472. The funding will enable team from University of Bristol and the Dr Brennan and his team at FutureNeuro University of Exeter placed their focus on the to study how gene regulation and protein research of cortisol. This is a hormone that is generation could inform new treatments for released by the body in response to stress. epilepsy. Nocturnal Seizures with Meanwhile, Principal Investigator with The research team used mathematical and preclinical models of epilepsy so that they Convulsions Linked to SUDEP FutureNeuro Professor Matthew Campbell could examine how the hormone cortisol A study which focused on patients with has been awarded €125,610 in funding as changes the electrical activity in areas of intellectual disabilities who reside in part of a €4.5 million investment by Science the brain that are generally linked with care homes found that seizures marked Foundation Ireland. seizures. The team was able to examine how with convulsions that occur at night are His project will investigate whether restoring increased levels of cortisol affected seizure more likely to be associated with sudden the function of a gene which regulates the activity in comparison to models without unexpected death in epilepsy (SUDEP). blood-brain-barrier and has been found to epilepsy. The research team from Leiden University be disrupted in brain material from epilepsy Medical Center (Netherlands) examined The study found that increased levels patients will prevent seizure activity and the medical records of patients who died of cortisol alone did not play a role in thereby treat refractory epilepsy. as a result of SUDEP from two different increasing the occurrence of seizures. residential care homes over a 25 year period Funding such as the above is a positive However they also found that exposure to a (1987 – 2012). The investigators identified step both for Irish research and people with loud sound did increase the occurrence of 60 cases of SUDEP along with 198 different epilepsy. seizures. This indicates that other age and residential control cases. They components of our body’s biological https://goo.gl/wVLiR3 3
IMPACT OF BREXIT ON EPILEPSY MEDICATION SUPPLIES IN IRELAND Steps taken include: • Re-routing supply chains to remove the transportation/ importation via the UK • Ensuring that adequate reserves of AEDs are in place within Ireland • Relocating drug licences anchored in the UK to other European countries All the responses received from individual manufacturers have been collated on our website: https://goo.gl/hzv5Ck Based on feedback and conversations that we have had with manufacturers on this subject, we do not have any current concerns that there will be any disruption to the supply of AEDs Concerns have been raised in the media in recent months in Ireland in the coming months. Should this change in any regarding possible interruptions to the supply of essential way, we will provide updates on our website and social media medications in Ireland that might occur in the event of a no- channels. deal Brexit. Currently, about 60% of all medications used in Ireland are imported from or pass through Britain. In January, the Taoiseach said that the Government was monitoring a ‘watchlist’ of drugs which could be subject to shortages in a no-deal Brexit. The medications on this list were not disclosed but reports indicate that the greatest concern is around specialist drugs that have for example a short shelf life or those that require storage at very low temperatures. These special categories do not include anti-epileptic drugs (AEDs). Tanaiste Simon Coveney later disputed the existence of any such ‘watchlist’. 60% of all medications used in Ireland are imported from or pass The government has consistently pointed out that even if there through Britain. is a no-deal Brexit, there will not be an immediate effect in In addition, the Department of Health, Health Products relation to the supply of medicines in Ireland. The government Regulatory Authority (HPRA) and HSE have put plans in place have also warned against stockpiling medications, which is to minimise the risks of supply interruptions. The Department something that could actually cause a supply disruption in itself. does not anticipate any immediate impact on supplies following Brexit. The HPRA have requested manufacturers to immediately engage with them if they believe that Brexit may impact on their ability to supply a medicine to the Irish market. It should however be noted that from time to time, shortages in a particular medication can occur for a variety of different reasons. Both the HPRA and the Irish Pharmacy Union report information on product shortages and this is monitored by Epilepsy Ireland on an ongoing basis. For example, we recently highlighted a temporary shortage of Epilim 100mg and the steps that are being taken to ensure patient safety. These temporary shortages, unrelated to Brexit may continue to occur An Taoiseach, Leo Varadkar, said that the Government was from time to time and EI will continue to monitor and report on monitoring a ‘watchlist’ of drugs. these in the coming months. In February, Epilepsy Ireland reached out to all the major Further Information: pharmaceutical companies who supply anti-epileptic drugs • HPRA Brexit Updates - hpra.ie/brexit (AEDs) in Ireland, requesting a brief update on their plans to • Department of Health Brexit page - health.gov.ie/?s=brexit ensure supply of their AEDs within Ireland over the coming • Irish Pharmaceutical Healthcare Association - www.ipha.ie months. The feedback we have received indicates that manufacturers If you have any concerns about medication supplies, please have taken a range of positive steps over the past 18 months to contact your pharmacist or get in touch with Epilepsy Ireland ensure that there will be no interruption to supplies of AEDs in at 01 4557500 or your local Epilepsy Ireland office (see page 14 the coming months, regardless of what kind of Brexit occurs. for details). 4
