Pain-free is so lovely.

The latest rhyzotomies are  a failure (it’s been seven weeks--can you freaking believe they didn't work??!!). The post-burn stabbing pain nerve freak out is still happening, although in the last ten days, I think I’ve found a way to control it.

A few weeks ago, my doctor suggested I try a med called Neurontin. It’s an anti-seizure that’s also used for nerve pain. I actually had a huge bottle of it that my last doctor prescribed, but I’d never tried it because of anecdotal reports of major weight gain.

But since the rhyzotmies, I’ve been in pretty significant pain. Prednisone didn’t help, and neither did cortisone shots in my head and neck. Zanaflex wasn’t doing much, and Percocet might as well have been Sweetarts. I was so frustrated and also freaking out as I moved into the end of the semester and finals and a massive grading load.

So I finally tried Neurontin. It worked right way. I still have to take the preventative regiment of Zanaflex and Mobic (an arthritis med I’ve taken since this all started). About once a day, a big nerve pain spike breaks through and I take a Vicodin to get it down. I’m hoping as the rhyzotomied nerves settle, I won’t have to take that anymore.

The last ten days have been amazing. I’ve been more social than I’ve been in a year. I have been in a great mood. I have felt more optimistic about pretty much everything in my life, which is a testament to how shitty pain really is.

I talked to my doctor a few days ago, and he’s happy with this med combo. He still thinks the rhyzotomies might work (hilarious). He wants me to call again in a few weeks and check in. If I’m still in pain, he’ll start test-blocking more levels, and try more rhyzotomies.

Except I think I’m done with that. I just can’t handle it. I’ve done a lot of thinking and reckoning in the last few weeks, and I finally get that this is just the way things are. I’m always going to have these headaches. There is no magic fix. I have to learn to live with chronic pain. Doctors like the ones I've had are fix-it guys, not pain management guys. So I might have to find someone new.

It's actually been a relief to come to terms with this. My life is no longer on hold. I get to lift up the pause and go back to how things used to be and figure out what still works. The last week of social activity was part of that—I just can’t isolate anymore. I have to see people. I have to go to parties. I have to maintain the very awesome friendships I’ve been lucky enough to develop over the years, because they just don’t stay alive by magic.

So I think this means meds for life. This is the hardest thing to handle. Right now I take a f%^*-ton of pills—a Mobic in the morning, five Neurontin three times a day, one Zanafex every four hours, and the aforementioned narcotic when the pain jacks up in spite of this.  I have a pillbox in my purse. I sometimes have to take a pill in the middle of class (Zanaflex is a demanding mistress—if I am 15 minutes late, the pain comes on, and it’s impossible to get rid of. So I’ve taken to setting a freaking alarm on my phone so I stay on top of it).

I never thought this would be my life, but when I think about what so many other people go through, including headache sufferers who can’t even find meds that work, I’m pretty lucky. So far the meds don’t have side effects, just some cotton mouth with the Zanaflex, but that’s it. Zanaflex is interesting, because when I first started it three years ago, it just knocked me out. An hour after I took it, I’d have to take a nap. But now I rarely feel any sedation at all, and I take many times that original dose. I’ve researched these meds a lot, and that’s how Zanaflex works.

Sucky McSuck

This pain is bad. Not all the time, but at least some part of the day. It's been nearly six weeks since the rhyzotomy, and I'm in lousy shape. I'm back to my round-the-clock Zanaflex and since I've run out of Percocet, I take Vicodin several times a day. This really sucks.

I had a decent Thanksgiving weekend, although the headache was always just around the corner, and six loud and rambunctious nieces and nephews meant I was cranky Aunt Juju, not a role I enjoy playing. I was pretty good at school this morning until around noon, and then the pain just settled in and got to excruciating points several times.

I don't think the rhyzotomy is going to work. When I don't have the stabbing pain, I have my regular old headaches. I can't fucking believe this. TWICE this year I had this stupid procedure, when meant a total of twelve weeks of intense nerve inflammation, and just regular shitty headaches the rest of the time. I am so over it. I don't deserve this. I do everything I'm supposed to do in life. I know that no one with health problems deserves them, but this just feels like punishment. I am so angry.

My new doctor said that if this doesn't work, he'll test-block more medial branch nerves and keep going. I just can't see it. Each nerve block is another day I have to get covered from school, and then if any of them work, another rhyzotomy means another six weeks of hell. But what else am I supposed to do? Three solid years of trying everything under the sun has been for naught. I really feel horrible, about all of this.

I have this med called Neurontin. My spine doc prescribed it to me, and my new doc suggested it. I've hesitated because it can cause major, rapid weight gain. Officially, this only happens in 3% of those who take it. But anecdotally, in my Facebook headache group, many people say they gained a lot of weight, like 60 pounds.

I want my life back. In some ways, it feels like it's over.

