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Hello, my name is Ashley. This is the story of how I've come to my diagnoses of Psychogenic Non-Epileptic Seizures (PNES).
In December, 2018, my mom found me on the bathroom floor shaking. I was having my first witnessed seizure.
Every muscle in my body was tense and my eyes were rolled back. My dad called 911, and I was taken by ambulance to the hospital. My hospital visit consisted of treatment with various medications and monitoring throughout the night. The next morning I was sent home with a referral to MINCEP. Little did I know the next months of my life would be some of the hardest.
In January, 2019, I had my first visit at MINCEP, with Dr. Shams, to try and understand where my seizures were coming from, and then come up with a treatment plan.
During the appointment Dr. Shams ordered an hour long electroencephalogram, often referred to as an EEG test, which are used to monitor and track electrical signals within the brain. During the test, Doctors will look for various fluctuations and patterns, and by viewing these patterns, Doctors can tell the severity of the seizure, as well as the type. The EEG test consisted of placing an assortment of small metal discs upon my head in various places. Connected to each of these discs were long thin wires, which ran into a box kept on my bed, and then continued to a computer system mounted on a rolling stand. After the test, I was diagnosed with epilepsy, and I was told that it could be from having had meningitis and multiple concussions. The feeling of indifference fell over me. I didn't know anything about epilepsy, or what managing it meant.
Later on in January, I went to the University of Minnesota Medical Center for a lengthy, week-long, EEG study. Back on with the all the metal discs and wires, though this time they braided my hair, which helped stop the adhesive from destroying it and creating knots, so that was nice. 5 days into the study, I seized in my sleep; as a result, the Doctors found the information that they were looking for. At this point I was diagnosed with nocturnal Grand-Mal seizures. Fortunately, I was allowed to keep my license, though most diagnosed with seizures aren't.
Throughout the following months, I would have the occasional seizure in my sleep. I was prescribed Lamotrigine and Gabapentin as a way to stop me from seizing throughout the night. At this time, the medication seemed to work and everything seemed to be going fine. I was living a normal life style, that consisted of working, studying, taking care of my child, and spending time with family. As the saying goes, "All was good in the hood."
In the beginning of September, 2019, on one particular day, everything changed.
It started like any other day. My morning routine went as it always does. Laughter filled the room as we picked my son's clothes and got dressed. He ran around with the intense, innocent, and young energy of a 4-year old. Everything was fine and we left for work, which happened to be where Chance went to day care. Getting into work went as usual. I keyed in my security code to get into the building, signed Chance into the school system, and then walked him to his assigned room. The rest of my work day consisted of the children that I cared for being dropped off, and then depending on the day, we would proceed as scheduled with various activities. Later on in the morning I started to have some ringing in my ears and felt as though I were on a roller coaster. I then felt this intense feeling of disaster come over me. Something wasn't right. I informed my boss, Michelle, of how I was feeling and that I needed to go to the Doctor. John, my boyfriend, picked me up from work and brought me to Fairview Lakes, in Wyoming Minnesota. I ended up having a conscious seizure at Fairview, but ultimately ended up going home.
Seizures consume a lot of my energy, so when I got home I was tired. I decided that a nap might help me feel better, and ended up sleeping for 3-hours. I had only been awake from my nap for a matter of minutes before I seized again. My 3rd conscious seizure, ever. Something was seriously wrong. It wasn't normal for me to have seizures while I was awake. So, again, John drove me to the ER, except this time it was the University of Minnesota's ER. I ended up being admitted for three days, was given an EEG, and numerous other tests, but I was sent home again with hopes that my seizures would go back to becoming a more manageable occurrence.
On the following Sunday evening, while out with John picking up dinner to-go, I had a seizure while waiting for him to get our food. He had gotten me a Samsung Smart Watch, which alerted him of my seizure. My next memory, after the seizure, is of being at home, and watching John's mom, Nan', take care of Chance because he had a fever. My entire body was exhausted, and I knew I had to go to work tomorrow, so we ate dinner and went to bed. The next morning, I ended up having to call out from work. Again, there was the ringing in my ear, with the feeling of being on a roller coaster, all accompanied by that same feeling of disaster. Soon after, I ended up having another conscious seizure, except this time it was different. Shortly after I stopped seizing, I would go back into another seizure. Nan' called 911 on the 3rd seizure. I seized again while the ambulance was on its way, as well as another before getting in the ambulance. I was then taken to Regions Hospital in St. Paul, and by the time I had gotten there I had, had 11 seizures, of which, one of them was 8 minutes. Something was seriously off. Previously, I would have 2 seizures a month, while I was sleeping, but now I was having 11 in a matter of 2-hours. In total that day, I ended up having 32 seizures.
While at Regions, I underwent another EEG test. Here come the metal discs, and wires. With the wires in a bundle coming down the back of my head, I felt like one of the Na'vi, from the science fiction movie, Avatar. I had many more seizures during my EEG. But they finally stopped, and I ended up getting rest. After waiting for the Doctors to view my EEG results, I ended up with the diagnoses of Psychogenic Non-Epileptic Seizures.
PNES stems from the brain not being able to process a past trauma. I am not in control of these seizures. They are as real as epileptic ones, with one key exception, my brain waves stay the same during my seizures. This means the seizures cant kill me. Since the day I was diagnosed, I've had to quit my job, can't drive, can't be alone, can't remember conversations, or the events that happened before each seizure. In my mind yesterday was the 23rd of September. I can recall general things, such as being home that day, or the fact that I had been drawing when it happened, but I cannot recall specific details. I have multiple seizures everyday but I'm in the road to recovery. So many loving people have reached out and asked how they can help and where they can donate to help with medical bills and prescription costs. I can't thank you enough for even reaching out.
Thank you so much for reading my story and showing support. -Ashley , John, and Jody