When I started this blog, I thought I'd post more often. I do have a lot to say, but I've grown weirdly shy as my headaches dominate my life. I don't want to whine. I don't want to be a downer. The solution would be not to link each post to my FB or my twitter, just let it hang out there in space, but, perversely, I do link them. I want you to read what I write. I want you to know who I am. And if you have headaches, I hope you find my experiences informative.
Where I am now: taking 4 mg of Zanaflex every four hours, which mostly keeps the headaches under control. I'm also very recently under the care of a new doctor who specialized in cervicogenic headache and treating C1-C2. So I am nearly pain-free but seriously medicated, and I have hope for a more permanent drug-free fix in the near future. Huzzah. No exclamation point.
A few weeks ago, I read about the use of Zanaflex as a preventative, a "prophylactic." None of my doctors has ever mentioned this. The protocol is 8 mg three times a day, beginning in the morning, and the idea is to keep the headache from beginning in the first place. This was a revelation. I've been using Zanaflex as an "abortive," after the pain began, and then spent most of the day chasing after the headaches, often unsuccessfully, as I've written before. I started taking 1 mg of Zanaflex about 18 months ago and have had to increase the dose to 2 and even 4 mg as the pain warranted. The whole idea of taking medication before pain begins is foreign to me, and as a sober person, makes me think I'm "using," even though that's ridiculous. But the more I read (if I haven't mentioned it, I read about headaches a LOT, daily, obsessively), the more it seemed like the correct way to use the medication.
I knew 8 mg would just knock me into next Tuesday, so I start my day with 4 mg. I know this medication so well now, how it works in my body, its phases. It's my constant companion. For the first hour after I take it, I feel normal. Sedation starts after about 70 minutes. If I take it with food, I get sleepy much more quickly. As long as I stay active, I don't get falling-asleep tired, but I'm loopy. I can't drive a car or have any kind of higher-level conversation. This phase, remarkably, only lasts about 20 minutes.
After two hours, I get wicked dry mouth. The inside of my lower lip feels like paper. Water, endless glasses, bottles. Then I'm cool. I'm great. I feel 80 percent normal, except that the 20 percent that is missing is completely essential for teaching. That 20 percent contains my entire knowledge of grammar, literature, writing style, and the random knowledge about the world that comes up about 100 times in every class hour. This is a huge problem.
But it's summer. I don't go back to the classroom for three weeks. I'm at home almost all the time. I've learned from trial and error that 4 mg every four hours is THE regimen that works for me. (Of course every few days I screw with it, try to take less, and get a horrible headache). The Zanaflex has dried up a lot of my ambition and my need to physically move. A common side effect is asthenia, or muscle weakness. I definitely get this sometimes, and it's gross, like I'm suddenly 85 years old. Aside from walks in the woods with Buddy, I don't exercise. Intellectually, I long to be on my bike or back in my little running habit, but my body is just too leaden. I do some gardening, a lot of lying on the porch reading and watching hummingbirds. Some napping. And a fair amount of writing.
My main priority every summer is writing fiction. While I haven't done nearly as much as I'd fantasized I would, I've done a good bit. This summer's project was revising this novel I've been working on for the last eight years (wrote another book in the middle of those years). I've revised about 120 pages this summer, with some major overhauling. I'd hoped to revise the whole 300 or so pages, but oh well. I've also revised several short stories that had been lying around in various states of disarray, and that makes me very happy. And I've written two personal essays on pain, more artful and more revealing than what I write here. I may or may not post them, depending on my feelings about exposure. I might try to publish them somewhere else.
I write in short, compact bursts of intense focus. On a good day, I string together several of these and I get a good amount accomplished. This works well with my headaches and the medication roller coaster. I've been able to concentrate in the way that I need for fiction. This concentration, apparently, is very different from the focus needed for teaching. I find this all really interesting, what parts of my brain are just deadened and what parts still thrive. Zanaflex accommodates the floaty logic of narrative, it seems. I've been writing easily, with frustrating plot holes filling themselves almost effortlessly. When I write this summer, I am experiencing flow. Yes, corny, but true. My writers' group has been very positive.
I go days without seeing anyone but my husband. He's been exactly the way you hope a partner would be if you had a stupid, seemingly endless medical odyssey and felt crappy a lot of the time. He is completely kind, adjusts himself to my changing mood and energies, doesn't seem to mind that I am lazy, listens to me talk about treatments and research. Holds me when I cry (not so much in pain but in frustration). Tony and Buddy and our kittens and our cat and our bright, beautiful house and my wild, overgrown garden are keeping me afloat. I can't imagine what this would be like without them.
I hardly ever see anyone. This is the worst part. Because I'm so isolated, I feel rejected. In my darkest hours, I worry that all my friends have abandoned me forever. The truth is, right now I've abandoned them. I almost never reach out and ask anyone to do anything. I'm just too tired. Wandering around my house and yard and the woods is hard enough.