HSE REPORT ON PRENATAL EXPOSURE TO SODIUM VALPROATE 1975 – 2015 • There is no single source of data relating to the use of valproate in pregnancy in Ireland. Furthermore, while some individual datasets might have held useful information, the inability to link these datasets meant that they were of little value. The analysis therefore relied to a large extent on international data. • It was not possible to take account of variation in the duration of valproate use during pregnancy, dosage prescribed to individual women or whether valproate was used as a standalone drug or in conjunction with other epilepsy drugs. All of these factors would influence the rate of disabilities. • No account could be taken of differences in socio-economic status or urban-rural area of residence. Both of these factors are believed to influence the rate of valproate usage. • The analysis is premised on the licensed prescribing of valproate A group of parents who include Karen Keely of OACS Ireland at the for epilepsy and bipolar disorder but does not include off-licence very first Sodium Valproate Conference in Trinity College Dublin prescribing e.g. for migraine. which was co-hosted by Epilepsy Ireland in March. Also pictured are Consultant Neurologist Prof. Colin Doherty and Senator Rose Because of these significant limitations, the report concludes Conway-Walsh. that the estimates should only be viewed as “a broad guide As part of its Valproate Response Project established in 2018, the for those tasked with planning diagnostic and management HSE has prepared a Rapid Assessment report of the number of services for people affected by this issue”. It continues “the true women and children exposed to sodium valproate (Epilim) in impact of valproate on women and children will only become Ireland over the past 40 years. apparent as data is collected prospectively…”. Valproate can cause birth defects and problems with the While the estimates should be considered in light of these development and learning of the child if their mother takes the limitations, they are nonetheless very significant in that they medicine during pregnancy. Children exposed to valproate in greatly exceed both the number of confirmed FVS diagnoses the womb are at a high risk of serious developmental disorders made by the Department of Clinical Genetics at Crumlin (in up to 30-40% of cases) and congenital malformations (in Hospital (less than 50) and the 400 cases estimated by the FACS approximately 10% of cases). The HSE’s Vaproate Response Forum in 2017. Project was set up to: ensure the safe prescribing of Epilim Despite a wide range of actions taken in recent years to raise in women, prevent current and future harm and develop a awareness of this issue including direct communications from pathway of care for diagnosis and treatment of children who HSE to women on valproate last year, only a small percentage have been affected by past exposure to Valproate. of those affected have yet been diagnosed with FVS. Epilepsy The Rapid Assessment Report aims to provide an estimate of Ireland and OACS Ireland continue to work closely with HSE on the likely prevalence of specific major congenital abnormalities delivering a comprehensive response to this issue, including and neuro-developmental disorders associated with the drug expanding diagnostic FVS services, putting in place a package of (known as FVS – Foetal Valproate Syndrome). Until now, there community supports and implementing a new Women’s Health has been no Irish data on this but estimates are vital in planning in Epilepsy programme. the services and supports that affected families require. Some of The full HSE Rapid Assessment report can be downloaded from the report’s estimates include: www.epilepsy.ie/content/valproate-epilim-guidelines. • Between 1975 and 2015, approximately 3,126 babies were Videos from the recent Sodium Valproate Conference will be potentially exposed to valproate in utero. Of these, it is estimated available at epilepsy.ie. that 873 were born between 2000 and 2015 (i.e. currently 18 years old or younger). OACS Ireland • From 1975 and 2015, between 153 and 341 children will The Organisation for Anti-Convulsant (OACS) Ireland supports have experienced a major congenital malformation and and represents families with Foetal Valproate Syndrome. If you up to 1,250 children will have experienced some form of or your child has been affected by valproate exposure or if you neurodevelopmental delay following exposure to valproate in the would like to know more, please contact oacsireland@gmail. womb. com; Twitter - @oacsireland. • An estimated 43 – 95 children under the age of 16 today will For the latest updates, see www.epilepsy.ie and our social have experienced a major congenital malformation as a result of media channels. If you are a woman on sodium valproate valproate exposure and 349 will have experienced some form of please do not stop taking the drug unless you have been neurodevelopmental delay. advised by a medical professional. However, the HSE analysis is subject to a large range of assumptions and limitations and the report must be interpreted with these in mind. These include: 5
KICK START YOUR CAREER WITH EPILEPSY IRELAND’S AWARD WINNING FREE COURSE! For many people with epilepsy further What attracted you to TFS in some sort of experience towards that and education hasn’t been a viable option for particular? having confidence in my capabilities being a number of reasons. Epilepsy Ireland may I felt that TFS gave me an opportunity to instilled through the course is something have the solution if you’re looking for a excel, after having felt like I was amounting that would greatly benefit me. stepping stone between second level and to nothing in every other aspect of my Have you any tips or advice for further education or if you would like to education. I was confident that there gain a qualification to assist you in preparing someone considering Training for would be people there who’d understand for the world of work. Success as an option for them? my difficulties, which would allow me to Apply for your disability allowance months Based on campus at the Institute of overcome them. in advance if you plan on coming to the Technology Sligo, Training For Success has Living away from home was an exciting course and aren’t receiving social welfare. I had over 250 young people with epilepsy prospect. I came out to IT Sligo one day had to wait upwards of 11 months before attend since its’ inception in 1998. Since for an interview and I was shown around I got my disability allowance. I have yet to that year 85% of graduates have progressed the campus and talked about what I’d get receive my travel card or my medical card. to employment or upskilled after they from taking part in the course. There was Fill out these forms and send them out