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What it means to be diagnosed with epilepsy A diagnosis of epilepsy, either for yourself, your partner or for someone you care for can, without doubt, be distressing news. While some people are relieved to learn what is causing their “blackouts”, “turns” or “peculiar feelings”, a diagnosis of epilepsy is not what they were hoping to hear. In fact some people find epilepsy an especially difficult diagnosis to accept. They would rather not know they had epilepsy. Some go into denial; they just can’t believe that the doctor got it right. They may be aware that they have had a few ''turns” or "blackouts" but never attributed it to epilepsy. Nor does it help that many people can't remember having a seizure other than becoming aware of an injury or some muscle soreness when they have recovered. There is a lot of information to absorb once you have learned that you are dealing with epilepsy. The purpose of this web site is to help you come to terms with epilepsy and to ensure it has the most minimal impact possible on your life. In many cases seizures can be controlled totally – however for some this can take time and patience. Whatever your circumstances you need a good understanding of what is happening to you, and your doctor or health practitioner is the first person you need to consult. An epilepsy counsellor, available through your local epilepsy association, will be able to help you sort through the various issues that may arise and to answer many of the questions that will keep occurring to you. The truth is, that despite its prevalence in the community, epilepsy remains a poorly understood condition. Few people in the community can tell you exactly what epilepsy is and even they are often unaware that serious seizures need not involve convulsions or “fits”. Few people seem to know or understand the measures that can be used to help get people through the difficult times caused by their epilepsy. Fortunately there are people who know about epilepsy and how to minimise its impact on your life. Your local epilepsy association, established by people in your state or territory, ensures that help is available if, and when, you need it. In the process of getting to know about epilepsy you will actually learn quite a lot. Epilepsy will challenge you to put what you have learned into practice so that you can minimise or even eradicate the negative impact of this condition. But more of that later. If it is your own epilepsy that has brought you to this web site, depending on your age, your personal circumstances and your general health, the diagnosis will raise many questions for which you will want answers. You will of course want to know how to bring seizures under control and, if possible, to rid them from your life. Some people wonder if they'll grow out of it, or get over it, like so many other illnesses that just run their course. Some wonder if they should tell other people. What effect will it have on relationships including sexual relationships? And what about having children or continuing to work in your chosen occupation or to study or exercise or participate in any number of activities that we all take for granted until something like this comes along? Your personal safety and that of those in your care becomes an issue. How can you go about the life you had, or the one you were planning to have, in the face of epilepsy? The list of possible questions from people with epilepsy is a long one and Epifile will try to provide you with sensible, honest answers for many of them. If you are caring for someone with epilepsy – a child, a parent, a friend, a partner – there will be a whole range of similar questions. In fact you will be in a better position to answer some of the questions that are raised because you, rather than the person having the seizures, is the one who witnesses what happens. Epifile has been written for you as well. Epifile will get you up to speed on epilepsy, so that you understand what you are and are not dealing with. You are not, for example, dealing with a mental illness. Nor are you dealing with any form of psychic or spiritual phenomenon – even if you sometimes experience a sense of déjà vu or prescience that amazes you. What you are dealing with is a neurological chronic illness with major social ramifications.   Everyone has a seizure threshold Plainly put, everyone has a seizure threshold and, with the right amount of stimulation or provocation, can be made to cross over it. In other words we can all experience seizures under certain “provoked” circumstances. Our brains contain over 100,000,000,000 [that’s one hundred thousand million] neurons or nerve cells. Millions of these connect with each other all day long sending and receiving messages. It’s called thinking, but it also involves those things you do without thinking, things you do automatically like walking or accurately finding your mouth with the coffee cup. Or writing a note without thinking about how you are holding the pen or forming the letters, thinking only of what you’re wanting to write down. Your brain is a very busy place. The electrochemical processes involved in all this brain activity are regulated by a number of different mechanisms. If for any reason our neurons are impeded in their functioning, for even a very short time, the messages being transmitted and received will be affected and the result may be a seizure. We all can become so tired and sleep deprived at times in our lives that we can’t even think of the last thing we were thinking about. Our mind starts going blank on us. In epilepsy it does a complete crash. We may lose consciousness altogether or consciousness may be impaired momentarily – not functioning fully. External events can provoke us to have a seizure. But when seizures are unprovoked, when they happen of their own accord, whenever and wherever, and they happen on a recurring basis, then we are looking at epilepsy. Epilepsy is one of the most common chronic illnesses in the world today. Even on the most conservative estimates, over 50 million people currently have epilepsy, compared for example to 2½ million people with MS. In other words at least 20 times more people have epilepsy as have MS. In fact as many as 100 million people have epilepsy for a period in their lives – and even more will have the experience of seizures when you take into account the seizures occurring with other health