Epilepsy in the Family

Epilepsy in the Family

Suzanne Yanko

SMASHWORDS EDITION

* * * * *

Epilepsy in the Family

Copyright © 2010 Suzanne Yanko

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior written permission of the publisher.

The information, views, opinions and visuals expressed in this publication are solely those of the author(s) and do not reflect those of the publisher. The publisher disclaims any liabilities or responsibilities whatsoever for any damages, libel or liabilities arising directly or indirectly from the contents of this publication.

A copy of this publication can be found in the National Library of Australia.

ISBN: 978-1-921791-40-6 (pbk.)

Published by Book Pal

www.bookpal.com.au

* * * * *

For Daniel: so loving, so dearly loved

Daniel Marcus Dummett 1982-2006

Son, brother, passionate Collingwood supporter,

promising horticulturalist, trusted friend to many

"The true meaning of life is to plant trees under whose shade you do not expect to sit"

Nelson Henderson

Contents

Prefacevii

Forewordix

Part One: A diagnosis of epilepsy

1. The author’s story

2. What is epilepsy?

Definition

The epilepsies

Genetics

Causes of epilepsy

Febrile convulsions

What epilepsy is not

3. Epileptic seizures

Classification of seizures

Triggers

Individual experiences of seizures

4. Gaining control

Investigating the possibility of epilepsy

Approaching the doctor

The tests

Management of epilepsy

Self-image

Talking about epilepsy

First aid during a seizure

5. Medication

The value of drugs

The drugs

Control, not ‘cure’

6. SUDEP - sudden unexpected death in epilepsy

7. Epilepsy surgery

Background

My experience

Further tests and making the decision

Telling others

Getting support

Testing in the monitoring room

Distractions

What happens in the monitoring room

After the tests

The final decision

Surgical procedure

Max’s story - an update

8. Glossary

Part Two: Living with Epilepsy

9. The truth about epilepsy

Breaking down the myths

10. Living safely with epilepsy

Attitude

Practical steps

Falls

Leisure activities

Living with difficult epilepsy syndromes

11. Going to school

Integration

Schooling – Rick’s experience

12. Growing to independence

Interests

Driving

At work

13. Men & women

Ladies first

Pregnancy

After the birth

Menopause

Watching from the sidelines

Blokes and all manner of men

14. Different paths ... to the future

A perspective on traditional Chinese medicine

Vagus nerve stimulation

Other developments

Progress on all fronts

Community perception

15. More reading, web sites

* * * * *

Preface

This marvellous book intertwines the author’s personal story of epilepsy, and that of other sufferers, with practical and up-to-date information on the evolving knowledge of epilepsy, how it can be treated and above all how to live a normal life with it.

Epilepsy may affect the brain, mind, and soul of the sufferer.

Brain, in the medical and scientific sense that epilepsy is a group of physical disorders due to abnormal brain function. The diverse manifestations of epileptic seizures can transiently affect all aspects of the control of the body, perception by the senses, as well as higher mental functions such as memory, thoughts and behavior.

Mind, in the sense that the uncertainty of when seizures will occur can have a pervasive effect on many aspects of the sufferer’s psychological well-being and enjoyment of life.

Soul, in the sense that mysteries of epilepsy and its manner of transiently robbing sufferers of control of their bodies may affect their perceptions of who they are and how they interact with their families and society and, if not well handled, can sap the very essence of their being.

Proper management of epilepsy involves dealing with all three of these aspects.

Epilepsy can be defeated and for this needs to be a partnership between the physician, sufferer and their family. Dispelling myths, while promoting education, optimization of lifestyle and attention to psycho-social issues, all go together with appropriate medical therapy in facilitating minimisation of the impact of epilepsy and achieving the goal of a normal life.

There have been great advances in the understanding and treatment of epilepsy in the last few years and the pace of research is thankfully increasing.

Yet epilepsy remains a challenging problem, particularly for those families who are suddenly faced with it. This book provides an accessible and informative guide that will help, in the words of the global campaign against epilepsy, to bring epilepsy out of the shadows.