completed the programme. We have had something very unique about the chance I straight away and don’t be discouraged if students from all 26 counties as the course was being given. I felt it would be wrong to they deny you at first. is only available in Sligo. Indeed, TFS is the pass up on such an opportunity. only course of its kind anywhere in Europe! The course co-ordinators and lecturers here How are you finding the are fantastic and are always looking out Students participate in a wide variety for ways to make the lives of the students of activities including lectures, tutorials, experience including being located within an Institute of easier. If the TFS Team sense that your head presentations, assignments, portfolio is starting to drop, they’ll be there to look development, project work, discussion Technology? for ways to make your college life easier and groups, one to one supported training, Being in the IT Sligo is great. It’s a nice ensure that you make it through the course. goal-setting, peer learning, outdoor pursuits campus that offers a lot. There’s a great and much more. All eligible students also library and a few good shops on campus. It’s receive a MSLETB training allowance and an nice to be surrounded by so many people Recruiting NOW for accommodation allowance. going about their things, as it provides an September 2019 air of excitement. We are now recruiting for the I get all of my drinking water from the September 2019 intake onto our college campus. It’s important to stay Training for Success course. hydrated with the medication I’m on, so I get about 5-7 litres of water free from the IT If you’d like to hear more about the on a daily basis. course, please contact: Honor Broderick (broderick.honor@ Have there been any unexpected itsligo.ie) or Maire Tansey (tansey. or hidden benefits to the course? maire@itsligo.ie) or call 071 9155303. This has been my first time living away from home and the experience has been invaluable. My family would have originally come from the west of Ireland, so it feels like I’m able to reconnect with the past by living out here. What do you hope to do after the course? I’m not sure what I’d like to do after the course. I have thought about teaching Who better to tell you about the course English as a foreign language and I have than one of our current students, Joey also thought about going to university. Finneran (20) from Dublin. Completing this course would give me What were you doing before the the qualifications needed for university, so course? having that option open to me would be In 2013 Training for Success won the Aontas I was on a PLC course after I finished school, fantastic. STAR National Award for providing “an but I never felt that I was going to be I have often thought about moving abroad, outstanding contribution to adult education. L-R: David Gillick student, Paul Sharkey, successful on that course. After that ended, to somewhere where the weather picks me Epilepsy Ireland, Maire Tansey course I was doing nothing for five months, while up, rather than brings me down. Having the facilitator, Denise O’ Connell student, Honor waiting on my disability allowance. experience of independent living gives me Broderick, course manager. 6
OVERCOMING MY EPILEPSY I was chewing my chicken, when my A more lighthearted moment occurred vision weakened, and rapidly began to when we tried to isolate the reason circle. I begged my father for help. When behind my seizure. The doctor implied he asked me what was wrong, I mumbled that I’d overdone it on drugs or alcohol. something about a panic attack, as it felt His persistence on this suggestion still like the quickest and most logical way to makes me laugh .At the time, I had this explain whatever was happening. long, dirty, tangled hair stretching down my back, and since I wasn’t a saint for Ironically, my biggest challenge to date, sleeping and eating, I looked far from my my anxiety, was the last thing I referenced best. before an even bigger one emerged. It took some convincing, but he eventually According to my father, I fell out of my got past that possibility. chair, but he caught me before I hit the ground. A stranger then assisted him in From there, the doctor pointed out that laying me flat on the floor, and provided one in twenty people will have a one his jacket as a pillow. off seizure in their life. So, unless I had a repeat experience, then no accurate It’s unlikely I’ll ever know who he is, or Kevin O’Connell, a 19 year old diagnosis could be made. Following a that he’ll ever see this, but I extend my journalism student, will document his night of cautionary observation, I was sent gratitude. I know that if brains were epilepsy story in a series of articles for home to play the waiting game. Anxiety’s switched, I’d have frozen. Epilepsy News. In this piece, he talks favourite game. However, that is irrelevant, Once down, I started to shake, violently. my gripes with the Irish health system are about his first seizure. As I type this, it’s like my bones feel the for another blog. Epilepsy hung over me, like a cloud of ghosts of those violent tremors. There depression. For so long, I was ashamed of were several ugly side effects, such as my condition. That was until I slayed the saliva and leftover pieces of chicken racing stigma, and popped the cloud, letting The only positive from my mouth. In the few conversations the truth of my epilepsy sprinkle over my I’ve allowed to occur about the seizures, from my first seizure is that life. In this series of articles, I will share this those are all the details I can bear to hear. it changed my perspective truth, starting with my very first seizure. I woke on a stretcher, feeling groggy, and on family. The seizure occurred on December 15th, being guided towards an ambulance by a 2017. Over a year before I was officially paramedic. Behind her was the winter sky, diagnosed as having epilepsy. It was a dark as ever. Like her, it was beautiful, and The only positive from my first seizure is Thursday, and I spent the day at school, it all felt like a dream, until my father came that it changed my perspective on family. being my awkward self, and suffering into sight, with a relieved, but horrified Before, thanks to teenage moodiness through what already felt like an endless look on his face. and a messy past, I categorized them as fifth year. Physically, I felt fine, so once compulsory