(Mid March 2019)
It’s finally time for me to have my week long video EEG at the hospital. I will be admitted like any patient, but have my private room that I will be watched 24 hrs a day for 5-7 days pending results. The room was a little nicer than a normal room and I was so happy to have a room to myself. But, it was pretty freaky knowing that every move I make I’m being watched. The camera on the ceiling actually moves with you around the room, it’s pretty wild.
The technicians hooked me up to the EEG machine and wrapped all the wires together into a long ponytail in the back. It reminded me of Avatar, with the hair that connects to the dragons. There was enough wire to allow me to move around the whole perimeter of the room freely. They also hooked me up to a heart monitor to allow them to see my heart rate during a seizure. I asked if I would be able to get PT during my stay and showed concern with losing a week of therapy, but I was denied those services. Although, she said I could do some exercises in the room at will. My husband brought me my cane and walker to better assist me if needed with my tremors.
The rest of day one went well without any signs of seizure activity and I slept well in my quiet roommate free room. On day two, the team came in and said each day various things will be done to me to see if they could induce a seizure if I’m not showing one on my own. Each time I felt off or as if something was about to or was happening I was to push an alert button which would put a marker next to that recording and also alert the team to come in and monitor/assist me. I have been taken off my seizure meds by this point, and still no action for the team to watch. Other then watching me doing my exercises while trying to maneuver around all the cords, that was their only entertainment from me. On day three, the tech and doctor came in and told me that they are going to induce a seizure. That shocked me a little, because I was wondering what the hell are they going to do to me. Well, they rubbed this gel like medicine to my temple and my neck and wanted me to tell them if I felt anything. At first, I didn’t so they applied more gel. Then my shoulder started twitching and I said “ I think it’s just a tremor”, but then both shoulders and head started to move. Before long my body was twitching, which was different than my past seizures so I wasn’t sure what was happening. As this was happening the doctor is stating verbally what was happening to me and the tech was taking notes. It didn’t last long before they rubbed off the medicine and my body soon came to a resting state. Now, that was a weird way to start the morning off. On either day three or four my husband and the kids came for a visit. I was fine the whole day, but shortly after they came I went to the bathroom and felt my head bobbing back and forth. I hit the button. I washed my hands and had a little trouble walking to the bed, I was unsteady. By the time, I sat on the bed the team came in and I explained how I was feeling. They left after a bit and I laid down to rest but I still felt some movement going on until all of a sudden a seizure came. I had these huge blue seizure precaution pads on both sides of me luckily to block my movements from the kids. My husband pushed the button and the team came in to monitor. After a minute or so, it stopped and I started to cry because the kids were in the room and I was fine the whole afternoon. I hate having them see me like this, but my husband promised me between the pads and him blocking they didn’t see anything. I rested the remainder of their stay. The next day, was a sleep deprivation day. I was to stay up all day and night to see if the lack of sleep would bring on a seizure…...it didn’t.
They decided to just keep me 5 days. Due to the data they collected they were able to confirm a diagnosis. Although I exhibited seizure like movements several times, my EEG did not indicate any brain wave abnormalities. The video portion is also very important with their diagnosis. How does my body arch, do I open or close my eyes, do I make sounds, can I respond to simple pointing tasks during a “seizure”. With all of this data, they confirmed my diagnosis of Functional Neurological Disorder. It’s unknown if the trauma of my first incident in Nov. 2018 and then the bad side effects of the medicine Keppra back in mid January pushed this disorder into full gear. FND is a problem with how the brain and the body send and receive signals. One way of thinking about FND is looking at it as a bit like a ‘software’ problem on a computer. The ‘hardware’ is not damaged but there is a problem with the ‘software’ and so the computer doesn’t work properly. That’s why walking, my balance, memory, word processing/retrieval, sensory input are all issues that I struggle with. Finding physicians who know FND is also a challenge since it’s not very common and can be categorized under a variety of different names, although Functional Neurological Disorder is the most current name. This is often misunderstood as just a psychological disorder which isn’t the case or a doctor has never heard of it and can dismiss you. According to the National Organization for Rare Disorders, FND is thought to occur in 14-22 cases per 100,000 people. FND is a condition at the interface between the specialties of neurology and psychiatry. There is no cure or medicine for FND, but you can show improvements in your quality of life with the help of physicians. They can prescribe you medicine to help with your motor movements and you could go through Cognitive Behavior Therapy, Dialectical Behavioral Therapy, Speech, Physical Therapy and/or Occupational Therapy just to name a few that I have now done. Even with these therapies and doctors under your belt your symptoms may decrease to 0-2 episodes a month or you can have daily symptom. You may even be one of the lucky ones that haven’t had symptoms in months. However, that doesn’t mean your FND is gone. You have learned how to take a better look at your lifestyle, mindfulness, educate yourself and enjoy this time while it lasts. FND can easily sneak up on you again months later when you think you are in the clear.
This was a diagnosis at this point that I figured they were going to tell me and I already had doctors lined up to start my recovery journey. The following week, I return back to Kessler Rehab but this time as an outpatient to work on Physical and Occupational Therapy. I’m excited that I was able to get a diagnosis so soon as others sometimes it take them years. I’m ready for this next chapter and I’m hoping to get stronger at therapy so I can return to the life I had before. Until next time!
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