I am setting out today to write about something that is utterly confusing to me, despite the fact that I have been dealing with it for more than ten years. That subject is seizures caused by what I see on television.
Let me start at the beginning and mention that the doctor who diagnosed me years ago told me to stop going to movie theaters and to avoid black and white movies on television. The movie theaters were a common-sense decision. I stopped going not so much because I was told that it was harmful but because it did throw me into a seizure or trigger enough of a problem that I was sure to have one later. Being in a huge room packed with people, sound, and visual movement became so unnerving that I had no trouble giving movies up for good. The last movie I experienced this in was a Pirates of the Caribbean sequel. The nausea, electrical tingling, and feeling of weakness were horrible enough that I still remember it. Holding on to the sides of the seat, I felt as if my body were spinning in space. No, walking away from that was not a problem.
Television, though, turned out to be a different story altogether. In the beginning, I did stay away from black and white movies or movies that had a lot of light and dark contrast. It was this contrast that the doctor warned me against. I was warned about the contrast so early in the diagnosis that I did not think to ask for more information on why this is the case. As it turns out, there is a lot more to go along with it.
So again, let me go back to the beginning when I was just avoiding old black and white movies. The next problem was with seizures triggered from shows originating in the 70s, 80s and 90s. Shows like “Miami Vice”, MTV music videos from that time period and “Masterpiece Theater”, to name a few. Not all the shows from that time period triggered seizures. Some of the slower-moving mysteries such as “Matlock” and “Murder She Wrote” were just fine. But turn on “Upstairs, Downstairs” or the original “Poldark” and I was in trouble quickly.
Gradually I began to test out shows based on our expanded cable services. With the inability to go to a movie theater or live performances (that is another story) of plays or music, my husband decided we needed a more robust package for weekend entertainment. I tried different channels constantly. The confusion grew. There were shows that appeared on the current network lineup that were just not a viable option, too much movement or flashing in the shows to safely view them. For instance “Dancing with the Stars”—uh no. Lights are constantly flashing. “American Music Awards”, hell no with all the explosions on stage and the multiple screens.
At one point, I thought I had it figured out. If the production used a stationary camera and didn’t have a lot of flashing or explosions, I should be fine. And I was until I wasn’t. I began experiencing problems with normal shows that had stationary camera work. Sometimes the problem would come at the beginning of a new season. Sometimes it would occur from one episode to the next. Contemporary shows that became problematic in the middle of a season were especially puzzling.
I finally asked my son-in-law who works for NASA and has a degree in film. What he explained to me about pixels and films, video and timing was beyond my understanding. I simply had no “like” information to tie it to, so it didn’t stick. But it made sense. And it was important in two ways. First, I began to understand that the way the show is made may impact me. I can’t necessarily see it, but my eyes pick up the problem. If I start to tingle, I know I need to get out of it. It’s not a question of my imagination. Second, and perhaps more important, is that I am not crazy in my identification of these problems. There really are differences. For instance, I actually found one on “Masterpiece Theater” with the beginning of “Upstairs, Downstairs”. The producers started out with one type of filming and within a couple of episodes, moved to another. Not only can you see it, or in my case feel it, but if you know what to ask, you can find the change documented.
When I brought these problems to the neurologist I was seeing at the time, I did not get a good response. It was more of a verbal shrug. I don’t fit the profile for photosensitive epilepsy. This experience with the doctor left me feeling extremely insecure. It was as if I have to defend and convince them that I was not lying or simply crazy and imagining all kinds of things associated with my condition. I am no longer seeing this doctor and I do take it seriously. I worry less these days about how someone else will view my triggers and condition and more about taking care of myself. Somehow, I do not believe that what we see rarely triggers us. I think we are all more individual than that. Each of us has a weakness, or maybe several, through which the seizures travel. My weakness could very well be my eyes. Eyes that are affected by the autoimmune Sjogren’s. Where does the epilepsy stop and another condition begin? Or is it all braided together?
While that question won’t be answered anytime soon, the one about what triggers each of us should be. Triggers are everywhere guys, and we have to hunt them down and understand them to gain control.