friends rather than family. He would have no issues with school concluded, I decided to go for food However, the looks on my parents faces, remembering this experience. It had been with my father at a well known petrol and the breathless presence of my siblings burned into his brain. Every last second station/food court. at the hospital, reacquainted me with the of it. This is where my memory becomes meaning of family. I repeatedly vomited at the hospital, from slightly fuzzy. I remember moments, but With all that in mind, I went home, sat a combination of the seizure itself, and the not in concrete fashion. It feels like I was down against the wall, and sarcastically obviously chaotic ambulance ride. Once already floating out of consciousness, and welcomed epilepsy into my life. However, over the initial shock, I thought “must have just didn’t notice. no amount of sarcasm, worry, or hiding been some dodgy chicken.” I remember being in the car, and being could have prepared me for the epilepsy It didn’t take long the doctor to mention journey set to follow. asked to check if any traffic was coming the words “seizure”. I instantly thought from my side. The usual anxiousness and Kevin will continue to write about his of the stigma, of those freaks who can’t self-consciousness were present, as I epilepsy experience in the next issue of watch television or handle strong lights. ordered my chicken-roll from the hot food Epilepsy News and you can also follow Those who live an unliveable life and counter. Most of all, I remember those last his blog on kevinskick.wordpress.com. are an absolute burden on absolutely few moments, before I passed out, before everybody. As if anxiety didn’t bring my life changed forever. enough of a stigma and weight. 7
THE ROLE OF NEUROSCIENCE IN TREATING EPILEPSY The brain is a complex organ with 100 therefore directly related to this clinical billion brain cells and 0.15 quadrillion measurement. connections, or synapses, between Using these approaches my group aims those brain cells. Remarkably, the to carry out research that addresses circuits of brain cells which produce fundamental questions about epilepsy a seizure in the whole brain can be but also has the capacity to translate studied at a much more basic level. For findings into the clinic and ultimately example, brain cells, or neurons, can be improve the treatment of people with grown in a petri dish and are capable epilepsy. of forming connections between themselves that are similar to those An example of this type of work is connections in the intact brain. This as follows. Within the brain there cell model can be used to study seizure is a molecule which acts to help activity in the lab and is an important neurons communicate with each Mark Cunningham is the recently tool to assess potential anticonvulsant other. The molecule, glutamate, is a appointed Ellen Mayston Bates features of new drugs. Similarly, thin neurotransmitter and when released Professor of Neurophysiology of slices (0.5-1 mm) of brain tissue can be from the endings of one neuron it acts Epilepsy at Trinity College Dublin. prepared and kept alive in such a way on another neuron to excite it. This In this piece, he explains the that the electrical activity of seizures excitation causes neurons to generate importance of neuroscience in generated by these intact brain tissue electrical signals or spikes and too much treating epilepsy. sections can be examined. The type glutamate can cause uncontrollable ‘Electricity is life but electricity is an invisible of seizure activity seen in these slices electrical spiking. If unchecked fist punching up your spine, knocking your relates directly to seizure observed in these spiking neurons can produce brains right out of your skull.’ the intact brain and we can also study the electrical storms that underlie Ray Robinson this using animal models of epilepsy. seizure generation. Normally, levels of A variety of models of epilepsy are glutamate are tightly regulated in the The quote above captures the main available for scientists to study. These brain however in certain conditions theme from Ray Robinson’s debut range from models in which chemical glutamate levels can become very novel ‘Electricity’ – an evocative and agents, termed proconvulsants, are high. This frequently occurs around unsentimental description of living administered to the animal which brain tumours particularly in the case with epilepsy. Through the narrator and then goes on to exhibit spontaneous of low grade gliomas. Patients with protagonist, Lily O’Connor, the reader seizures. Other models include where this form of brain tumour experience is given an insight into Lily’s attempts genetic manipulations associated with epileptic seizures and it is thought that to deal with her difficult to control epilepsy have been made. We also their seizures are due to an excess of seizures as they impact on her life. Lily’s work with models of brain tumours or glutamate. We work with slices of live complex wider existence is soothed by traumatic brain injury, both conditions human brain tissue obtained during a romantic liaison with an electrician – a in which epilepsy is commonly seen. an operation to remove this type of girl with abnormal electrical discharges brain tumour and we have been using rescued by an electrician? How do we study epilepsy? As neurophysiology to record seizures in Can studying the abnormal electrical mentioned above, seizures arise from these human brain slices and study discharges associated with epilepsy alterations in how brain cells generate the role that glutamate is playing. Our provide insights that might provide electrical activity and communicate work suggests that currently available better treatments for those living with as networks. In order to eavesdrop drugs, which target a particular type of epilepsy? This question is central to on this electrical activity we use an glutamate receptor, may be better at the research that my laboratory at approach called neurophysiology. limiting seizures associated with brain Trinity College Dublin hopes to address. Neurophysiology is the study of the tumours than other drugs presently Despite there being more than 30 functions of the nervous system. used. different types of seizures, all share the This technique is directed towards unravelling the question of operation As captured in the quote at the fact that underlying