Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

Living with psychogenic non-epileptic seizures (PNES): new book will give patients a voice

viewWhat literature can be found about psychogenic seizures on-line, in medical journals, and even in the book I published earlier this year (Psychogenic non-epileptic seizures: A Guide) is written about PNES from a professionals’ perspective.  In these writings, the person with PNES is described and examined by the professional onlooker and as such are SUBJECTS of investigation.

Shortly after publishing my book, I received an email from someone who had bought and read it.  She (Mary) proposed a new book project; one that switched the perspective from the professional describing the patient to the patient describing him/herself.  The idea struck me as brilliant.

The project has the dual potential of contributing to our understanding of PNES through a collection of testimonials coming from across the US and from abroad. And just as importantly, it can serve the purpose of HUMANIZING those who live and suffer from PNES by allowing us to hear what they choose to share with us.

Over several weeks if not months, we worked steadily with Mary on creating a questionnaire for patients. The plan is for one of two of us (social worker and psychologist) at the Northeast Regional Epilepsy Group to conduct the interviews in person, on the phone, or via computer over the next year. We hope you will take this opportunity to make your voice heard.

This is the questionnaire (we would greatly appreciate if you read through it and let us know if we have left something out-we are still in time to make changes):

 

Please read through the questions and begin thinking about your answers. You and I will be speaking in person or via Skype or phone in the near future.  I will take notes of our interview.  Once I write up the interview which is completely anonymous, I will send it to you for your approval.  I would also like to invite you to choose a quote, affirmation, or picture that you would like to go along with your testimonial and that speaks to your journey.

 

  1. Pseudonym or initials
  2. Sex
  3. Age
  4. Marital Status
  5. Children ( if any)
  6. Employment status – Are you currently employed and, if not, why? Did you have to leave your job because of illness, (if so, how long ago and are you currently on disability?).
  7. At what age did your seizures begin?
  8. Do you know why you have these seizures?
  9. How was your diagnosis made and how was it explained to you by that doctor?
  10. How do you prefer to call your seizures (PNES, NEAD, etc.)?
  11. How long was it from the time your seizures began until they were correctly diagnosed?
  12. What do your seizures look like? How do they present themselves? For example, do you lose consciousness, become paralyzed but remain conscious, vocalize, have spasms in your arms and/or legs? Is your speech/hearing affected and how long do your seizures last?
  13. How do you feel after your seizures and what is your recovery time (minutes, hours, days)?
  14. Were you diagnosed with another disorder or illness prior to being diagnosed with PNES?
  15. What has been your experience in working with medical professionals, ( doctors, nurses, ER physicians, EMT’s, psychiatrists, neurologists, psychologists, social workers, etc.).
  16. Give examples if you have some.
  17. Have you felt heard, understood or validated by the medical profession as a whole?
  18. Are you or have you been in psychological/psychiatric treatment? What is this treatment like? How has it been helpful with the seizures and with other emotional issues? Do you feel you need something more?
  19. How would you rate or describe your quality of life since developing PNES?
  20. What benefits you the most when coping with your seizures?
  21. What exacerbates your seizures?
  22. Do you feel that you have the understanding and support of your friends and family in dealing with your illness?
  23. What would you like to tell others in your life, your family, your friends and your medical professionals, about what it’s like to live with PNES and what they can do to help you to heal from this illness?
  24. What have you learned, personally, from having PNES?
  25. What do you see in your future?
  26. Other comments…

11 Responses to “Living with psychogenic non-epileptic seizures (PNES): new book will give patients a voice”

  1. Kate says:

    This a fabulous idea and a much needed book to help us and even others who know us to understand what we go through. I would be very interested in participating.

    The only other question that might be added is:

    What if any side effects have you experienced either short term or long term as a result of having seizures?

  2. carla says:

    Hi: Dr. Lorna: I am newly diagnosed (about 8 weeks ago). I bought your book and have embarked upon aggressive therapy and treatment:

    One question I would add is “what would you tell a newly diagnosed person – how might you guide someone who is new on the journey to healing?’

    I have long thought about coming to see you personally. And Hope to be able to participate in your project.

  3. Karren says:

    I would love to be a part of the study.

  4. Danielle says:

    I think this project would be wonderful. I would love to be a subject matter. My doctors in NEPA know nothing about PNES.. I spent the last 5 days life less in bed due to a new med that they thought they would try just because. I just pray for answers. Good luck with the project.

  5. Katie Rowland says:

    I feel this would help people not to feel alone with his greatly misunderstood condition. In addition it would help those newly diagnosed with some information to stop them feel like they are crazy or not believed. It may also act as information for the medical profession since many will have never encountered someone struggling with PNES. Am from UK and happy to help with the study.

  6. Beth Hudson says:

    I was diagnosed in May 2014 with PNES and was fortunate that I was correctly diagnosed the first time and wasn’t given meds for other types of seizures. Would be willing to share my story to help others as well. I still have “spells” as we call them here in my home; however, not as long and not as often as when they first started.

  7. Pam loughlin says:

    I would also love to take part in your study. Having a disease that no one seems to be able to understand is both frustrating and depressing. With so many having the disease it is appalling that very little is being done to help. Many doctors are still skeptical that this is a legitimate illness. Shame on them and thank you for trying to help! God Bless!

  8. shlompi says:

    good work!
    tired from doctors and other medical personal
    over my medical records, no one really wants and deal with this pnes and give some light to cure

    there is still unknown reasons for my diagnosis/pnes i think for others too
    i was a combat fighter, no abuse,standard life

    hope for little compassion for those who suffer so much

  9. Katie Rowland says:

    I am thrilled to see the book published. Well done to those who produced it and contributed to it. I have been sharing it with some friends and to get a better understanding. Thank you.

  10. Jodie says:

    I would love to be apart of this. After recently being diagnosed I’ve been dealing with this ever since I was young…for as far back as I can remember…it’s great know I have an actual diagnosis and I’m not “crazy” like I’ve been called plenty of times

  11. Jeri says:

    What a great idea, all who ate victims of this diagnosis need this book.

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