It's been four weeks since my last episode. I'm still not counting my chickens... that will start at 6 weeks. But we're on the right track.
All the med increases have continued to make me exhausted, but that is starting to ease off. Thursday I woke up feeling better, more energetic, and happier than I have in ages.
One of the cool things about having a hyperactive temporal lobe is that periodically, even when I'm not having any episodes, I will have a flash of a random early childhood memory that I haven't thought about in decades. Yesterday I texted my mom, "who did we used to visit in Chetwynd?!" because a flash of a memory had popped into my mind and I could not place it. This memory is 30+ years old and not something I've thought about until now. These little random memories just pop up here and there, ever since this started--a place or a face or an image from when I was little. Or sometimes when I am having an episode it will also include an early memory that I can't place. It's weird and fascinating at the same time--our brains are so interesting!
My wine tolerance also seems to be improving as I adapt to the new med dosage (yay!). I still get tipsy earlier but I don't feel gross like I did when I first started the meds.
I've been hesitating to admit this part out loud: sometimes I can't find words, or don't remember details or conversations. I find myself forgetting what I talked about with people, or losing my train of thought in the middle of a sentence. I am hoping this improves as I get things under control, because it's scary. I'm focusing on taking better notes from client meetings, etc., but it's still freaky that sometimes I can't find a word. I've always prided myself on my vocabulary and language skills, and so when words disappear (even though temporarily) it scares me.
Onward.
Saturday, July 23, 2016
Sunday, July 10, 2016
Bad Combination
As of Friday, I'm up to 1000mg of Levetiracetam in the morning, and 1000mg at night. This is the result of the latest increases. The max is 3000/day, so I'm about 2/3 to the max.
The bad news is that the med makes me SO TIRED all the time. But only for a few weeks after each increase, so that should go away in a few weeks.
Meanwhile, the cannabis oil increases my appetite. No wonder I'm having a hard time with my weight. One makes me tired, and one makes me eat. Meanwhile I'm still not running due to my hip issues.
I can't sort all this out instantly but this is going to be my next goal... I think once I switch to the new CBD oil (which has way more CBD and way less THC than the one I started with), that will help the appetite problem. At the same time, the med tiredness will decrease in a few weeks. And then I need to get in for some IMS to take care of my hip issue so I can run again.
I haven't had any episodes to record since June 24, so a little over two weeks. This is good but doesn't necessarily mean anything since I've gone up to a month without anything to record (March's log is entirely blank) and then it comes back. The milestone I have in my head is 6 weeks... if I can go that long without anything significant, I will consider that success.
I was volunteering at Kneeknacker yesterday and it made me sad that I can't run and am getting fatter and losing fitness. This time last year I ran Buckin' Hell 50k and was feeling great. I know I can reverse this and that it won't happen overnight, but it's been 10 months since all this started and I'm frustrated that I can't be on the trail. So today I'm just going to go up to Quarry Rock. It's not much but better than nothing.
Onward!
The bad news is that the med makes me SO TIRED all the time. But only for a few weeks after each increase, so that should go away in a few weeks.
Meanwhile, the cannabis oil increases my appetite. No wonder I'm having a hard time with my weight. One makes me tired, and one makes me eat. Meanwhile I'm still not running due to my hip issues.
I can't sort all this out instantly but this is going to be my next goal... I think once I switch to the new CBD oil (which has way more CBD and way less THC than the one I started with), that will help the appetite problem. At the same time, the med tiredness will decrease in a few weeks. And then I need to get in for some IMS to take care of my hip issue so I can run again.
I haven't had any episodes to record since June 24, so a little over two weeks. This is good but doesn't necessarily mean anything since I've gone up to a month without anything to record (March's log is entirely blank) and then it comes back. The milestone I have in my head is 6 weeks... if I can go that long without anything significant, I will consider that success.
I was volunteering at Kneeknacker yesterday and it made me sad that I can't run and am getting fatter and losing fitness. This time last year I ran Buckin' Hell 50k and was feeling great. I know I can reverse this and that it won't happen overnight, but it's been 10 months since all this started and I'm frustrated that I can't be on the trail. So today I'm just going to go up to Quarry Rock. It's not much but better than nothing.
Onward!
Friday, July 1, 2016
"This is good news"?!
After my friends all said to keep harassing the neuro's office until I got a response, I called again on Monday and had an appointment for Thursday. Finally!
The neuro said that it's "good news" that I had the full seizures. I said, "how is it good news?!" and he said because now we know for sure what is going on, and that we're on the right track. Before this, he was just going by my descriptions of what I was experiencing and feeling; since my tests showed nothing and the doctors hadn't witnessed anything, they had no solid evidence that it really was partial seizures. Now we know.
I asked why the meds didn't prevent the progression, as I thought they were supposed to. He said my dosage was still too low. We had originally started with quite a low dose (which I knew) and were in the middle of increasing when the seizures happened. So it's going up again. I'm not yet at the max allowed dosage for my meds and since I'm tolerating them well (no bad side effects), we'll keep with it until either it works or we hit the max and have to try something else.
No driving until at least September. He said 6 months seizure-free and I protested because the ICBC website says 3 months if it's your first time having seizures. He said that technically the partials count (which means I was lucky to be driving that whole time anyway). But he also said we can re-assess in September and see how things are going. I miss my car and it does make my life more difficult, but if it does turn into 6 months it's not the end of the world.
Overall, he seems confident that we will sort it out and that it will be manageable. He said I'm going to be ok. I needed to hear that.
People keep asking how I feel, and I don't really know how to answer because it cycles so much. Some weeks I feel fine, and other weeks I don't. This week was fine, but next week will be 4 weeks from the big ones, and I tend to be in a 4 week cycle so it's possible that I will see increased activity next week. We'll see. I'm still exhausted all the time. This is partly due to med increases and partly because life is draining right now, so I'm focusing a lot on rest and self-care. Less caffeine, more naps, lavender on my pillows, that sort of thing. :)
Onward!
The neuro said that it's "good news" that I had the full seizures. I said, "how is it good news?!" and he said because now we know for sure what is going on, and that we're on the right track. Before this, he was just going by my descriptions of what I was experiencing and feeling; since my tests showed nothing and the doctors hadn't witnessed anything, they had no solid evidence that it really was partial seizures. Now we know.
I asked why the meds didn't prevent the progression, as I thought they were supposed to. He said my dosage was still too low. We had originally started with quite a low dose (which I knew) and were in the middle of increasing when the seizures happened. So it's going up again. I'm not yet at the max allowed dosage for my meds and since I'm tolerating them well (no bad side effects), we'll keep with it until either it works or we hit the max and have to try something else.
No driving until at least September. He said 6 months seizure-free and I protested because the ICBC website says 3 months if it's your first time having seizures. He said that technically the partials count (which means I was lucky to be driving that whole time anyway). But he also said we can re-assess in September and see how things are going. I miss my car and it does make my life more difficult, but if it does turn into 6 months it's not the end of the world.
Overall, he seems confident that we will sort it out and that it will be manageable. He said I'm going to be ok. I needed to hear that.
People keep asking how I feel, and I don't really know how to answer because it cycles so much. Some weeks I feel fine, and other weeks I don't. This week was fine, but next week will be 4 weeks from the big ones, and I tend to be in a 4 week cycle so it's possible that I will see increased activity next week. We'll see. I'm still exhausted all the time. This is partly due to med increases and partly because life is draining right now, so I'm focusing a lot on rest and self-care. Less caffeine, more naps, lavender on my pillows, that sort of thing. :)
Onward!
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