Spazzing out!

I'm right where I'm supposed to be eleven days after the nerve ablation. I'm in a LOT of pain a little bit of the time. But I have meds that work, so I'm okay.

My regular headache is dull and grinding . This dying nerve pain is sharp and searing. It comes on very suddenly and intensifies. Fortunately, 5 mg of Percocet usually knocks it out in a half an hour. But it's gotten worse in the last few days, and several times the pain didn't go away after an hour and I had to take another pill. This afternoon, I had to take another still.

But, as I think I wrote back in April, Percocet is so preferable to Zanaflex, the muscle relaxer I've used every day for the past two years. I have been taking very little of that since the rhyzotomy, so I am less tired, less dulled, more buoyant. Even though the nerve pain is much worse than the headaches, I'm overall feeling better.

I wrote about my weird reaction to narcotics. They make me a bit hyper and chatty. I can only take the smallest amount at one time because I get super seasick and anxious if I take more. I asked my pharmacist whether there were other sorts with better side effects, and he suggested Tramadol. Well, I tried it. . .

Sat down with my husband to watch our guilty pleasure, Sons of Anarchy. I was old cold in half an hour. Later,  I woke in the middle of the night to a young man with a huge mass of curly red hair standing beside my bed, about to kill me. I screamed like a lunatic, woke Tony, woke myself (although it felt like I was awake the whole time). I've NEVER had this kind of experience. And I never want to have it again. So no more Tramadol!

So far, I'm tolerating the Percocet, even when I have to take another pill. I think spacing them out is good. My doctor also prescribed Nucynta, a newer pain med. He thinks I can double up on it if the pain gets really bad and not have the weird seasickness. And like I said, I'm just happy to be using less Zanaflex. It's really been a lifesaver in the last few years, but it's yucky. I've had moments in the last week where I've felt more like myself than I have in a long time, and more engaged with the world, and I think it's the absence of that drug.

So this might work after all. A friend asked me how that felt, the idea that I might soon be headache free. I said that I didn't quite believe it. I said I wondered if some of the ways I've changed from the headaches might be permanent. I like to keep to myself. I like quiet. I prefer to be at home. Maybe that's just who I am now, and that's fine. I get more writing done that way.

I had this one beautiful weekend earlier this year where I'd had some kind of block into my neck joints, and I was pain free and med free for about 48 hours. It was fantastic. I went to New Orleans for a friend's birthday, and I had the best time. I didn't even mind flying. I loved being around friends, and I loved being packed in crowds. I loved hearing live music. It was amazing.

That kind of elation is a tall order, but maybe that's where I am headed. It's hard to remember a time when I didn't have headaches every day, but I know I was happy. In fact, I traveled and camped cross country for five weeks right before everything started, and I remember thinking I was the happiest I'd ever been in my life--I had my husband, my dog, our tent, the open road, the gorgeous national parks, and a new novel rattling around in my head.

Since then, I wrote that novel and overhauled another. I published a handful of short stories. So this "sick time" or pain phase or whatever it's been hasn't been a total wash.

Still, I'm not into a life of pain. I know the rhyzotomy is temporary and in a year or so the nerve will regenerate and I'll have to have it again (unless the physical therapy I plan to do once I'm out of pain actually fixes the problem).

But I've changed. I've had to. I can empathize with others. The thing is, once I became open about my headaches, a ton of people opened up to me about their pain, students, colleagues, friends. I never had a clue about living with pain and was, in fact, sometimes dubious, like pain was something people "invented" because they didn't want to deal with their lives. Now I am in awe of these people and the load they carry (some much heavier than mine).

I have what I think of as a "fun" marriage. We don't have kids together, have secure incomes, a very sane mortgage. We both write and read and edit each other's work. We love to cook, and we can talk forever. We adore our animals. Much of our life is like one long good date. So this has been a bit of a test--my shitty moods when the pain is bad, my retreats into sleep, the long, long days when I have procedures and he is my ride and has to stay in the waiting room for hours. He's been amazing. He has never let me down or complained at all. I am not elegant about any of this. I'm a whiner. He is the best.

