For a long time my neurologists and neurosurgeons have argued about whether or not I have epilepsy. Yes, argued is appropriate because when you have eight neuro people in the room, getting heated and waving their arms around – it not only constitutes an argument, it constitutes a scene. It’s always been 50/50 too, not really leaning one way or not, a constant back and forth.
My original neurosurgeon, who I will always regard as the gold standard, thought I had epilepsy due to a neuro exam and backed by an EEG. My parents described absence seizures (then called petite mal seizures). Apparently, I would stare off into space, my eyelids would flutter, and they couldn’t get my attention. But it wasn’t daydreaming because even if they touched me, it didn’t register. I would stop speaking midsentence, stop moving, whatever I was doing except for standing. (I really don’t know why standing is the exception because if I was walking, I would stop walking, but not fall. I only fell if I was in the middle of a step or on stairs.)
But these seizures lasted two to five seconds. The time it took to say no more than four words. So were they really happening? And if they were, did I actually have Epilepsy? (Just because someone has a seizure, does not mean they have a seizure disorder.)
- My EEG Results showed seizure activity and patterns found in people with Epilepsy.
- Parents, relatives, doctors and teachers witnessed what they believed to be seizures.
- These “seizures” would make me stop whatever I was doing, and I had no idea what was happening. When I would come to, it would be as if I lost time, not being able to recall anything that transpired during said seizure.
- I have Hydrocephalus, a history of brain bleeds and traumatic brain injury that often result in developing Epilepsy.
- My EEG results showed “spiking” activity, which many neurologists argue are different from epileptic seizure activity. Counter argument: Spiking activity is most common with Absence Epilepsy, which was the type of Epilepsy those “for” said I had.
- The seizures were so brief, no one could prove if I simply spaced out or had a true seizure.
- Epilepsy medication had no effect on me. They did not make my seizures worse or better.
I stopped taking my anti-seizure medication in high school because I didn’t see a point. And because absence seizures did not (often) result in serious injury, I never pursued it further. Every new neurosurgeon would want me to do an EEG, but then they would bicker with their colleagues over the results, and what it all meant.
Being on my own from the time I was teenager until my mid-twenties – that’s a lot of time where no one would notice anything. I lived alone, and didn’t have deep emotional ties where someone might say, “Hey, what was that?” Even with work, I was mostly on the phone or putting up a website or writing articles – so even though people were around, it wasn’t the same as a retail job.
In 2009, I had grand mal seizures due to a 109 degree fever (caused by a freak heart infection – I have an artificial/transplanted aorta valve). But that was written off as a combination of fever and head trauma (it also caused a few strokes).
Unrelated, in college I had what I thought were two big seizures. But they both were standalone (different years) and couldn’t be proven. All I know was that I had “lost time” and when I “came back” I didn’t know where I was, the time etc. But unlike other seizures these lasted extremely long periods of time (20-35 minutes) and I kept walking though did not engage or do anything other than wander about. People who knew me remarked that they saw me but I had a blank look on my face and was unresponsive.
I’m about to have another EEG. And I feel like now it is going to definitively tell me what I have always figured to be true: I have Absence Epilepsy.
I work by myself, from home, and I’m deaf, so me spacing out can easily come across as “he didn’t hear me”. Again, count to three and that’s how long 90% of these seizures are. By myself, I wouldn’t notice. With others, it can still go mostly unnoticed. But earlier this year, I was holding a large glass measuring cup and filling it with water from the fridge. I remember holding the cup and pressing the water dispenser at the fridge and then I remember shattered glass at my feet. I dropped the measuring cup, but I don’t remember dropping it. I don’t remember it falling. I don’t remember the impact. I just was aware of glass at my feet (and throughout the house, talk about distance – that thing shattered). I wasn’t on the phone or watching TV or preoccupied. It just happened.
Lately, I’ve felt more and more spacey (though I think feeling that way is actually something else that I’m not getting into here) and it’s making me question what could be a seizure or just being spacey or some other medical thing. They’ll want to medicate me if it’s confirmed that I have Epilepsy, but that’s just dumb because the medication I was on (due to brittle bones and another preexisting condition, there is only one medication I can take) didn’t help reduce seizures but also had unpleasant side effects. Of course, a neurologist’s job would be to medicate me regardless, but I’m not one to be pushed. I don’t drive. I never have, so I don’t pose a risk to others. I just have to hope it doesn’t happen when I’m on the stairs or chopping something.
Until then I am going to try to avoid the things I was told triggers my type of seizures: stress, less than nine hours of sleep a night (laughable, but I’m trying), being overheated, exposure to direct sunlight, and holding going pee. Yeah, I have no idea why holding going to the bathroom is on the list, but it is. I can try to reduce stress to the best of my ability. I can make sure I’m not overheated and if I’m outside there are hats and sunblock etc. The sleep thing, my body just doesn’t let me nap, but I do try to get at least eight hours a night, nine would be wonderful, but I’m still working on the eight. And unless I’m in a car, I just won’t hold it.
I don’t know how I feel about the upcoming EEG. Actually, scratch that. I know how I feel about the test itself – it is awful. They have all these sticky electrodes in your hair and my shunt area is hypersensitive to touch, it is excruciating what they have to do. I hate it. It was the one test I really didn’t want to get, but also one of two tests I was the first to admit I probably needed. (My husband and I talked the previous night before hearing from my neurosurgeon. I told him that if I was the doctor and had a patient with my history, I would order A and B. C wasn’t relevant and D useless. My husband called to tell me my doctor had ordered A and B, even though we didn’t request them, just said what was going on. My response was, “Damn it, I hate being right.” Because both A and B hurt my shunt, but I’ll get them same day at least.) But other than the tests themselves, I’m not sure how I’ll feel about the results of the EEG.
I don’t want to be medicated simply because there was no benefit before, but there were side effects that I felt left me impaired on the day-to-day. And if they think I have Epilepsy, the first thing they’ll push is to get me medicated. I also don’t know how I feel about it becoming official. I have always thought my original neurosurgeon was correct and looking over past EEG notes, I feel they all show the same thing: Absence Epilepsy. But, you know, it was kind of nice not having an official diagnosis. I already have so much on my medical resume, I really don’t need to add new things. It was kind of nice being undecided.
Then again, maybe there have been advancements in medication in the last eight years. Maybe if they confirm what I already know, there really is a way for these absences to happen less. No one likes to be a passenger in their own life, and that’s what you are when you have an absence seizure. You’re not in control of your body, you aren’t thinking or feeling or understanding anything that is happening. You have no recollection, just this vast empty space you can’t fill in.
Maybe this will have a good outcome – I guess, at least, an EEG can’t make me any worse off, because I’ve been holding this diagnosis in the maybe column for so long, and maybe something can come out of an official diagnosis now.
All I know is that I’m tired of being absent. I’m ready to be here.