Staying the Course

Welcome back to the next blog post of Thriving Not Just Surviving. Despite the holiday on  July fourth, its actually been a fairly busy week in terms of medical news. There are no new seizures to report and my shoulder is starting to feel much better. A visit with the orthopedic surgeon on Thursday confirmed that the same part of the shoulder was injured, but the fracture appears to be no worse than it was several months ago. Essentially, the shoulder has been reinjured in the exact same spot, but not nearly as extensive.

If you remember from last week’s blog post, I underwent a 24-hour EEG monitoring session in attempt to detect abnormalities in my brain waves. Many epileptic patients have abnormal brain waves even during periods in which they are not seizing. The EEG usually can detect these and aid the neurologist in diagnosing and treating epilepsy.

The results of my EEG session came back completely normal. This may seem like a good news because it means that either my brain is completely normal during periods of seizure free activity or the abnormalities are so small and deep inside the brain making them undetectable by any type of brain monitoring. However, without any information obtained from the test it makes it very difficult to pinpoint the location and cause of the seizures. This was my third normal EEG test since February and I’ve also undergone several brain MRIs in attempt to detect structural abnormalities that could be inducing the seizures. The MRIs have come back normal as well. 

What Does This Mean?

This means that my seizures/epilepsy will continue to be difficult to treat and diagnose. I am currently not a candidate for brain surgery, due to the normal MRIs. According to my neurologist, the only time in which abnormal brain waves could be detected would be during an actual seizure while hooked up to an EEG. The logical next step would be to be admitted to the Epilepsy Monitoring Unit (EMU) for 24/7 monitoring and halt all medication in order to induce a seizure. Maureen had mentioned this was a possibility in last week’s post and this was the course of action we were hoping for. However, this is not as easy as it sounds and we learned from the neurologist that this is not the best course of action at this time.

Why Not?

I’ve experienced two seizures since starting the medication over the past 5 months. However, they  have decreased in frequency and severity. So the current medication is effective to a certain degree. Obviously we are shooting to be seizure free moving forward, but its not as simple as switching or halting medications. Even though my seizures are less severe they are still violent enough to cause fractures and other complications. Typically, when an epilepsy patient halts medication in order to induce a seizure for monitoring purposes, the seizures increase in severity and frequency; many times, even worse than before the patient started medication. This can be manageable if the patient has minor/manageable seizures, but for me in turns into a life-threatening situation. We were warned that halting medication for inducing a seizure would bring significant risk for grave injury, even paralysis. 

Additionally, even if we were to induce seizures for monitoring there is a likely chance that the only course of action following the monitoring would be to adjust my medication; which we are doing already. At this point, the reward simply does not justify the risk.

What’s Next?

Just because I am not a candidate for monitoring or surgery does not mean it’s not an option in the future. In addition to increasing the dosage of my current medication (Keppra) we are adding a secondary medication at night. We may be doing another brain MRI this week. 

We are hoping and praying that maybe this is the right formula for me. Epilepsy is so hard to treat because the magic formula for seizure free life is different for everyone and not always attainable for everyone. If I continue to have seizures we will likely continue EEG monitoring and brain MRIs on an as needed basis. Its possible that in the future something may be detected that could provide more information leading to a more specific course of action.

I plan to stay in St. Louis for the next week as I adjust to my new medication. I’ve been warned to take things slower than before as the secondary medication (valium) may bring additional side effects and result in a longer adjustment period.  Hopefully I can return to Kansas City sometime in the next 1-2 weeks.