Hopefully, the next time I check in here, it'll be with good news. If not, it'll be with a new plan.

Rhyzo repeat

I still have headaches every day. My medication (Zanaflex) still helps, though lately the sedation has returned, which makes teaching a daily choice between pain and stupidity. I don't understand this at all--how can a medication you'e taken for years suddenly affect you differently? Some days it hits me like a truck. I've tried halving it, but it doesn't touch the headache. Whatever. It still works. Except for the four or five days a month when my 4 mg every four hours regimen just doesn't work, and a headache gets away from me and kind of goes crazy.  I don't understand that phenomenon either.

I'm having two nerves burned on Wednesday. = If you recall, I had this procedure done back on April--four medial branch nerves between four vertebrae allegedly shut off with radiofrequency ablation. Kind of a bear of a procedure, and a really sucky recovery, but then it just didn't work.

So new doc, new series of tests, and here we go again. I'm very nervous--that it won't work again, mostly, and that the recovery will be just as bad, and here I am in the middle of the semester.

I'm pretty annoyed that Percocet and Vicodin make me feel horrible, because they are what's on the table after a rhyzotomy, for the week or two of nerve spasm that follows until the nerves die out. I can handle 5 mg of Percocet (which helps sometimes on those days the headache is crazy, but then sometimes it does nothing). But that's not enough post-rhyzotomy. When I took 10 mg last time, my heart raced, I was dizzy and very nauseous and super anxious. I hated it. I didn't even notice whether it helped the pain because I felt so yucky.

Anyway, my pharmacist says he has the same reaction. He suggested I ask for Tramadol instead, so that's the plan. If you have any other suggestion, let me know.

It's been a decent fall, regardless. I'm very busy with school, am steadily working on a novel, get out to the woods a fair amount, have spent time with my family in Lancaster and been able to socialize a bit. It's maybe 2/3 what life was before the headaches. But there are also days that are a complete wipe out, where teaching is SO HARD because of pain, and I drag myself to my car afterward and sleep the rest of the afternoon. At least I can sleep. But we've had some gorgeous days recently, and sleeping through them just feels awful.

Anyway, I like my new doctor. He's very confident. All week I've thought of changing the appointment until after the semester ends, but Tony's convinced me I need to just do it. I'll write again on the other side. I'm really hoping it's not too bad.

looking forward

Some good news, finally.

I’m seeing a new doctor who has decided the best course of action is to redo several of the rhyzotomies (nerve ablations) that I had done in April, the idea being that those didn’t work (and they seem to have made my headache worse).

But before he can do these, he has to test block each joint to see which has the nerves causing my headaches. He puts lidocaine into the joint and I keep a headache log for six hours. And he has to block them twice to be certain (and for insurance purposes).

In August, he blocked C1-C2 (the top joint in the neck). It didn’t work. So last week he blocked C2-C3 and C3-C4, and it worked, no headache for an hour and then a very slight one for the next five. So next week he’ll do the test block again, and if it works again, we’ll schedule the rhyzotomies.

The blocks are a pain in the ass. I have to take the whole day from work (getting classes covered by really sweet colleagues), and Tony has to drive me and stay the whole time. I have to fast starting the night before. I can’t take Zanaflex,or drink water all day, so I have a killer headache when I go in. My new doctor is much-sought-after, so the waiting time is insane. This last time, I stayed at the surgery center for four hours. The shots themselves took about two minutes. The rest of the time I sat in gown and booties in a small room with the lights off (for my headache) with an IV of fluid, waiting. Bad headache. Teary. Unable to read. Then I finally went into the operating room where I got a tiny bit of IV pain meds to take the edge off (the reason for the fasting, and not at all worth it), and bam, the shots. Then I sat in recovery for half an hour and drank water and talked to the doctor. Not a day I’m eager to repeat. But I’ll do it again next week.

I miss the ease of procedures with my last doctor. This guy is highly recommended as someone who specialized in upper cervical procedures and headaches like mine, but his practice is so much more complicated. I would have been out in an hour and a half before.