I just want someone to FIX ME. I want it to be a physical therapist, where I do a ton of hard exercises and whatever bulging discs, pinched nerves, bone spurs, whatever get pushed all back in their right places and this pain goes away. But I've been to at least five physical therapists, plus a bunch of other body work people, and nothing's helped.

Sorry I'm such a bummer. Sorry I don't have success to report.

Grim

It’s been almost a month since the rhyzotomy and I’m still in severe pain from the procedure itself. In attempts to quell the nerve inflammation, I’ve taken a course of prednisone, and a week later, my doctor shot cortisone into the nerve at the back of my head. Neither helped at all. Percocet doesn’t work anymore, and Zanaflex doesn’t either. Right now, it’s just me and the pain. It’s not the headache. In fact, it makes me miss the headache. This pain is vile. It’s sharp and stabbing, and it’s located exactly where this needle hits in this picture. Then it radiates over my head to behind my eye.

The past weekend was grim. My husband worked and I was alone, trying to grade papers, icing my head, and taking pain medication that did nothing. I got very, very depressed. I felt incredibly lonely, but didn’t want to talk to anyone. Pain absolutely warps my thinking. I got a little crazy and very twisted, feeling like I caused this. I felt guilty, dirty. I thought about how people must think I’m making this up. I wished someone would call me and ask me how I’m doing, but then I didn’t want to talk to anyone. I felt like I made this up. I felt like my subconscious mind wants an out, for everything, and this pain does the trick. I felt like there is no turning back from this. I miss my life. Pain has taken over everything. I am really, really angry.

I had pretty serious depression through my teens and twenties. It was a burden I was never unaware of. It kept me apart from other people. It made me want to sleep a lot. It made me do a lot of drugs, some of which actually worked for a time. It ruled my decisions and my choices in friends, boyfriends, jobs. I became a thrill-seeker of sorts because that would bring me out of the depression, temporarily. Being depressed sucked. Everything was flat and monotone, and it got to where I couldn’t take pleasure from anything. So when I finally went on medication when I was 27, it was amazing. The loss of the burden was palpable. I felt buoyant. I felt free.

I’ve been on antidepressants for 23 years now. I do many other things to stay undepressed. I see an amazing therapist. I worked hard to find a career that would be meaningful to me. I make sure I have a decent social life and time in the woods so that my life feels balanced. Periodically I think I might not need medication anymore, so I go off it for a year or so, and then the symptoms creep back, now in the form of anxiety as I get older, and back on I go. I am very successful at staying out of depression. I am proud of that.

Except this is exactly like depression. Same ball and chain. Same isolation. Same hopelessness. Same loss of pleasure. I really resent it.

I’m in two Facebook groups for people with headaches. I’m also in an aspiring novelists’ group. Both are similar in that everyone has a specific goal and is doing whatever he or she can to achieve it. The thing is, most members of both groups are not succeeding, not the vast majority. The headache sufferers are in pain, and the novelists are unpublished. It can seem pathetic sometimes, these hundreds of people looking for the right medication or the right agent, the right physical therapy or the right small press, and never getting it.

And there’s me with my three unpublished novels and my three years of headaches. I’m just like everybody else. I keep pushing, getting treatments and sending query letters, and I keep not succeeding.

At some point I may have to accept that I’ll never publish a novel. Not publishing is the norm; publishing is rare. So is curing a headache, especially one like mine.

Today was a shitty day. For three years I’ve found a way to still be decent in the classroom (mostly by using small amounts of Zanaflex). This new pain has pushed me over a line where teaching is misery. I stand in front of the room and I feel like I have a knife sticking out of the back of my head. Today my very engaging morning class helped push it to the side a bit, but my afternoon classes are impossible because by then the pain has really kicked in for the day. I have hundreds of papers to grade before the end of the semester, and three more weeks of class. I can't even think clearly. I adore my students, and I they know a bit about what’s going on (especially since I had to get subs when I was getting the tests and the rhyzotomy). They are so sweet, but it's just awful. We're working on their toughest essays of the semester, and I need to be on my game, but I'm absolutely clawing my way through.

Then I went to a meeting after class. I’ve cut way back on meetings lately, but this was important. I sat in the back near the door. My eyes watered because the pain was searing. I stayed for the whole thing and talked a bit afterward. On the way home, I thought about what it would mean to live with this.

I have absolutely thought of suicide since this started. I won’t do it because of the people and animals that I love, but it’s there as an idea, an escape hatch. I am so angry that this is happening. I was so angry when I was depressed. I didn’t ask for this. I didn’t do anything wrong. I got Lyme disease and then I hit my head. Big fucking deal. Suddenly this giant thing was dropped in my lap and its eating all the good parts of my life.

I’m not the same teacher, not the same member of the college community, not the same friend, sibling daughter, wife. I am a drag. I have a hard time enjoying things. I just want to stay home. But if I’m not going to kill myself, I have to figure out what I am going to do.

