2 days in a row seizure free, I'm thrilled heading towards the holidays. A couple days ago my doctor called me and told me she heard about my "strange happenings," as I've been calling them, since post surgery and the RNS being turned on. Unexpected seizure activity involving some memory loss, falling asleep, and incoherence has been coming on here and there.
When my doctor called me she told me my RNS is on minimal power to start and generally they do not adjust it for at least a month. I had gotten mine turned on 3 weeks ago. She told me she wants me to get rid of all this seizure activity, especially around the holidays. She requested that I increased my Lamictal amount by 25mg each day. There seemed to have been a bit of disagreement behind the scenes of the team as some did not want to increase any medicine post surgery. My surgeon told me that my doctor is the "Drug Queen," knowledgeable about medicine like no other in the team. How could I disagree with her recommendations to solve my problem? I can get these 9 pills decreased possibly in the future once this RNS is doing the trick.
I was also told on the phone that my lead RNS doctor has agreed to let me come in before my main appointment in January if I'd like to get the frequency increased before the holidays come. My mind was a bit unsure. I've had some strange things happening, but I do not know if my RNS has had any part in creating these events. First of all- going against all previous patients' tweaks happening after a full month makes me a bit timid. This very new high technology is still under close studying, trying something new worries me some this time around. Generally speaking, I am a risk taker. Someone has got to try something new, and I don't mind if it's me. It could help me and many others in the future if it is successful. All I could think about is Christmas coming. What if something unexpected and more extreme were to distract everyone from the holiday spirit?
After that brief thought running through my head, I told my doctor, "let's try the increase in medicine and see if it reduces my seizures. If so, I'd like to hold off until my January 6th appointment to adjust the RNS. If strange things continue to occur, I'd like to hold off until after Christmas, and perhaps I can come in shortly after before my appointment if necessary." My doctor approved of my decision and we agreed to keep in touch frequently. I'm glad I stuck with my decision. This is a time for family and celebration, not a time to panic for what may happen. Stay positive, and move on. Luckily, after day 2, it has been a success.
Today was so relaxing. Not only was it day 2 of no seizures, but 3 days of no Tylenol for my endless post surgery headache. My relaxing consisted of watching football from 12 to bedtime... horrible choice staring at a tv for over 10 hours with sensitive head pain. I splurged for a couple pain killers to continue being completely lazy and continuing to stare at the tv. Destroyed my streak of days without Tylenol, but I began a new streak of being relaxed all day long. I'll take it.
(Go Packers and the boyfriend's fantasy teams... both going all the way I'm sure!)