Samuel F Berkovic AM, MD, FAA, FRACP, FRS

Laureate Professor, University of Melbourne

Director, Epilepsy Research Centre, Austin Health, Melbourne, Australia

* * * * *

Foreword

Epilepsy is a complex but not necessarily difficult subject. Nearly 20 years ago, when my own condition was diagnosed – before the internet became part of our daily lives – I wrote the book I wanted to read.

I wanted to fill the gap between medical texts and over-simplified pamphlets, one of which actually said: Your life need not change. Oh yeah, I thought, who picks up all the driving for the kids? And can I still teach senior classes full-time?

So I pestered the medical specialists at every opportunity and talked to people with epilepsy I encountered in hospital and through friends and acquaintances – because everyone seemed to know someone with the condition.

In the intervening years my own family has experienced the very best and very worst that can happen for people with epilepsy. My successful surgery in 1992 has led to an almost complete resolution of the temporal lobe seizures I used to have. But one night late in 2006 our beautiful 24-year-old son Daniel died when experiencing a massive seizure at home, the second in a week and atypical for the pattern of generalised seizures he’d had since he was a teenager.

Nobody had expected this, or even that such different epilepsies would be found in our family. There was obviously more to learn, and more to tell.

In particular, the issue of SUDEP – sudden unexpected death in epilepsy – needed to be confronted. And there have been developments in our knowledge of genetics, newer drugs, promising new devices - and a proposed new classification of seizures.

I have not discussed at any length the stigma that has blighted epilepsy for centuries, although I am aware that it still exists. Instead, on a more positive note, I have tried to look at the progress that is being made.

Epilepsy associations continue to work hard, finding new ways to help people – especially youth – with gaining the confidence and self-esteem that their families work hard to foster. I believe that society is at last getting the message.

And, of course, the internet has proved an overwhelmingly positive resource, both in terms of finding specific information, and through blogs and twitters, getting warm support from other people with epilepsy in the family.

Why should I be the one to tell the story? I am not, and never was, a neurologist – or anything else medical. That, of course, is the very reason I wrote Coming to terms with epilepsy – and now, Epilepsy in the family.

It is my understanding of epilepsy – again, guided by some people who have the qualifications, and, just as importantly, others who have the experience of epilepsy in their family.

A major change triggered by my epilepsy surgery was that I switched direction and left the classroom for the uncertainty of journalism – print, online and (the true love) broadcasting. That is why, in this book, I have presented explanations of the more difficult issues from more knowledgeable sources than my own, or others’, experience.

My first acknowledgment, therefore, is to those organisations which make information freely available to enhance the understanding of epilepsy: notably Epilepsy Australia, Epilepsy Bereaved UK, the Australian Pharmaceutical Society and the Epilepsy Foundation of Victoria. The EFV’s wise librarian, Pauline Brockett, helped guide my reading and suggested some issues which needed canvassing.

I was fortunate to have the best editor in the business, John Kiely, to steer me from embarrassing mistakes and ambiguities, and Dr Sam Berkovic to keep the medical facts on track. I thank them both for their encouragement and close work.

The Comprehensive Epilepsy Program at Melbourne’s Austin Hospital has not only played a major role in my own health, but has again provided doctors to answer questions on a number of important questions.

My own family has survived death, divorce and other trials to be, without exception, a great source of strength and support as I write this book. So have friends across Australia, with Bron’s Swan by the Lake in Perth the perfect place for this writer to hole up and finally get cracking!

As for the individuals and families who so generously shared their story, in the hope that others would be helped by telling it, you deserve the warmest thanks of all. As some preferred not to be named, I can’t publish my gratitude fully – but you know who you are!

Finally, to all those who have epilepsy or have it in the family: this book is for you. The message it brings is one of hope. The understanding and treatment of epilepsy – and the prognosis for people with epilepsy - has never been better, thanks to research, good will and support both within medical circles and the wider community.

Most importantly, you are not alone. People you have never met care about your family and what may be, at times, your struggle. I trust that this book will convince you of that truth!