At any rate, I’m moving forward. This looks promising.

The thing is, the rhyzotomy is not a fix. It’s a long-term pain management procedure, and will give me up to a year without headaches, if it works this time. That’s after the procedure itself, and the painful recovery, and the month or two it will take for the nerves to really die. And then they regenerate in nine, twelve months, and the headaches come back. And we do it all over again.

I want a real fix. So while I’ve taken meds every day and pursued various spine procedures for the last two years, I’ve also always done some kind of physical therapy. This summer it was Neurokinetic Therapy, in August it was regular PT, and right now I’m doing the MacKenzie Method with a practitioner that a colleague eagerly recommended to me. And before that, I’ve worked with three other physical therapists, three chiropractors, and a myofascial release therapist.

While none of this has worked so far, I still want something a mechanical cure, something I do to my neck, to fix the problem. If not, I will spend the rest of my life getting injections, nerve burns, taking meds, and doing whatever other new techniques pain management invents.

I don’t understand why it’s been so hard to figure out how to get rid of my headaches. So many more serious medical issues are easier to solve. But the truth is, headaches are a conundrum. Doctors are never sure exactly what is causing them, and treating them seems to be a “throw everything at the wall and see what sticks” kind of process.

I’ve joined a headache group on Facebook, and people mostly post about their latest meds and injections. It’s helpful to read about what others have tried, and also overwhelming. Most group members have had migraines for years. As far as I know, there is no cure for migraines. I feel really fortunate that mine are not migraines, and that I might be able to fix them. It’s just a matter of finding the treatment. So far, the Mackenzie Method is promising. My neurologist at Jefferson Headache recommended it last year, but it’s taken me this long to stumble on a practitioner.

It’s rare that a medical doctor would promote something a PT method for headaches. Usually, I find MDs promote meds and procedures and are not encouraging about physical therapies at all, and physical therapists believe their practice will work permanently where the medical modes are just temporary at best, and damaging to the body at worst.

But I don’t have time to mess around. These headaches have already done enough damage to my life. So I’m pursuing both. My hopes are on PT, but I’ll take the relief of injections/nerve ablations in the meantime.

Drugs and books and heroes in white coats

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.

False alarm

Nothing's working. I hate when I announce some new "solution" here only to have it backfire. Right now my headaches are worse than they've ever been.

Because I keep a detailed pain/meds journal every day, I can see that about five weeks ago, I had about fourteen days in a row with really minimal pain. They were heavenly. They coincided with a number of changes: new pillow, no Diet Coke, new PT exercises, reading from my Kindle in bed instead of the iPhone. I backslid on many of them (changed PT exercises) and the headaches returned. So one by one, I introduced each change again, but I still have headaches.

In fact, they are worse. About a week ago, I turned my head to the right and felt a searing pain go up the back of my head, in the usual headache pattern. For the rest of the day, I was in a good amount of pain, and Zanaflex wasn't really touching it. The next day, I was okay, but every day since, the pain is more and more intense, until today it's about as bad as it's ever been, on par with the nerve irritation after I had the rhyzotomies. I am taking four times my normal doze of Zanaflex, which should put me in a coma, but I am still in pain (and not sedated at all).

My spine doctor suggested I check back in with my neurologist to talk about different meds. The neurologist prescribed a time-release version of Flexeril, hoping it would have fewer side effects than Zanaflex, but it doesn't work at all. He also suggested I see someone who treats C1 C2, the top two vertebrae in the neck. My spine doctor doesn't do injections or rhyzotomies there because it's dangerous. But he gave me a referral to a pain management doctor who does, and I see him next week.

I also called my spine doctor today because the turn-my-head thing worries me, and I don't get why my headaches are so much worse right now.

I love summer. Usually my headaches are better because a) that's when I've coincidentally had successful treatments and b) I am just less stressed since I don't teach in July and August. So right now this level of pain is pretty annoying when I want to be doing all the things I love, which are outdoors. It's been okay some times-- good times at the pool, two nice camping trips at the beach, lots of hiking in the woods with my dog, and a fair amount of work on my fiction. But I want more! I wanted to be back on my bike this summer. I wanted to be finished revising this novel by the end of August (I won't be). I've had too many days like today, hard pain, lots of meds, sleep all afternoon.