the seizure is a of individual neurons, connections start of this article electricity plays a ‘misfiring’ of brain cells. This is due to between neurons, interactions between fundamental role in epilepsy. I aim to alterations in how these cells generate groups of neuron and the emergent carry out research which shines a light electrical activity and communicate network features that arise from all on the abnormal electrical discharges between each other. These electrical these levels of function. All of the which give rise to the epilepsy. In doing and chemical disturbances give rise afore mentioned levels give rise to so I hope to provide answers about how to a disorganisation of the electrical patterns of electrical activity which epilepsy occurs but more importantly signals between large numbers of brain can be recorded by electrodes placed use this knowledge to improve how the cells producing an electrical storm in on the scalp – commonly known as condition can be treated for the benefit the brain. Such uncontrolled electrical the electroencephalogram or EEG. The and wellbeing of patients, their carers storms cause a change in awareness, activity we study in the laboratory is and families. movement or sensation – a seizure. 8
NEW DISEASE MODEL SHEDS LIGHT ON MITOCHONDRIAL EPILEPSY number two types of brain cell. Diseased tissue had fewer inhibitory brain cells (those that reduce overall brain activity) and also fewer astrocytes- crucial support cells which regulate, amongst other things, the levels of the chemicals which brain cells use to communicate with each other. Previous studies showed that experimentally reducing mitochondrial function in otherwise healthy tissue was not enough to trigger seizures on its own. So, Mark’s team realised that some of the changes seen in the post-mortem tissue must also be an important part of the disease. To test this, they took small pieces of healthy brain tissue from rats and used drugs to block the activity of astrocytes – one of the cell types lost in the post-mortem tissue – at the same time A new blog called ‘Epilepsy in English’ from academics at as blocking mitochondrial function. This made the pieces of FutureNeuro aims to present epilepsy research papers in brain tissue start to generate seizures. Further analysis showed plain English so that they are accessible to everyone. In that the previously healthy tissue also began to look like tissue the first of a series of articles Dr. Gareth Morris discusses with mitochondrial epilepsy. This means that the team were mitochondrial epilepsy and a recent study by Prof Mark able to create the first disease model of mitochondrial epilepsy. Cunnigham’s team on the subject. This is a massively valuable research tool to try to find new treatments. Our brains are hungry beasts With the model created, Mark’s team then used a variety There are around 86 billion (yes, billion) electrically active of common anti-epileptic drugs, to see if they could stop cells in the average human brain. Each one of these cells can mitochondrial seizures. Just like the real condition, the seizures connect to multiple others, adding up to something like 10 in this model did not respond to most drugs. But – promisingly trillion (yes, trillion) intricate electrical connections in the brain. – they were stopped by one drug, sodium pentobarbital. And this doesn’t even take into account numerous non- This is interesting because sodium pentobarbital effectively electrical cells which carry out vital processes like mediating compensates for the lost inhibitory brain cells, by mimicking the levels of critical brain chemicals and providing structural the action of a chemical called GABA which is normally support. All of these biological processes use up energy and so, released from inhibitory cells. unsurprisingly, the energy bills in the brain start to add up. This finding gave the team another clue about mitochondrial But where does this energy come from? epilepsy. In a healthy brain, GABA can be made from a Each of the cells in the brain (and also in the rest of the body) chemical called glutamine. Usually this glutamine is produced has its own built-in batteries known as mitochondria. The main by astrocytes but, as the team already showed, astrocytes are function of these tiny structures is to take energetic nutrients damaged in mitochondrial epilepsy. In a final experiment, and convert them into a form that the cells can use. The useful Mark’s team added glutamine to their mitochondrial epilepsy energy currency in the cell is a molecule called ATP and it is at model. They showed that replenishing the lost glutamine the heart of all biological processes that require energy. means that the brain is able to restore GABA and stop seizure And if it fails? activity at the same time. Now, as with any biological process, there is a potential for This research paper is very exciting for mitochondrial epilepsy. mitochondria to stop functioning properly. It is estimated that Not only does it provide us a new disease model that we can about 1 in 4000 people have mitochondrial disease. Of these use to better understand the disease, it also suggests new people, about a quarter will have ‘mitochondrial epilepsy’, treatments which might work in the condition. where their condition leads to seizures. Mitochondrial epilepsy Indeed, Prof Cunningham told us: ‘’We believe this work is notoriously difficult to treat and, on top of that, we don’t provides important insights into the mechanisms which really know exactly how problems in the mitochondria can underlie mitochondrial epilepsy and provides future avenues cause seizures in some people and not in others. for developing novel treatments for this condition. We What do we know about mitochondrial epilepsy? are currently examining how available treatment may be Not very much! In fact, because we know so little about re-purposed to treat this form of epilepsy based on the mitochondrial epilepsy, we don’t even have a disease model – mechanistic underpinnings we have discovered.‘ a way to mimic the disease in an experimental setting so that We do have to be cautious at this point. Just because a drug or we can test new drugs. a treatment works in a disease model, it does not mean that it What does the new research show? will work in real mitochondrial epilepsy. This paper provides a They began by looking at post-mortem human brain tissue very strong beginning for further research into mitochondrial from people who had mitochondrial disease. This gave epilepsy with the hope that one day these treatments could be them a few clues about how the condition could lead to used in the clinic. epilepsy. Along with the expected decrease in the activity of For more articles log onto epilepsyinenglish.wordpress.com. mitochondria, they also observed specific reductions in the 9
