Memories of My Seizures in January
I have an Autoimmune Disorder, which means, that the part of me that fights off illness is attacking itself all the time, in addition to things it would normally fight off. Even the common cold can be lethal to me. A few days before this last Christmas I caught the flu. I did my best to push through it, but on Christmas Eve my body could no longer handle it and I was taken to the Hospital. I was given special medicine and care to help me pull through the flu. Sam stayed with me in the Hospital through Christmas (we had our own little celebration where we opened gifts a few days after I got out). Unfortunately, the struggle with the flu put so much extra strain on my body that I began to feel my Pancreas pain early. Only two weeks after Christmas I ended up in the Hospital again, and again, and again… as soon as I was released from the hospital less than 24 hours later I would end up back again. After a few calls, a surgery was scheduled on my pancreas as soon as possible. By the time I had the surgery I was so physically exhausted that my body wouldn’t come out of the Anesthesia and I had to stay overnight in the hospital again. The following Friday, I had my wisdom teeth pulled. It was just a “fun” month for my body. After every surgery or hospital visit, it is protocol to have a follow up appointment with your regular Doctor, and so I did a week later…
Christmas of 2012
It was a beautiful sunny morning! I climbed into the Van and pulled my phone out to turn on some Swedish music. I stretched my back, slipped on my sunglasses, snapped on my belt, adjusted the mirror, and took a deep breath. I love that I always feel so free when I am driving! When it’s just me behind the wheel with my music, I feel like the entire world is in front of me and as long as I have gas I will always have an adventure. Driving calms me, excites me, and just reminds me that I can still do many things.
Upon arriving at the doctor’s, I signed in and sat down, patiently waiting for them to call my name. I looked at the coffee table next to me, where a pamphlet caught my eye. It was advertizing a prescription weight loss pill with an ingredient that I have taken before. I picked up the pamphlet and read the details about the drug Topiramate also known as Topimax that I had been on before. My heart raced as I read the side effects. I remembered experiencing a few of the side effects and remembered how miserable it was. I set the pamphlet down and relaxed. I was done with that medicine and I was relieved. I thought of my Friend who told me she just started a medication to help her with her weight. I jumped up and pulled out my phone. I text her and told her that if it is the medicine she was taking to stop. Luckily it wasn’t, but to be safe I put the pamphlet in my bag to show her later. They called me back.
My Doctor is amazing! He came and took me in as one of his patients years ago during one of my darkest medical moments, and has always been there for me. He has even came to see me in the Hospital and held my hand as I cried trying to deal with pain waiting for meds to work. I in no way hold the following events against him.
My Doctor came and started talking to me. He asked me what happened, and I told him I had pancreas problems, but that I have been great since I recovered from the surgery. He asked what it felt like. I told him I had a really bad stomach ache. He paused and looked at my history on the computer. He said that is has been apparent that in my past I have had Stomach Migraines before. I was pretty sure it wasn’t though. He worried that if I was wrong it would come back and put me in the hospital again, so he said he wanted to put me on an old medication again… Topimax. My heart skipped a beat. I tried to convince him that I was right, but he didn’t want to risk it. He compromised saying that if I take it now, if nothing happens he would wean me off it later. I didn’t argue and took the prescription.
The drive didn’t seem to comfort me much as I went home. I was depressed. I got home and text Sam saying I was put on the medication and was sad. He was really upset. He had never seen but just hearing about what the side effects did to me in the past frustrated him to think it was going to happen again. I got home and looked at the prescription. It was the exact same dose as the last time. I went into the med cabinet and pulled out my old bottle. There was one left, and it hadn’t expired yet. I took the pill reluctantly, and gave my mother the prescription to fill for me to continue taking them tomorrow. A short time later, I began to feel incredibly sleepy-a side effect. I text Sam and said I was going for a nap and that I had no idea when I would wake up. I lay down in my bed and closed my eyes. I hoped I would have a good dream… and that is when everything changed…
I opened my eyes to see my Bishop’s wife, who is a nurse, standing next to my bed trying to talk to me. I knew something was wrong. I tried to say hello but nothing happened. I got scared. She asked if I knew what was wrong. I glanced over at the bottle of Topimax behind her on my dresser. With all my might I tried to point and say “I started taking Topimax” but I couldn’t. I wanted to scream “started Topimax!” but all I was able to do was to move my arm a little and repeat “sttt…stt…stt…” She gently brushed my bangs out of my eyes “You poor Dear! It’s okay; we are going to take you to the hospital.”
My memory blanks out for a time after this.