conditions like diabetes. But none of that is really a comfort. Even knowing that many of these millions of people live their lives in pretty much the same way as those who have no experience of seizures, it doesn’t quite fix the problems facing you now that your own diagnosis has been confirmed. Many people with epilepsy will have their seizures under control within a year of their diagnosis. Others take a little longer. By two years out from diagnosis around 70% of people have gained seizure control. This leaves a significant number of people who don't achieve good seizure control, and it is only natural to wonder if you will find yourself in that group. Sometimes people don’t get on top of their seizures because they simply don’t do the things that need to be done, or because they don’t quite understand what is required of them. We are hopeful that Epifile will provide you with meaningful information and practical strategies to help you understand your epilepsy and manage your seizures. Epifile is a resource. So are you. And so is your doctor, your pharmacist, your epilepsy counsellor and anyone else who can help you stay focussed on managing this condition called epilepsy rather than having it the other way around with your epilepsy managing you. For most of human history epilepsy has been misunderstood Based on the rather conservative figures used above and quoted by groups like the World Health Organisation, the fact is that hundreds of thousands of Australians will experience epilepsy in their lives. Despite this we, as a community, generally know very little about it and a good deal of that is incorrect and unhelpful. We may have occasionally come across it in a book or magazine, heard about it in the media, or seen it in a film. It’s even possible that we may have seen someone having a seizure. Even so, reliable information covering the wide spectrum of the epilepsies that occur is not readily available. Even on the internet, where epilepsy sites abound – like just about everything else – a lot of the information is out of date or simply incorrect. It is staggering how many health sites, some of them linked to reputable institutions or government, either do not cover the topic of epilepsy or do so with outdated and potentially harmful information. "Ignorance is the greatest ally of fear and it is the fear of epilepsy which causes people to treat those with it as different" - Roy Beran, neurologist Epilepsy has been observed throughout history. Because it is “episodic”, it is not visible until a seizure suddenly occurs. It is therefore unlike most other chronic health conditions where people are ill in the usual ways we expect ill people to be. People with epilepsy can, in fact, be very well – right up until they begin to have a seizure. It is therefore easy to understand how a sudden seizure, coming "out of the blue", can frighten people. Throughout history people have been frightened by all kinds of illness and have often tried to explain them away by talking about being chosen by the gods or possessed by demons. For epilepsy this has been an enduring problem. A seizure, especially if it involves convulsions, is a very dramatic looking event and if it involves altered consciousness without a convulsion it can appear as very peculiar behaviour. It looks like something has temporarily taken over the person having the seizure. This has been exacerbated by the reference in Christian Scripture to a young man having a convulsive seizure in a public place. The crowd was quite alarmed. Jesus Christ is reported to have asked the young man’s father how long this had been occurring and the father replied that it had started when he was a young boy. In other words, “early onset epilepsy” as we might label it nowadays. But they didn’t have words back then like “epilepsy” or “neurology” or “paediatric medicine”. People gasped and fled or picked up rocks or prayed harder than usual. Jesus is reported to have told the father that this kind of “possession” was one of the hardest to live with. We’ve heard that story a dozen times. What always impresses us about the actions of the man called Jesus was that he went to see if he could assist. He did so by remaining calm, talking to the boy’s father, and helping them on their way. While it is not a spectacular story, it is one that has been repeated again and again throughout history with the wrong message often being taken from it. Every culture seems to have had its "beliefs" about epilepsy and those who experienced seizures were often hidden – shunned by society in every way. As far back as 400BC Hippocrates put forward a radical idea that the events we now call seizures originated from within the brain. He reasoned that it was not helpful to treat the person experiencing the seizures with religious mumbo jumbo or magic, but instead advocated the use of diet and medicines. Misunderstanding, fear and mistreatment of people with epilepsy continued right up to the 21th Century. It was only in the latter stages of the last century that a clearer and more useful understanding of epilepsy emerged, and with it came a range of treatments that finally offered most people the chance to live seizure-free. For those diagnosed with epilepsy today, the future is much brighter and offers far better prospects than at any time in history. Nevertheless the journey from the first unexplained episode to a definitive diagnosis of epilepsy can be an extremely stressful and anxious time. As we said earlier, a diagnosis of epilepsy raises many questions. What causes it? Can it be cured? How long is it going to be necessary to take medication? What other treatments are available? Can it be outgrown? What will happen with work? Is driving a car still allowed? Is it safe to have children? Is it hereditary? Does it kill people? Can it cause brain damage? Is there help available to get through it? The point is that we don’t usually have all the questions when we are first diagnosed. And when we do have a question, we aren’t always sitting in a specialist’s office or with an epilepsy counsellor on the other end of the telephone. Sometimes we will have asked the question and thought we understood the answer only to realise later on that we need to ask that question again. Epifile is meant to help you with all of this. Not only does it set out to answer a host of questions; it also tells you how to get further answers to questions not specifically dealt with here.