“Curiouser and curiouser!” Alice, Alice in Wonderland by Lewis Carroll
Life has changed for pretty much everyone with the introduction of COVID-19 into the world. The virus has made it difficult for everyone to find interesting entertainment within new closed environments. My husband and I decided to take a break from our usual confinement refinement by opening the jigsaw puzzle I received as a Christmas gift last year.
I used to love putting together jigsaw puzzles. And we worked on many puzzles during the first years of our marriage. It’s an opportunity to engage in a Zen-like activity while talking or listening to music. But it’s been a lot of years since we’ve worked on one.
We sat down, turned on some good classic rock, and started to sort. As I sorted the pieces into piles, I felt a tightness in my chest. I ignored this feeling, but it got worse. I began breathing heavily, which I attributed to some kind of tension unrelated to the puzzle.
The pain flared as I filled in the center of the puzzle. We stopped for the evening and I had to acknowledge that I felt pretty rough. Stuff just catching up with me, I thought.
The next day, I was drawn to the puzzle immediately. I loved the satisfaction of finding a piece for an odd space or completing an object that revealed more of the picture. I loved it, and I thought the puzzle was calming, so why was my chest hurting and my heart hammering?
The answer was I hurt because I was ignoring one of my body’s warning mechanisms. Stop now! Your body is over-stimulated and you are in danger of having a seizure.
My body began to calm when I stopped working on the puzzle. Needless to say, I was angry. Why puzzle pieces? I remember a time when playing Parcheesi triggered a seizure, but I felt like that was different. Different as in I was on a lot of medications that pushed anything into a seizure. Different in that I am stabilized now. Different in that I hate Parcheesi and I love puzzles.
Anyway, it just seemed wrong, so I looked for some information.
I wasn’t expecting an answer. There are never many answers with temporal lobe epilepsy. But I was hoping to find some logical ideas. And that is when I read the article “Neuroscience: When a Single Image Can Cause a Seizure” by Christopher J. Honey and Taufik Valiante in Current Biology.
This article goes beyond the usual statement that people with photosensitivity epilepsy have trouble with contrasts and certain patterns. According to the authors, people have known since classical antiquity that particular images trigger seizures in some individuals. Now, they say, we have a clue about what happens: many of these images amplify 30–80 Hz rhythmic activity in the visual brain.
Brain circuit oscillations in the 30–80 Hz range are gamma oscillations, which play a role in how the brain sends messages. The authors associate gamma oscillations with the “onset zone” of seizures and link them to seizures connected with photosensitivity epilepsy.
At this point the authors are careful to state that they don’t know if gamma oscillations cause seizures or if they are a byproduct of the abnormal brain wiring.
As I understand it, the brain circuit sends messages through oscillation, which become gamma in the 30-80Hz range. This is a problem for those of us with photosensitivity because either the gamma oscillations cause the seizure or they impact abnormal brain wiring, which causes the seizure.
The image seems to be the key piece that throws the oscillation into the gamma range. And high-contrast, black-and-white images in sharp focus, such as a noir movie or a game pattern or a jigsaw puzzle, elicit the largest gamma oscillations, according the study.
So why do these gamma oscillations pose a risk for those of us with photosensitivity? The authors suggest some brains cannot handle the feedback processes generated by certain images, which then affect the brain’s responses to all forms of visual stimulation.
See how they circled around to abnormal brain wiring again? Be that as it may, they might be correct. Making sense of photosensitivity epilepsy is a struggle, especially for the person experiencing it and for those who live and work with the individual.
First and foremost, there is the constant vigilance, always being aware of lights in homes and businesses, on television, at the movies, from the computer screen, and on and on. Try explaining why you can’t serve on a jury because the courtroom has fluorescent lights or why driving down a tree-lined street makes you feel like you will pass out.
Then there is the problem of other people’s perceptions, which usually run the gamut from total disbelief to anger to judgement.
Finally, there is the frustration that neurologists do not address photosensitivity clearly, at least not in my long experience with neurologists. There are limits to what they will listen to and attempt to understand or address during an office visit.
It’s taken me years to come to a moderate understanding of my particular problems. And just when I think I have it under control, I realize, painfully, how wrong I am. The only survival advice I can give here is that by continuing to ask the questions we may find our answers and with them, self-acceptance. Accepting our condition gives us strength to reorder our lives in the best way for each of us.
As it turned out the puzzle was a large picture of Alice in Wonderland, but I may be the only one finding that detail humorous.