EPILEPSY AND EXERCISE a check list to remind ourselves and It is important to have both types of most importantly remain safe with our training in a program but remember exercise. the most important thing is that you’re • Stay well-hydrated and eat keeping yourself safe. something light before exercising. Getting Started • Remember, don’t continue exercising The key is to start small and set if you feel faint, lightheaded or measureable and attainable goals. nauseous. Remember, research states that 30 • Don’t overexert yourself – know your minutes of physical activity most days limits and be kind to yourself. of the week is enough. Why not look at • If heat or becoming overheated is a breaking this into 2 x 15 minute blocks trigger for you, avoid studios which per day when starting off or even 3 can increase this and exercise in an blocks of 10 minutes? Try something air-conditioned gym or at a cooler simple like a walk around your block. time of day. Another way to get moving more is • Let family or friends know your to just make your daily activities more walking, jogging route or exercise active. Jog up your stairs every time you location before you leave, and how climb them. Park in the spot furthest long you will be out. Mark O’Reilly is Managing Director from the supermarket entrance or get • Consider carrying a mobile phone, of FitVision, a Corporate Wellbeing off the bus a stop or two from home. which many of us do now. Partner to some of Ireland and the From there, increase your activity level • Consider wearing a medical alert UK’s biggest organisations. Mark is every week slightly and ensure it is bracelet or pendant, so people can a former professional soccer player manageable for your current lifestyle. easily identify you have epilepsy. with Bohemians here in Ireland and Aim to build sustainable habits, so opt also with Parramatta FC in Sydney, Can I do things like HIIT (High for small increases which over time lead Australia along with taking part Intensity Interval Training) or to a big change. regularly in Triathlons and Ironman Resistance Training? events. He is an experienced First of all, intensity is relative to the Should I exercise if I’m tired? Executive Coach, Personal Trainer, This is a common question. The best individual. For some, walking a mile Strength and Conditioning Coach, advice here would be to do some self- may be high intensity, but for others Nutrition Coach and Physical assessment. The first step is to figure that is just a warmup. So, it’s important Therapist and would like to share out why you are tired. Ask yourself the that you do not compare yourself to some ways in which you can use following questions; someone else, rather listen to your exercise to help with your epilepsy. body and what intensity is right for you. • Did you not sleep well the night Mark had epilepsy up until the age Higher intensity exercise is very helpful before? of 11 and he only began getting to improve fitness, increase muscle, • Are you doing too much at the involved in sports at a later age due to and help hormone balance. It also can minute and need some downtime? his condition. This article offers some be done in a shorter amount of time • Has your nutrition been off its regular tips on how you can start and most which generally can be very appealing pattern and could this be impacting importantly be safe while improving to us all. High intensity exercise is brief your energy? your health. and intense. This generally comes • Are you dehydrated and not drinking Epilepsy and Exercise in the form of interval-based cardio, enough fluids on a regular basis? Exercise is good for everyone as we bodyweight resistance training or lifting All of these things can make us tired know, but there can be a stigma weights. and need to be assessed, maybe resting around exercise and epilepsy. People With low intensity exercise, this means and focusing on fixing those problem with epilepsy get the same health working out for a longer length of time areas can be a better use of your time benefits from exercise as individuals at a rate that doesn’t stress the body as that day. I hope this information can without epilepsy; increased stamina and much. Think of taking a walk, yoga or a help you in developing that regular strength, weight and fat loss, improved leisurely bike ride, I would recommend amount of activity needed to energise mood, reduced stress, better sleep, 1-2 sessions of low intensity work per both body and mind. lower risk of illness- the list goes on and week. Also remember just adding in For further exercise tips and routines on. Before I offer some advice on how more steps through your day has plenty check out www.FitVision.ie. to get started let’s look at a few key of health benefits so use your lunch points to consider in the build up to See also Epilepsy Ireland’s exercise break to up the total steps for the day, embarking on your new fitness regime. section on our website : https://www. especially now coming into spring and epilepsy.ie/content/sport Some of the following you will certainly summer. know already but it is no harm to have 10
