Meditations and reflections of a (former?) epileptic in recovery
My New Year's resolution is to blog regularly, even if it means writing random nonsense that has little to do with research. To start, I wanted to tell the story of my health for my research career. This is not a pity party but a documentary effort. Now that I think I have (fingers crossed) closed this chapter of my life, I feel ready to write a bit about it. A lot of this story is about me being stupid. Don't be stupid like me.
I had my first seizure when I was 21, on Thanksgiving day my senior year of college. After four days straight of roughly 2-3 hours of sleep a night, I collapsed in the living room while studying for a final. Losing the ability to read while looking at a dense math book is strange—I wasn't sure if I was just out of my depth or something was actually wrong until I felt a buzzing numb sensation move up my body while trying to sound out the word "the." As I woke up, I thought my dad was kidding when he told me I had just had a seizure.
Thanksgiving is my favorite holiday. Every year around 15 of my family get together for smoked turkey, pumpkin pie, the works. I must say a soggy vending machine turkey-cranberry sandwich doesn't quite replace that. However it's a blessing that it happened when I was home.
After all, I actually1 had my first seizure four months earlier. I was living alone, doing a depressingly boring manual test engineer internship for a defense prime. One night, I recall waking up in a daze, with sore muscles. I was a bit confused but didn't think much of it, and went to bed. The next day coworkers asked me if I had been in a fight, or had too much to drink—my face was bruised but I couldn't recall why.
Similarly, after the Thanksgiving Seizure I came back with a subconjunctival hemorrhage. It sounds scary for what it is, basically a bruise inside your eyeball that turns the whites of the eye red. It was a great way to get some pity from instructors, collaborators, and friends, but I flunked that final nonetheless and barely passed the course.
My first neurologist was ok with me refusing to go on medication. In hindsight, this was an outrageously stupid stance for me to take, but one of my closest friends had also recently become epileptic2 and I had watched the way his witches' brew of drugs had sapped his vitality and mental speed3 and resolved to avoid this fate at all costs, including risking further seizures.
I was in denial.
For the next few years, I was unmedicated, and had sufficiently infrequent seizures that I could pretend to live a normal life. I stopped driving4 but living in the dense neighborhoods around ASU made this a limited impediment. Through my first four years as an epileptic, I came to live with the roughly 4 to 8 seizures a year. Less than one a month isn't that bad, right??
I learned to recognize my aura—the signs of a coming episode—over time. It was a loss of the ability to read, speak, or understand speech. It had deja-vu-like sensations, and a feeling that's almost impossible to put into words, like the sense that my own inner monologue was speaking a tongue I couldn't understand. These came to be accompanied, of course, by the panic and adrenaline rush of foresight.
Sometimes, I could fight the aura, and avoid a seizure. At least, it felt like I could. I could lay down, clench my fists, stare at the ceiling, and let the sensations pass over me without a seizure. Other times this failed. It probably only felt like I was "beating" them. Illusion of free will and all.
Unfortunately, my main triggers are stress and sleep deprivation. Not very conducive to the grad student lifestyle, at least as I had been living it. Eventually I learned to cope. Take on less. Give up on a deadline early if it looks like an unsustainable amount of stress would be needed. Sleep more. Oversleep out of an abundance of caution. Seizures would still came but it felt like I had things under control.
I don't know exactly how many seizures I had between January 2018 and August 2020. I lived on my own and I was able to handle them at home, lay down on my stomach when I felt them coming, so I wouldn't choke on my vomit. I still wasn't medicated, which gave me quite a bit of freedom5. I took an internship in Japan. I worked in Pittsburgh for a little over half a year.
I completed my masters and applied to PhD programs. Living in Pittsburgh, I took the offer to come back to the west coast to PhD at UCSB. For the pandemic, I moved back home with my parents and did my first year of PhD in my childhood bedroom in Mesa, AZ. Financially this was a good decision, socially I'm not sure, but safety-wise, this turned out to be very prescient.
I had a seizure where I dislocated my right shoulder. It turns out, the human body is very strong—if you swing your arm straight up and continue rotating backward, with all of your strength, your arm can pull itself out of its own socket. Finally, far too late, I met with a second neurologist to get on my first seizure medication.
We don't have a sophisticated causal understanding of epilepsy. It is a descriptive label to an idiosyncratic set of seizure disorders that can't be explained by tumors or drugs. Thus, there is no clear way to know a-priori how to treat it. The process of finding a treatment to manage epilepsy is individual and iterative.
With my arm in a sling and in the middle of a physical therapy regimen, I moved to Santa Barbara to start my second year of my PhD. I transitioned to a new neurologist and continued the process of slowly ramping up my medicine.
It's a little hard to do research with one arm, but I was mostly able to manage. Lots of people would ask me why my arm was in a sling. I would mumble something about skateboards.
