It was an average January, Thursday morning at work. My awesome team just got all the kids to the circle time area to begin Morning Meeting. I sang the hello song to each student and the smiles on each child's face just pull you in and fill your heart with even more love. Students were choosing their songs to sing when it was their turn to pick. I was standing up at this point, after just turning the music on the cd player (yes, I still use a cd player in the classroom). I think we started singing the song, when I felt the room spin several times super quick and also my right side of my face tighten up and go upward three times. I was able to say " do I look" and then I passed out. I came conscious mid fall. My head came very close to hitting the book shelves, but my staff told me I didn't based on the distance of where I landed luckily. My co-worker, placed my head on her lap and the nurse was called immediately. Just like my December episode, this one was different than my past passing out episodes. I was able to talk, and I was able to move my limbs. I was of course grateful for both. I remember one of the students started to get worried. I requested that all of the students get moved to the other preschool class and that I would be okay. By the way, I always say I'll be okay and I feel good. It's not really helpful to people trying to help me. However, over the past years I have gotten a lot better at saying when I need a break and not feeling right. Okay, sorry back to what happened.
The Nurse came in and took my blood pressure which wasn't terribly low, and my blood sugar was normal. After a bit, they sat me up and just like December, I passed out a second time. What was different this time is that I didn't have paralysis after the second passing out. Which again I was grateful for this time around, but very strange compared to my past. Administration and the nurse was coming up with a plan to call my husband to just send me home. There was no need for 911, which I agreed with. Then, I started feeling tightness again in my legs, arms, face similar to December, but not as strong yet. So once I said that, they called 911 and I was off. This time I asked to go to a different hospital. My co-worker from my class went with me this time until my husband got there. I was in the ER for about 3 hours with these on/off tightness symptoms that would come on strong then would lessen. My fists, jaw, cheek would tighten up. My cheek felt as if you were smiling all day long and it was sore from all the smiling, but it never went away. talking at times was difficult even. The Neurology team came to check on me and to do their assessment. I had trouble smiling, sticking out my tongue, squeezing their hands, pushing with my legs, and touching my nose. That assessment started upsetting me, because I can see I wasn't doing what they wanted me to do. I was sent for an MRI, CT scan which came out clear so that ruled out a stroke. I eventually was then sent for an EEG to see if I was having any seizure activity. I told them I was supposed to find out my results from my Dec. EEG today actually, but obviously I had to cancel. I was interested on the findings of this EEG, because during the test I was still having the face tightening and my head was slightly moving side to side during the test. The test came back showing some abnormal spikes in my frontal lobe Right in the middle of my head. The doctor soon discharged me as having seizures and wanted to put me on a anti-seizure medicine called Keppra. She also wanted a follow-up and for me to schedule a week long video EEG which is done in the hospital so they an better determine the type of seizure I was having. My total ER experience was about 6 hours and I actually had tests given and answers. Even though, I didn't want to hear I was having seizures I had a feeling 2 months ago that this is what was happening and I was ignored. So I left grateful, I thought.
I started taking the medicine immediately that Thursday night. But by Saturday, my seizure activity started increasing greatly to having multiple a day and were becoming violent. I tried calling the ER doctor's office for that 1-2 day follow-up and was able to get one a month later. I explained the issue and got no where. They told me to email her, so I did. I contacted my neurologist and he called me right back. He told me that my December EEG was normal, and that maybe I need to go up on the Keppra in which I did. He told me I really should stick with the ER hospital, due to the fact that I needed that week long EEG and they had better Neurology department than his. So, I had to accept his honesty and I wrote to the ER doctor and let her know that I increased the medicine and if she wasn't in agreement I would stop. She was okay with it since she finally responded on Tuesday and I was still having increased seizures. But now I'm having many other issues throughout the day. It seemed like every hour I was different (slightly better or alit worst). I'm was having extreme sound sensitivity. So bad, that the kids had to whisper, not play, were not allowed in my room. I had an extreme startle reflex. I would jump or start crying if there was a loud noise, if my door opened, phone rang/vibrated. I had daily horrible headaches. I was also hearing noises or having hallucination. I was thinking the kids were crawling into the room and hiding on the floor. The room was spinning and I had blurred vision on many days. It was getting so bad, that many days, my husband had to call the office and leave a message or I would do a voice text to leave for the doctor of my new symptoms.