LEARNING TO BREATHE AGAIN heat and sometimes after even I think my problems with epilepsy have catching my reflection in a mirror. My improved over time after surgery but daytime seizures completely stopped, as soon as I got the hang of breathing but nocturnal seizures became more lightly through my nose during the day, of a problem. I did find after-effects the next nocturnal seizure I had was so such as strong paranoia began to fade much better. I didn’t have that copper out, but some of the effects I noticed taste in my mouth and was able to get the next day apart from a bad memory up out of bed. Even if I get that feeling were a throbbing headache, a dry taste of a panic attack coming on, I still find in my mouth so that anything I ate that as long as I keep my mouth shut tasted of copper. I won’t have one, but it’s had such a I’d stopped having daytime seizures, positive effect on my nocturnal seizures but I sometimes felt an aura come on that sometimes I have to look at the as if I was going to have one. When I sleep pattern on my phone to decide was out for lunch one day, I picked out whether I’ve had one or not. There have my reflection in a shop window and been times during the day when I get got that frightening feeling of déjà vu that aura that used to come on before that I remember having just before I had a seizure. Now I naturally start to a seizure usually starts. It didn’t turn concentrate on breathing in and out Epilepsy Ireland member Jenny through my nose and the feeling goes into a seizure, but it was so long since Snook (33) discusses an alternative away. I’d had that feeling I remember how treatment that helped her anxiety scared I was. My heartbeat sped up and The first thing my neurologist said and epilepsy, which is known as ‘The I started to feel like I couldn’t breathe when I told him was: “Do you know Buteyko Breathing Method’. before it turned into a panic attack. I how important it is to breathe through Epilepsy first became a problem know how many people think they’re your nose?’ If I start to feel like I’m when I was 13 and started having having a heart attack when this feeling going to have a panic attack, I know if small complex partial seizures. It was comes on. I remember a big crowd I breathe in and out through my nose, something I was able to handle until standing around me on Henry St and I might feel out of breath, but it never I finished college when postictal someone coming out of Clarke’s Shoes goes to my head. I’ve also stopped psychosis became a problem. This with a pillow for my head. having seizures completely and think continued for about 3 or 4 days there are always safe, natural methods After that I was afraid to go out for after I had a seizure. Some of the that help, it’s just up to the person to lunch when I was in work but found effects included insomnia, paranoia, research them and try them out. out how helpful it was to breathe thinking that people were constantly through a paper bag when my Although Lamictal is still something talking about me and hearing voices. heartbeat sped up. I began to read I take for epilepsy that I’d never leave Sometimes I even ended up in hospital online that lightly breathing in and out the house without having. I think it’s after a panic attack. My medical through your nose (Buteyko Breathing also worth trying alternative treatments team in Beaumont Hospital believed Method) so that you don’t breathe in like the Buteyko Breathing Method but neurosurgery might be able to help too much oxygen, also helped when I only staying on it if it works well for me. felt a panic attack coming on. you. After all everybody’s epilepsy is Five years after surgery, I am now unique. working in a permanent job for the Buteyko Breathing Method first time as content executive for After reading a book called “Anxiety a management software company Free: Stop Worrying and Quieten Your Epilepsy Ireland would like to in Dublin, giving me the chance to Mind (Featuring the Buteyko Breathing highlight that over-breathing or research and write my own pieces. I Method)”, by Patrick McKeown, I tried hyperventilation can trigger some had the choice to work from home or the technique of only ever breathing seizures for certain individuals. the office, as long as articles are written through my nose. Apart from anxiety Everyone’s epilepsy is unique and on time. This really helped when I made a link between taking in deep before you consider any alternative epilepsy was more of an issue. It’s still breaths through my mouth and treatments such as the above please great to know I have the choice but it’s disrupted sleep. contact your GP. even better to know it’s not a problem I I made the link between holding have to worry about anymore. my breath in my sleep and then over-breathing through my mouth Life after surgery afterwards, to my daytime sleepiness, Neurosurgery helped a lot with the problems with memory and amount of seizures I used to have concentration, headaches and dry during the day. Usually from tiredness, mouth. 11
JOE SCHMIDT SUPPORTS SEIZURE AWARENESS CAMPAIGN FOR INTERNATIONAL EPILEPSY DAY among the Irish public over the past five years. There are over 40,000 people International Epilepsy Day (February with epilepsy in Ireland, so it is vital 11th) was one of the most high profile that we all know the basics of how days in recent years with widespread to respond to a seizure if ever called coverage. Epilepsy Ireland used the upon.” day to focus on seizure awareness with Ireland Rugby Coach, Joe Schmidt Epilepsy Research Explained Event supporting this year’s campaign. Meanwhile, Epilepsy Ireland and FutureNeuro were pleased to recently Epilpesy Ireland CEO Peter Murphy co-host a Public Seminar to mark said: “We were delighted to have Joe International Epilepsy Day. The seminar Schmidt again supporting the need was for people with epilepsy, their for greater seizure awareness through families & carers and highlighted the the T.E.A.M. campaign. Joe’s association latest developments in epilepsy research with Epilepsy Ireland has been a major in Ireland and internationally. A selection factor in improving seizure awareness of presentations from the event can be watched via this link: https://goo.gl/ This image of Joe Schmidt was shared by thousands of people on social media to xnKqjn. mark International Epilepsy Day. Epilepsy Ireland Patron Rick O’Shea told his Political activist Sile Ni Dhubhghaill spoke Asia Enterprises were kind enough to drop epilepsy story on twitter. about her epilepsy in the Irish Independent. sweet treats into the Epilepsy Ireland office to mark the day. In Brussels, Irish MEP Brian Hayes brought together his colleagues for Over 200 people attended Epilepsy Research Explained in the Royal a seminar on epilepsy. College of Surgeons in Ireland. Online highlights Other media highlights Epilepsy Ireland Facebook posts reached 100,000 people An interview with rugby player BJ Botha about his son’s from February 1st to February 12th. epilepsy was featured in the Irish Times. Over 72,000 impressions on February 11th on Twitter and The Pat Kenny Show on Newstalk featured a special report #EpilepsyDay was the most talked about topics on the same on epilepsy which featured an interview with Colin Doherty, social media platform. Lorraine Lally and Donna Kennedy. Famous Irish people such as Cian Healy, Minister Finian International Epilepsy Day also enjoyed widespread regional McGrath and Gerry Adams tweeted their support for coverage through many media outlets (The Kerryman, #EpilepsyDay. Evening Echo, The Connaught Tribune etc). 12
