Verse of the Day

Wednesday, March 18, 2015

Ictal Fear

Ictal fear. It even sounds horrible, doesn't it?

Well, let me tell you--- it is.

For us, ictal fear came as a blood-curdling scream at 2:00 in the morning. My 16 year-old son yelled so loudly and kicked his bed so violently that I thought he was being attacked. My husband and I managed to make it upstairs within a minute, only to find our son sitting up, looking totally confused. Our son may be strong, but he had managed to kick and bend his metal bunk bed guard rail and move the large bed several inches across the floor. All this in his sleep, no less.

When we turned his light on, the episode stopped. All he could recall was the intense fear. No dreams, just fear. Poor guy stayed up the rest of the night, attempting to recover from the event. He was too afraid to even try to sleep again.

The first time this happened was about four weeks ago. My mommy instinct told me something was wrong, that this was not just a night terror. But weeks passed and no more problems. However, when something happens a second time, you know it can't be brushed off as mere dreaming. I knew he was having nocturnal seizures.

We were fortunate to be able to consult with our neurologist right away. My son has large cavernous angiomas in his temporal lobe and the amygdala. Our neurologist explained that ictal fear is intense, overwhelming fear generated by abnormal electrical activity in the brain. (Dr. Jeremy Payne spent a long time discussing seizures with my son, but honestly--- I could tell you only a few details. My stress level and anxiety seems to short-circuit my memory! ) Anyway, he put our son on Keppra, a seizure medication.

Keppra seems to be working just fine. Our son initially felt tired, but that soon wore off and he feels great. In fact, some of the outward anxiety that I had noticed has disappeared. We are hopeful that he had no more episodes, although we were told to watch for any "breakthrough" symptoms. And no, he is no longer on the top bunk of the bunk bed anymore. And his job of getting on the ladder to change air filters and light bulbs has been given to someone else. No driver's license yet, so no worries there. But pretty much, life is back to normal with some precautions.

For all of you readers familiar with ictal fear, my sympathies. It is a horrible thing. Just one more lovely part of Cerebral Cavernous Malformations. Can I again tell you how just I HATE this disease?

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