Positive Connections...

A review of my and Jeff Underwood's book, "The Color Of Seizures" appears with a link on Facebook.

I am honored to read the wonderful book which Jeff and I present to those challenged by PNES as well as their loved ones.

Lorna Myers, Ph.D. was the voice that first spoke to me of PNES. At the opening page of the website, nonepilepticseizures.com the reader is greeted in such a positive way..

PNES
Psychological Non Epileptic Seizures
Illuminating, Helping, Empowering

Meet Dr. Myers:

"For over ten years, I have had the opportunity to work with persons diagnosed with PNES. My career started out when I completed a Ph.D. in clinical psychology.  However once that was done, I realized I needed to understand the brain as well as the mind.  So, I applied to and was accepted to a two-year postdoctoral program in neuropsychology of epilepsy in New York City.  It was during those two years that I encountered an amazing group of patients who were diagnosed with PNES and my years of training all came together. Soon after a colleague and I put together an educational and treatment program and wrote up our early findings and case studies.  Since that time, I moved on to a large epilepsy center (Northeast Regional Epilepsy Group) where I have had the chance to work with countless PNES patients, refining my understanding and treatment approaches.  More recently, our PNES Treatment Program has made important contributions to the understanding of PNES in the professional field through research on the neuropsychology and psychology of non-epileptic seizures."

 Read "The Color Of Seizures," but before you do... Connect to that very positive review at You'll find it in the blog section.   Review of "The Color Of Seizures"

Thank you for reading us!

Kate

Take Care of Yourself...

 
Do you keep a journal? From time to time I'll share my reflections to questions that are found in "The Color of Seizures".

1. What are the things that stand between you and complete happiness?

Codependence covers a broad spectrum of what might come between me and complete happiness.
Codependence may well take me away from good health and leave me with the pain of seizures.
Nearly five years ago, I was well into therapy. I also attended a weekly Samaritans meeting with a friend who had lost her son to suicide. At one of the meetings, the host asked me to share about me. I began to share quietly and like the others, poured my heart out. I had lost my true self to an emotional suicide.

After the meeting, a woman approached me and whispered, "Do you think you might be codependent?" I wasn't sure what that meant, but I would find out. I googled for information and my eyes were opened. When I said the word to my therapist, his eyes opened wide. He pursed his lips and nodded yes.

Codependence is a disease manifested by harmful characteristics in relationships. It is difficult to diagnose with symptoms, but there are lots of signs. The patterns that I see in myself so far in my codependence are as follows:

I have difficulty identifying my feelings. I often minimize my feelings or suit my feelings to what I think others need to hear. I don't have delusions of helping all the world, but I can honestly say that I am mothering, fixing and look for ways to help save others.

I tend to judge myself as never being good enough. I try to do the best I can with my looks, my clothes, my home, etc.. But I am reluctant to let people see the real me. I am embarrassed much of the time about myself and my living situation. I am embarrassed to receive praise.  I want to fix people, and feel like I don't trust them to do their job their way, which would probably be fine, if I let them. I look in the mirror and feel physically unattractive and don't feel physically or emotionally lovable. That caused a lot of "Why bother?" thinking.

I am sensitive to others' feelings and often take on their feelings as my own. I must be extremely loyal. I often hold back, unable to express my own feelings, what I need to say. 
Sometimes I think others cannot take care of themselves. I need to be the mother or the fixer. I have become resentful when others have said "no" to my offers to help. I admittedly have offered advice without being asked.

When I care for someone else, I need to ask myself if my motivation to care for that person is fear based, and do I feel the need to fix them, control or manipulate them. Do I care for this person to avoid feeling abandoned? Do I neglect caring for myself or cross over boundaries in order to be with or care for this person? If any of my answers are yes, then I am knee deep in being codependent. My behaviors can be harmful if I am a people pleaser and please others before taking care of myself. The question I need to ask first.. Have a taken care of ME?

Hearing the words psychogenic non-epileptic seizures, PNES opened my body, mind, and spirit to a feeling of relief because I finally understood what was happening and continues to happen to me.

Does being codependent affect my having PNES? I am certain for sure!

