I sat at the computer and read, “fluorescent lighting is unlikely to present a hazard to photosensitive patients.” This statement was made in the study Fluorescent lighting and epilepsy (www.ncbi.nlm.nih.gov/pubmed/499117). I was having a hard time not feeling anger over the words. What good would that do anyway? I wasn’t face-to-face with the authors and chances were really high none of them has epilepsy, much less the kind triggered by light.
I have this type epilepsy. Heat, hunger, fatigue, anger, medication, and whole groups of other situations can trigger my temporal lobe, but light triggers the worst for me.
Fluorescent light is my evil nemesis. When I go into a room, a store or an office with fluorescent lights, I have about 15 minutes before I am in trouble. I have these glasses my husband found for me that are supposed to help, but they only give me a few more minutes at best.
Here is what happens.
First, I begin to feel weak. I may even stumble or sway if I am walking.
Next, I start to have that “bad feeling” that everything is wrong, and I am desperate to fix the problem. Simply walking out would help, but by now I have convinced myself that I can continue what I’m doing and not have a seizure. (At this point you might think I am not making sense. Well, that is the point, because logical thinking is one of the first things to go.)
As my logical thinking goes downhill, my muscles stiffen. My legs don’t want to bend right. Walking is difficult. My arms hurt. My head hurts. My gut begins to twist. My bone marrow feels like it is melting. I feel a burning pain throughout nervous system. Eventually, I have a Complex Seizure if I don’t take my rescue medication.
Sometimes the seizures come too fast to avoid. Not too long ago, I begged my husband to let me go into Hobby Lobby for “just 15 minutes”. I reasoned that I needed art supplies and wrapping paper that he just was not able to pick out for me.
I was hit before I made it half way to the art supplies. I felt myself swirling. I was aware of others around me, but I couldn’t seem to connect with them. I felt like I was in a glass bubble. My husband walked up and, seeing my distress, said something to me. I turned in the opposite direction and ran from him. He, being the good person that he is most of the time, ran after me, knowing exactly what was happening.
Quite a few people have blogged about similar experiences, even if the scientific community is slow to acknowledge the fluorescent effects. Up until yesterday, I thought I understood what the lights did to me. That’s when I had to go to the doctor. I was at the office for almost two hours, under unrelenting fluorescents. I left at the bone marrow-melting phase and went right home and took the rescue medication.
I felt upset and ashamed of my behavior at the office. These feelings are not new, but this time, thanks to the medication, I was calm enough to look back and try to piece things together. It was then that I realized I became emotional, aggressive and angry about the time that my logic began to fail and I started to stagger.
For me, this revelation was huge. It made perfect sense to me that as the lights began to trigger the seizure function in my brain, given where the epilepsy is located, it would impact my emotional stability.
I wondered if this sense of shame and regret that comes after light exposure is from the effect on my emotions, much like the disruption of my motor abilities.
Knowing that my logical self will be replaced by an angry and emotional one after a given period of exposure gives me some odd sense of control. At least I can warn people around me, and afterwards, allow myself some compassion.
About three percent of us with epilepsy are photosensitive, or have seizures triggered by light. It seems like a small percentage now, but that number could grow if more effort is not made to protect the public from entertainment that is too much to handle, even for a normal brain.
Both Japan and England have reported huge surges in first-time emergency room visits resulting from seizures triggered by graphic-heavy television commercials and video games. Medical emergencies related to seizures may spike unless the entertainment industry and the makers of fluorescent lights figure out what they’re doing to us, and maybe to the “normals.”
Brains are more fragile than you think.