Neuro Update

I saw my neurologist at a trail race a few weeks ago (I wasn't running but had friends who were). It's kind of fun to know that he is into running. I didn't say hi to him at the time because I didn't want to interrupt him on his day off and I wasn't sure whether he would recognize me out of context. But I mentioned it today and he said to say hi next time! He also wanted to know why I wasn't running the race myself (I said cuz it was too short ;).

Anyway, my third appointment with him today. I've been on the Levetiracetam/Keppra for three months now.

What I reported:
- the mild daily activity that I was having before is virtually gone
- the clusters of strong ones are still happening, though perhaps not as strong as before (hard to say)

As I anticipated, he suggested increasing the dosage of the Levetiracetam for a few months and see what happens. I'm ok with that since I've been on a low dose and the side effects have been manageable (except I miss my wine!). I expect to be extra tired over the next few weeks as it's increasing, since that's what happened the first time. The experiment continues!

We also talked about a few other things:

- Complex vs. Simple: I asked this because he keeps saying "Complex partial seizures" and I thought it was Simple Partial seizures. He said it's Complex because there is an alteration in consciousness. So even though I am fully aware, walking, talking, etc, when it happens, there is an altered consciousness that happens (the deja vu, looking "lost", feeling like my brain is catching up to myself, etc.). Mine is mild, but it's still complex. Good to know.

- if this medication works, and the episodes stop, I will get a diagnosis and then I stay on the med for two years (generally). After two years we re-evaluate.

- I could end up being on this med long-term (maybe forever), but that is better than leaving it untreated and risking progression.

- Early treatment like this can prevent the brain from getting into the seizure pattern, which can mean better results over the long term. When he said this it reminded me of the book I'm reading right now. It's about neuroplasticity and how our brains get good at what they practice (of course!). So if you have a lot of pain, that can become chronic pain simply because your brain practices it for awhile and gets extra-sensitive and patterned into it (the author calls chronic pain "learned pain" and says that you can untrain it). Same thing could be the case with my episodes... if we suppress them now while it's early, new, and mild, hopefully my brain doesn't become patterned to the episodes and can improve itself. That was good news and I'm curious to see how it plays out.

- Cannabis oil: Of course he can't endorse it. The effects are unknown and there isn't enough research. He said as a doctor he can't endorse it, but "what you do in your own free time is up to you". I said, "so you wouldn't hold it against me if I were to try it?" And he said definitely not. I wanted to check this with him because I think some doctors would be dead set against it and I don't want to piss off my specialist. I need him to be in my corner. He did not discourage me from trying it, but we both agreed that I shouldn't change two things at once. So I will do the increased medication for a few months and see what happens. Then later I can decide if I want to try the CBD.

Side note: As I was sitting in the waiting room, I was thinking back to how stressed I was in the beginning, and today I was just so grateful to be there, to have this quality of care, for the Canadian health care system, that overall I am still healthy and this is manageable (so far). And then I went for a run. :)

Onward.