I was reading a few books by Dr. Kabat-Zinn, Director of the Center for Mindfulness in Medicine at the University of Massachusetts Medical School. He reports how useful mindfulness is when working with medically ill patients who are in excrutiating pain.
I was intrigued by the concept of mindfulness and surprised by the similarities between it and the Western treatment approach I use with psychogenic non epileptic seizures. We are on a similar track and that ‘s a good sign.
Some key ideas: Dr. Kabat-Zinn speaks of the difference between pain and suffering. Pain is inevitable as part of life with its ups and downs we all face at one point or another. Suffering is one of many responses to pain and stems from how we frame and interpret the pain. But how do we take a path other than suffering? His answer “enter the pain, tune into it” rather than avoiding it. How many times have I heard a patient say, “Seriously, you want me to talk about the rapes, the beatings, the memories? I have spent my life trying to forget about them.” My answer: “yes, gradually, safely, together we will face the pain.” As counter-intuitive as it seems, avoiding, keeps the suffering alive and strong. By opening the gates and inviting these memories to the surface, by being with them safely, we neutralize them.
Another pearl: “You have only moments to live.” What does this mean? That you should live today as if it is your last? That you should live every moment in your life rather than letting the seconds of your day rush by? That you should be in the here and now rather than living in the past and the future. Probably all of these and more… If we spend our energy avoiding, we miss so many moments in our life, we end up being mindless rather than mindful. Mindfulness and psychotherapy of psychogenic non epileptic seizures aim to shift the balance the other way.
I have psychogenic non epileptic seizures and was diagnosed in 2009. I have worked with W. Curt LaFrance, MD at Rhode Island Hospital and have gone through CBT to learn how to control my seizures. I would like to start a support a support group in the Worcester, MA area for people with PNES.
I also have epileptic seizures and was misdiagnosed for 18 years. Please tell me how I can start a group. Thank you.
Mary Martiros
Probably one of the ways to do this would be to contact the local epilepsy centers and let them know that you are starting this up. You may even be able to shoot Dr. La France an email and ask him what centers he recommends contacting and he may even be able to send an email to these centers as well letting them know that he knows you and about your project.
Also, be patient because support groups can take some time to get up and running but stick with it. I think this is a great idea!
I was diagnosed both with Juvenile Myoclonic Epilepsy AND having psychogenic seizures in addition to it. I live in Springfield but that’s not horribly far away. I’d be interested in more information. My email is katjalynneanderson@gmail.com
Thanks Mary!
Lorna,
I’m so pleased to have read this post. Interesting enough, this is the first I’ve heard of Mindfulness yet I’ve been intuitively practicing it for years. It was using this technique that I have found peace living with seizure disorders and seizure experiences. I know that healing in my case will come only through Divine healing, however I can live in peace each day using this technique. I have helped many by using this technique with members of National Seizure Disorders Foundation. I look forward to reading more of what you have to post and eventually working together in the future. Please take a moment and review what we’re doing at national Seizure Disorders Foundation. I know you’ll be glad you are in like minded company.
Peace&Power-
Tonya Heathco, Founder
National Seizure Disorders Foundation
Hi Terrific Tonya, I read your post on linked in Epilepsy professionals and was very impressed. I hope we stay in touch and maybe meet in the future. Will you be at the AES meeting in December this year?
Hi,
Im so pleased that the Western medical world is finally beginning to recognise the tremendous healing powers of mindfulness and meditation. I’ve only been practising vipassana meditation for a year now and already it has dramatically helped in reducing my seizures, and in the general quality of life. Life has to be faced head on, the more we avoid and push away the more we repress, and the more we repress the more illness will arise in the body, in various forms. Im now grateful for having the had the seizures, with the issues i have had to face, as it can lead to tremendous insight and freedom.
Thankyou so much for this article and for all your support in creating this blog.
I am glad to see so many of us are on the same page. It is sometimes surprising to see how different theories and ways of thinking have so much in common in the end. In all, we are all working in the same direction.
I have a 14 yr old daughter with epilepsy and PNES. We are struggling to find any health care professionals in Australia, that can treat PNES. Just wondering if you knew of any one that does in Australia? My email address is lynette.tinson@bigpond.com.au.
I would appreciate any advice you can give us. Thanks Lynette Tinson
I have had PNES seizures for almost 15 years. I usually had 3 or 4 a week at least. I started doing Dialectical Behavior Therapy (DBT) and the mindfulness combined with the rest really helped me to work out my stress and learn good coping mechanisms. As far as talking about my trauma that is still very hard for me to do but I have found help with it by doing Eye Movement Densensitization Reprocessing (EMDR) also with my therapist. I have found the combination of both therapies extremely helpful and after 2 years of both therapies I am currently 7 months seizure free. Finding something that works on these seizures is extremely frustrating. Each patient is different but I think mindfulness is something we all can greatly benefit by practicing as much as possible.