I have been absent lately. I haven’t published for awhile and several folks have reached out to me wondering where I have been. Honestly, the last few months have been rough for several reasons, but one thing I have learned is that sometimes you just need to step away and take care of yourself. For the first time, I listened to my body…and my soul…and I took some time for me. Sometimes life hits you hard and amidst it all you need to listen to the voice in your head that’s telling you to slow down. But I’m getting myself back into the mode of fighting for survivors and sharing my story.
It was February 21, 2020. I’ll never forget that date. My mom was lying in a hospital bed at home and we knew she didn’t have long. I was headed up to be by her side. We had already said our goodbyes privately by phone earlier in the week and she left me a voicemail so that I would always have her voice to listen to on tough days. I woke up that morning and steeled myself for the long days ahead. I knew this was going to be draining…physically and emotionally, but I needed to be there for my dad, my siblings, and her.
We left the house and stopped at Chik-fil-A to grab some breakfast before driving the three hours “home.” We had already been through this journey with my mother-in-law years before my aneurysm, but that was unexpected. My mom had fought lung cancer valiantly for two years and took a quick turn just in the last month. When we got to the restaurant, I stood in line and noticed I was feeling…off. My legs felt like concrete and rubber at the same time. My husband had to prod me forward to the counter to order. As I began to order, the words wouldn’t come out and things were slow and seemed to slur from my mouth. I just looked up at my husband terrified. He looked at me questioningly and ordered for me. The unspoken thought between us was that my brain was overwhelmed with the grief and stress that was coming. Add stress to brain trauma and things get even more challenging.
I recovered quickly and walked to a booth and sat down. Our food was brought over and we ate in relative silence. I sat staring out the window over my husband’s shoulder, watching the steady stream of cars go past. In a blink of an eye, he was a mile away as the wall behind him pushed away and his voice trailed off into a tunnel. Suddenly sound was distorted, I was shaking and nauseous, and I heard a voice come out of my body that was unrecognizable say “honey, honey, there’s something wrong” and in that moment, my head dropped back and I lost consciousness.
I regained consciousness in what felt like hours later, but what was actually mere seconds. My husband was asking if I was okay. My hands were still shaking pretty badly, but everything else was returning to normal. My vision seemed restored. My hearing was back to normal. I was no longer dizzy or nauseous, although I had no desire to finish my breakfast. My husband asked if I could walk and get to the car. I told him I could and I took his arm for stability. He got me loaded into the car and he got into the driver’s seat and he asked “where do you want to go?” I gave him a weird look and said “mom’s”…as if there was any other option. He looked at me as if I had two heads and said “we’re going to a hospital…which one? I’m sorry but you have to go get a brain scan”. I was furious…muttering under my breath like a teenager angry with a parent. I sat there in the passenger seat with my arms folded across my chest muttering under my breath something along the lines of “you and your damn brain scans.”
We arrived at urgent care and they took me back immediately because of my history. They did a brain scan before even getting me into a room. The scan came back normal but blood work showed an extremely low level of potassium. They were concerned about a possible heart attack and transported me by ambulance to a hospital for care. I kept asking if this is what caused the episode in the morning and everyone just kept saying it was concerning. After the entire day, several pills, and 4 bags of potassium infusions, they sent me home with orders to follow up with my family doctor. I ended up on prescription potassium pills because no matter what we did, my potassium just wouldn’t stay in the normal range.
I continued to have strange feelings. It seemed to be monthly that I’d have an episode like the one that day at Chik-fil-A. In between those big events, I’d have other issues like feeling I was floating as I was walking or, even more strangely, suddenly feeling like I didn’t fit inside the space I was occupying. I had mentioned to the doctors early on in my recovery about some of the unusual feelings but I never really pressed it and it was just assumed that this was just part of my recovery. So often, I kept these things to myself because I felt like a hypochondriac. It always seems like there is “one more thing” and I hated feeling like I was crazy…or that they thought I was. However, as time went, all of these things started to bother me more. I began to ask more questions. I began to press for answers.
When I pushed on my neurology team, they thought it might be my heart and wanted me to talk to my family doctor. But as they heard more of my symptoms, they decided the best course of action was to send me to an epilepsy specialist for evaluation and possible EEG. My epilepsy team worked quickly to find an answer. I was scheduled quickly for a five-day video EEG stay in the hospital. It’s funny that the moment it was scheduled, a wave of fear washed over me. Perhaps ignorance really was bliss. Maybe I was better off just staying completely unaware of any problems.
Since my episodes seemed to be monthly, my doctors weren’t really convinced that we would catch anything on the EEG. We would need to be extremely lucky to catch that monthly occurrence, but we were going to try. We were all just hopeful to get some answers so that I could get the treatment needed to improve my life.
