PNES is diagnosed using some of the same technology as epilepsy. Electrodes (tiny discs the size of a dime) glued to the scalp and attached to an EEG (electroencephalogram), are used to confirm any electrical disturbances on the brain, specifically the neurons.
Epileptic seizures are a result of misfiring neurons the discharges appear like earthquakes on a Richter scale, a violent jumble of vertical lines pinpointing the seizure focus depending on which electrode moves the ‘needle’ creating a childlike scribble of the kind from an etch a sketch.
PNES seizures on the other hand, reflect no such disturbances. The natural flow of the brain waves rise and fall like the tide, a rolling rhythmic line flowing like a breath during meditation, in and out and as smooth as glass.
Video Telemetry (EEG monitoring captured on video, 24/7) is the first step in diagnosing a seizure source.
Without any indication of electrical activity, and with no further testing, one could be diagnosed with PNES. No seizure medication, no MRIs (Magnetic Resonance Imaging), CTs (Computed Tomography), no Epileptologist (a neurologist specialized in epilepsy), and handed off to psychiatry. Treatment would be CBT (Cognitive Behaviour Therapy) and possibly an antidepressant or two.
Having both disorders, being indistinguishable, if I were to experience status epilepticus [a prolonged seizure or a recurring event without recovery in between], I could die or suffer brain damage, requiring constant care.
Both my epileptic and non-epileptic seizures are similar. The seizures are exceptionally long,with loss of consciousness, left side paralysis, leaving muscles weakened and mostly unresponsive, often referred to as Todd’s Paresis, meaning stroke-like in nature. Without video telemetry, even the doctors couldn’t confirm with 100% accuracy.
PNES seizures are real, they are not faked, sufferers have no more control over them as those with epilepsy. The difference is how they are triggered. Emotional trauma, excessive stress, lack of sleep, anxiety and depression could set them off. Those with PTSD (Post-Traumatic Stress Disorder) can have seizures as well as victims of violence and abuse, anyone who can’t express their feelings are candidates.
It wasn’t until I moved to Calgary, that the doctors concluded I had both PNES and epilepsy. Not unheard of, 10-25% of those with epilepsy can have both.
Having epilepsy was bad enough. Having it and PNES is torture.
Every twinge—twitch—sensation felt, my thoughts immediately go into panic mode. ‘Am I starting a seizure? Is it PNES? Do I need Ativan (a medication used to treat active seizures)? When should I take it? Do I need it? Should I go to the hospital? Or should we bother calling? It’s just a waste of their time if it’s PNES isn’t it? But. What if it’s not? What if it’s real? If it’s epilepsy and goes on too long or I go into status? How do we know? Will the EMT or emergency staff know how to treat me? Do they even know about PNES? Who—What—Where—When—Why. Too many questions. Too many what ifs. It’s all grey and not enough black or white.
I’m a walking pin cushion. A Pez dispenser for medication, taking in pills versus spitting them out. Finding the right mix of prescriptions and therapy is like a blind man navigating the tight rope. It requires balance and foresight taking risks while minimizing their effects. Difficult. Time-consuming and fucking frustrating!
No chronic illness is easy, each has its own set of problems unique to each individual and condition. Some are more lethal than others and some are managed by diet and lifestyle changes with a side of pills. But it’s those multilayered, conditions, one organic, the other psychological, coming together joining forces to wreak havoc, that attacks the body, mind, and soul, crushing one into a pitiable pile of crap.
And that’s me. An epileptic, psycho, with a side of glaucoma, double visioned, partially deaf woman in the prime of her life. Oh, and we can’t forget dessert. A dollop of arthritis topped off with a senseless limb. The best seniors deal in town!
Please note: while I refer to my pnes as ‘psycho seizures’, I in no way wish to demean or refute their authenticity. It’s my coping mechanism, a means to interject humour into a serious situation, minimizing its power on my emotions.
My sincerest apologies to anyone I’ve offended.