What's weird is that the times I have socialized have lasted for days: two camping trips and a weekend-log wedding where I was with people all the time. So this means other people are witnessing my Zanaflex impairment and, occasionally, my pain. I am not myself with other people. I can be myself-ish for a one-hour lunch or a walk in the woods or a swim at the pool, but I'm not myself hour after hour, day after day. If I spend a lot of time with someone, afterwards I obsess over how not-me I was, how loopy, uninteresting and self-involved. I think I've been able to focus on whoever I've been with to some degree (and this summer, they've all been people I care about a lot), but my focus withers with pain and meds.
I am SO self-involved! All I think about is pain and medication and water when I have dry mouth. It's so fucking boring. I have a few friends who ask about it and I actually like talking about it with them, but then I feel sure that I've alienated them and bored them to tears.
I've had some really nice visits with my parents this summer. When I'm with a lot of my family at the same time, I get overloaded and headaches come on much easier. But one on one for a few hours is great. My parents will come to our house and we'll go to the pool, swim and eat at the picnic tables under the trees. I can manage the Zanaflex and I don't have pain. But once they stayed into the evening to see Tony's band. I forgot to medicate on schedule and got a killer headache. Then I had to take a lot of Zanaflex and I became a zombie. I think my parents had fun anyway, but while I was with them physically, I wasn't there at all.
I am grateful for Zanaflex. It works. Without it, my headaches quickly grow to unbearable, debilitating heights where the back of my head is just a hot angry fist and it feels like I'm being stabbed in the eye, and I am stumbling until I can curl up somewhere and hold my head. I know that sounds insanely dramatic, but that's where the pain goes unless I stop it. It's taken over a year of wrestling with Zanaflex to learn how to use it as a shield against my pain. Both my spine doc and my neurologist agreed that I might be on it forever, since no other kind of intervention has worked.
But I can't live like this. No way. I'm only marginally functioning. I'm not myself. I'm dull, leaden, slothful, inert. And I still have breakthrough pain, deeply painful headaches, many times a week. This is not my life. It can't be my life.
Enter Dr. Kline, my new pain management doctor who, in two weeks, will block the top facet joint (C1- C2) of my spine by injecting it with lidocaine and asking me to monitor my pain for six hours. If I'm pain-free for those six hours, then he'll go in and burn the nerve just like my last doctor burned the four facet joint nerves below. If it doesn't work, he'll block C2-C3, which was already burned but may not have really worked. He's certain one of these will work.
Dr. Kline says at least 50% of his patient are cervicogenic headache sufferers. What?? Where the hell has he been the last three years? NO ONE who has treated me has treated many cerviconic headaches--not the chiros, the PTs, the neurologist, no one. I've never met anyone with them. Even thought I read about them a lot online, I've come to assume they are very rare.
But this doctor says he's treated thousands. As usual, the journey to find him was circuitous. My spine doc sent me back to my neurologist to see about a different med. Neurologist, agreeing that a life on Zanaflex was probably my fate, mentioned in passing that I might think about an upper spine guy. But they are hard to find, and, who knows, maybe they couldn't help me either.
I called and my spine doctor referred me to Dr. Kline, who was knowledgeable and matter-of-fact, looked over the inch-thick files the spine practice had sent him, and declared that he'd do these blocks and go from there. No need for more images, no new drugs. Just block/burn/pain free. He said that 50-60% of the cervicogenic headaches he treats come from C2/C3, and 8% come from C1/C2. He was very confident.
I had a follow-up with my (beloved) spine doc today, and everyone sang Dr. Kline's praises. He does the unusual stuff, the daring treatments. He gets results. I told my doctor that cervicogenic headaches make up more than 50% of his practice, and my doctor nodded. Yeah, there are a few guys like that. Then I asked him if he treated many of them and he said no, hardly any. I must have had my "then why the hell didn't you refer me to this guy two years ago" face on, because he then reminded me of how successful our early treatments were, and how frustrating it is for everyone in his practice to not be able to solves cases like mine.
And then he suggested I try Neurontin, a nerve pain med that no one has suggested before. It also has drowsy/dizzy side effects, so he recommended slow titration over a few weeks. The thing is, this medication takes several weeks to work, and I'm getting that nerve block . . . . Who knows? I started taking it today anyway.
So here I am: summer almost over. I have general sense that it's been mostly pleasant, but very low key. I'm glad of the camping (another trip next week in Vermont), and two amazing trips to Ithaca, and my garden, and especially my writing. I'm sad about my introversion and I hope it's not permanent. I hope I still have friends when I come out of all of this.
I'm ready for school in the lesson/assignment/syllabi sense (not changing much from last semester) but I'm terrified of the pain/med balance that will keep me from being the teacher I've always been. I hope the nerve blocks/ablation/recovery happen quickly and successfully. I hope there's some nice weather to get on my bike again before winter. I hope to feel my lively unmedicated self, my brain firing thoughts all over the place and my body never wanting to be still. I hope I have people to dinner in the yard and am able to be present. I hope and hope and hope.
