- My EEG showed some spikes in the "anterior right temporal lobe", which we already knew because the EEG tech told me this and I told you in the previous blog post.
- My new, high-res MRI still did not show anything!!
- I asked if this means we can't do anything except medicate... does this mean I am not a surgery candidate?? I was reading recently about a cool new tech called laser ablation surgery where they just zap the bad cells from your brain and you're done. He said I could still be a surgery candidate if I really want to pursue it, but it requires a lot more testing and that testing is extensive and invasive (like staying in the hospital for a week or more, etc.). They usually only do that for serious cases that are not responsive to meds, but if I really pushed it they could look at it. I said we could leave it on the backburner for now since my meds are doing ok and I'm not in a place in my life right now where I want to put myself through that... but maybe another time.
- We are increasing the Lacosamide, at my request, since I have been doing well with it (no side effects) and I want to try to get to 100% control where I am not having any partial seizures or anything else going on. Keeping the Topiramate dosage the same. He wants me to go for an ECG in a few weeks because the increased dosage on the Lacosamide can sometimes have an impact on the heart(!).
- I asked about long term effects of both meds, including memory loss, etc. He said both are fine, as far as we know. He said that people who report memory loss or other effects with the Topiramate report it in the short term and I would have noticed it already; i.e., it's not a long-term effect so if I haven't noticed it in the past two years already, it's not going to happen. So that's good.
- Today is the 2 year anniversary since my last generalized seizure!
- Turns out that since I last filled my Lacosamide prescription, a generic version has been released in Canada. There was no generic version before (and there still isn't in the US), which meant it was massively expensive. I'm covered under Fair Pharmacare because of the type of medications and the cost of them, but going generic is still helpful for the portion that I do have to pay. The non-generic Vimpat costs around $300/month vs. $100 for the generic, and then I still have to add my Topiramate on top of it. Thankfully, Fair Pharmacare covers the bulk of it, so my actual cost now is around $66/month. Thank the gods for socialized health care!!!
When I think about where I was at two years ago... or even one year ago, I feel a lot of gratitude and hope. I'm in a vastly different and better place mentally, physically and emotionally. I look back at my blog posts and remember how exhausted and sad and hopeless I felt, and I can't describe how much better I feel now. I still have off days and weeks of course, and I don't expect that that's going to go away, but overall it's like night and day. So good. :)
