What were your initial epilepsy symptoms?
In high school, I began having painful eye twitches. The doctors I saw didn't seem worried about them. Then during my senior year in college, I had a tonic-clonic seizure. [A seizure of this type may last one to three minutes and involve muscle stiffness, loss of consciousness, tongue biting, and jerking movements in the limbs.] I remember waking up and feeling really shaken. I had chewed my tongue, my body was aching, and I had a terrible headache. The next time I had a seizure, I was at home with my family. I was diagnosed after that and was told that my earlier eye twitches were focal aware seizures. [This kind begins on one side of the brain, and people do not lose consciousness or awareness.]
How did you feel about the diagnosis?
I was relieved. I finally had an answer. And with medication, my epilepsy is fully controlled. I haven't had a tonic-clonic seizure since 2016, and I rarely have focal aware seizures. I see an epileptologist [a neurologist who specializes in epilepsy] about twice a year to make sure the medication is still effective. He also asks me if I want to have children and reminds me that I'll need a change in medication well before I'm ready to conceive. For now, my husband and I are not planning to start a family.
Has your life changed because your seizures are controlled?
I am much more comfortable socializing. Before, my focal aware seizures were painful, and the eye twitches were obvious. I hated having to explain what was happening, so I didn't go out much. Now I also can work full-time and drive. I'm careful not to push myself, especially since I'm working and going to school. I try to get adequate sleep and limit my alcohol intake.
You work with children with autism. Does having epilepsy inform your interactions?
As a behavior technician, I teach daily living skills and help create and implement plans to change problematic behaviors. I'm also pursuing a master's degree in early childhood special education. Of the children I see, at least two have epilepsy. I think it's comforting to parents to know that I have personal experience with seizures and am familiar with side effects of anti-seizure medications.
In what other ways has epilepsy positively affected your life?
It's made me passionate about raising awareness of the disorder, especially in the Hispanic community. In my culture—I'm Mexican American—people don't always go to the doctor. They may not know about available resources. I speak up more and encourage people to visit a doctor and get a diagnosis. I want to help them find these resources and feel safe. Fear of immigration officials is one reason Hispanics don't seek help. Bias is another one. I remember when I was seeing doctors for my eye twitches, I often felt ignored or dismissed. I don't know if it was because I was a teenager or Hispanic or both, but it's really important that all people have their needs met.
Do you have advice for anyone newly diagnosed with epilepsy?
Take it one step at a time and try not to feel overwhelmed. Stay positive and listen to your body. Let people know what to look for and what to do in case you have a seizure. Epilepsy can be managed.
