Space Outs-- Not Really Space Outs
I've had these for years. In my head I thought everyone had these space outs. Everyone had these minutes that were just lost where they couldn't talk and just had to look out at the world for a bit waiting for all the dots to start reconnecting.
Now I knew that I had had seizures. But those two had been when I was had been in middle school. Those were coping mechanisms. Those were because I hadn't told about trauma. Right?
Apparently not. Fast Forward some 16 years and those damned blinking lights would come back into my vision in the middle of a space out. It was a normal shower. Interrupted by a space out. Sometimes if I ignore my space out by washing my hair it'll go away. So that's what I tried this evening in September. As i reached back to wash my hair I knew I was in for some trouble ahead. Speckled lights began to flicker in the corner of my left eye and I remembered it from my second seizure that shit was about to get real. I was able to turn the shower off. Step out of the shower, walk out, and I stood naked in the doorway looking at my husband Trent At this point my seizure had taken my ability to speak. I believe according to him I crumbled to the floor. Trent had never seen a tonic clonic seizure before. Although to be fair. Trent had thought he had never had seen any seizure before which we both now was not true.
Fast forward from the moment I crumbled on the floor to where we are now 2 tonic colonics under our belt, 3 medications tried, 1 diagnose, and a genetic condition later. Periventruilar Nodular Hetrotopia. What does it mean? To my daily life....I take meds twice a day. Don't drink alcohol. I don't drive. When I have seizures I try and take them in stride. So that's what I want to share. The days that I have them. Maybe the days that go well. Maybe the days that don't. A lot of the information that I've found on people with PVNH is about young kids have died from the condition. And I didn't even know I had the condition until about 7 months ago so I'm still processing a lot with it. All in all though I just want to share life with an average of 8 seizures a month.