My name is Kate & I have epilepsy: my journey to a diagnosis (Part 3)

this is a small version of what my 'turban' looked like. gorgeous!

After arriving at the doctor’s office and meeting my mom, everything happened quickly. The neurologist assessed me with a series of physical tests, quizzing me about my symptoms and taking notes about my ‘episodes’.

After this brief encounter, the Dr. said without hesitation he was certain I had epilepsy, but wanted to confirm his diagnosis. I was ordered to complete a ‘walking’ EEG for the next three days. If the EEG confirmed his theory, I would begin a new course of medicine that should immediately stop all ‘episodes’ and the resulting migraines. It all sounded too good, too simple to be true.

I was sent to the neuro floor–a place not for the faint of heart–and was wired up for my ‘walking’ EEG. (An EEG machine is a recording device connected by wires to electrodes pasted at key points on the patient’s head. The electrodes pick up signals produced by electrical discharge of neurons in the related areas of the brain; the amplified signal from each electrode causes pens writing on a moving belt of paper to jump—similar to the action of a seismograph when an earthquake occurs.) When the technician was finished attaching the electrodes, my head was wrapped in gauze–imagine a giant white medical turban–and I was on my way.

Looking back, my entire first meeting with my diagnosing neurologist lasted less than 20 minutes. 20 minutes. This, after a week spent in the hospital (with no diagnosis) and another week spent with reoccuring seizures.

Over the next few days there was no disguising that something pretty major was going on with my head. The crazy jumble of wires glued to every inch of my scalp looked nothing short of a sci-fi horror film. Trying to maintain some sense of normalcy, I attempted to go to work, to sit through client meetings, to just do life. 

However, I quickly learned that while I was feeling encouraged by the forward moving developments of testing and a treatment plan, my ‘sickness’ became more real to others when they could visually see something was wrong. Responses varied to my ‘head wrap’, spanning the spectrum of sadness & sympathy to fear & discomfort as to what to say.

When I would mention my potential diagnosis of epilepsy, most people would respond with their condolences. It was as if I was dying–that I had been diagnosed with something terminal. I couldn’t seem to express that I considered it good news–that finally we had an answer, finally a solution, finally a next step.

When we returned to the neurologist to have the electrodes removed and the EEG read, we received confirmation of my initial diagnosis. There was no doubt about it, I had epilepsy.

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