Because of all the crazy new symptoms, she was able to squeeze me in for my post-ER check-up over a week later. On the drive to that appointment, I kept obsessing about the amount of cars pulled over and I kept repeating myself. My husband somehow walked me in to the appointment, but he said it seemed as if I was out of my mind. I was saying how people looked rubbery when they walked. He sat me down in the waiting room as he parked the car. But, as i sat there I had such strong urges to just get up and go for a walk. If I was able to walk on my own I probably would’ve. I’m sure I attempted to get up. They called my name before my husband returned, but I couldn't figure out how to get up. So, I just decided to look at them and put my head down. We finally get in the back via wheelchair (good idea). I told the Dr. some things that was happening and then started saying some crazy things as well. She asked my husband, does she usually say things like this. He replied, " no, she is sharp and right to the point". She ended up lowering the Keppra but adding another drug as well to the mix. She really should've admitted me based on my symptoms and how I appeared in that office. Mistake one! Mistake two, is keeping me on Keppra (but she didn't know this yet). On our way out, my husband scheduled the video EEG but it wasn't until March 10th. What? It's not even the end of January yet, that's nuts. I don't remember much about the car ride home, perhaps I kept the crazy in.
As the following week went on, my symptoms just kept getting worst and not better. After each seizure, it was taking more and more of a physical and mental toll on me. I was getting angry at myself and hitting myself. Why is this happening now, all of the sudden? Why can't I see or stand the voices of my kids. One morning I woke up and I swore to my husband that I got up out of bed and went out back in the rain and then went on the couch. I was on the couch in the morning, and I do truly believe I left the house. My mind was playing such tricks on me, it was hard to know what was real sometimes. I eventually started to lose movement in my body and relied on a wheelchair to get to and from the bathroom using a full assist from my husband (my rock). I know it was so hard for me, but I can't ever forget how hard it was for him either during that time. This was the scariest 2 1/2 weeks I have ever been through. I was still having seizures and stuck only in bed day in and day out. I remember after a cluster of seizures, I was confused and I tried getting up out of bed to go for a walk. When I was being stopped I started hitting myself out of frustration. This isn't a life I want I thought! This isn’t a life at all!
My husband was calling the EEG department every few days trying to get an earlier appointment with no luck. He or I was filling my doctor in and she was always just saying, give the medicine time to adjust and wait for the EEG. I was now at the point that I was so weak, I had to be lifted onto the toilet and stood next to. I had to be placed onto a shower chair and watched. The act of taking a shower was so tiring for me. It would wipe me out for the rest of the day. I was wheelchair bound. I went from being a very in shape person to someone who couldn’t even hold up a cup. My elbow was being supported by a pillow to allow less movement for my hand to my mouth. The last straw was when I began choking on my soft food due to the weakness I was having. That night, I had a sane moment and told my husband no matter how I appear good or bad tomorrow we are going to the ER. I'm demanding to be admitted. I will die before my March appointment, I truly felt that. I wasn't eating much, in fear I was going to choke.
I messaged my doctor my plans in the morning. My husband called her office and asked that she call over to the ER and tell someone that I'm on my way and what my plans are. That morning, my parents came to care for my kids and 911 was called. I was freaking out as the EMT's were taking me out due to the vertigo and the sensory issues I was hearing and dealing with. This was going to be a tough ride, but a ride that will hopefully save my life. Now, it's time to save me and bring me back. Crazy people don't know that they're crazy I thought. I knew I was doing crazy things, I needed them to stop! I needed these seizures looked at and why can’t I move anymore? I need these doctors to take me seriously and get to the bottom of what is happening to me NOW!
this is what kept happening to my face/jaw prior to seizures
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