There are definitely other factors at work, those that caused me to become codependent.
Believe me, it is hard work to maintain being codependent!

How do I work to lessen my codependence? I practice my faith and admit that am powerless over my codependence. I create boundaries that protect me and others. I am not perfect and I forget those boundaries sometimes more often than not.

There are many other factors that contribute to my seizures. Some, I don't even know about as they may be locked in the deep recesses of my brain.

How do I work with my PNES? I am powerless over my seizures. I am a work in progress. I take life one day at a time. I take my seizures one seizure at a time.

How will you answer the question: What are the things that stand between you and complete happiness?

PNES

Before I was diagnosed with non-epileptic seizures, most nights, I awoke with that worms-crawling-in-my-legs feeling, and many nights I awoke with my right leg and arm thrashing about the bed. My head twisted to the left and I was afraid I might not be able to breathe. When it stopped, I got out of bed and paced the floor for the rest of the night, worrying. I was terrified, even more terrified when it happened to me at work at the oddest of times. I recall that someone had laughed and said that I had gone over the rainbow. It wasn't funny then and the remembrance isn't funny now.

My closest friends from work brought me to the emergency room, where I was poorly treated. I was admitted and given enough medication that caused me to totally black out for five days. I recall absolutely nothing.

While I was in the hospital I underwent both an MRI and a CT scan. Both tests appeared normal, but I appeared anything but normal.

The diagnosis was made; it stated that I was having pseudo seizures and that I was crying out for help. I was wide awake when I heard those words.

My entire body dropped and I emotionally wrapped my arms around myself. I agree; I was crying out for help. I was begging for relief from my pain. I was pleading to know what was wrong with me. I implored their aid to put an end to these seizures. Fear, like a wound, opened up inside my spirit

I was out of work on medical leave for five months.

The seizures continued. I suffered depression deep enough to nearly drown in a well of pain.

I was evaluated by a neuropsychologist with whom I spent an entire day.

I saw and still see my therapist regularly. I also saw my psychiatrist and continue to seek her care regularly. I take medication daily for these seizures.

It was when I was poking around on the internet to try and find some information that would provide details about the seizures that I finally found an answer. I stumbled upon a site where I felt welcomed.

As I read, I learned that seizures such as mine that did not appear to be epilepsy were called psychogenic non-epileptic seizures, also known as PNES. To finally have an appropriate name for my condition exhilarated me! 

What I am sure of is that this condition is treatable. While I continue to have seizures, I know that I am not crazy and that I will be okay.

However, while giving the seizures the name PNES helped me immensely, my reaction to every seizure then and every seizure since… I HATE THEM!

I hate the shaking. I hate the jerking, bending, and twisting. I hate the crying. I hate the swearing. I hate the burning pain and spasms.

My body, mind, and spirit continued to cry out, but this time for loving support.

I have a special person in my life who gives me love, support, encouragement, and who cares about me enough to be honest with me when I need that as well.

I am surrounded by the acceptance and love from my family and friends.

There's something comforting though when persons with any condition come together with others who share the same issues.

That is how The Color of Seizures came to be.

This blog is a place to go to find loving support. It is a place to begin to find well-being. It is a place to be with others who withstand the challenges that these non-epileptic seizures bring. The Color of Seizures offers those with PNES a chance to find balance.

Being healthy encompasses all our parts, not just our physical body. When our emotions are in turmoil or our mind is bombarded with obsessive thoughts our health is compromised and we already know the result - seizures. It is important to create balance in our lives by nurturing our entire selves. It is paramount to our total health to meet our spiritual, mental, emotional, and physical needs.

If we feel balanced, we will experience joy in what we do. We will have a sense of purpose and feel that our lives have meaning. We will treat ourselves with love and respect. We will also be loving and respectful with our loved ones. We will feel calm and less stressed and anxious. That can lead to a quieting of our seizures.


Together, we say as a community of friends:
PNES… Finally, it has a name!
We are comforted and comfortable.
We feel acceptance.
We are not alone.
It is not the end.

Be blessed with healing in your body, mind, and spirit.
May your seizures be quieted.

Kate