A Seizure Relapse

Welcome back to the next Thriving not Just Surviving blog post. Unfortunately, it’s been a rough past week. At approximately 4:00 a.m. on Sunday, May 13 I experienced another gran mal seizure. This seizure was not as severe as the previous occurrences, but I was still taken to the emergency room to ensure no significant injuries occurred. Maureen and I returned to St. Louis later in the day to reconvene with my team of doctors.

The most significant injury concern was my right shoulder which was nearly healed from the previous round of seizures. Fortunately, numerous x-rays showed no further structural damage and the pain is primarily attributed to a muscle strain. I’ve been using the sling again to protect it, but I don’t expect to use the sling long term. My anti-seizure medication has been increased in hopes of preventing any further seizures. 

The big unanswered question continues to be, "What is the cause of these seizures?". We have already completed the necessary medical tests and those have revealed nothing informative. However, this additional seizure does gives us a better opportunity to look at common trends and factors surrounding each of the five seizures. Our neurologist believes that it is potentially important that four of the five seizures have occurred during sleep. As a result, we are looking to schedule a sleep study in the very near future. This will involve me spending the night at a sleep center and undergo continuous monitoring of my brain, breathing, and other vital signs throughout the night. This would look to see if something abnormal is occurring with my brain that might help us better identify a cause. There is the potential that sleep apnea could be contributing a contributing factor to the seizures.

The best piece of news from the week was that my Chest CT scan revealed the remaining tumor in my right lung was stable in size compared to previous scans dating back to October 2017. This scan was originally scheduled for the fourth week in May, but we pushed up the test since I was already in St. Louis for the seizures. There is the potential for some exciting news on the cancer front, but I’m going to hold off on discussing anything further for at least another week.

The last week has been particularly trying. I was starting to settle in to a more regular routine of daily life and it appeared that the anti-seizure medication was going to work for the long term. As discouraging as it is to “return to the drawing board” regarding the seizures, I am hoping there is a chance to identify the primary cause that would dictate a treatment plan that does not involve taking anti-seizure medication for the rest of my life.

I plan to stay in St. Louis for at least the next few weeks so that I can undergo the sleep study. We meet with the sleep specialist on Wednesday and hopefully the study gets scheduled soon after. I plan to post again next week with an update from the sleep specialist as well as discuss some exciting developments on the lung cancer front.