Suzanne Yanko

Melbourne, 2010

* * * * *

Chapter 1

The author’s story

These days everyone knows what epilepsy is ... or do they? At least, in these enlightened times, what was called the falling sickness is now understood to be a medical condition which manifests itself in different types of seizures.

They say one to two of every hundred Australians are affected, a percentage which holds true across the world and which I once would have thought inflated. But when, in my 30s, I developed epilepsy I was amazed at how prevalent the condition was.

A friend's daughter, the mayor of our city, a colleague's father, the hairdresser's son, someone I used to teach with ... As soon as I mentioned the word, suddenly everyone seemed to have a connection with epilepsy and a story to tell.

Before that, what had I known about epilepsy? I have to admit I was ignorant. Like many people, I thought that grand mal attacks (or tonic-clonic seizures, as they are now called) were the whole picture. I had very occasionally seen people have them and

hadn't known what to do.

And in many years of staffroom talk, I'd heard that petit mal attacks can often be mistaken for inattention to the lesson. The newer name, absence seizures, alerts teachers far better to what is happening from the child's perspective.

But I didn't know that epilepsy could take yet more forms and show itself in complex-partial seizures, so subtle and insidious they could make the sufferers doubt their own sanity. I had to find that out for myself.

The subject of epilepsy is still hedged about with misinformation, fear and prejudice, although I believe that is all set to change dramatically.

Calling it for years the sacred disease, indicating the person had been seized by the Gods, hadn't helped much. Australian writer John Hanrahan once remarked that it took Christianity to hand over possession of epilepsy to the devil.

Confusion about what the gods were up to when they seized someone in this way was one of Manning Clark's puzzles of childhood when, at the age of 13, his epilepsy was identified. A chaplain told him that he had been given a gift to treasure and turn to advantage ... a common affliction for those with extraordinary imaginations, stormy temperaments and strange insights into human behaviour.

But his mother feared that God had punished her for something she had done. Perhaps I should not have let you go to Melbourne Grammar School, she wept, feeling she had betrayed her family’s Presbyterian religion for the Church of England.

I found it fairly easy when trying to come to terms with the knowledge that I had epilepsy to discount such an old-fashioned point of view but it was easier to discover what epilepsy wasn't than what it was. I started hunting through reference books but many dictionaries and encyclopaedias - even quite recent editions - were also on the wrong track, defining epilepsy as a nervous disorder or a form of brain damage.

Writer and publisher Susan Hawthorne’s poem Thesaurus reminded me of my anxious scrutiny of those texts:

* * * * *

"Epilepsy

seespasm

frenzy

nervous disorders

Embedded near spasm are: convulsion and orgasm

fit and seizure

under the general heading of Agitation

I find frenzy under the general heading of

Insanity

only a semi-colon or two separates me from

alcoholism

unintelligibility

hysteria

and a variety of manias

I wonder why it wasn't placed instead under

Oblivion, blankness..."

It took a while before I discovered the books which had caught up with the medically acceptable description of an epileptic seizure: an abnormal discharge of electro-chemical activity produced by the nerve cells in the brain.

It was a fortunate coincidence that, as I was beginning to despair of finding helpful information, the nurse at the school where I was teaching attended a conference on epilepsy and returned with Meg Beaumont's lucid manual Epilepsy and Education on the subject, written for parents and teachers with no prior knowledge of epilepsy.

This book was the first to, at least partly, describe the symptoms I'd suffered for nearly 10 years before I sought help. I can now identify those strange moments as seizures, but they were so strange and unlike anything I'd heard of that I hardly knew where to turn for help.

Putting a name to those episodes, and accepting the implications for my life, has been a journey of discovery - at first without a map. A gynaecologist was my first guide but even she could not have foreseen where the journey would take me and only served to indicate the first turning on the road.

For the first two years after I was told I had epilepsy I pursued the subject unwillingly, then with fear. Understanding and acceptance developed a very long time later. Part of the problem was clearing away my own misconceptions, particularly that epilepsy meant falling down in a fit, or at least a