I started to hear a repetitive banging noise coming from the living room, and I yelled out, “Stop the banging!” When it did not stop, I marched out to the living room. “I said to stop the banging! What are you doing?!” I yelled again, looking at Nigel, whose body was half-off the couch with his legs stuck under the heavy coffee table, banging it. I thought perhaps he was acting out a scene from the movie or laughing in an exaggerated way, but that was before I saw his face. I pulled back the blanket that had been covering him, and then all at once it hit me. The violent convulsing, the profuse frothing at the mouth, the eyes rolling back in his head: He was having a seizure.
My mind likes to torture me by replaying the events of Nigel’s first seizure five years ago. The above quote comes from the post I had written about it, and I still remember everything about that night. Mostly I remember the terror.
His subsequent seizures were the same. Always the violent convulsing, the eyes rolling back, the frothing at the mouth, the rigid limbs. Often the unmistakable thud of a body hitting the floor. I still hear it. Every time I hear a thud, even when Nigel is not in the house, I freeze, my heart races, and my PTSD kicks in. The force of his seizures is still with me, probably always will be.
The first medication we tried for him was not very effective. He continued to have seizures on a regular basis, like clockwork. Finally I convinced his aging doctor to try a different anticonvulsant, and we got it right just the second time out. It worked. I still lived in fear of the seizures, but they appeared to be controlled, and I felt so fortunate.
Last summer marked two whole years that Nigel, to the best of our knowledge, had not had a seizure. His neurologist ordered a 24-hour ambulatory EEG to see what the seizure activity in his brain now looked like. If it had decreased, we could begin the slow process of reducing the daily medication that, although a blessing, compromises his liver.
Nigel was excited about the prospect of eventually not having to take pills every day, of people not having to remind him. And he is also concerned about liver damage since his grandfather died of liver cancer. We were optimistic about the EEG.
But the results indicated that the amount of seizure activity had not decreased. At all. In his frontal lobe he still experiences the frequent, random spiking that, according to his doctor, could cause him to have a seizure at any time. We were disappointed that the medication could not be reduced, but immensely grateful that it was doing its job, and doing it well.
This month marks three years that Nigel has been seizure-free. Three years! We are so blessed that not only do we live during a time in history in which we are able, in many cases, to control seizures through medication, but also because we found one that works for Nigel. I quickly remind myself of that whenever I lament that the epilepsy is still with us, still maintaining its unwelcome presence in his frontal lobe, continuing to compromise his executive function ability and his cognitive processing. It may always be this way. But at least we have the upper hand.
[image credit: Science Life]