(June 2019)
I was feeling a little off this day, just nothing seemed right. Later in the afternoon my husband went out to help a friend in town with a house job. I stayed in bed to stay as safe as I can be. However, I started having some breathing issues and my blood pressure was extremely low. I could barely say words due to my light breathing. I texted a nurse friend who called me since she was concerned. She said based on how I sounded I should go to the ER immediately. I had my son call my husband who then quickly showed up. I soon began having seizures (non-epileptic) one after another. My husband arrived and I expressed my concern with the frequency of seizures, and breathing along with the blood pressure. We decided 911 was needed and the quickest way to get me to the hospital and to be seen.
When the emergency team showed up, they assessed my O2 along with other vitals. My breathing was okay but I still struggled to say more than two words together. They kept saying “talk louder”. Don’t they know I would if I could! I had 1-2 more seizures while the EMT’s were there. They stated that I seemed to be having more of an anxiety attack, but it was my choice to be sent to the hospital especially if I’m experiencing new symptoms. We decided that going to the ER was in my best interest since I never had 10+ seizures and breathing issues before in such a short amount of time.
I arrived at the hospital that I’ve been going to since Dec. 2019. I reminded them that I was diagnosed with Functional Neurological Disorder and have sound sensory issues. The ER staff didn’t seem to be familiar with the disorder (which isn’t shocking). I had a few more seizures while in the ER, which they treated me with a shot to stop them. Since I was unstable, I was admitted to be monitored for a few days.
Once I was up in my room, I saw a doctor only two times. On the first day, the Doctor expressed that “you know you have FND and this is all from that”. No tests were ordered during my visit, but I did continue to have a few more seizures during my two day stay. One nurse was very nice and willing to learn about my disorder. This past week I would bite down on my skin if it was close to my mouth, so I also shared that with him. My seizures can be very violent, so they removed my foot rest at the bottom of my bed since I was kicking it so hard. I had blue foam pads up on the both upper sides of the bed which is a seizure protocol along with my yellow fall risk gown. I did get out of bed one time, alarms went off and I walked into the hallway. I thought I heard my husband and was going to surprise him at the door, but the staff quickly reprimanded me for getting out of the bed and returned me to bed. It was not my husband that I heard! I laughed and tried to play off what seemed to be a crazy moment.
My last day there during the morning shift change I had another seizure. Now remember unlike an epileptic seizure, a non-epileptic seizure many can hear everything around them. I just can’t respond to you or stop the seizure. My night nurse (the nice one) came in after I guess he saw that I was having a seizure. Turns out, I was biting my arm and he was trying to keep me safe. Then I heard a few voices come into the room. One voice said “ leave her alone, she didn’t have a seizure all night...she’s faking”. The nice nurse stated, “she’s biting herself, I’m trying to help her. She has seizures but they don’t show up on the EEG”. The strange voice stated “ leave her, we will fill out an incident report”. My nurse then stated “what if she falls off the bed?” The voice stated “ another incident report will be filled out, everyone out!”. I continued to have the seizure and when it stopped I laid there half hanging off the foot of the bed. My knees were just touching the ground. When I finally opened my eyes, no one was in the room. I was alone. Alone and not believed that what was happening was real. I didn’t have enough strength to pull myself up right away. After a while, I pulled myself slowly up to the top of the bed.
My sheets were all over the place. My arm was bleeding from the bite. I pressed for the nurse to come. Now it’s the day time nurse, but she didn’t speak so I couldn’t compare the voices. Who made those comments? I softly asked “can I have a band aid for the bite and could you fix my sheets since I have no more strength to do so.” She just turned around and came in, tossed the band aid onto the bed and handed me my meds (still not saying a word). She fixed my sheets as well as she could with me in the bed. Then she left. Within the hour, the supervisor of that step down unit just happened to walk in and ask about my experience so far. I told her everything as I was crying. I expressed that I can hear everything during a seizure and how dare they treat me like this. Only my night nurse was trying to help and should not get into trouble. But everyone did leave me alone in a time I needed them. I told her everything that I heard. Of course she apologized and promised to talk to the team right now. From that point on, the tech and nurse were so nice to me…...but it wasn’t them who was giving the orders from earlier. I started having blurred vision in one of my eyes. I noticed covering it with my hand made a nice difference. The tech even mentioned about making a patch for me, to help out. Wow, how things have changed. I was actually getting help. A little too late though. The psychologist came in that day and I expressed my sadness about what I heard and experienced. Once the doctor came in to discharge me, she knew about the incident and expressed her worry as well. But, after these two days of just laying and having seizures I was being sent home with them saying you have FND and you must learn to deal with it via mental health, physical therapy and follow up appointments. My Neurologist also told me that she didn’t know what else she could do for me. Wow, thanks! That's so encouraging!
My physical therapy at the time was ending, but I will look into getting it again for maintenance. I did have appointments set up to see a psychologist, psychiatrist and a movement specialist who both specialize in FND. I need medical staff that believe in this disorder and not ones that think there’s only a mental component. I have a lot more fight in me and I can’t have ignorant people bring me down. I’m doing everything that is recommended for this disorder and will continue to do so until I am back to the way I was or damn close to it.
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