Half a year after my craniotomy, I stopped taking my seizure medications. For the first time since middle school, I was no longer taking in prescription pills, and we all thought this was a new beginning in my life. AVM Free, Seizure Free, Drugs Free, and on an Express Lane to Recovery. Little did we know that the “road less taken” was a windy and twisted one, filled with black ice and invisible pitfalls.
#MyBrainInjuryJourney is a series of posts recounting my experiences in the months and years following my Craniotomy to remove my Arteriovenous Malformation, and the resulting Brain Injury. #MyBrainInjuryJourney is just one person’s experience, but I hope that maybe it will help shed light on some experiences some of you or your loved ones may be having. You can follow the series by going to the #MyBrainInjuryJourney Page.
If you have any questions or comments, please feel free to leave a comment below. Also, please take a moment to look through My Photographic Journey of Brain Injury Recovery post that I made last month, if you have not seen it yet, to get a better grasp of my experiences visually.
One of the biggest roadblocks in my journey for recovery was my eventual diagnosis of Executive Function Disorder. I had a lot of reactions as I began decreasing my seizure suppressant dosage, in preparation for weaning off. Since I had a request about sharing my experiences, I am going to share things I find in my blog, to add to the “authenticity” of the experiences. At these points, I was experiencing the symptoms, frustrations, and anxiousness as I attempted to make sense of my symptoms and brain.
I ended a particular blog entry written on April 12th, 2012, where I mentioned my brain’s reaction to the weaning off from my seizure medication, with these words:
Usually I like to keep things positive here, but I want to document changes in case it is significant. Since I don’t know what to make of this sudden mood/tension change, I want to at least put it down that it existed.
Is my brain “waking up,” now that I am on lower dosage of the medication (that almost killed me last semester)? If so, I wonder how I will be in June, when I am able to go completely off this.
How insightful I was back then…! I had no idea what was going on, but I had an “inkling.” And that inkling came true, once I was completely weaned off. Thanks to my impulse to log things, even if it’s not positive, I am able to share my thoughts with you today, as if it happened only yesterday.
Four months post surgery, I had decreased my Keppra dosage to half (500mg), since I was seizure-free for four months.
I feel like my brain is often hyper alert, I feel a lot of things, I have the urge to say a lot of things, make a lot of statements, and generally care about things that I don’t really need to be caring about.
I don’t know if this is good or bad. Especially since this new “hyper alert” status isn’t really helping me do homework- just helping me procrastinate more efficiently by finding me more things to do other than actual school work. It’s emotionally draining me, and I can’t get school work done.
I didn’t know what I was experiencing at the time, but it was the beginning of my journey with Executive Functioning problems, and everything related with it. I had no idea at this point that such a disorder as “Executive Function Disorder” existed. I was just confused, worried, and having difficulties processing all of the sensory input thrown at me from everywhere.
As a senior in college, I was suddenly facing the fact that I was unable to focus long enough to read a paragraph or write a sentence. Meanwhile, papers were due, projects were due, and exams were coming up regardless of my new-found difficulties with prioritizing tasks, figuring out how to “decompose” assignments and projects to make them manageable, and dealing with crippling anxiety attacks.
Finals Week was very difficult for me, as I grappled with concentration and attention issues. Because until I began decreasing my medication, things were relatively stable and uneventful (though I was experiencing issues, definitely, but I was able to chalk it up to the fact that I just had my brain sliced open and poked at).
It’s been over 5 months since my surgery, and I have no idea why this is happening now. I’m kind of afraid of going off my seizure medication next month, if this is somehow related to my brain…
A month later, I was diagnosed.
While I was glad to finally get an answer to my difficulties, I was not comforted by the way it was presented to me.
It only reinforced the self-loathing I had inside myself: I was continuously frustrated by the fact that I had ridiculous difficulty doing the most menial tasks, like brushing my teeth or taking a shower. Reading my history textbooks were almost out of the question, and yet I could read and research random disorders or psychiatric conditions that caught my fancy. I could not even begin a project if I didn’t have the “right notebook” or the “right pen.”
I was distracted so badly by extra tabs on my desktop that I had to download and install an application that allowed me to have “multiple desktops” so that I could have a “clean” desktop when I was doing work (and didn’t want to get rid of websites I wanted to bookmark, or projects I was working on). The discrepancy between my ability to focus on things that interested me, and things I “should” be focusing on, further made me feel like I’m just not trying hard enough.
Here’s a blog post from the day I was diagnosed with Executive Function Disorder by my neurologist (May 21, 2012; 5 months post surgery):
With my mom’s and my accounts on “me” for the past few months, my neurologist decided that it’s likely that I have “Executive Dysfunction Syndrome,” possibly triggered by the fact that a part of my executive functioning was disrupted when I had the surgery on my left frontal lobe, which is apparently where motivation/intention are controlled.
Somehow, it does not make me feel any better to know that there’s a label for this, and feels like it’s just pushing for me to make more excuses about myself and my inability to finish homework on time (or at least that’s how I feel like people would feel if this ever comes up).
I feel like I’ve just been slapped across the face with a folder with the name of the syndrome while being told, “Here’s a label for you- Lazy and unmotivated to do your work and only want to do things you like doing. Slacker. You have no self control and lack the ability to do what you need to do because you aren’t motivated enough.”
I knew all that without a label that tries to make me feel better about it by saying it’s my brain’s fault, not mine.
The neurologist said, “You don’t have Attention Deficit. You have Intention Deficit.”
Meaning I don’t have ADHD/ADD (I know I don’t), but just deficit in intention. I don’t know how else to take that other than as, “You are a slacker. You don’t try hard enough.”
I talked to him about the problems I was having (wrote about it last week during finals- about not being able to open my eyes for a few hours every morning, the EXTREME dizziness, exhaustion/fatigue, etc.), and he told my mom that my puffed up eyes (my mom was the one to see this during one of the weekends I was home a little while back, because I obviously can’t see for myself if my eyes are puffed up or not) and “not being able to open them” was just me being lazy.
They hurt. That’s why I couldn’t open them. I don’t understand how he could have some syndrome about how “You can focus on things you like but don’t do the work you need to be doing,” but call physical symptoms of SOMETHING (I attributed to stress) as “lazy.” If I could open my eyes, I would have. Especially since… You know… It was finals week and I kind of needed to do things.
I just feel a lot more irritated and uncomfortable after the neurologist appointment than comforted that there’s a “syndrome” or “disorder” out there to describe my conditions.
Also, apparently I need to retrain my brain so I can see the “whole painting” instead of just “half of the painting that has my favorite part and interest me.”
In other words, I’m doing what I’m not supposed to be doing right now- researching and writing about things that interest me instead of doing my school work/real life importance things. So… I guess… I should get onto the “ACTUALLY IMPORTANT THINGS”…
This is really irritating.
Believe it or not, it was only around this time that my family and I realized that I had sustained Brain Injury. We had not realized until then that all of these issues could be linked to the fact that my Left Frontal Lobe was substantially damaged in the process of extricating the AVMs from my brain. Only at this time, was I able to look at my brain scan and actually understand what the black high-density area meant.
We finally realized that my Executive Function Disorder was a serious issue that won’t “just go away with time.” We realized that it was a Brain Injury, and not a “phase.” In the upcoming months, I was diagnosed with Anxiety Disorder, Non-Epileptic Seizure Disorder, Stress-Gait Disorder, and Idiosyncratic Hypersomnolence as I was completely weaned off my medications.