I'm a bit panicked that things still aren't resolved, or at least better. I'm still seeing my physical therapist, and we started a new regimen last week (which might be why the pain is worse, come to think of it). She's asked me to get and use a home traction device, not the over-the-door kind but a professional-quality pneumatic device that costs a bundle and may or may not be partially reimbursed by my insurance. I'm nervous about using it because another PT had me use one in the office and my headache got worse almost immediately.

I also read and read and read, constantly trying new search combinations. Now it's "headaches C1 C2" and I've read about Nucca chiropractic adjustments, which only one guy in the Phila area does-- which focus on the top two vertebra.

All this reading and searching and hoping for the next possible cure is so demoralizing. I feel like some fool looking for a magic weight loss pill. But a solution has to be out there, doesn't it? Whether it's this new doctor addressing C1 and C2, or prescribing a better med, or an alternative modality that works, or something.

School starts back in a month. I'm still not better. Right now I'm worse, so much worse that I'm afraid I wouldn't be able to teach if this continues. But panic doesn't help and definitely makes it worse.

Something's working. . . but what?!

I think if a major procedure doesn't work, a sensible next strategy is to throw every possible intervention at the problem and see what sticks.  It's been almost three months since I had pain-transmitting nerves burned in my neck, and that's officially a failure. Yet I've had whole days without pain in the last two weeks, and many days where I only have one headache late in the day. What's the fix?

In the last month, I've been:

Continuing with physical therapy, specifically Neurokinetic Therapy.

Taking magnesium citrates (500 mg) for muscle spasms.

Practicing yoga at a class in the park on Thursday evenings.

Sleeping on a special pillow that keeps my neck in the right position.

Not using the ergonomically-absurd computer podium in my classroom.

Hitting my neck with capsaicin cream at the slightest spasm.

If I had to bet on the winner, I'd say it's the pillow. Maybe it's a little bit of everything, but this pillow is amazing. By nature, I am a stomach sleeper, which could not be worse for someone with neck drama. In the last few years, I've trained myself to sleep on my back, and it hasn't really helped, so I've backslid. But this pillow keeps my head in position while I'm on my back, and then if I turn on my side, it's has side panels to keep my neck straight.

I also can't say enough about capsaicin cream, and the benefit of applying it at the first twitch of pain (that's the whole key with pain management, getting in front of pain as soon as possible so you aren't chasing after it all day). Capsaicin isn't like Icy-Hot or Ben-Gay, which contain menthol to kind of distract from pain. Capsaicin actually interferes with the chemicals that allow pain transmission in the nerves. And in hot weather, it can really burn the skin, especially when sweating. But it's a good kind of pain, especially since it's blocking my headaches! I have tubes of it all over the house, in my car, my bag, etc.

Additionally, yoga is fantastic. I'm taking a vinyasa class and it's pretty tough. I don't do any inversions or anything too funky on the neck, but I do everything else, and afterward, I always feel really good. I want to build in another class or two during the week as well.

As for the PT, the exercises are so subtle that I have a hard time believing they make a difference. But maybe. My therapist also has me to "restorative breathing" exercises when I'm there. I'm going to keep going-- I like my therapist a lot, and I like having someone to check in with each week. And I'm covered for it, and it's close by, so why not?

