Ever since May 5, 2013, I have been a completely different person and have been changing like crazy. Much has happened to me and I would like to tell you all about it and all that I have been through up until this point in time. If this post is long, I will once again cut it up and will continue it another day. Thanks for being patient!
I have seizures. When I say this, I mean full blown, head shaking, arms twitching, leg jerking seizures. They are psychogenic non-epileptic seizures (PNES). This means the following for me:
PNES are attacks that may look like epileptic seizures, but are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress. Frequently, patients with PNES may look like they are experiencing generalized convulsions similar to tonic clonic seizures with falling and shaking. Less frequently, PNES may mimic absence seizures or complex partial seizures with temporary loss of attention or staring. A physician may suspect PNES when the seizures have unusual features such as type of movements, duration, triggers and frequency.
Below is an article on the Epilepsy.com website with a description of the condition I was diagnosed with later. My diagnosis has changed and transformed over time though and I’ll explain further later about that.
May 3rd 2013 was my very first one. I was with my boyfriend at the time in his home in Anaheim. We were being a little bit intimate when it started. It lasted about 5 minutes. My body began thrashing wildly, my head was jerking from left to right and my limbs were hitting my body and the bed and I was completely out of control of my movements of any kind, however I was completely conscious of him trying to talk to me and that he was watching me. He did not know what to do so he just stood there watching me helpless and not knowing what to do to help me. Once I finally stopped shaking and flailing around on his bed, he tried to sit me up. I eventually sat up, but all the while an arm would twitch or a leg would jerk or my head would shake. I was unable to speak because I kept stuttering or staring off or rolling my eyes. Each time I attempted to only groans would come out or chattering of my teeth or biting my tongue or even a sucking of some sort. Eventually after putting some warm clothes on, very slowly, I could say short sentences and told him what I was feeling. My neck hurt from all the jerking back and forth, but other than that I was simply exhausted. I had to urinate so I went to the bathroom. I could not. I came out of the restroom and asked for a sugary drink thinking that perhaps it was an epileptic seizure and I needed some sugar in my system. He even took me outside for some fresh air. All the while I was twitching and speaking oddly and staring off at nothing. I was unable to focus at all. Eventually we went back into his bedroom and we tried to watch a television show. He gave me some sleeping pills hoping it would calm my body. I could not pay attention to the show because I’d end up staring off or shaking my head or jerking around. I was afraid to drive home and didn’t know what to do so I tried to lay down to sleep. All the while lying there twitching and jerking for about 20 minutes until I fell asleep (he stayed awake to watch me all night). I woke up a few hours later to find I was back to normal. I went and was able to use the restroom at last. Went back to sleep when I was able to. No more twitching or anything.
The next day I went home and told my family all that had happened and I was to see my sister’s doctor the next day. I rested all day in bed.
When I saw the doctor for the first time I told her all about what had happened and she immediately started me on the medication called Phenytoin which is a medication for epileptic seizures. I was supposed to start work at my new job that week though so she started me on a low dosage hoping the seizures would decrease. I had gotten the job offer a week before my first seizure. Perhaps this was a shock to my system getting such a high paying job. So strange right? So what happened next? I had maybe 2 more seizures in the week before I sat down and saw the doctor. She told me the next time I have one to let her know. I did, the next Monday after realizing I was having an allergic reaction a few days after starting the medication, which presented by me having bumps underneath my skin under my ears and on my neck. I had a seizure in front of my parents and family at home and they took me to the Emergency Room in Anaheim. The doctor decided to run a CT scan because the last time I was there, I’d had one due to a car accident I had been in and they wanted to see if the 2 things were related possibly. They gave me a shot of the same medication(Phenytoin) I’d been on and I was itchy all over my body so they gave me a shot of Benadryl to stop my reaction. They decided that I’d need to go in for an MRI with dye and without(to see if something inside my body was causing the seizures) and also be hooked up to an EEG machine to test the electrical impulses and activity in my brain. So I was in contact with someone local whom I could get these tests done with.
One major obstacle in my way with all of this doctor nonsense was that I was at the time uninsured. Luckily for me, MSI (sort of like MediCal) was something available to me so I could sign up for emergency benefits due to it these seizures coming out of nowhere and me being unemployed at the time it started. I immediately signed up before my first day of work and would have the benefits in just a few short weeks. Amazing what you find out from doctors these days! So I got into gear and got all my paperwork turned in in just a day. Now I just had to wait for the funds, or I could pay cash for the tests. I attempted to try to get the neurology tests started up by contacting a doctor friend of my doctor and they basically turned me away. So my physician advised me to go to the UCI Medical Center in Orange so they could admit me and run all the tests I needed to have done. I informed my new employer and was off to get myself admitted to the hospital ASAP.
With my Dad and sister older sister at my side, they helped me go through all the questions and such in order to be admitted to UCI Medical Center. This place was very quick with admitting me. Within 2 hours I was on my way up to get my MRI. Once done with this scary test full of loud noises and whirs, they brought me back to my little room so they could begin hooking me up to a 24 hour EEG machine. The goal of my doctors? To capture me having a seizure with it so they could figure out the source of the seizures. All this talking to doctors was making me so nervous. I was such a shaken up mess and so afraid. My sisters were coming and going to see me once I was admitted and my boyfriend came to stay the night with me here and there when he wasn’t at work. Such a sweet thing to do. He was so frightened for me, the poor thing, I will forever appreciate him for all he did. Sticking by my side like that through it all. My family as well. All calling me and checking up on how things were going with the tests.
When my boyfriend had left for work the next day after being admitted, my dad took over babysitting me the 2nd evening of my being admitted. My dad was just talking to me asking me how my day had been when I began trying to tell him and my mind went blank and started staring at him and my breathing stopped. The nurses had placed these giant cushions on the rails of my bed in case I had a seizure so I wouldn’t harm myself. Good thing too! A seizure started and I was hitting those cushions like crazy with my arms and my legs were kicking and my head was hitting the cushions as well. Shaking back and forth like crazy. I could hear my Dad yelling down the hallway that I was having a seizure to the nurses. Immediately I could sense them all around me trying to talk to me and communicate something to me to calm me down. Eventually I stopped and they told me to let them know that I was okay by moving an arm on my own. I did so and waved softly at them. I was exhausted and sure that I’d finally be able to sleep properly. An odd little fact, once I had my initial seizure each one following was anywhere from 20 seconds long to a minute long. Nothing lasted as long as that first one. I think something clicked in my brain, though not sure what it was.
Now all I had to do was wait as patiently as possible for the test results from the Video EEG and for the MRI test results. Had to wait almost 24 Hours for it all. The next day would hopefully be full of information as to what was causing all these seizures.