(December 2020)
It’s been a little over a month since my last blog due to recovering from an increase in seizures. I guess I wanted to leave the year 2020 with a bang. For the past few months I’ve had an increase in passing out/drop attacks. I haven’t had any symptoms to indicate that I will pass out, but boom it just happens and I go down hard. Well, on December 5th, I was taking a shower and down I went. Luckily, my husband heard the bang and came in. My shower is a corner stall and I’m 5’11”. There isn't really any way to fall to without getting hurt. I came to and my head was against the glass side and my shoulder was against the ceramic lip. I immediately felt the pain in my shoulder. My husband dried me off, helped me up and dressed me but I could barely move my arm. I suggested I get it looked at just in case something more major was wrong with it. Off we went to an orthopedic urgent care, but as soon as they heard that I passed out they refused to see me and suggested that I go to the ER. With the increase in Covid cases in my state, they no longer allowed anyone in with you (even in the waiting room), so I was sent in the back alone. The hospital is the last place I wanted to be under the current circumstances but I thought after an x-ray or CT scan I’ll be on my way home. Little did I know, my mind and body had other plans for me. I passed out as they gave me an IV, which never happened to me before. During my time in the ER, I had 2-3 seizures. My seizures are non-epileptic and I’m in no true danger during them brain wise. My scans came back clear for my shoulder, but because I was being medically unstable seizure wise they wanted to admit me in order to monitor me before sending me home. Before going up, they administered a Covid test and off I went once the results came back. I just couldn’t believe that I came in for a fall and now being admitted for something I have been struggling with for the past couple years.
Hospitals and dealing with Functional Neurological Disorder do not go well together at least for me. It’s as if my brain is on overdrive and is constantly in a flight or fight state. The beeping, all the questions, the people, the loud noises set my body and mind crazy. After my first day there they moved me right across from the nurses station to keep a better eye on me since I continued to have 1-2 seizures a day. I asked them to write on the door to keep it closed, because now being across from the nurses station, the noise was even louder. I was on the cardiac floor and everyone's holter monitors were constantly beeping, patients' call buttons were also ringing and phones were ringing. I was in my worst nightmare. I was having pins and needles throughout my body, burning behind my eyes, migraines daily and on/off numbness of my limbs and/or face. Some days I was bed bound, unable to walk. Other days it took two staff and the use of a walker to get me to the bathroom. After about 4 days, I started getting a sore throat, a stuffy nose and pressure in my chest which would increase making breathing very difficult. I definitely was freaked out since I overheard the nurses state they had 10 Covid cases on my floor in isolation a few days prior. I saw my nurse come out of one of the rooms, so I was nervous that germs would be transferred the longer I stay.
Sadly, the hospital I went to did not have a good Neurology Department and were not able to hook me up to an EEG to see what was going on. They witnessed two seizures that they believed looked epileptic in nature and wanted me to be transferred ASAP to Penn or Jefferson Hospital. So the transfer started, however it took 4 days to get a no from Penn. Penn was at max and had no beds. Covid cases were even higher in PA than NJ. The weekend passed and the Dr tried for Jefferson. I was at my breaking points, now being in the hospital for 10 days. Each day I was told I would go home or be transferred. But because I kept having seizures they wouldn’t send me home. Because they were waiting for a response from Penn, then it was the weekend I couldn’t go home. On Monday December 14, I told the Doctor if they didn’t hear from Jefferson Hospital today I want to go home tomorrow and the Doctor agreed. I was tired of thinking I was going home the next day and then not being allowed. They tested me for Covid to prepare me for a possible transfer. I was excited to get tested due to my breathing issues and luckily it still was negative. Around 4:00 p.m on Monday, the nurse came in and said Jefferson is taking you and will be here at 5:00 to get you. I was happy to get an actual work up, but at the same time I’ve been away from home for so long, and my body needs peace and quiet.
The hallways on the Neuro floor at Jefferson were so quiet. I had no roommate with machines and who snored. I was beginning to feel good about the move. Later that night I was already hooked up to an EEG to record my brain waves and there was a camera in the room to record my movements prior, during and after a seizure. I already was getting a work up on my first night here. This is what I needed 10 days ago. I stayed two nights at this hospital and had two seizures. Following one of the seizures, I also had full body paralysis that lasted several hours. That was good for them to see as well as the seizures. In addition, they woke me up both nights thinking I was having a seizure, but I was responsive and able to answer the neuro based questions. Based on their findings and reading all my medical reports from previous hospital stays, they agreed with my current doctors with the FND diagnosis and I was only having non-epileptic seizures. They discharged me in two days which came to a total stay of 12 days away in the hospital for a hurt shoulder.
Twelve days without a real shower, ugh I couldn't wait to get home and take a shower. I used my shower chair to ensure my safety and now my husband stays in the bathroom just in case I have another incident. Since being home on December 16th, I have had a few seizures but they definitely have decreased. I had to cancel Physical Therapy for all of December and hopefully will start going again in January. I don’t have all of my energy back yet and spend a lot of time in bed resting, but I’m home with my favorite people in the world.
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