The thing with the computer podium is insane. In recent years, I've embraced all the great stuff I can do with my composition classes using a computer podium and the overhead projector. Most "smart" classrooms have equally smartly-designed podiums, with adjustable stools etc. But in this particularly building, when I stand at the podium, the keyboard tray comes about to my fingertips, so in order to type, I have to hunch over and stick my neck out like a turtle. And I'm 5'8". I can't imagine taller colleagues even bother. Whoever designed the podiums is an idiot. In the last few weeks of summer session, I wasn't using it so much. But last Wednesday, as my students took their final exam, I decided to go ahead and grade their final papers (I use an online submission/grading program). Within a half an hour, I felt a headache coming on, so I stopped, and reached for my meds. I'd left them at home, which I NEVER do! So I did some exercises, but by the time I got out, my headache was really bad, and it was too late to really stop it. I took meds when I got home, slept, got up and was in pain for the next eight hours. This wasn't all bad, though, as it showed me how important ergonomics are, and how much posture plays a part for me. And in thinking about how I prefer to teach, I've realized that technology is super important to me-- my students' most amazing breakthroughs happen when I put anonymous samples of their drafts together in a document, project it on the screen, and we work together to make revisions as I type at the podium. I'm not going to give that up, so my employer has to step up.

I'm so thrilled to not be in pain, but equally thrilled to not take medication. In the winter, it's one thing to take a muscle relaxer and nap all afternoon, but in this beautiful weather, it's nihilistic and awful. As for Percocet, it's really just too hit or miss. Sometimes it helps for a few hours and sometimes it doesn't do anything. I liked it better than Zanaflex because it didn't make me feel crappy, but if it only works intermittently, it's a loser. I'm glad, because daily narcotic use, no matter how not-high it makes me feel, is just not good.

Last week, I got a new MRI of my neck and had a follow-up with my spine doctor. Everything is the same-- I have a particularly arthritic facet joint between C3-C4 with bone spurs. If the headaches get bad again (I'm teaching in the same building in the fall, and lobbying for a stool as a ADA accommodation), my doctor wants to do another cortisone shot there. He says they sometimes work better after a rhyzotomy fails. Or we can discuss some epidural steroids shots.

I plan to spend the rest of the summer with the pillow, the PT, more yoga, and the rest. Summers are traditionally great for me anyway. Both my first successful cortisone and Botox shots were in early summer. And I know not teaching is great for stress, much as I love my job. But I'm thinking that if I can continue with these practices and keep them in place, the fall might be okay.

When nothing works

It's been two and a half months since I had a cervical nerve ablation. . . and nothing. It didn't work. My headaches are back to the same quality and intensity as before. My doctor is holding out a very faint hope that I might need a full three months to see results, but we both know that's not going to happen.

I'm kind of stunned and kind of amused. I mean, the procedure was a BEAR. It was so painful and then the recovery, as the nerves flared up like crazy before their presumed death, was just nuts. I only went through all of that because I thought it would work!

I feel like I've been in a crazy-intense romantic relationship that had all the possibilities in the world, and then it just fizzled into nothing. So now I'm back on the market, looking for another option, sad and beaten and still hopeful.

For the last three weeks I've been seeing this married couple, chiropractors who also practice various physical therapy modes. The wife is doing neurokinetic therapy with me. "NeuroKinetic Therapy is based on the premise that when an injury has occurred, certain muscles shut down or become inhibited, forcing other muscles to become overworked. This compensation pattern can create pain or tightness. By applying light pressure that the client then resists, the practitioner can evaluate the strength or weakness of each muscle, revealing the sources of injury and retraining the client’s body to remove the compensation patterns—reprogramming the body at the neural level" (from Neurokinetic Therapy: An Innovative Approach to Manual Muscle Testing by David Weinstock).

For the first week, it was fantastic. I had several pain-free days in a row. I thought this had to be the solution.  And so simple! But then it stopped working. I've had this happen so many times. Often the first time I try something-- cortisone shots, Botox, myofascial release, kineso taping-- I enjoy fantastic success. But then it never works again. Doctors and practitioners tell me this happens sometimes, that the body initially reacts to something new and then goes back to it's old habit.

I'm going to keep seeing this couple, but I'm quickly losing hope that the new exercises or anything else they can do with me will work.

As for my spine doctor, he recently prescribed this crazy compounding pain cream, chock-full of three muscle relaxers, bupivacaine, lidocaine, clonidine, ketamine, and a half-dozen other heavy hitters. The idea is that by applying it topically, you'll get the benefits of each medication without the full-body side effects that you'd get with pills. It doesn't do jack.

