Do you ever have the feeling that you don’t understand what just happened? I seem to encounter this confusion a lot. I know now, but for years I was in the dark about the sudden change. Even today it is startling and I have to reassure myself that I am OK and it is just another TLE trait.
Here is what happened a few days ago. I wonder if any of you will find this remotely familiar.
I wake up happy. My birthday will be on the next day and I am excited about the arrival of my younger daughter and her boyfriend. They live in Louisiana and cannot come home as often as I would like. My older daughter, husband and two children live in town, and despite seeing them often, I am still excited about the family gathering as if it has been years since we were all together.
We are planning to go to Galveston and eat at a harbor restaurant that has a gluten free menu (yeah for me!). There is nothing I love more than being with my family for a celebration. This is probably why Christmas is my favorite day of the year. It is family in spades.
So here I am, happy, excited, drying my hair, putting on makeup and thinking about last minute things that need doing before the arrivals begin. In that moment I am looking in the mirror and feeling good, thinking everything is fine. The next moment everything is not fine, not by a long shot.
I am still looking in the mirror, but my face has morphed into something else. I look like I have had a stroke, turned into a demon or possibly started to melt.
This change always confuses me. I am never able to adjust or to reassure my brain in those first few minutes that it is all OK. A sick feeling in the pit of my stomach accompanies the demon morphing, along with a black buzzing sensation in my head and an awareness of other dimensions forming in the world around me.
My first words are “What the F@#$%!” and I make my way into the bedroom to sit on the side of the bed, hair partially dried and makeup unfinished. The muscles in my legs are already beginning to spasm as if I had just finished a marathon, so I force myself up from the bed and hobble into the kitchen to take potassium washed down by a sports drink.
I go back into the bathroom and look into the mirror. The scary changes are still there. I begin “the dialogue” with myself over the changes and what I should do.
Is this a seizure or am I just anxious (except I don’t get anxious if I am not having a seizure or afraid of a seizure)? OK, if it is a seizure, then when did it happen because I don’t remember it? Did I somehow lose time?
Moreover, if it is a seizure, then what caused it?
All these questions rattle around in my head on one level as I try to assess how I am feeling on another and calculate if I need to take my rescue medication. I am one of the 30-percent of epileptics who are unable to take medication to relieve or prevent seizures. I do have, however, medication I take once in a great while that will help with the aftermath. There is a cost. The medication will calm for 24 hours and then I will be in major pain for the next day or so as it wears off. My body doesn’t make anything easy.
So, going back to the assessment. Do I take the rescue medication and have it wear off during my dinner? Or, do I muscle through and keep my options open? I look at the demon in the mirror for an answer. She says wait and see what happens. So I do. And the fun continues.
I try to distract myself by cleaning. This is something that doesn’t require major decisions, only concentration. I move into the Zen of housecleaning in hopes the demon will move on and I will be the one in the mirror next time I look.
As I clean, I begin to feel odd, odd beyond the face morphing and the upset stomach, the black feeling and the extra stuff that I cannot describe. I feel as if I am somewhere else from my childhood and if I look out the window I won’t see the semi-tropical backyard in Houston, Texas but the hot, bright cotton fields of the Arkansas delta.
We all have intense memories and strong feelings about our past, but after my diagnosis, I began to understand that sometimes I have more than just a feeling and a strong memory. My brain tricks me into believing I am actually there, reliving a moment in time as if it were the first time, only on major drugs.
I don’t just feel that I am in the Arkansas delta, remembering the heat, the sound of the insects, the angle of the sun and the colors of the fields and sky, but I also have emotions attached to the experience.
The nearest I can come to figuring what happens during these episodes is to assume that the seizure, which is happening in the temporal lobe, is touching an area that stores a memory, because the impressions it brings to my consciousness are intense. This is just a guess, but it is as good as any.
I now have reassessed my situation. I am a morphed, demonic-looking woman trapped in a childhood memory of the Arkansas delta with a headache, an upset stomach and company due to arrive in Houston in a few hours.
What caused it? Probably the joy of the moment and the anticipation of a happy event.
Adrenaline may be my enemy here. Good experiences or bad ones will cause a rise in adrenaline and this possibly triggers a seizure, for me. This may explain why, as a small child, I would get up on Christmas morning and race to the tree to see what Santa left me, stand there, throw up and spend the next few hours trying to get back to that lovely moment.
As for my situation, I worked to control my physical responses. My company arrived and it was a difficult evening. The next day I took the rescue medication before my dinner. I had a great time with my family and felt normal during the outing.
I paid for it later but it was worth it.