I read this piece in the NY Times the other day, about a woman who survived a near-fatal illness and afterward failed to make the proper transformation that she thought the people in her life expected. I feel the same sense of failure toward every person who asks how I am doing, whether things are getting better. I want to have the right answer. I want to make you smile and say you are glad. That I can’t makes me feel like a failure. It makes me think you think I’m not trying hard enough. Jesus Christ, I let a doctor burn fucking nerves in my spine!!! I am definitely trying hard enough. It’s just not working.

Best, best, best case scenario, this rhyzotomy turns out to be a success and I have a year without headaches. Hurray! Then the nerves grow back and I have to do it all over again. I have to go through this bull-fucking-SHIT recovery inflamed nerve spasm crazy person can’t function pain again. What? I don’t know that I can do that. So every year I have to give a month, or even two, over to recovery pain. Over and over, year after year. What, maybe I make it my summer break project so I don’t have to suffer while I’m teaching? Awesome! Yes, who needs camping and the beach and my garden when I can lie on the couch with an ice pack and take medication that makes me seasick?!

Maybe I just have to live with the headaches. Maybe I have to accept that I am a Chronic Pain Person. Maybe I have to find a therapist who specializes in pain and can teach me how to wrap my head around it. My last physical therapist actually recommended one, but at the time I had no intention of being a chronic pain patient, so I passed. Maybe I have to figure out if isolation is really helping me, since time with my students and the breakfasts and lunches I sometimes have with friends do pull me out of it a bit. This weekend alone was a big mistake, all that time stuck in my head.

For three years I’ve been waiting for my headaches to be over so I can go back to things like my bike, the gym, having people for dinner, going to shows, galleries, etc. Maybe I just have to do those things even though I’m in pain.

Maybe I have to stop talking about it, especially with my colleagues at school. At first I wanted people to know, because I was participating so much less and was in a crappy mood a lot. But now I think it’s counterproductive. When people ask me how I’m doing and I tell them I’m not so great, I feel not only like a buzzkill but like I'm letting them down. Everyone wants a victory. Maybe I should “act as if” I’m feeling okay. Maybe talking about it just makes it worse. At this point, everybody knows about it, so maybe I leave it at that.

New meds, new perspective

So this weekmy nerves are super pissed and the pain is much worse, stabbing and intense. I can toss back pain pills like they are nothing, and they hardly work. So I called my doctor. "The pain's like a bad sunburn, right?" he asked. "The pain is like a knife stuck in the back of my head," I replied. Ah. he got it. So he prescribed Prednisone, which he says will reduce the nerve inflammation and help with the pain. I'm on day two of the taper, so I am hyper, sweaty, and in a particularly good mood. And the pain is pretty mild. I'm going to Buddakan for dinner tonight, and I'm going to chow!

The strangest thing has happened at school. In spite of all this bullshit, I'm having maybe the best semester of my career, and I feel more connected to my students than I ever have. First, I'm teaching English Composition and Research Writing, two classes where I've got a solid system and great material. So there's no stress there. Second, something's happened in the last year, and I'm not sure if it's because of chronic pain, or turning fifty, or what, but I'm finally able to relax and enjoy my students as people. I've always known how awesome they are and what incredible strife so many of them go through just to be in college. But I just really LIKE them. I like getting to know them, I like hearing what they think about the material and about the world, and I love having them come to office hours for advice that turns into a good chat.

It's as though I didn't know I was allowed to enjoy them so much, like I had to keep a wall up and be "professional." My first ten years, I wore suits and kept my hair in a bun at the base of my neck. I was terrified they'd find out I was a fraud.

Well, I'm not, and I suppose ultimately this is about teaching confidence. I'm 22 years in, and I got it. Overall, this means my job is way more fun, and while I'm super strict about attendance and deadlines, I no longer have any adversarial attitude, like I have to control it all. Ironically, my classroom is more orderly and productive than it's ever been.

My favorite thing is students who take me again for the next level of writing course. They are always people I really like, and I help them with academic advising and mentor them a bit more. I haven an especially great group of frequent fliers this semester, and I'm thinking of having them to my house for a holiday party once the semester ends. I've taken students on field trips and once took a class to an Ethiopian restaurant after we read What is the What, but I've never had students to my house. More than anything, I want them to meet each other and become friends. Most of them are really strong students, and I think they can form ties that might last beyond our school and even into the professional world. They are veterans, and single mothers, and older people coming back, and felons, and immigrants. They are superstars. When I think about the typical college student, 18, supported by parents, living in the dorm with a high school education that actually prepared them for college, my students simply blow them out of the water in how much harder they have to work and what they have to juggle. They are amazing.

Anyway, even though this nerve pain is bad, things are looking up, and I'm glad I'm able to look at my whole life and see all the good stuff.  Oh, and this week I heard from two agents who want to read my whole (first) novel! So it's good!

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.