Pseudoseizure: The Pain in a Word

About Sarah Blake LaRose

Sarah Blake LaRose is a freelance writer and a professor of Biblical Hebrew at Anderson University School of Theology in Anderson, Indiana. She is one of three blind academic scholars who received the Jacob Bolotin Award from the National Federation of the Blind in 2016 in recognition of innovative work in the field of access to biblical language texts and tools for people who are blind.

“I need a place to live, but I am having a lot of seizures,” a friend told me. Itold her that I was not afraid and she was welcome to live with me. I had heard a lot about seiaures during my young life. I had several friends who had epilspsy, and I had undergone several rounds of tests for partial seizures.

However, I had never seen anyone have a seizure; and when she had her first seizure in my home, all the old myths and superstitions I had heard during my childhood flooded back. “She might swallow her tongue.” “She’s dying.” The seizure lasted for several minutes; and I had not thought to ask her what to do. So I called her mom. That is when I heard the words I came to hate.

“These are pseudoseizures. You need to take her to the hospital.”

I did not know what a pseudoseizure was or what would happen at the emergency room. I just wanted it to stop.

I learned quickly that “pseudoseizures” were not considered a serious medical problem. They were considered a behavior problem. There is an important difference. Medical staff may or may not treat a psychiatric patient kindly. In many cases, they did not. Eventually, we stopped using the ER. If my friend really did have seizures that were brought on by emotional problems, we needed a more compassionate solution. We began the process of charting her seizures and any related factors we could think of. Meanwhile, I was coping with my own symptoms and having another round of testing.

My friend eventually gained control of her seizures. We also learned a more compassionate term for what she lives with: psychogenic nonepileptic seizures. After many years, I also learned that I had not seizures but an unusual migraine variant.

Along the way, I have learned that numerous things can mimic seizures. I have also learned that many people who have nonepileptic seizures spend a long time searching for the answers they need because of the stigma associated with the word pseudoseizures and the assumption that lack of results on their EEG correlates to psychiatric problems. The medical community must do better at understanding epilepsy look-alikes. If you are a doctor, pay attention to your patients’ seizure diaries and any extra information they include about eating habits, activities, environmental cues, etc. You can change people’s lives by doing this.

Leave a Reply

Your email address will not be published. Required fields are marked *