The Beginning

By: Lindsey Norton | Posted: July 16, 2018

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My name is Lindsey, I am a 38 year old, Registered Nurse, Wife, and Mother to 2 beautiful girls and 3 four legged fur babies. On January 28, 2018, my world as I knew it came crashing to a halt when I experienced a rather odd medical issue. I started my day with washing laundry and dishes, and ended it in not 1, but 2 different hospitals. By late morning I found myself being rushed to the hospital by ambulance, and in the evening being transferred to another hospital because the first hospital did not know what was happening to me. I woke up walking and talking, but by mid morning became non-responsive. However, I could hear everything going on. I remember my husband trying to wake me and I could hear the panic in his voice as he called 911. I remember my daughter coming out of her bedroom, shutting the door, and then hear her start the shower in the bathroom. I had normal thoughts and feelings, and I was screaming in my head for help, but no one could hear me. When I did start to talk again, my speech was slow and slurred and getting words out was very difficult. I also had another problem, I could not move. I could not lift my arms, wiggle my toes or move my neck. I was paralyzed. My immediate thought was I had a stroke, but then my nursing education told me these were not typical stroke symptoms. Testing was done and nothing was leading the doctors to what the issue could be, so I was transferred to another hospital. I was taken to a neurology ICU and when I got there everything happened again. I became non-responsive, yet was able to hear everything happening around me and words spoken. This time I came out of it much quicker. By morning I was able to talk and walk again, not at 100%, but enough for them to send me home. No testing performed indicated what could have possibly happened. I was sent home, told to take some time off work, and follow up with a neurologist. When I went back to work I was only there for a few days. My employer told me I needed to take more time off as I was not able to function as I did before. I did agree, something was not right. Everything in my body felt foreign to me. My body would not work properly. My hands, arms, legs and toes would go numb and at times not work at all. My head constantly felt like it was spinning and in a constant fog, and thoughts were getting slower as the days passed. My face was numb all the time, and my speech was still slow and slurring, and at times my body would just suddenly give out on me. My brain felt like it was under attack and my normal thoughts and feelings quickly changed to second guessing and self doubt. I also started having regular episodes of paralysis. 

Over the next several months, I had seen a multitude of specialists who had no idea why this was happening to me. I saw my primary care physician regularly who directed me to see my eye doctor, which lead to an eye specialist. Then I was referred to an Ear, Nose and Throat specialist who told me I was barking up the wrong tree. Neurology lead me to more testing with no results. I finally decided I needed to be my own health advocate. After all I am a nurse and I should have some knowledge on how to navigate the system a bit. My biggest hurdle was my own brain and body, which I had to fight through daily to work at a marginal pace. Tasks that would take me an hour to get through on a normal day took me an entire day to get though now. I decided to try and start with the symptoms and go from there. It lead me to seek counsel with a new neurologist with different specialties that more closely matched my symptoms. I brought all my medical records with me to my consultation, including all of my MRI’s and CT Scans. This doctor suggested a video EEG. It took a month to get in for the test and during that time I continued to see doctor after doctor I was referred to with no results. 

Finally, the day of the video EEG came and I stayed in the hospital for almost a week with electrodes attached to my head. By the end of my hospital stay the results came back, I had something they believed to be called Psychogenic Non-Epileptic Seizures or PNES. Basically, my brain broke under the stress of day to day life and decided to give itself a break by having seizures. I never knew something like that could even happen. I never heard of this even as a nurse. I cried and laughed all at the same time. I sat in the hospital room crying that they have an answer, but laughed at how ridiculous it all sounded. I asked what I needed to do to fix it and they gave me a book about PNES and told me to order a special workbook online that I would need to work with a specialist of PNES. There is only 1 specialist who works with PNES patients in the state of Ohio. She met with me in the hospital and we discussed my plan of care going forward. She informed me she would be out for 5 weeks and I would need to wait to begin treatment, which turned out to be 3 months later. We decided a higher level of care was needed to get through the life changes I was experiencing so I was referred to a In/Out patient group also known as IOP. I started IOP by the end of the same week and I continue going to my IOP group 3 times a week.

This is just the beginning of my journey. My beginning started on January 28th and is still going. I have much more to say and share, and I will continue my story to how I ended up here. Stay tuned.  

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