The 16th & 17th of June 2011 my husband and I were attending a business conference in Kearney, Nebraska. Friday was a long but exciting day. After the conclusion of the conference we headed back to Omaha. On our way home we stopped in Hastings to visit my step-mother. My father had passed away April 22nd the morning of Good Friday, and we wanted to see how Dorrit was doing. We had a wonderful evening and we all went out to dinner together. My friend Theresa and her family kept our daughter Emily with them overnight while we were away at the conference. That Friday, she text me and asked if Em could spend another night with them. Em was having fun and Theresa thought it would be easier on us if we didn’t have to rush back to Omaha to pick her up. We agreed to let her stay another night, which turned out to be a “God thing.”
We arrived home around 11:30pm, exhausted. We literally dropped our suitcases and laptops in the living room and went straight to bed.
At 3:10am I awoke (regained consciousness) in the back of an ambulance on the way to Lakeside Hospital. I couldn’t move and thought I was dreaming until the EMT began asking me questions. He told me I’d had a seizure and my husband had called them. He reassured me that everything was fine. I was very confused. A seizure? Me?
He asked me my name, my date of birth, my age and where I had been / what I’d been doing earlier that day? I knew my name, told him my date of birth then proceeded to give him the wrong age… I made myself a year older (you’d think being a woman I’d err on the side of making myself younger! LOL ) When it came to where I had been or what I’d been doing I was clueless. He told me not to worry, just relax and said he was going to start an IV. I remember being able to lift my left arm for him. I felt the IV needle go in, the cold IV fluids going in and then passed out again.
Once we arrived at the hospital I remember being taken out of the ambulance (vaguely). I have no memories of what the EMT’s looked like, I never saw their faces. My first clear memories are from inside the ER. After transferring to the bed I saw David, my husband, come walking towards the exam room I was in. I looked at him, threw my hands up and made a face like, “what the heck?” He smiled, relieved to see what he’d consider a typical “Cathleen” response. Then I looked expecting to see Emily by his side and was shocked (almost panicked) that she was not with him.
When I asked where Emily was he looked at me and said, “Seriously? You don’t remember?” I said no. The nurse assured him it was normal to have amnesia after a seizure. After some prodding I eventually remembered she was with my friend Theresa, but had no idea why. It took quite some time and prompting before I realized we’d been at the conference. At this point I was still unconvinced I’d had a seizure and even asked David if he was sure he didn’t dream I had a seizure and called 911? He laughed and said, “No, I didn’t dream it, you HAD a seizure. The firemen and EMT’s couldn’t even wake you up!”
Uh… firemen? Suddenly as I was becoming more aware of things and I also became quite … well… mortified. I was sleeping nude… and now I was finding out that our apartment had been full of firefighters as well as the two EMT’s all trying to awaken me. I wanted to crawl under the bed!
The ER nurse was incredible! I couldn’t have asked for a better nurse. She was supportive and caring. I would love to meet her again and give her a big ole hug and a thank you! She did her best to reassure me that the EMTs and Firefighters had “seen it all” and I had no reason to be embarrassed.
The ER doctor however, was quite the opposite. He seemed convinced that drugs or alcohol had been involved in my seizure. It wasn’t until my urinalyses and blood panel work came back that he suddenly changed his tune a bit, realizing there were no drugs or alcohol in my system. My EKG was normal and once my CT scan results came back negative, he then said what happened was not a “real seizure” because I had not (in his words) “peed or pooped during the event.”
We were sent home after being told to follow up with our general practice doctor and a neurologist.
During my time I the ER I had a wicked migraine and couldn’t wait to get home so I could take my Excedrin! Once the migraine began to subside I was completely spent. The rest of the morning and afternoon I was in bed sleeping. In the late afternoon my girlfriend brought our daughter home and checked on me. It wasn’t until I got out of bed that I realized every muscle in my body hurt, like the worst fibro flare up ever! My legs were weak and shaky and all I wanted to do was go back to bed.
First thing Monday we saw our general practice doctor. As David briefly described what happened our doctor said immediately it was a classic tonic-clonic seizure. He said it was beyond him and I needed to see a neurologist. He told us a huge number of people every year experience their first ever seizure and that half of them live the rest of their lives never having another. We all hoped that would be the case. He also shook his head when we told him what the ER doctor had told us about it not being a “real seizure.” He said not all people lose bladder or bowel control during a tonic-clonic seizure, and the ER doctor should have known that.
I never really got the full picture of my seizure until we saw the neurologist. As David described to him what happened the neuro would stop him and ask very specific questions. Let’s just say my jaw dropped more than once hearing the description and I even said, “really? I did that?” a few times too.
Apparently at the very beginning of the tonic phase I let out a cross between a scream and a moan, which is what awakened my hubby. Then he said my body went ridged and almost appeared to levitate when I stiffened. That only lasted seconds, quickly followed by total body convulsions (clonic phase) during which I was making gasping/ moaning/swallowing sounds. The entire seizure lasted less than 1 minute, but seemed like an eternity to my poor hubby.
The neuro assured us it was a tonic-clonic seizure, gave us the same seizure statistics as our family doctor, and then ordered tests and a follow up appointment. A week later I went to the hospital for a sleep deprived EEG followed by an MRI without and with contrast. The next week we went on the follow up to get the results.
Both the EEG and the MRI were negative. I had mixed feelings about this. Part of me was very happy they had not found anything terrible! Yet part of me was bothered that nothing was found that could explain the seizure.
Being the computer geeks we are, we decided that apparently my brain just needed to “reboot” and I’d probably never have another seizure.
After some brief discussion we were told I needed to be seizure free for 90 days before I could drive and I would need to have a follow up appointment in 6 months. Then the bomb dropped. The neuro looked at me and said, “If you are developing a seizure disorder the second seizure will follow within the first year.”
A year? I have to “wait and see” for an entire year before we can say it was an isolated incident? I was very surprised.
We went home. We kept the hope that this would be a one time event and I’d go on the rest of my life seizure free, but that was not to be the case.
To be continued…
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