FUNDRAISING Lunch with Joe Vhi Women’s Mini Marathon Cape Challenge Former Munster and South African Rugby The VHI Women’s Mini Marathon, takes player BJ Botha pictured (left) during the place this June bank holiday weekend in Cape Challenge in South Africa. BJ Botha is Dublin and is the largest Women’s event of raising funds for Epilepsy Ireland. its kind in the world. To get involved please contact Luke Meany on 01-4557500 or Volunteers needed! Epilepsy Ireland’s annual fundraising email lmeany@epilepy.ie. Epilepsy Ireland are looking for lunch will be held on May 9th 2019 in Fire volunteers in the Cavan area to Restaurant Dawson St. take up a church gate collection The event will involve a drinks reception, on 20th & 21st April. Please followed by a 3 course lunch. We will then contact Barbara on 01-4557500. be having a panel discussion where we will chat with Irish rugby coach Joe Schmidt and World Cup winner, and former Cork Marathon Munster rugby player BJ Botha. Tables are The 2019 Cork City Marathon, now sold out. If you or your organisation Half Marathon & Team Relay will would like to donate a prize for the event take place on Sunday 2nd June. please contact Luke Meany on 01-4557500 Entry is now open. Log onto or email lmeany@epilepy.ie. www.epilepsy.ie/content/get- involved for more details. PURPLE DAY Landmark Buildings around Ireland turn Purple in Support around the country to ‘turn purple’ to raise awareness of epilepsy of Epilepsy Awareness on March 26th. Almost 40 well known Irish buildings showed Epilepsy Ireland with the support of Joe Schmidt promoted their support for the cause including the Convention Centre , Purple Day this year by encouraging buildings and businesses UCC and Kilkenny Castle. Joe Schmidt shows his support for Purple Day. The Convention Centre goes Purple for epilepsy awareness. 13
REGIONAL EVENTS Carmelite Community Centre, 56 REGIONAL OFFICES KERRY Aungier Street, Dublin 2 NORTH EAST 10.30am – 1.30pm Cork 16/04/2019 Commencing Wednesday May 1st 21/05/2019 Tel: 021 – 4274774 Kerry: Family Morning for 6 Wednesday mornings Monaghan; Seminar for Niamh Jones, Loretta Kennedy Venue: TBC Teachers and SNAs njones@epilepsy.ie 10.30am-1pm 23/05/2019 Glencarn Hotel, Monaghan lkennedy@epilepsy.ie Support, Information & Toolkit 6.00 – 9.00pm 28/05/2019 Group for People recently East For more information or to Tralee: Support Group for diagnosed with Epilepsy or Tel: 01 - 4557500 register please contact Mary at Parents of children with Parents of Children recently Edel Curran, Carina Fitzgerald the Dundalk office epilepsy diagnosed with Epilepsy – ecurran@epilepsy.ie The Manor West Hotel, Tralee 23/05/2019 cfitzgerald@epilepsy.ie Morning Group 10am. Thursday May 23rd 2019 at Navan: Parents Buccal North-East Carmelite Community Centre, 56 Midazolam information session Killarney: Support group for Tel: 042 - 9337585 Aungier Street, Dublin 2. Navan Education Centre, Navan, people with epilepsy Mary Baker 10am – 1pm Co. Meath KDYS centre Killarney mbaker@epilepsy.ie For more information or to 10.00 – 1.00 Wednesday 10th April Midlands register please contact Carina For more information or to Wednesday 8th May Tel 057 9346790 or Edel on 01-4557500 or email register please contact Mary at Wednesday 12th June Cliona Molloy cfitzgerald@epilepsy.ie the Dundalk office 10.30am cmolloy@epilepsy.ie 20/05/2019 NORTH WEST South-East Tel: 0567789904 Tralee: Information Evening for MID WEST Teachers and School Staff 09/04/2019 Miriam Gray The Education centre, IT Tralee 11/04/2019 Sligo Outreach Service mgray@epilepsy.ie 4.30pm Limerick: Nurse Talk for women Sligo Office Mid-West with Epilepsy Tel: 061 - 313773 Tralee: Outreach Appointments 10.30 - 12.30 Limerick Education Centre By Appointment only contact Veronica Bon available each Monday at Kerry 6pm - 9pm Agnes vbon@epilepsy.ie university hospital or in Tralee Further information please 02/05/2019 21/05/2019 Kerry contact Kathryn Parents information Session Sligo: Information Session Tel: 064 6630301 and Buccal Midazolam for Parents, Families & Carers. Kathryn Foley WEST Demonstration Administration of Buccal kfoley@epilepsy.ie Clare Education Centre Midazolam West Tel: 091-587640 09/04/2019 22/05/2019 St Michaels Family Life Centre, Edel Killarney Galway Epilepsy Nurse Limerick: Parents Inner-wise Church Hill, Sligo ekillarney@epilepsy.ie Presentation Session 6.30pm to 8pm. Maldron Hotel, Oranmore, Galway Radisson Hotel Limerick Please call Agnes to confirm your North-West 11am - 1pm attendance: Tel: 074 9168725 CORK 29/05/2019 Agnes Mooney DUBLIN Letterkenny: Hospital Outreach amooney@epilepsy.ie 29/05/2019 Service 08/04/2019 Cork: Support Group for Out Patients, Scally House Dublin: Support, Information Parents of Children with Letterkenny SOUTH EAST & Toolkit Group for People Epilepsy Agnes will be available to meet recently diagnosed with Bishopstown GAA Club with you at The Neurology Clinic 02/05/2019 Epilepsy or Parents of Children 7.30pm Wexford: Epilepsy Awareness recently diagnosed with presentations Epilepsy 22/05/2019 Maldron Hotel Wexford Carmelite Community Centre, 56 Cork: National Epilepsy Week Epilepsy Information Stand Ireland 2pm - 3pm - For Professionals: Aungier Street, Dublin 2 “On Epilepsy management with 6pm – 9pm Cork University Hospital the focus on recognising and responding to Seizures” 24/04/2019 Arklow: Outreach Service 10am - 4pm National 2.30pm - 4.30pm - For People with Epilepsy: “Epilepsy and Seizures” Health Centre, Castle PARK, MIDLANDS Conference Arklow, Co. Wicklow Guest Speaker: Cora Flynn By appointment only contact 24/05/2019 SAVE THE DATE Advance Nurse Practitioner for St Carina Portlaoise: Information Stand Vincent’s Hospital Dublin Saturday 28th Portlaoise Hospital 01/05/2019 10am - 2pm September in the 21/05/2019 Dublin: STEPS (Support and Waterford Information Stand Radisson Blu Hotel, Training in Epilepsy Self- Little Island, Cork. University Hospital Waterford Management) for People 10am - 3pm with Epilepsy for 6 Wednesday More details to follow in Mornings Summer issue. 14
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