Point form updates since I haven't posted in awhile:
- As of today's appointment I'll be increasing the Cenobamate/Xcopri to 300mg nightly
- Clobazam is gone
- Topiramate should have been gone... got down to 0 and my brain was reacting so it's going back up to 100mg/day again. I just can't get rid of this one. Every time I try to go below 100mg, my brain reacts. As much as I don't like the side effects, this med works for me. So for now, it's staying.
- I had 8 episodes in November, and 8 in December, thanks to the decrease in Topiramate. That doesn't include the little mini-sensations-but-not-quite-enough-to-log.
- Overall, I've been feeling SO MUCH BETTER--physically, mentally, and emotionally than I was 6 months or a year ago. I think it's because I'm off of the Brivlera and Clobazam, but the epileptologist also credits the Xcopri; he believes that this med has positive effects on moods and energy. He said today that he won't be surprised if that comes out in future studies/reports because he's seen it a lot. What it means for me is just that I'm feeling better energy, better moods, more motivation. I'm happy about that.
- I've been working on increasing my physical activity. A year ago when I started working 100% at home, my step count and general activity level went down dramatically. So as of Nov 1 I have been focused on doing 10,000 steps per day (100% completion so far).
- Today I asked him about HRT, since I'm turning 48 this year. I'm not yet at the point that I feel I need HRT, but I think it's coming and I wanted to make sure that it will be ok for me, especially since my epilepsy is hormonally-connected. He said it's totally fine and I don't need to worry about it; he said that the doses in HRT are generally pretty low and shouldn't impact my meds, except for one (he said but I forget which one) If/when I do start it, we may make an adjustment. But we'll cross that bridge when we come to it.
- I've been having a rash for the past several weeks under my bra area when I run/hike/sweat, and I asked him about that because rashes are always alarming with my meds. Showed him the pics. There are no other symptoms of the Death Rash (fever, glands, etc.). He said it's not likely related to the meds, so to try hydrocortisone and/or see my GP if it doesn't go away.
- I've also had some muscle tremors/shakiness, and some weird moments where my words come out in the wrong order when I say a sentence. For example, imagine if you try to say "I painted the house blue" but it comes out "I the house painted blue". This seems to be improving as I adapt to the Xcopri, but it is weird when it happens. Doctor is not concerned.
In other news, I discovered that the BC Epilepsy Society offers some programs including a free 8 week program for improving memory. I'm going to be starting the memory program next week online. I have no idea what it entails, but I hope it will be helpful! Will report back next time. :)
