I dreamt that I had a seizure. I may have actually had a seizure. I can’t tell which. I was in a state of pre-awareness when it happened. I could have fallen back asleep and into REM sleep. But I could have been wide awake. Sleep time and mornings are particular seizure risks to me. I got up to go the bathroom. Normal. Usually I can get back to sleep easily. Sometimes I am wide awake. This time I lay down and then had the seizure dream. It was probably both. I wavered and felt tingly. I felt a wave of déjà vu and a premonition of doom. I got up and took my meds, a few hours early. The moon is full but waning. It is a bad time of the month for me. I cycle with the moon. The seizures cycle with my hormones.
I am awake now, trying to be safe and awake. I am debating coffee. My usual beverage of choice. I recently read that coffee could be a problem for epileptics due to stress of withdrawal. But I also read that it wasn’t ideal to drink either, because of increased mental activity… Which applies to me today? Withdrawal symptoms or increased brain activity? The more I think about it, the more I realize that I did not dream anything. Seizures are real, even if they don’t feel like it. That’s the problem with seizures. I don’t feel real sometimes.
I am going to be very sleepy. All things that I had to do must be canceled. I am not a reliable person anymore. Things could get worse. Things might get better. I cannot go and do things. I need to stay close to my bed. I have been awake for less than an hour and I am drooping. Sleep will be needed soon. Writing is nearly impossible. My eyelids are heavy and press on my vision. My husband had to take off of work to care for me and our children. I will not feed myself today. I took my meds and drank some water. That’s all there will be for me. It was not a dream. It just felt like a dream because my consciousness was altered. I know that now. I am swimming underwater, beneath the surface of reality. Consciousness bobs up and down like a buoy in a perfect storm.
I hate dreams. I never know if they are seizures. The first time I ended up in an ER I was twenty and had a seizure during my sleep. I was told that it was NOT my first seizure and that I had been having undiagnosed seizures for years; my whole life, in fact. Nobody knows what happens when everyone is asleep. The middle of the night is a different world. If you have ever worked third shift you know. Everything is different at 3 am when the rest of the world is still and quiet and deep in sleep. People can sleep through a lot. More than you might think. It didn’t surprise the doctor that my epilepsy went undetected for so long. That was normal. Epilepsy often gets worse in puberty, when hormones release their madness upon us.
I know that my brain is generally most active in the mornings. That was the only thing I learned after more than a week in the hospital undergoing constant monitoring. Twice, in two different hospitals, in two different cities! I had thirty-some electrodes glued on my head, and I waited and wanted to have a seizure. That’s a terrible feeling.
EEGs are quite fickle really. You have to have a seizure during one for it to show anything. I have had more normal EEGs than I remember. Screaming and falling on the floor and drooling are not normal. Ask my husband or children. But unless I have a seizure during hook up, there is nothing to see. Seizures are uncontrolled burst of electricity. You cannot predict them. They are without control. That is part of the very definition of a seizure.
I was chained to a hospital bed with “seizure pads” surrounding me with an IV in my arm “just in case” and the electrodes glued to my head and plugged into the wall. Once they wrapped me up like a brain surgery patient with gauze on my head. It shocked one of my visitors. She didn’t mean to be shocked, but she was. She couldn’t hide it in her eyes. The gauze was much better than the superglue that stayed in my hair and on my head for days after I left.
When I tell people that I have seizures, many people say, “Maybe you will grow out of it.” I’m sure they think they are making me feel better. But they are not. They are making it much worse. It is a dangerous and hurtful myth. There is no growing out of my brain’s misfiring. It is only going to get worse. Thanks for your false hope. Your false beliefs hurt me. I am certainly not going to grow out of anything. I am only growing inward, more seizure-y.
“Seizures beget seizures beget seizures beget seizures.” The first neurologist that actually helped me told me that. It scared the shit out of me. I was living my life thinking just because I had one seizure didn’t mean I was going to have another. Just because I had two or ten or twenty didn’t mean I was going to have any more. I was in complete denial. I wasn’t going to stop having seizures. I am going to keep having more.
I went 7 years without a convulsive seizure. I wasn’t cured, just controlled. I am less controlled now. Things change. And unfortunately with seizures, they don’t often change for the better. I don’t actually believe that there will be a cure for epilepsy in my lifetime. I will always have seizure triggers like flashing lights and full moons or god forbid, both at the same time. There is simply not enough research or understanding when it comes to epilepsy.
Now I am trying to hold down another seizure. It feels like there is one wavering on the edge of perception. I can feel the electricity start to rise and I try to tamp it down. Close my eyes and stop the feeling of spreading warmth and dread. It starts at the center of my core. I must turn off the computer. It’s a blinking dangerous seizure risk when I feel this way. I must not do anything to aggravate my brain. Please. No fighting.
Once my husband and I were fighting and I had a seizure. I don’t blame him. It’s not his fault. But it was the fight’s fault. It was the stress. We were arguing and I was so angry I was shaking. Of course I don’t even remember what it was about now. I was so angry, I happened to be in the middle of making lunch. I was chopping the pizza with more gusto than was needed. Then I had a seizure. It just exploded outward from my center. I had to put down the knife and go lay on the couch. I was done fighting. Lunch was served with a side of seizure. I was glad that I was able to put down the knife and go lay down instead of fall down and shake with a knife clenched in my hand. Because that could have happened.
A few days ago I was writing when my husband told me to take my meds and go to bed. I was confused. “Why?” I asked. “Because you just had a seizure,” he said. I never want to believe that. I asked him how he knew, what did I do and for how long? He said I screamed, the scream he has long since recognized as my seizure scream. I have no idea what kind of scream that may be. I have never heard it. I’m glad that this time I was away from my children and they didn’t have to hear it. My husband says it is a feral scream. Well, he said that when I cornered him into describing the scream and asked him directly if it was feral.
I didn’t fall over, my tongue is unbitten. It was only a medium terrible seizure. I had a loss of consciousness but no convulsions. Convulsions are the worst, they HURT! I lost some time and screamed and then I felt like vomiting. That is a common post-seizure reaction for me. But my body didn’t hurt. My muscles and bones were all okay. No falling. Falling is the worst. Of course, the vomiting and drooling isn’t so hot either.
After a seizure I must crawl into my bed and into sleep. I am like a hermit crab: building my home out of the discarded hope of others. Perhaps tomorrow I will not have any seizures or any dreams.