I checked back into the Epilepsy Monitoring Unit on Friday, May 12. I was told to sleep deprive myself the night before and not take my Keppra that morning, both to kind of jump start my stay.
Friday night, I was sleep deprived again (up until 1), then I did strobe lights and hyperventilating (until about 1:30) before going to sleep until about 6:30am.
Saturday was a long, frustrating day of nothingness. Saturday night, they gave me a medicine to make me sleep and to lower my seizure threshold, but nothing happened.
Sunday was another long day, with sleep deprivation again that night (up until 2am).
Monday night, they gave me a higher dose of the medicine to make me sleep and to lower my seizure threshold and DING DING DING!!! I finally had a seizure!!! I have no recollection of it happening, but the nurse and EEG tech told me about it about 3 hours later. I couldn't believe it--FINALLY.
Tuesday morning when my doctor arrived, I gave him a big high five. He's been just as determined and frustrated by all of this as I have. He confirmed that it was an electrical/epileptic seizure. He told me that they don't know the cause of epilepsy in 80% of cases, but that he could look into an autoimmune connection (since I have IBD and psoriasis) and/or do another MRI to make sure my brain looks good. Beyond that, he really doesn't have other tests to perform (mind boggling to me).
Tuesday day, I had a spinal tap (aka lumbar puncture) done to test for an autoimmune connection. When I got back to my room, I had to have IV fluids to try to curb any side effects from that test. Tuesday night, they gave me Valium to really knock me out, and I slept off and on that night. I had a splitting headache when I sat up Tuesday evening, so the nurse suspected a lumbar puncture headache. She talked to my doctor, and he ordered more fluids, an IV anti-inflammatory medicine, and flat bedrest that night. So from 1-2am, I couldn't sleep because of the IV pump. Besides that, I slept fairly well and my headache was gone on Wednesday morning.
Wednesday morning, I had to go down and get an MRI and wait for those results before being discharged. Along with seeing the MRI results, my doctor let me see the video and EEG of my seizure, which was fascinating to me. It might give me nightmares, but I am really glad I got to see what I look like. As far as the MRI, all looked the same two years ago when all of these issues started. I was released around 11am and headed home to finally take a shower and move around freely without having to have assistance. Hooray.
Then the headache returned, and I felt clammy and nauseous all afternoon/evening. I did make it out to see Beautiful: The Carole King Musical with my mom, but I have a headache again today and need to take a nap right now (b/c Lenore is napping).
I will have to follow-up more often with the neurologist for the next year to make sure the medicine is keeping things under control. He switched me off the Keppra because a) I still had seizures while taking it and b) it was (scarily) messing with my memory and making me feel very foggy.
Fingers crossed that the new medicine will keep things under control. If all goes well, I will be able to drive again August 14, right in time for school to start back for Lewis.
Looking back over the past two years, I think I have had 7 seizures (that we thought were parasomnias or syncopes or other things): 3 in the 6 month period of 2015 when I was still up nursing Lenore in the night, 1 on February 4, 2 on May 3, and 1 on early May 16.
I'm glad to know that they are true epileptic seizures, but I can't believe they (scientists/researchers) don't know the cause in so many cases. There are things that can trigger seizures and lower seizure thresholds, so I guess I can do my best to follow the guidelines. But it's pretty harrowing to think that there's so much unknown.
To be continued...
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