Tag: seizures

Episode 17

Posted on by Michele

“Is this a normal size bed” I whispered timidly.

“Yes.” My husband just stared at me…not sure what to expect next. “Why?”

“It feels like I’m too big for it. Like it belongs in a dollhouse.”

“No. I promise, everything is perfectly normal sized”.

I had only woken from my coma a few days prior and things were still a bit foggy. We really didn’t give that a second thought considering everything else.

There was never a shortage of things to worry about and focus on with my recovery. Sometimes the issues were mundane like headaches, which you’d expect after brain trauma. Other times, the problems were bizarre and complicated and as impossible to describe as they were to believe. I routinely saw snakes. Not actual snakes, but snakes made out of triangular prisms. I always explained it to doctors the same way each time: one triangle is right side up, the next is upside down, then right side up, and so on until it forms a chain…or a snake. They are semi-translucent and shimmery like prisms casting rainbows. They slither through my field of vision. Only appearing in my left eye. Always just my left eye. It starts with one, then two, then there are so many that I cannot see out of my left eye. It can last anywhere from 30 minutes to two hours or it can stop just as quickly as it started. None of the doctors could figure out what was causing the snakes…except to say it wasn’t my eyes. My eyes were perfect. Well finally! SOMETHING on me got a clean bill of health! The overwhelming assumption was that the episodes were ocular migraines and there was really no cure. So I learned to live with them.

As my recovery progressed, new problems popped up almost weekly it seemed. I went to speech therapy to help my memory. I went to Occupational Therapy to help focus my vision issues. I went to Vestibular Therapy to help with my balance and dizziness. I saw Neuro Opthamologists for the ongoing vision problems that no one could explain. I was having trouble focusing despite having perfect vision. I couldn’t get my eyes to communicate what they were seeing to my brain. The snakes were making appearances three times per week or more and I was really beginning to hate them. It got to the point that my husband could just look at me and see the expression on my face and say “snakes?” And I would just nod my head.

As a survivor, I feel like I am constantly going to the doctor or finding things that are wrong. It’s overwhelming and disheartening. I was keeping things to myself either because I didn’t think they were important or I felt like I was being a hypochondriac. I had this vision that the doctors see my name and think “oh gosh, her again…what NOW?!” So I just tuck things away and hope they’ll go away on their own or, at the very least, not kill me.

I had been struggling with weird feelings of the room or the furniture being too small for me again or everything pushing away in a tunnel. And so many times, I had to stop when I was walking because the floor was moving. It felt as though I was always on a people mover or an escalator and I couldn’t get my footing. It was the strangest feeling to walk into a room and all of a sudden, it felt like the ceiling was coming down on my head. I had mentioned this a few times to my husband, but never to the doctors because it just seemed weird and I’ve been laughed at for the snakes before, I could only imagine what this would cause.

As I learned to live with all of these new problems and navigate my daily headaches, I had the spell at Chik-fil-A that I recounted in Episode 14. That issue actually brought me some closure that I wasn’t expecting. On that particular day, the ER told me my potassium was dangerously low and they seemed to think that was the end of it. I followed up with my neurologist the following week though and they initially wanted me to see a cardiologist, but as we talked through the symptoms I had and what exactly happened, they decided that it would be ideal for me to see an epilepsy specialist for a 7 day EEG. I was full of emotion…perplexed, scared, defiant…I didn’t have epilepsy! That’s not what this was. Seriously…hadn’t I been through enough?

I succumbed to another doctor and more tests. After all, I’m the one that wanted answers.

I went for my tests and as the days passed, they weren’t able to find anything definitive. They kept me sleep deprived to trigger a seizure, which wasn’t hard since I don’t sleep anyway. They’d see blips on the screen where I’d get close to one, but it would never fully form into the wave. And then the doctor came in to talk about what he had seen and the experiences he heard from me. Based on all of my symptoms, he believed that I did, in fact, have epilepsy. Seizures can start any time after brain trauma…from months to years afterwards so this wasn’t unusual. He also thought that I had something called Alice In Wonderland Syndrome. I actually started laughing at him because I thought he was kidding. Then I thought he was making fun of me. Turns out it’s actually a disease and I had it.

I left the hospital that day with new diagnoses and more medicine to add to my massive pill caddy. I was struggling somewhere between relief that I wasn’t crazy and anger that there was yet another thing wrong with me.

It’s been 10 months now and I’m doing much better. I’ve had some seizures…mostly when I get extremely tired or worn out. The seizure medicine has stopped the Alice In Wonderland episodes for the most part…occasionally I have episodes where I am too big for a room and that seems to also happen when I am exhausted. And a very interesting success was that the snakes have entirely disappeared. It turns out, they were seizures as well. When I noticed they had stopped, I mentioned them to my epilepsy doctor. I had never considered mentioning it to that team before because I never considered that they were seizures. So finally, after 3 years, I have said goodbye to the prismatic snakes that haunted me several times per week. I’m learning to take things in stride and I have found an even deeper love for Wonderland.

Maybe Alice had it right…

“You’re entirely bonkers. But I’ll tell you a secret. All the best people are.”

 

 

 

Episode 15

Posted on by Michele

April 14 has new meaning to me now. Each year, as it approaches, I am reminded of how my life has been forever changed and how I am beyond blessed. Since my aneurysm ruptured on April 14, 2018, my life has changed in ways that I could never have imagined. Each year since has brought new challenges, frustrations, fears, anger, growth, and promise. And through it all, I have somehow managed to find a peace that was missing in my life prior to this disaster.

I struggled with defining myself after being declared unable to work. Who was I if I wasn’t an IT Leader in Supply Chain Process Improvement? Who was I if it didn’t say “Project Manager” after my name? It was an obstacle that was impossible to leap. I couldn’t just be someone else…even when my brain refused to do the job anymore. I had a list of medical problems that seemed to grow daily, and yet the definition of who I was is the thing that bothered me most.

I knew who I wanted to be. I wanted to help others. I wanted to walk back into the flames carrying water for others who needed the help. But when I looked in the mirror, I didn’t believe that I had the capacity to help others. I wasn’t strong enough, knowledgeable enough, and where would I even start? But even before my aneurysm, I had always talked about feeling as though there was something missing in my life. I wanted to help people. I wanted that to be my life’s work. I started tweeting about awareness. I started sharing statistics. And finally, some amazing people jumped into my life and asked if I was ready for advocacy.

I started writing my blog to share my experiences with my recovery because, while every recovery is different, sometimes survivors need to know they are not alone. Sometimes, survivors need to see that a symptom might match theirs and maybe their care team hasn’t looked at it the way mine has…or maybe they just want to know that other survivors have bad days and cuss and throw things too (believe me, I do). I’ve also been extremely blessed to write for a few publications to share my perspective to get my voice out there even further. And I have been honored to help a few families whose loved ones were in the hospital following an event when they have needed support. That has been an extremely humbling experience to be trusted with their hearts as they navigate this new journey.

I may not be changing the world, but with each action of advocacy, I realize that my heart is full and I have found a peace that I never had during my career. Oh, don’t get me wrong, I still struggle and have my moments of wishing for my “old” life, but that wish is nothing more than longing for a life that isn’t filled with the complications of daily migraines, seizures, hypothalamus dysfunction, and whatever other medical problems they want to throw at me. There are moments of weakness when I just want it all to go away…I am human, after all. But when I really sit and think about it, three years ago, on April 14, 2018, I was not only given a miracle of a second chance at life, I was given a miracle of happiness.

Episode 14

Posted on by Michele

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.