I write dark things...
Another Update 9/15: Neuro was correct, I was overmedicated. Night meds were causing night tonic-clonics, and when I dropped those I went back to sleeping less, but feeling more rested. Go figure. I’m not doing more meds, however. Instead, I’m doing mo’ yoga and working out more, in addition to finding other ways to destress. It’s working, because I’m not feeling off in the afternoons anymore. Net analysis: pills still suck and alternative treatments help when other methods fail for resistant epilepsy. And oh yeah, Me: 1, Epilepsy: 0 — because that’s how the score is always going to read.
Update: I saw my neuro about a week after I posted this. She thinks I’m overmedicated, which is profoundly hilarious. So I’m getting an EEG to test for that hypothesis. If so, she’ll drop the night med she added, and then we’ll try something else. So yes, another drugs on the horizon, most likely. *sigh* Well, keep your fingers crossed. For…something.
I still hate pills. I despise them. I am so over every single last fucking one of them.
Yeah, this is one of those blogs. Feel free to skip it. In fact I almost didn’t post it. I’m not whining. I’m not wallowing. I’m just hating.
Yesterday I had not one, but two accidents. Both my bad. I hit a parked car (honestly, how hard is that?). I rear-ended car in stop-and-go traffic. Both times I was confused, wondering, what? How the hell did that happen?
Yeah. Welcome to absence seizures. Or call them petit mals if you will. Call them the things my fucking pill cocktails are supposed to be managing.
Although I hate the pills I count them out twice daily and take them as a sacrament, knowing they are essential to my continued functioning. Knowing without them my brain would slowly destroy itself, seizure by seizure, unchecked. They’ve been working. Why they aren’t…well, I’m assuming it’s my stress level. Take the situation over my father’s health (he’s dying and at the hospice level now, I’ve been in the health advocate position) plus a pile of other stress factors I won’t enumerate here. It’s just the load factor.
I hate my dependence on the meds. I have anaphylaxis reactions to four major seizure drugs out of the top thirty or so used to treat epilepsy, and this removes entire classes of potential drugs as options. I.e. since I reacted to one, I’ll likely react to it’s sister drug, so it’s off my option list. Aren’t I special? I despise how my seizures are difficult to manage. Thus, I get more pills, a complex cocktail.
On a recent visit my neurologist proclaimed my insomnia too risky and in need of treatment. I couldn’t disagree, but I cringed. I got more pills. At least this time I didn’t spend days trying to itch my skin off, the first try worked. Total win! Surprisingly, my body not only accepted the med, but required a ridiculously high dose stop the night seizures. Again, WIN! Wait, huh?
Sadly, the joke’s on me. I’m still a borderline insomniac, but the nightly seizure-prone states are gone. Win? Even better, when I awaken in the morning I’m dizzy as hell, have slurred speech, and have the memory and vocabulary of a gnat. If you didn’t know you’d think I’d been out on a bender by how I stumble about in the morning. It takes a good twenty minutes or more for my brain to kick into gear.
Yeah sure, some of you are already senile or drink yourself silly nightly, so this doesn’t sound weird to you. Whatever. I was used to more, and this is a rant. Let me have at it.
Unfortunately the high levels of the new drug make the big drug less tolerant for me, and again all food tastes like blood or iron. And sometimes it’s like I’m chewing on blades, not that it matters, I suppose. The neuro has explained that my facial nerve gets all tweaked out on this big med, thus the all food is metal/blood reaction. I have no idea how I manage to maintain weight with this combination, but it’s darkly amusing overall. If I were a vampire then food tasting like blood would totally work out for me, but this is the really real world, and I’m not. Boo.
So yes, I’ll count out the cocktail of prescription pills and the handful of vitamins my brain needs without question. And I’ll feel like an uncoordinated imbecile every morning. Yes, just hand over the pills. Go ahead. But I’ll still rail against the bonds which tie me to these side effects. Just because it’s necessary, just because I accept it, just because I’m grateful I have a solution, I don’t have to like it.
So yeah, I hate pills. Don’t ask me to be happy about it. What I want is a cure. Not more fucking pills.
Yet I have to go back to my neuro again, and likely there will be more pills, more side effects. Imagine the look of joy upon my face at this prospect.
I’m over it. I’m headed to yoga. I did it years ago and loved it and was super mellow then. I’ve also heard good reports from other individuals with epilepsy that yoga helps them delay and/or prevent seizures altogether. Yeah, perhaps it sounds like I’m grasping at straws. Or in this case, stretched out toes. But I’m learning I can’t rely on medications and vitamins for my seizure control. Sure, they help, but they aren’t a 100% solution.
I’m tired of waiting for a solution. I’m going to make my own.
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