I’ll confess… in the few months between my last semester on campus at university and my first stroke, before my Brain Avm Surgery and the large stroke I had afterward, I smoked pot a couple of times. I was living on Vancouver Island in British Columbia at the time – I think that most people would have been surprised if I *hadn’t* smoked some pot. I don’t now, even though it’s decriminalized in Canada (who can afford to, lol?) But I don’t really feel the need to, either.

I’m getting my fill of altered states of mind now that I’ve started having seizures again.

Content Note: Brain AVM, aura, brain surgery, hospitalization, medication. surgery, stroke, seizure

My Brain AVM and Seizure Strangeness

I had the first seizure that I can remember a few days after my Brain Avm surgery, in the Neural Step-Down Unit at the Toronto Western Hospital. I hadn’t had my stroke yet. My father and sister were hanging out in my room with me when my father pointed to my left hand and said, “Are you doing that?”

My hand was in some sort of spastic convulsion, and I could feel the motion traveling up my arm. “No,” I said. “I think I’m – “

And I passed out. I can’t say when my next clear memory was, but that was the last time I had full control of my left side, and now a difficult-to-treat seizure disorder with an as-yet-unknown cause is always a consideration (to some extent) when I’m making decisions about my life.

Taking Up Space

At first it felt like the seizures took up as much space in my post-brain-AVM life as physical rehabilitation did. I knew when they were coming on – sometimes I’d go to a nurse and say, “I’m going to have a seizure in the next couple of days”, and even though I was told that I couldn’t know that far in advance that a seizure was coming, I was usually right. The hunch that something was on the horizon was anxiety-provoking enough. The aura that directly preceded a seizure was terrifying.

To understand what an aura is, think of how people joke, “I smell burnt toast” when they’re concerned that there’s something going on with their brain that shouldn’t be. An aura is itself a small seizure, but it can also be a a signal that a larger seizure is about to happen. Auras come in many forms. For some people, an aura is smelling something that no one else does (like burnt toast). It’s sometimes a physical sensation, or an odd taste, or even a particularly strong emotion. When I first started having seizures, my auras occurred in my left arm and leg. I would feel them start to jump in a very specific way that, from what I can gather, wasn’t visible to anyone else. When I felt this happening, I knew I had enough time, at best, to get to the floor so that I wouldn’t fall, before I lost control of my body and my ability to speak. What happened more usually, though, is that I’d only have enough time to say to the person with me, “I’m having a seizure!” or “Seizure!” before I’d be out of it.

Scarier Than the Brain AVM

I told people at the time, “My seizures are much scarier for you. I pass out within ten seconds and I’ll only remember going into it when I wake up.” But those few seconds of consciousness were brutal, because I’d never know where I was going to wake up… or if I was even going to wake up.

That made the prospect of having one damn scary.

I drove my nurses crazy with my anxiety that my seizure medication be right on time, and my insistence on reporting anything that didn’t feel right. After experiencing a seizure while sitting in a hot car, I became phobic about getting overheated. I worried constantly about what would happen if I had a seizure when I was out in public.

But as doctors narrowed down what medications would be most effective for me, and as I learned from experience that even a seizure in public wasn’t the end of the world, I started to relax. Staying afraid all the time uses more energy than I can afford to spare. Besides, as I’d find out, I was only at the beginning of this part of my brain AVM journey.

Down the Seizure Rabbit Hole

In one of the later seasons of of the hit medical drama “ER”, one of the main doctors develops brain cancer. The story arc includes an episode about his seizures. During an “in his head” scene of what’s going on while he’s in a seizure, they show him flashing back to random scenes from his childhood…in colour, in black and white…and how he hears disembodied voices calling him back to consciousness.

I thought, “Yup, that’s exactly what it’s like. They just don’t mention that the voices call you back even when you’ve seized and you’re alone.”

Trippy, right? Well, eventually I started remaining conscious through my seizures. That’s when things started to get *really* trippy. It’s a truly wild experience to be aware of everything’s that going on around you while you’re powerless to control your movements, or even let anyone around you know that you’re conscious and can hear them.

Is wild the right word?

It is, but these developments added a new level of concern. My doctors had always seemed been a little unsure about exactly how to categorize my seizures, which look like tonic-clonic seizures (what we used to call grand mals) but didn’t really behave like them:

• I wasn’t exhausted after a seizure. Tired, yes, but I could go on with my day if necessary
• I didn’t lose bowel or bladder control
• I almost always had at least some memory of them

The fact that I’d got to the point where I was conscious all the way through my seizures made it seem even less likely that I was experiencing tonic-clonics.

My doctors were also puzzled to hear that if I got an aura, I could sometimes stop a seizure by clasping my hands in front of me, getting very quiet, and staring at something with a pattern on it, like wallpaper or a bedspread. I have no idea why this works. Perhaps it’s a giant placebo effect. All I know is that there have been *many* times when I’ve been sure that a seizure was imminent that doing these things has stopped it until I can either get an Ativan into my system or get to a place where I can rest.

My brain’s got the upper hand in this fight, so I use every tool I have, even when I can’t explain why it works. I take my meds, do my best to avoid my seizure triggers (which for me, like most people who have seizures, include being overheated, overtired, and/or overstressed; strobe lights don’t bother me) and, if I have to, get on the floor and clasp my hands and stare at the wallpaper.

