I step outside my front door with my bag slung across my body and I turn around to slide the key in the lock. It’s an automatic routine. The air is cold, I can feel the contrast of the warmth inside my coat with the chilled wind against my cheek. I swing round to face the two sets of three steps that lead down to the front gate. It’s much colder than expected as I notice the steps lined with ice. I gingerly place my foot on the first step, sure to hold onto the hand rail to give me more stability but it’s just not enough. My feet fly from under me and my body violently jerks me awake and I sit bolt upright. I am sweaty and filled with fear; my heart is beating fast and I have no idea where I am. I look around in the dark desperate for my brain to work and recall the memory of where I was when I fell asleep but it’s not working with me, it’s working against me.
It’s not my home, it’s not my own bed, there’s a huge black blob above me which feels somewhat familiar but I can’t think why. I look beside me and my husband isn’t there, awash with another wave of panic, I don’t know why he isn’t there, he makes me feel safe and at least if I don’t remember he will provide security as I recognize him. As long as I’m with him, I’m okay. But I’m not, I’m alone, terrified and I can’t remember anything. Finally, it comes to me, I’m away for a weekend with two girlfriends staying in a cottage on Vashon Island.
In reality, the above took place between five to ten seconds, it felt like at least thirty minutes and it’s the third one I have experienced out of four nights.
Seizure or hypnagogic jerk? On occasions, I’m already sleeping and it’s a jolt in the middle of the night and others, it’s as I glide off the precipice to sleep.
I’m not sure if they’re just nightmares but the fear associated with them, not being able to remember immediately where I am and a mild headaches which have been occurring on and off more often indicates the all too familiar symptoms.
I haven’t felt that fear of going to sleep for years. I was frightened to settle down because it was a reality check. That reality check has a meaning that took me back to my childhood; sleeping with the lights on; listening to music as I fell asleep; visualization, all aids used in an attempt to distract my mind from the fear of the land of nod and what it would bring. Hopefully, that is the seizure over and I am done for the night, allowing me to sleep in peace.
These seizures were happening prior to finding my current epileptologist. The Onfi became the drug of choice to prevent them. Everything has been fairly good but the last couple of weeks have seen the odd sleep interruption, but since my therapy session on Tuesday at 1:40pm, my absences have been coming in droves every day along with the three out of four day nightmares.
It’s always the same. It’s either tripping, slipping or falling. The dream dictionary has a very fascinating definition…
So, with a telephone appointment with my doctor on Friday, if there is no positive change I can predict an Onfi increase. It was the dosage that previously had me falling asleep during conversations, napping every day for a couple of hours and generally turning me into a bit of a zombie.
Do I want to take it? No. Am I stubborn? Yes. Is there a compromise? Yes, there is. Let’s just hope it’s that the seizures let up…