The next thing that I remember is looking at a ceiling. You know in dreams where one second you’re taking a test at school, and without explanation or transition, you are abruptly swimming in a pool in Vegas? It was like that. I went from staring at her face to staring at a ceiling. I recognized that ceiling, and upon looking down, I saw hospital curtains. “Oh! I am in a hospital. Who is sick?” I tried moving, but my whole body was like lead. As I continued glancing downward, I saw that I was in pajama pants and a hospital gown with an IV. “Dang” I thought, realizing it was me. I quickly tried to see who was with me. I saw my Mother and Sam sitting next to my Bed. My mother spoke to me as if talking to a three-year old. “Kaija, do you know why you are here?” I thought for a second and replied “no.” my mother sighed “you had a Seizure.” I had never had one before. It didn’t seem that bad, but I knew it had caused me to be in the ER, which is expensive. I quickly tried to show I was normal and fine, by leaning back as animated as I could into my pillow and saying “oh no…” in a disappointed way.
Then Blank.
I was suddenly standing in a strange dark room. A man told me to lay down on a strange board.
Then Blank.
I was in (what seemed) like another strange dark room with my head in a box. The man behind glass in another room kept telling me to hold still. I could hear he was upset with me. I didn’t know why I needed to hold still or why I moved? He asked if something was wrong. I said “I need to go to the bathroom!” annoyed he came over and helped me up pointed to a door in the lit up hallway and said it was there, and to hurry. I carried my iv and walked alone to the door. I watched my hand as it griped the knob to twist it open.
Then blank.
I was sitting up in bed back in the first hospital room again. A man and a lady were there. The lady asked me to do things like touch my finger to my nose; I felt like I was pulled over for a DUI. The man asked me questions like: Who is the vice president, how many nickels are in a dollar, and to spell an odd word. Tests make me nervous; I have never been good at them. In addition to that, I am a Dyslexic, who is bad at math, and doesn’t pay attention to politics. I didn’t know the answers. My dad (who I didn’t even know had gotten there) chirped up “Quick! What is the Quadratic Formula?” I closed my eyes. “ negative B plus or minus the square root of B squared minus four A C, all over two A.” the man was puzzled. My dad proudly smiled and said “she’s right.”
Then blank.
I was lying in a different bed in a different room again staring at the iv in my hand lying near my face, when suddenly I heard soft crying. I looked around there was only Sam sitting next to my bed, with his face hanging low. I didn’t understand what was wrong with him. I was fine and felt fine. I held his hand in attempts to comfort him. I rubbed my thumb back and forth along his skin so he knew I was there. “I… I don’t understand… I don’t understand… I don’t understand…” I repeated as I started to tear up. I just kept asking myself in my head “what is happening to me???”
Then blank.
Sam had his jacket on. He leaned down and kissed my forehead. He looked into my eyes strongly. “I need to go home now. I love you.” I had no memory and no idea what was happening, or why I hurt. I was scared, and he was the only thing I knew. I didn’t want him to leave. The idea overwhelmed me. I started to tear up again. Just before he walked out the door, he stopped and looked back at me. His face was so sad, and then he was gone. I reached my hand out toward the door desperately for him to come back, but there was no sign of him. I curled up and started to cry; I was alone.
Then blank.
I woke up to strange beeps. I opened my eyes to another dark room. Only this one seemed to be the size of a walk in closet. I tried to lift my head to look around more, and couldn’t I was suddenly wide awake, but I couldn’t move any part of my body no matter how hard I tried. I could feel I was completely naked with a gown just laid loosely on top of me. I glanced at my arms and hands, which were covered in bandages with all kinds of blood stains and tubes coming out. Some injecting what felt like lava, and others ice. I couldn’t see my legs but both of them were bound with machines squeezing my calves, and a large tube coming from between my legs. I didn’t know what to do. Suddenly two guys came in debating to put a bed pan under me for a bowel movement. I quickly tried to say “Don’t do it!” but nothing came out. They grabbed my limp body and jammed things under me, so I was contorted in an odd way and left me. I started at the glowing red clock. It was two in the morning. I knew it was going to be a long night…
For hours I fought. I did everything in my power to move. I slowly was able to wiggle. In doing so I could feel there were wires all over my torso, face, and head. Every so often someone would come in and move my limp body around. With each visit, I would try to speak, and eventually raspy sounds of air started coming out. It hurt. I hurt. My nose and mouth were so dry and cracked that all attempts to speak burned and stung. I wanted so desperately to find some kind of relief. A guy came in and I wiggled with all my might and gasp a kind of whisper. He quickly ran out and brought back another man. He swished a sponge in water and stuck it in my mouth. That seemed to evaporate the instant it touched my skin. He asked “can I get you anything?” I focused with all my might and strained “…com… fort… dis… comfort.” I melted with exhaustion. That one word was like carrying a heavy weight. The guy shifted my body for me saying that was all he could do. By the time morning came around I was speaking in sentences without blacking out. The hours felt like months. I found my lonely self staring at the crack in the door watching for any sign of someone coming to be with me. I didn’t care who at this point; I was scared and didn’t want to be alone.