And I’ve learned to roll with with the punches and not panic quite so much when my body does weird stuff.

“I’m Having a Seizure Right Now.”

“Are you still having seizures?” the neurosurgeon who did my brain AVM surgery asked me a few years back.

“I’m having one in my left arm right now,” I said. “For probably the last half hour. But it’s not something anyone knows about but me, and it’s not going to get any more generalized than it is now.”

That was the year that auras stopped meaning that a big seizure was necessarily on the way. Again, my doctors couldn’t explain it. We tweaked my meds; every now and then low-level twitching in my left leg and arm, noticeable to no one but me, would go on for twenty-minutes to half an hour while I went about my day otherwise unaffected. I stopped worrying about it, barely noticed it. The tonic-clonic seizures stopped. I was just a young woman taking a hell of a lot of meds for a difficult-to-control seizure disorder that doctors posited was likely caused by scar tissue left from my brain AVM surgery. A specialist offered exploratory surgery to see if that was the case, but I politely refused on the grounds that the brain AVM surgery had put the scar tissue there in the first place. I told myself if I got to the point where I couldn’t function because of seizures, I’d consider it.

At one point my seizures were considered “medically controlled” to the point where I got the first stage of my driver’s license.

But my brain wasn’t done with me.

Zoning Out

On Christmas Eve, 2017, I was with my family at my sister’s house. I remember all of us sitting around and talking – me, my dad, my sister and her husband, my uncle, and my brother-in-law – and then people were suddenly asking me if I knew where I was, what year it was, if I knew who the people around me were.

I was very confused. I’d apparently had what’s called an absence seizure, and I had no memory of it. My sister said that I’d looked like I’d wanted to say something, but when she’d asked me what was going on, I hadn’t responded – just stared straight ahead. It hadn’t lasted long. I’d been a bit confused afterward, but not enough that I felt like I needed to go to the hospital. I think that my sister’s young kids were even in the room at the time, and they didn’t seem upset by it.

Was it the first time I’d had one of these? Hard to say. I live alone. When I’m working, I’m in an office by myself for sometimes my whole shift. As more people have observed me having these seizure, the one consistent thing seems to be that I can’t tell when they’re coming and that I have at best only a vague memory afterward that something’s happened. I can now recognize a haziness afterward that might cause me to ask, if I’m with someone, “Did I have a seizure just now?” and be told (probably for the second or third time, but I don’t remember that I’ve already heard it) that I did.

But wait…it gets better.

More Brain Fun and Games

In March, my serum level for one of my meds, an anticonvulsant that had been stable forever, spiked to such a toxic level that I ended up in the hospital for four days. My doctors cut my daily dose of that medicine in half and everything evened out, which was wonderful, because taking half the dose of that medication also made me feel 100% more alert during the day – win-win.

One night during the summer, I found myself feeling very odd – over-emotional, but also very spaced out, almost dissociated. I chalked it up to being over-tired. But the next day, working at my computer in my home office, I felt something I hadn’t felt in years – that really uncomfortable aura in my arm that said something big was on the way. I managed to get to the floor and clasp my hands….and as I stared at the pattern on my ugly plaid couch, I had the oddest sensation of being poised right on the edge of this aura, balancing…the slightest push either way would send me falling, generalizing into the darkness of the tonic-clonic-like seizures of the early days after the brain AVM surgery and stroke. Since it had been so long since I’d had one of these seizures, I wasn’t sure if I was more frightened of being awake and out of control, or passing out and possibly not waking up again. But I had to keep my fear tightly bound, because I knew that if I was going to get through this without seizing, I needed to stay as calm and quiet as possible.

So I stayed on the floor, focusing on breathing slowly, listening to the cat purring beside me, and that seizure didn’t generalize any further – I rode it out, and I’m dealing with this newest brain change the way I’ve dealt with the others: I’ve been back to doctors to have med levels checked (they’re fine; I figured all this happened because my meds were reduced in March, but it doesn’t appear to be), I carry Ativan, and my loved ones and the people I work with know that this is in the works and that if I need to get to the floor suddenly, the best thing they can do is just talk to me while I try to get myself calm enough to get things to pass. I’m scheduled to see another neurologist. My health information is in my cell phone, and if you push the Emergency button on the lock screen you can access it without knowing the code to get into my phone…just in case I need to go to the hospital and I can’t speak for myself. I am prepared, and I have tried to prepare the people around me to the best extent that I can.

Most days things are fine. But this past weekend I felt like I was constantly half in a seizure, even with Ativan in my system, just trying to keep myself balanced on that aura’s edge and not toppling off into something…well, survivable, but scary. I was functional. I wrote most of this blog post, I did laundry, I cleaned out my closet and dresser, I read, I did some other quiet work that I’ve been meaning to do around here…

But I also called the doctor today, to see about getting an appointment to get my med serum levels checked again.

I feel like I should be concerned, but I’m not, really. There’s nothing to do but take these things a day at a time…and things really could be so much worse. Today I am grateful for:

• My family. I got to see my dad today, and I got to talk to my sister on the phone, and on Saturday we’ll all spend time together at my sister’s house with her husband and their kids. Such fun!
• My cat. The cat that I had for 13 years died recently, and getting used to not having her here would be very difficult without her sister still around.
• My friends. I had a lovely visit with a friend who’s known me forever today, and am looking forward to another visit with a friend tomorrow.

I’ll be back again soon.

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