PNES - In Our Words: Personal Accounts of Living with Non-Epileptic Seizures (The Brainstorms Series)
Many people are confused when they are told that they have non-epileptic seizures. It does not help that people use many different names for the same condition – such as non-epileptic attack disorder, pseudo-seizures, psychogenic seizures, or dissociative seizures. Most people diagnosed with non-epileptic seizures have never heard of the condition and do not know anyone else who has it. Although non-epileptic seizures are not rare, people’s own experiences of non-epileptic seizures are missing from most medical books. There is a need to tell people with non-epileptic seizures that they are not alone, and to tell others what it is like to live with non-epileptic seizures. Therefore, with your help, we would like to bring your own account of non-epileptic seizures to a wider audience.

We are writing to see if you would be willing to take a few minutes to write down what it is like to live with non-epileptic seizures. In particular, we are interested in your descriptions of what you experience before, during and after your non-epileptic seizures and how your non-epileptic seizures affect your day-to-day life.

We are interested in your story told in your own words and you can write about anything you feel is important. You could write about how the non-epileptic seizures have affected your relationships with others such as family members, friends, neighbours and work colleagues, or how your family, friends, doctors, nurses, therapists, paramedics and even complete strangers have reacted to your seizures. Have the seizures had an impact on your independence and financial stability, your work life and career? How have the seizures affected the way you feel about yourself and about how others see you? You may want to write about your healthcare experiences, how was the condition first explained to you, what treatments have you found helpful and is there anything that hasn’t helped, and if so why? If you have experienced non-epileptic seizures for a long time you may want to write about how your attitudes and feelings towards the seizures have changed, how did you feel in the beginning when you first experienced your symptoms, when you received the diagnosis and how do you feel now? You could write about how you cope and manage with your seizures, what have you personally found helpful?

Some people have been told by their doctor that they have both epileptic seizures and non-epileptic seizures. If this applies to you, you may also want to write about how your non-epileptic seizures are different from your epileptic seizures (if they are), how they feel differently when they happen (if they do) and how they affect your life differently (if they do).

We are also interested in other people’s experiences of your non-epileptic seizures. It would be great if you ask your spouse, children, close friend or relative/s to write about how your non-epileptic seizures affect them. However, don’t worry if you do not know anyone else you might ask to contribute. We would be very happy with your contribution on it’s own.

Your writings can be as long and detailed, or as short and brief as you feel necessary. We are interested in accounts from those who currently experience or who have previously experienced non-epileptic seizures.

Your writings will be used for educational purposes, for instance by helping others who may have just developed non-epileptic seizures to cope better. Oxford University Press may choose to publish the writings in a book as part of the Brainstorms series, which will be freely available for sale. You can have a look at other titles that have already been published in the series on Amazon or on the Oxford University Press website.

If your writings are included in the book you will receive a free copy. We are very keen to keep your personal details confidential. To ensure this, we will not link your name with your particular contribution to the book. However, if you would like, we can acknowledge your contribution in a specific section of the book along with the names of others who have contributed. The book will be edited by Markus Reuber, Gregg Rawlings and Steven Schachter.

If you (and/or your family and friends) are willing to take part in this project, could you please complete the consent form and diagnosis forms, and enter your writings in the spaces provided below.

If you would like further information before you send us your writing you can also contact Gregg Rawlings, Academic Neurology Unit, Royal Hallamshire Hospital, Glossop Road, Sheffield, S10 2JF, ghrawlings1@sheffield.ac.uk.

Thank you very much.
Kind Regards,

Professor Markus Reuber Professor Steven Schachter
Honorary Consultant Neurologist Professor of Neurology

Gregg Rawlings
PhD Student

CONTRIBUTOR CONSENT FORM
1. Name of contributor *
Your answer
2. Date of birth (you must be 18 years or older): *
Your answer
3. Address *
Your answer
4. Telephone number *
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5. Email address *
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6. I understand that my writings will be considered as a potential contribution to a book with the tentative title of In Our Words: Personal Accounts of Living with Non-Epileptic Seizures (The Brainstorms Series), which will be published in the Brainstorm series by Oxford University Press. All personal and most place names contained in my writings will be replaced with pseudo-names by the editors, (Markus Reuber, Gregg Rawlings and Steven Schachter), who will edit my writings (please tick). The process of editing may involve selecting certain parts of my writings, replacing names or other information which would allow readers to identify the author and correcting grammatical or spelling mistakes. *
7. I give my permission for any writings I have already sent to Gregg Rawlings (e.g. via email) to be edited for the purpose of the book. *
8. If my writings are included in the book I would like to receive a free copy of the book although I understand that my writings are not guaranteed to be included *
9. If my writings are included in the book I would like my name to appear in the acknowledgements section of the book. However, I am aware any other personal details will remain confidential and no one will be able to identify which particular story I wrote in the book. Please take the time to think about what this would mean to you. If you prefer, your contribution can remain completely anonymous. If you tick yes, we will contact you prior to publication to make sure you are happy with the proposed citation in the acknowledgement section of the book. *
Required
I give my permission to allow Oxford University Press to publish my writings in anonymised form and for Professor Markus Reuber to use this material for educational purposes. I understand I will not receive any payment or other forms of compensation for my contribution.

By signing this form I consent to the use by the Editors, the Publisher, and any person or company authorised by the Editors or the Publisher of all or any part of the contribution I have written and do not object to their publication or dissemination, in anonymised form, in any manner or form (for instance on websites or in printed form).

This permission extends to all editions of this work in any medium or language that the Publisher publishes or authorises other persons or entities to publish throughout the world and to excerpts, adaptations, revisions, and condensations (“Related Versions”); and in advertising, promotion and publicity for this work.

I have the full right, power and authority to enter into this agreement. I hereby waive any and all objections and legal claims of any nature, which I may have at any time now or in the future, against the Editors, the Publisher, any other publisher of any edition of this work or Related Versions or anyone else for use of the contribution I have written for this work and Related Versions.

Please print your name here (this will act as your signature): *
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Date: *
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DIAGNOSTIC QUESTIONNAIRE
Please answer the following questions asking about your seizures (if you are not the person who experiences seizures please go to question 6:
1 I can confirm that I currently experience non-epileptic seizures
2. I can confirm that I have been given a medical diagnosis of non-epileptic seizures:
3 I can confirm that I currently experience non-epileptic seizures AND epileptic seizures:
4. I can confirm that I have experienced non-epileptic seizures in the past (e.g. you may now be seizure free)
5. Is there any other information that you feel would be relevant or useful for us to know in the context of your personal account? (For example, how long have you experienced nonepileptic seizures, how long have you received therapy, when was your last seizure, how many seizures do you experience?)
Your answer
6. What relationship are you to the person who experiences non-epileptic seizures (e.g. I am his/her mother, I am his/her carer).
Your answer
YOUR CONTRIBUTION
Please enter your writings in the box below: *
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Thank you for your time and your contribution, without which this book would not have been possible.
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