It’s been more than 2 years since I received my PNES diagnosis and my reactions when informed said seizure was non-epileptic vs epileptic, is the same today as it was the first time they told me. Even after all the reading and research I’ve done, I still feel disbelief and disappointment. Definitely not relieved. My initial thoughts are ‘No. I didn’t want to hear that. I wanted to be told it was my epilepsy that caused the seizure. I want something tangible. A result of a brain under attack by itself, a physical response not emotional. I like things black and white, a definitive cause and effect. Not something that is hidden can’t be seen on an x-ray, CT or MRI scan or knowing there’s medication or other such form of treatment. Unlike a broken limb or pulled muscle there’s nothing concrete to gauge the healing by. Sure, there’s the improvement of mood to justify the benefits of CBT and mindfulness practices, but moods shift and adjust based on outside influences all the time. Symptoms of depression and anxiety could be attributable to the stressors of daily life and the lack of control that goes with it.
It’s just so damn frustrating I can’t determine if a seizure is epileptic or non-epileptic, whether taking an Ativan or going to the ED is the right call and the fear and uncertainty of if and when the event will stop. It’s just so hard not to know what to do and leaving it up to my son to decide only serves to increase the guilty feelings and helplessness.
Trying to convince myself it could be worse, that I’m doing all the right things to manage these episodes, that I’m not causing them, I’m not a hypochondriac, doesn’t necessarily help.
Developing a debilitating chronic illness in the prime of life is challenging and the sense of loss staggering. Having two seizure disorders misunderstood by both the general public and medical professionals intensifies a situation that already seems hopeless and amplifies the sense of isolation.
At least I now live where I have easy access to the appropriate care I require. If I hadn’t left BC, my situation would be far worse than it is. The frequency of seizures would have been double that of what I’ve experienced since March 2020. I’m sure my thoughts of suicide would have resulted in some form of self-harm or a successful end to what ails me.
I’m so thankful for my doctors here in Calgary. I’m surrounded by experienced, knowledgeable professionals devoted to the care of each patient, providing a one stop shop of medical treatments and advice.
My hope for 2022 is it will be the start of a clean slate, the beginning of the end and the return to a life somewhat normal pre covid.
My parting words to those of you suffering with PNES, don’t give up on yourself. Remember, you’re not creating these seizures, you’re not to blame.
Contrary to what some medical professionals believe or are unable to come around to the reality of this condition, your seizures are real. They’re not pseudo seizures, they’re non-epileptic seizures caused by emotional trauma a form of PTSD. Events in one’s life that have been suppressed inside for too many years, has managed to rise to the surface and project themselves as seizures. It’s frustrating, I know. It’s a challenge to eradicate them from your mental being, but it is possible. There’s no need for pills with damaging side effects. Life could resume as it had been before. PNES is far more manageable than epilepsy, no surgical interventions necessary. There is support out there in the form of support groups, therapy, memoirs, and medical research.
You are not alone. You can get through this and come out on the other side, happier, healthier, and more in control of how you react to each event.
I have faith in you all. I’m positive that we can all ace this and succeed.
Believe in yourself and others will too.
Take care my friends and stay safe.