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.