I called a week after he gave it to me, a bit despairing, he suggested I get another MRI on my neck and also see a neurologist at Jefferson. I reminded him that I'd already been to Jefferson, and they sent me back to him. He was sorry to have forgotten.

So where does this leave me? Without immediate prospects, that's where. So much of this journey has been about "the next thing." When the headaches are at their worst, I lie around researching doctors/articles/practitioners, and I get really pumped when I find something promising. Right now, I have nothing. There's no reason the nerve ablation (aka rhizotomy) didn't work. As I wrote before, when my doctor sent electrical currents to the nerve endings to test them before he burned them, they lit up perfectly, recreating the pain pattern like mad. And then they were so damned angry after he burned them, the searing pain like no headache I've ever had. They were supposed to be dying. They are still alive. It doesn't make sense.

I'm trying not to get discouraged. I take medication every day and while it works somewhat, keeping the pain down so I can teach and not be too cranky, so I can be quasi-social,  it's not a solution. I'm walking around with medicine bottles in my purse, logging in every twinge of pain, timing each dose so I stay ahead of the pain. The magic trick is half a Zanaflex and half a Percocet. I don't feel side effects from that dose of either, and I'm mostly pain free for about two hours. But it's ridiculous to take medication like that every day, and it doesn't always work. Today I waited too long, and I've been screwed ever since. I came home from teaching in pain, took more Zanaflex and slept three hours.

The waiting too long to medicate thing is weird. I think, at heart, I am a ridiculous optimist. When I get the first twinges of pain, I think it won't get worse (despite nearly three years of evidence to the contrary). When I take pills at this point, I feel like a faker. I feel like I'm exaggerating. But if I take them, the tinge of pain goes away and I feel pretty much pain-free. But if I decide not to be a "faker" and ride it out, the headache gets worse and worse, until it's the only thing I can see in front of me. At that point, meds don't really work, unless I take enough Zanaflex to knock me out, which I did today when I got home.

And then there's the Percocet. It's a new addition to the repertoire since the nerve ablation. I find it enhances the pain-relieving ability of the Zanaflex and also weirdly makes it non-sedating. If you recall, at first I took half a Percocet after the procedure a few times and it worked. But when the nerves started actively "dying" (clearly they weren't, so what the hell were they doing?), I needed to take more and I couldn't handle it. It just made me feel like hell, dizzy, nauseous, the worst kind of seasick. Those were some mighty dark days. 

Now I take a half once and maybe twice a day along with the Zanaflex and it's getting me through. But now I'm a sober person who takes a narcotic every day, and while it in no way gets me remotely high, it's still weird. I'm glad I can only take this small amount and that taking more makes me feel gross. It's like build-in abuse protection. I don't want to get high. But I know that medication can be insidious, and that many sober people before me have fallen to prescription pain meds. But I also know that many sober people have taken them successfully and not relapsed. I don't think they are going to be a problem for me, but this whole deal is also a reason why I hold off on medicating when a headaches starts. It's kinda fucked.

If I ran into you on the street right now and you asked me about my headaches, I'd probably lie and say I am fine. I don't have any new treatment to tell you about. I am not looking forward to anything right now. I'd put off the nerve ablation for so long, and it loomed before me as the great big hope for so long. Now that I've done it and it's failed, like Gatsby's green light, my "count of enchanted objects had diminished by one." Very corny, I know, but the sentiment is true. 

I worry that, at this point, it seems like I'm making all this up. Like for whatever reason, my psyche has manifested this pain. I've been assured by trained professionals that this isn't true. My headaches are real. But who goes on this long without a solution? Hundreds of people on the internet, apparently. Spine and neurology message boards are filled with tales just like mine, many worse. Some have been trying to fix their headaches for decades. Their messages end in a catalog of the medications and procedures they've tried over the years, their failures. Am I one of them now?

I'm going to get my MRI and keep doing my exercises. Maybe my doctor will see something new on my scans and suggest something else. I'm going to keep taking pills, as sucky as that is. And I'm going to work in my garden and ride my bike and revise this novel and camp at the beach and cook summer vegetables and do everything else I want to do this summer. As much as I can.