Today I have the best tip for any one with PNES that I can give: read this book written by Lorna Myers.
I had no clue that there even existed a book purely written about these attacks but luckily I found it with some Internet research. I ordered it immediately from amazon and I could not wait for it to arrive. Once it did, I started reading and as soon as I read the first page I knew this book could help me. It was unbelievable how good PNES is explained and it not only sticks with that, but it also hands out some exercises to help yourself. You are not reading some medical hocuspocus language so you fully can understand what this book is trying to tell you.
There are ten chapters in this book from: What are psychogenic non-epileptic seizures? to Living with PNES. The first thing I did is reading the chapters that most appealed to me because not everything that is explained in the book has to apply to you personally. This book is exactly what it states in the title: a Guide. It is a guide for people with PNES but also for family and friends of a person with PNES. For the people that have PNES there are several exercises one can use. For instance making an episode log. A little book where you write down when an attack happened and what you felt right before it happened. This can give you more insights in the triggers of your attacks. The questions you need to ask yourself while writing the episode log are very clear and you only need to copy them. Next to the exercises it also provides you with some alternative therapies that you might want to consider trying and the use of vitamins, diets and the need for exercising are being discussed.
I’ve noticed that I am not the only one so curious about this book. A lot of friends and family already asked me if they can read it as soon as I am finished with it. I love the idea that they now can read about it instead of me struggling to explain what exactly is ‘wrong with me.’ So not only for the patient but also for family and friends it can be a good help.
This book is my bible. It is the only written guidance I could find and I am so glad I did. As a patient you feel understood and that feeling is the best feeling in the world when you have PNES.