For the last few months I’ve been mentally debating about whether or not to share my seizure story. My first seizure was October 28th, almost 3 months ago but some part of me is still coming to terms with what has happened. My hope is that getting it all “out there” will hope me find a bit of closure while also spreading awareness or at least making others with seizures (or a family member with seizures) feel less alone. I’ll start at the beginning…
October 26th is my anniversary with my boyfriend. 10/26/2014 was our 7 year anniversary, but my 11-year-old sister had spent the night of the 25th with me. Her school has a Halloween carnival that I took her to and then she stayed the night. She didn’t leave until the following afternoon, so we opted to celebrate our anniversary a day late so we could have the entire day to relax and enjoy alone together.
The 27th we went to shopping and out to dinner. We are both self-employed and we are both night owls, so we often sleep during the day and work at night. The night of the 27th I laid down to bed in the wee hours of the morning (technically it was the 28th). My boyfriend stayed up when I laid down. He said that about half an hour after I went into the bedroom he heard me scream.
In the past, I’ve dealt with very vivid nightmares that I sometimes wake up by screaming in a panic. Ryan said he immediately sensed that the scream sounded different from my typical nightmare scream. He rushed into our bedroom and saw my whole body jerking and shaking. He tried talking to me and touching me and I didn’t “wake up” or respond. He realized I was unconscious, but didn’t immediately understand that I was having a seizure. After a couple of minutes, my arm and leg on one side of my body relaxed while the other kept shaking. Seeing half of my body affected while the other was not made him worry that I may be having a stroke because he knew strokes often affect only one side of the body. After another minute or so, I quit jerking/shaking but my arms stayed clenched up against my body. Then my whole body relaxed, and about a minute later I became conscious. I yelled out in fear, not recognizing who he was. He said “Its OK its me”. I calmed down and then a few seconds later yelled out again. Again he told me “It’s OK it’s me.” once again I became calm for a minute and then would panic. He said we repeated this roughly six or seven times, as if my memory was being reset every few seconds. Again he worried that I may have had a stroke because it seemed like I had memory loss. He called 9-1-1 and they sent an ambulance.
My memory begins by “waking up” feeling extremely drowsy, as if I had been woken up in the middle of a really detailed dream. I felt like I had been asleep for hours but in reality it had been less than an hour. I heard my mother in law in the kitchen. I felt foggy and confused – so tired and yet I felt like I had been asleep for so long. At some point I remember Ryan telling me that I had a seizure, and that an ambulance was on the way. I recall simply thinking “Oh, ok.” as if this news wasn’t scary or shocking or alarming at all. From there my memory cuts out until I am at the local hospital, in a bed behind a curtain. I see my mom walk in past the curtain and her face is an intense mixture of panic, concern and sadness. Her expression causes a pang of anxiety to run through me, but I am unable to fully grasp the cause of her concern. “Why is she so upset?” I wonder.
I remember peeing in a cup, and being frustrated at how difficult it is to get to the bathroom. My whole body feels weak and dragging an IV pole and all the wires on me is difficult.
Later my dad shows up at the hospital. My gut reaction was frustration that anyone had told him that I was there. My dad had seizures for about 8 years, but has been seizure free for the last five or six years. Still, I generally try to avoid giving my dad more details about the stress in my life because I know that he doesn’t handle stress well in general, and that in the past stress seemed to contribute to his seizures. I was also a little surprised that he was there. My dad loves and supports me, but he really dislikes doctors or hospitals. He usually has to be talked into going to a doctor or hospital for ANY reason – even positive events like the birth of a new baby. So just him being there told me that he too was worried/concerned, but I was surprised that he was because it seemed unnecessary to me.
My memory then cuts out to discussing with my mom how I have a doctor’s appointment the next day to discuss the seizure. I also knew that I had a prescription for bactrim – an antibiotic because they said my seizure was caused by a urinary tract infection. I had no symptoms of a UTI, and had no fever. So, I was pretty sure that I didn’t even have a UTI, but I knew that even if I did that it wouldn’t have caused a seizure in a healthy person without having a fever. Yet, it doesn’t really cross my mind that this likely means I had a seizure for “no reason” and that I may now be prone to having more seizures.
When we get home from the hospital and shut the front door, Ryan immediately begins crying – which shocks me. I realize he’s been holding back for quite a while. I hug him and feel guilty for being responsible (though not at fault) for causing him this stress but I am still unable to grasp why everyone is so upset. I say something like “Its OK” or “I’m OK” and he says “I know. I just thought you had a stroke.” My heart sinks, and I realize that somehow he’s been nearly traumatized by this entire experience and yet I feel so numb to everything that as bad as I feel for him, I can’t relate to his feelings.
I had got health coverage in June but had been without health insurance for about two years prior. Since getting insurance in June, I hadn’t seen a doctor and my doctor from a few years ago quit practicing. So the appointment was with a doctor I hadn’t seen before, and I knew that the reason we chose to go there was because they could get me in so quickly.
Again, my memory cuts out until the next day after my doctor’s appointment. I don’t remember seeing the doctor at all, but I remember stopping at Arby’s with my mom and Ryan afterwards. I remember discussing with my mom how it doesn’t seem logical that a urinary tract infection with no fever would cause a seizure. She strongly agrees.
At some point, I google unprovoked seizure and read a statistic that says approximately 60% of people who have a seizure without a known cause (such as high fever, brain tumor or head injury) will have no additional seizures. I remember thinking that a 60% chance of not having a second seizure seemed pretty good, but being a bit worried about having a 40% chance of having another one being concerning. I think this is the first time it hits me that there is SOME chance that I will have additional seizures. Still, I have an overwhelming sense of being OK and that there isn’t anything wrong with me. Perhaps the best way to describe it was I was a little concerned but not worried.
That night when I go to bed, Ryan lays down in bed with me. Without saying it to me, I realize that he is staying awake while I fall asleep to make sure I fall asleep OK. I’m not bothered by his choosing to do this, but I recall thinking, “This is kinda silly. I’m fine. I’m not going to have a seizure. Why would I have a seizure?”
The next blog post in this series will be “My second epileptic seizure” – coming soon.