Mrs. Lincoln and my seizure

On Monday, January 20, 2014, I had a seizure and I spent the night at Saint Alphonsus in Boise.

My strokes happened two years ago, and I had no idea that a seizure would be a possibility afterwards.  It would have been great to have forewarning because this was a shock emotionally and physically.

Seizures are bouts of disorganized electrical activity in the brain. They can happen spontaneously (primary seizures) or from brain damage (due to stroke).

Seizures come in different flavors. Last week, I lost consciousness. In May, I had an "incident" that resembled a seizure. I never lost consciousness, and I described my symptoms in detail. I had an aura on my right side, and it seemed that my right side vision was disrupted. It almost seemed that my right vision was a memory like a two second delay.  Even though I described that vividly, the doctors did not seem to know what happened.

Instead, they prescribed anti-seizure medication, Keppra, even though they said it was not a seizure.  The side effects were horrible. They included

"Throat Irritation, Drowsiness, Dizzy, Head Pain, Feeling Weak, Feeling Restless, Depression, Mood Changes, Anxious, Sensation of Spinning or Whirling, Low Energy, Pain, Loss of Appetite, and Easily Angered or Annoyed."

So, other than that, Mrs. Lincoln, did you enjoy the play?

I talked to my regular doctor last summer after the "incident," and I told him that the side effects of Keppra were disabling. He said, "You did not have another stroke or a seizure. It is crazy to take that drug when you do not need to."

Later that summer, my neurologists seemed to agree and I quit taking the drug.

But last Monday it all changed. I had the symptoms in May and last week: I had an aura which is a perceptual disturbance experienced by some seizures before either the headache or seizure begins. It often manifests as the perception of a strange light and or confusing thoughts or experiences.  

Last week, my doctors told me that an aura is common when you have a seizure. It would have been helpful for me to know that last May when I described those symptoms.

Last week, I started to take Keppra and the side effects started to happen again. I have been miserable. Certainly, I need to take a pill to stop seizures, but what is the cost of my quality of life? Not just my life…my families’ life also.

Two days ago, we saw my neurologist again. There are other alterative medications I can try. And I will. All drugs have side effects, and I need to balance the medications to make sure they are effective but also do not make me a crazed zombie. When we were leaving her office, her partner seemed surprised that we will try a different drug. 

What I have realized, doctors are educated guessers. Until you have a stroke or a seizure, you have no idea what a person goes through. You are scared. You are confused.  You are mad. You are sad.

Every day you worry that it will happen again and be worse.

Every day. 

It would be easy to give up I suppose. But, I cannot live my life in fear. I am simply pissed off about my bodies limitations. 

Strokes: The gift that keeps giving.