24 Hour EEG/Video Monitoring

I was in the hospital for a week several weeks ago. I spent 7 days hooked up to EEG and Video monitoring at the University of Nebraska Medical Center. For those of you who have not had the pleasure of doing this, it is quite the experience. I believe I have an earlier post on the blog about my first stay at a hospital with EEG/Video monitoring, which was 10 years ago.

I have been struggling with what to write in regards to the hospital stay. In some ways I feel like I learned nothing and in other ways I feel like I left the hospital with a sense of freedom and control that I had not had in years. I say this, because while I was monitored I was taken off of my medication completely. Within a few days I was feeling so much better. In fact, I had not felt that good since my diagnosis.

In many ways I felt like I spent the week at UNMC in detox mode... cleansing myself of anticonvulsant. Many of the "things" that were happening to me completely subsided. For example, I would have tremors, jerks, spasms occasionally at night. I was used to this and have had that for years. As soon as the Lamictal was gone, so were the tremors that accompanied the drug. I had associated these tremor-like moments to small seizures, but I believe now that it was the Lamictal that may have been causing this.

Also, within about 2 days of being off of the Lamictal I felt a sense of relief, as the vise-like feeling that had been around my brain seemed to lift. The pressure and head pain was gone for the first time in years. I had not had that feeling of pure sweet relief in years. I hadn't even realized I had an "eternal" headache until I had none.

The hospital stay made me feel "okay" about not having the drug in my system. My safety net was gone, yet I was still living, breathing, and functioning fairly well! I started to notice a short-term memory issue by about day 5 and noticed that it got worse until I started back on my anticonvulsant after returning home.

The hospital stay helped me to differentiate between which "events" were seizures and which events were not events at all, but instead a possible side effect or something else perhaps, but not a clinical seizure. In fact, during my week long stay, I had no recorded seizures on the EEG... yet my EEG was abnormal most of the time.

I started to think that perhaps I had been "cured". And then started to wonder if my seizures had really been "better" these past few years but I was instead experiencing issues because of the drugs and not the seizures at all. It makes me both sad and a little sick to think that possibly I missed the opportunity when my body was ready to be drug-free and seizure-free at the same time.

With the abnormal EEG and the short-term memory exhibiting issues, I knew that the doctor was right and that I would need to be on some type of drug regardless. I was given prescriptions for Keppra and Lamictal at discharge. I left disappointed that I would be on more drugs than what I had been admitted to the hospital with a week earlier.

As my husband drove me home to Lincoln, I thought about things a lot and I just felt too "good" to have to go on the same drug that caused me the tremors and such head pain and also to add a new drug to my routine. I also felt I did not have answers as to why I was having so many issues prior to the hospitalization. Even though there were no recorded clinical seizures at UNMC, I knew that the "events" that were happening to me prior to that stay were "significant" for me. They were so significant that they caused my doctor to feel I needed to monitored. I was not able to reproduce those "events" while on the EEG machine. As much as I dreaded them, I was hoping for them to occur while being monitored so that we could figure some things out.

With all of this having been said, I will say that today, for the first time since my release I experienced something that was similar to what my seizures were like years ago. I felt that sense of doom that sometimes accompanies my auras or seizures and then I felt like I was dreaming. My left arm and hand felt numb. I could move them and touch them but it felt numb to me. But I did not feel panicked or afraid this time.

I did not take the Keppra. I did not even fill the prescription. I did not take the recommended/prescribed dose of the Lamictal either. Instead, I took the small dose that I was started on at the time of discharge. I was to work my way up to a larger dose over the next several weeks or more.

I let my new found sense of freedom and indepedence get the best of me and I have not changed my dose or added the new drug since my discharge... until today.

I left work a little early today because I was able to catch a ride with my folks so that I did not have to drive (I'm not completely stupid after all!). I took my evening dose of Lamictal tonight and added an extra 25 MG to get me closer to where the doctor wanted me to be. I will try this for awhile and see how things go.

My husband and I are expecting to travel to Ethiopia to pick up our new son in the next month or two and I want to make sure that I can make the trip safely and feel secure with how I am feeling before I take such a long flight across the world. I feel a little discouraged tonight, but tomorrow is a new day and I am hoping to find my sense of humor again.