Getting Help… the first time

I took a leap of faith and moved to Colorado in 2011 for a travel nursing job in an operating room. I love working in the OR, and I was really good at it! I had been doing really well; with the exception that I never could wear the hoods in the total joint replacement surgeries. I would pass out every.single.time.

I absolutely loved spine and neuro surgery (what are the odds?!). Deep Brain Stimulators truly fascinated me; I thoroughly enjoyed the science behind the surgery and helping Parkinson’s patients. Eventually the hospital I was working at stopped doing DBS surgery (politics of hospitals recruiting surgeons) and I joined the spine team full time.

Everything was going great. I had a boyfriend that I loved (and lived with), I hadn’t felt “weird” in a couple years and I was doing great in my career.

We were in the middle of a particularly long operation and I was circulating (meaning I was the nurse responsible for the patient, the charting, and getting needed supplies for the surgeon and his team). I do not know what happened, only that I was sitting down and apparently the team had repeatedly asked me for something and I was not responding. I was taken to the emergency room. The anesthesiologist that was in the OR with me came down to check on me, and to talk with the ER physician. He said whatever he needed to say and then a neurologist was called to check on me. I went through my first of many EEGs and was scheduled to go to his office for an appointment a few days later. Thus began my temporary Hell for a several months.

This particular neurologist and I did not get along. He could not capture a seizure on the 3 in office 20 minute EEGs I did and therefore dismissed epilepsy as a diagnosis and instead told me I was having chronic migraines. I was put on so many medications. SO many. I would have a seizure in the OR, go to his office (on campus) for an EEG and it would be “not concerning” every time.  Finally, my mother pointed out that “he works for you. If you don’t like him, find someone else”. I found a neurologist that came highly recommended by several surgeons that I worked with. His office was 45 minutes from the hospital I was working at, and because I was never alone (there are always many people in an operating room) I continued working at that particular hospital. They let me sleep it off in a call room after I had a seizure and I would ride home with my then boyfriend, who also worked in that same surgery department.  This happened maybe twice in as many years.

Dr Z was the neurologist that finally got it. Luckily for me he was the third one I saw ( I know that many people go through a lot more before finding one they mesh well with), unluckily for me, after just a few months my insurance no longer allowed for me to see him due to his joining a new hospital and becoming part of a new insurance network. I cannot remember the medication he had me on, but it worked. So he wrote me for enough refills to last a year while I searched for a new neurologist.

The next Neurologist that I worked with was a woman who worked primarily with dementia patients and did not have any interest in all that I had already been through, or the fact that I was on a medication that worked for me. She didn’t like that medication and insisted on switching me to a combination of medications- Maxalt and Topamax. Also stating that I did not suffer from epilepsy but back to the theory that I had chronic migraines. I was committed to making this work- and kept taking this combination of medications despite the nearly crippling side effects. At one point I can recall trying to write a check, in the middle of writing it I forgot how to finish and ended up a crying mess.

In late 2013 my boyfriend and I broke up, and I moved to the inpatient spine floor with the promise of 3 12 hours shifts and straight days- no call. I thought it was going to be awesome, and parts of it were. I had some really amazing patients and loved my work. But I never got enough hours. I was having a hard time making rent because shifts would get canceled due to lack of patients. I decided that at least I would make the most of my time and get my bachelor’s degree online.

My mother had an intervention for me after a visit back home because I was not myself. I was exhausted from the medication side effects, tired of looking for neurologists, and just decided that the medications were worse than the occasional seizure.  I was also young and dumb. All of my seizures came after an aura, so on days that I didn’t feel quite right, I simply wouldn’t drive or go to work. This happened maybe 3 times in the following year. One night while sitting at home alone on my couch listening to music and doing my homework I had a grand Mal seizure.

I woke up on the floor in my living room, having bit the side of my cheek and my laptop lying next to me; broken. It took me a couple days to recover, but I went back to work on my normal scheduled shift. And then I had another seizure in a patient’s room. I do not need to explain to anyone that has epilepsy the pure and utter disappointment, sadness, and hopelessness that I felt. It was time to start looking for a new neurologist.

In the course of about 3 weeks I was recruited through the travel agency that I had worked with by a hospital in a different state, moved there, and began working. I tried looking for a new neurologist (but not really). I wasn’t having seizures regularly, and again felt that the side effects were far worse every single day than an “occasional” seizure. Surprisingly enough, I didn’t have seizures for almost 2 years.


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