spent a lot of time thinking. When while two guys were giving me a sponge bath in bed it hit me “I know why I am here!” One paused and tapped my shoulder “yes. You had a seizure.” “no!” I exclaimed. “Topimax! 100 mg of Topimax! I took it before I ended up here.” The guy just smiled and said “Ok” just brushing it off like I was crazy. I was terrified! I was in a world where no one listened to what I would say, but all of a sudden the other bath helper stopped. “I just read about that drug. A possible side effect of that drug is a seizure. We should tell the doctor. If that is so, she may not have Epilepsy.” “Nah, just let the doctors worry about it. He is a specialist. He knows what he is doing…” They laid a gown on top of me and left my room. I heard them arguing outside my door, the one really thought they should tell. I closed my eyes and said a prayer, “God, what is happening to me? I feel alone and scared. Please help me…” I drifted off into sleep. I woke up to my mom stopping by to visit me. I was embarrassed, but overjoyed so see something I connected to life. A bit later, the Doctor stopped by saying that he was told I took 100mg of Topimax. Due to my body not always working or responding to normal medicine, the dosage I was given was wrong. Topimax will cause seizures in high doses, and normal person starts the medicine at 5mg. Over time, they work up to a higher dose, the usual maximum for which is 30mg. I looked at him and said, “Well, I started at 100mg, and here I am.”
In case you thought I was exaggerating :P
As I continued to improve, they took me off the 13 iv’s I was on, the Electroencephalogram (wires on head, face, neck), Electrocardiogram ECG (electrodes on torso), Electrocardiogram EKG (wires around heart and on arms and legs, pressure Cup), A line (special monitoring system inserted into an Artery), oxygen, Cardio relieving leggings (constantly squeeze legs to prevent blood clots and stress on heart.), Catheter (a tube that empties bladder so I don’t have to), blood oxygen counter, and blood soaked things. Finally I was moved to a new unit, where my family and Sam met me and told me what happened. They told me about no one believing me because I had originally lost my mind. My speech and muscles would jitter and constantly repeat. Looking at me was like listening to a broken record player. I would be conscious but not “there”. They said my body started to shut down and they feared my lungs would collapse and my heart would stop. I would puke and soil myself randomly, and nothing about me worked. I had a seizure at one point for 30 minutes straight, and for a while they thought I may never speak or function again. After seeing Sam and my family, and being visited by a dear friend and meeting his sweet grandmother, a day later they let me go home.
Since I have been home I haven’t been the same. It was worse in the beginning. I wasn’t allowed to drive for 3 months. The first week I would randomly make funny sounds and I stuttered when I spoke. I have lost 60% of my memory. I didn’t sleep the first month of being home because I was afraid to wake up somewhere strange again, and when I did fall asleep for a few minutes I would experience severe nightmares about the hospital. For three months I couldn’t stand for more than a few minutes before I would start to pass out.
I am standing now, and I am even going hiking today. The trauma I went through still means that my brain is weak though. If my blood sugar goes below 30 when I sleep I have a grand mal seizure. Last week Sam woke up to me breathing irregularly in the middle of the night. After being unable to get me to respond, he called my parents who rushed to try to save me. They had to use Glucagon and called the paramedics. My mother held me and cried as they waited for help to arrive. I survived again thanks to Sam. He has devoted his life to saving mine. Every day he pushes himself to stay up as long as possible to know I am still breathing. Then he pushes himself to work at a job that barely gives him enough to get by, and then visits me. After all, if I am going to have a short life, he wants to spend every moment of it there with me. I am grateful to him, my family, and all who have given so much of their lives so that I can live too.
This has been my new challenge: to continue to survive the night. It’s a horrible thing that has made everyday seem a little more precious to me… so now I sit behind the wheel, stretch my back, slip on my sunglasses, clip on my belt, adjust the mirror, and take a deep breath. I feel once again like I am free. The world is set before me, and at least for now, there is another adventure waiting.
Onward into life’s horizons.
-Kaija