Having a low base rate of seizures is a blessing and a curse. You can't know if a treatment is really working until it fails to stop several seizures. How could I know that the medicine wasn't increasing my threshold, and I was only still having them from time to time because I was doing something wrong? Maybe I needed to stress less, sleep more? My medicine made me naturally crankier, and raised my brain-mouth barrier6, so I wanted to avoid increasing the dose at all cost.
Unfortunately, the seizures didn't stop, and I started dislocating my arm more. After the third or fourth breakthrough seizure, my neurologist convinced me to start raising the dose. We kept cranking it up, hoping the seizures would stop. Maybe they slowed down? It was unclear.
They came in embarrassing times. I had to explain to my desk neighbor that I was stopping my work to lay down on my jacket out of an abundance of caution because I had felt the sensations—she didn't need to worry and if I had a seizure, she needed to only call 911 if it lasted more than a couple minutes. One time, when I was alone in lab, I did have a seizure, and vomited on the carpet. Embarrassed and sore, I wiped it up off the carpet myself, and there's still a small stain7.
On the maximum dose, they still didn't stop. I didn't want to try a new one and risk worsening things. But the dislocations also continued.
I have observed a scaling law in arm dislocations. The human shoulder has recursive self-improvement in dislocation capabilities. When one happens, it damages the tendons, cartilage, and bones, making the next one easier. By the third or fourth I had, the ER doctor implored me to get reconstructive surgery.
Figuring that the last thing I should do is let myself mess up the expensive repair job, I finally gave in and agreed to try a new medication.
I got the surgery, and had the longest period of arm non-use yet.
The medicine worked.
I had the most productive period of my PhD.
It has now been a year since my last seizure.
I can confidently drive again. I feel like I can live long term in the sun belt again.
I feel like such an idiot. This is all I had to do?! But my obstinance toward drug experimentation is in the past.
My life will never be quite the same as it was before, and my experience with epilepsy drove important changes in my life.
I had to skip an exciting visiting scholar opportunity for my shoulder surgery.
I have anxieties related to the seizures that will probably not abate for a long time. Every moment of deja vu scares the hell out of me. Weird coping habits I developed linger. I developed the habit of almost always listening to some kind of podcast or speech, just so I could immediately notice if the loss of language understanding has come. Or if I did feel overwhelmed by the aura, I would have something to focus on and maybe beat back the seizure. This auditory safety blanket definitely hampered my ability to sit and ponder, and I am getting used to feeling comfortable without it and sitting in silence.
This need for constant audio started with a seizure and hospitalization during one of my summer internships. I feel like learning to work with this coping mechanism played a part in derailing my intern project8.
My epilepsy robbed me of music—my most cherished hobby—for years. I have played piano since childhood, producing my own arrangements of music from perfect pitch. As any musician would tell you, sitting at the piano was the ultimate form of active relaxation. In my first year of the PhD, I felt a new set of overwhelming sensations overcome me when I was playing the piano, triggering a seizure. I didn't touch the piano for several weeks, and when I did again, the same sensation happened. Out of an abundance of caution, I stopped making music completely—I didn't want to strengthen the connection, and I didn't want to trigger any unnecessary seizures. I had to mostly stop listening to piano music as I felt like the sensations may start. Once you get in your own head, the fear of feeling the aura, or the doubt of whether a sensation is part of the aura or not, starts to feel like the aura in and of itself. I had to cut it off entirely, and I stopped engaging with music for four years. Should I try again? I want to, but I think I'll wait longer.
I think I'm better now though. I certainly hope I am! There's a bit of survivor's guilt in that. A friend has had his life be completely derailed by debilitating epilepsy—what right do I have to feel disadvantaged by mine?? How can I feel joy for seemingly "overcoming" my disability while so many continue to suffer?
I don't know. I am still struggling with these questions. Writing this was a bit of an act of self-therapy to get over it. I hope to help others like me in my career going forward. I wonder what the best way to do that is. I wonder if I count as disabled. How should I identify myself? Will my epilepsy ever really be "cured?"
All I know for now, is that I am extremely grateful looking back on 2024. I was more productive than ever. I made some great friends. And I didn't have any seizures. Here's to continuing this trend in 2025.
probably ↩
It's so fun entering your early 20s—your friends will all start finding out who drew the neurological short straws! ↩
Admittedly, his case was extremely severe, with multi-hour periods of dozens of seizures, etc; a fact I should have considered when refusing drugs. ↩
This is a massive impediment to a full life in Phoenix, Arizona ↩
Albeit, with very limited driving ↩
Not in the thoughtful/inhibited speech way; in the slow, tongue tied, and word salad-y way. ↩
This stain has thankfully since been covered by a larger stain from an AC leak. ↩
That and losing my work laptop in a classic SF smash-and-grab robbery... ↩
Category: Personal; Tags: health, grad student life