When I arrived at the hospital, they got me settled into my room and began to connect me to what felt like thousands of wires. I was beginning to understand why Frankenstein was so angry. Because I was in the epilepsy unit, I couldn’t get up on my own. I was considered a fall risk because of the seizures so anytime I needed to go to the bathroom I had to call for a nurse. Anytime I wanted to sit in the chair, I had to call for a nurse. I couldn’t even let my husband help me. It had to be the nurse.
Once I was all hooked up and the cameras were active, it was fascinating to see how the EEG reacted to the simplest tasks like me chewing, laughing, smiling, or rolling my eyes. Every task was captured on the monitor. Each motion was emblazoned on the screen and captured for the doctors to review. It was fascinating and creepy. I felt like a baby who just discovered their toes. I kept making faces and talking and moving so that I could watch the machine react. I’m sure the technicians watching were wondering what was wrong with me. I’m apparently just easily entertained. The newness eventually wore off and I settled in and watched tv and played games on my phone to pass the time. It was going to be a long five days.
That first morning, the doctor came in and told me that they didn’t capture anything but not to give up hope…we were just at the beginning. Somehow that didn’t reassure me. I wasn’t feeling very optimistic. The days were long and boring. I couldn’t move around. I couldn’t have visitors because of COVID-19 so it was just me and my husband. He was able to work. I was bored out of my mind. The doctors decided to try to encourage seizures through sleep deprivation so they asked me to stay up as late as possible, but at least until 2:00 AM and no napping during the day. So day 2 became an even longer test of my abilities to keep myself entertained.
I managed to stay up until after 3:00 AM before finally falling asleep and, as is always the case in any hospital stay, I was up early because of the constant barrage of interruptions. When the resident came in that morning he told me that although I didn’t have a seizure, I did have a “pre-seizure”. He told me that the doctor would be in later to discuss. I was so excited because I felt like maybe we were finally on the verge of getting answers and that’s all I wanted.
When the doctor arrived with an entourage of students, I mentioned what the resident said that morning and it turns out that isn’t really “a thing” but apparently what he meant was that there were some indications that a seizure was starting but never fully formed. They wanted to try another night of no sleep. They wanted me to go longer if possible…which meant my exhaustion from the night before was only going to get worse. I understood the point of this, but it certainly wasn’t making me happy. I was becoming irritable and annoyed. I didn’t like being a guinea pig anymore. I didn’t care if we got answers. I just wanted sleep and to be left alone. But I signed up for this.
That night I pushed myself to stay up later. As the hours ticked slowly by, my exhaustion hung in the air. I could barely keep my eyes open after the night before and staying awake all day. The neuro fatigue was brutal and I finally collapsed. I have no idea what time I finally gave up, I just knew I couldn’t go anymore. I swear I only slept for minutes before early morning came and my next neuro check.
The medical team began to trickle in and the doctor sat at the foot of my bed. His easy bedside manner put me at ease as we walked through a battery of questions. He wanted to understand my symptoms in the past. He pressed for every detail that we could remember. He explained that they have not been able to catch an actual seizure while I was there. They were able to catch several blips that could indicate a seizure may be about to form, but never did. But, most importantly, everything I have been telling him and other doctors about my events, indicate frontal lobe seizures and it correlates with the location of my aneurysm. He wanted to try me on seizure medicine to see if my symptoms improved. Basically, it was our best opportunity to prove our suspicions without keeping me in the hospital indefinitely.
He also diagnosed me with Alice In Wonderland Syndrome (AIWS), which I swear he made up and was making fun of me…did he think I had a Cheshire Cat too? As I sat there waiting for the punch line, he explained. Essentially, it is a condition where your visual perception is altered from reality. At first none of this sounded familiar, but as we continued to think more about it, pieces started to fall into place. My husband remembered that while I was recovering in ICU, I asked multiple times if I was in a “normal sized” bed because it seemed like I was too big for it. There were also times when I would walk into a room in our house and feel like the ceiling was coming down on me. Or that I was floating when I was walking. Or that the walls would push a mile away. All of these were things I never mentioned to doctors because they seemed silly…or crazy. I was so afraid that the doctors would look at my never ending list of ailments and think I had to be making this stuff up. So I suffered silently. He said that the seizure medicine should help these episodes too. He warned me to be patient as it often takes time to get the right dosage for seizure management, but we’d get there.
I was near tears. It may have been the exhaustion, but it finally felt like maybe we were getting some answers. On the flip side, that also meant that there were more problems. It was something I continued to struggle with…before my aneurysm, I had no health issues. I took no medications. Since that fateful day, I have typed lists of medications and illnesses because there are now too many to remember. It’s amazing how drastically things can change in an instant.
