About the Tricky A-typical Seizures…
In December 2017, Sarah had her fifth, and hopefully last, Gamma knife surgery to treat a small and residual brain malformation. Those Gamma knife radiation sessions affect the brain over a 3-5 year period, causing the malformed blood vessels and veins to slowly swell shut. A few months later, while finishing her Dissertation proposal and working on an internship application, she started to have dizzy spells, which turned out to be atypical seizures. They started mild in mid-summer, when she was in a class for Internship Application and Essays. As the frequency and intensity of the episodes increased in July 2018, her personal and academic activities were coming to a halt. Sarah started sharing the difficulties she was having with day to day living. At that time, her husband attended to his terminally ill father in Ohio and I was attending to my wife who was recovering from a hip replacement surgery, also in Ohio. We both made the difficult arrangement to head to Oakland and help Sarah navigate her medical, academic, and personal life.
From day one, it was difficult to watch helplessly as Sarah was having her episodes. But we decided to divide and conquer right away. Her husband naturally began helping her regain control over their personal life, and I took on the medical side of things. This allowed Sarah to focus on her academics when she could. Also, as she was logging in the frequency and symptoms of her episodes, her husband, who is an IT guru, began working on an app to help her do that. Meanwhile, we contacted her doctors and neurologist to arrange for an MRI and EEG. Thankfully, the results showed nothing spooky. However, it was determined that she was experiencing atypical episodes of seizures. Also, since she had been maxed out on her seizure medication doses, the neurologist added another seizure medication to help with these new episodes. It took several months for the new medication to start showing positive effects.
It is important to note that the area of Sarah’s brain that was last treated is primarily responsible for sensory and fear, which caused severe reactions to light, sound, and smell. Sarah feels an episode coming on, with one to two seconds to act. She sits down if she is standing, and her facial structure changes immediately, in ways I cannot describe. It seems I am looking at a wax figure that resembles her, but is not exactly her. Then, she starts shaking, while looking into space. She has indicated that she can feel her surroundings through a glass-like sensation. After a period of shaking, she gets cold, starts experiencing fear, and lifts her legs off the floor while looking around. This can last 3-5 minutes. When it all stops, she sometimes feels back to her normal self, and sometimes foggy, but always exhausted.
I stayed near Sarah for a period of 8 weeks and watched the same episodes, with variations only in frequency, length, symptoms, and level of cognitive fogginess. I have never heard or seen anything like that before. We started developing hand signals to mark when episodes began and ended. We tried to take daily walks, to get Sarah out of the apartment, but that proved challenging. Daylight tended to trigger an episode, so we walked in the evening, when the sun is less intense. We also reconfigured her environment to minimize the sensory input that triggered her episodes, including sound, smell, and certain light conditions. The hard part was to control what we called screen time, as she needed to use her laptop as frequently as possible to continue her academic progress.
During this time, Sarah confronted many issues. One instance in particular brought her situation into perspective. While taking an evening walk, we witnessed a ninety something year old lady crossing the street so slowly that she held back cars and pedestrian traffic for a bit. I turned to Sarah and said, “This poor lady probably spends most of her daily energy on basic daily necessities”. Sarah looked at me and said, “Dad, I am not far off from her right now”. Her answer was shocking and crushing to me, as it gave me an immediate perspective into her current reality. Thankfully, after a few months, around Thanksgiving, the medication started to take effect just enough, and those atypical seizures started to slow down. I was thankful, and proud of her completing her Summer Internship class, and also proud that she started working on drafts for her dissertation proposal. Under these circumstances, Sarah decided to postpone her dissertation proposal to Spring Semester 2019, and postponed her internship application to Fall 2019, to start internship Fall 2020.