Never say chronic

It's been five weeks since the rhizotomies and I'm still experiencing the sharp nerve-dying pain. I've called narcotics a failed experiment and instead rely on my trusty Zanaflex, although now I need four times my original dose to get any effect.

It's still possible the rhizotomies will work, and I have not given up. It could take up to two months. I really need them to work. It was such a stressful procedure; it can't be for naught.

Zanaflex at this dose knocks me on my ass. So treating the pain has an apocalyptic feel-- take this pill and life is completely suspended, for at least two hours. Whatever plans I have are scrapped. I can't meet you for lunch. I can't go to the union meeting. On a sunny spring afternoon when all I want is to be out in the woods with my pup, this is really a drag.

I spent last week preparing for my own 50th birthday party, something I'd planned to do for about a year. Every time I make long-range plans, I assume I will no longer be in pain. At heart, I am on optimist. Generally, I love giving parties. I love getting my house and yard ready, buying new drapes and putting in flowers. I love days of cooking, often my most labor-intensive recipes. Before I had headaches, these days of industry were some of my happiest times, better than the actual parties themselves.

I assumed by now I would be out of pain. When I wasn't, I thought of canceling the party. But all along, I've been loathe to let pain take away too much, lest the ensuing depression just make the whole thing worse. So I decided to have the party, albeit a relatively small one (maybe 20 people). Still, I had to go all out with preparation: massive gardening and spring house cleaning, marathon cooking sessions. I was in and out of pain and Zanaflex zombiedom the whole week. I began drinking really strong coffee so I could stay awake through the sedation, and I felt like I was doing speedballs. But not in a good way. One of my best friends came in town the night before, and I loved hanging out with him. One-on-one with someone I am so comfortable with is great, and even though I was dampened by Zanaflex, we had a great time. The actual party was objectively awesome, but I felt cranky and overwhelmed and less than sharp. I hate that. The wasn't really about me turning 50, but rather a way to celebrate all the lovely people in my life, have them in my house eating my vegan soul-food feast. I wish I'd been able to be more present.

Sometimes I feel like I'm making all of this up. It's so ridiculous and unnecessary. I still don't know why I developed bone spurs in my neck. These days I'm tipping the blame toward the late-stage Lyme disease I was treated for in 2001. Lyme disease can manifest in different systems of the body and cause all kinds of bizarre havoc: neurological symptoms that cause mental confusion, heart problems. For me, it was mostly in my joints with migratory arthritis. The worst was in my neck, and before I was diagnosed, I was baffled by the pain I felt every morning, my neck almost paralyzed by pain and stiffness. I had to push myself off the pillow in elaborate contortions. I figured it was ergonomic and I bought new pillows. I adjusted parts of my bike. I saw my first chiropractor, who kept adjusting me to no effect. It was nine months before my physician sister, worried that I had MS, told me I had to see my doctor and get some tests. It turned out to be late stage Lyme, curable with massive antibiotics and about six months of serious fatigue. After that, I moved on. I never thought the Lyme had any lasting effect. But now I'm not sure. In my reading, I've discovered that if left untreated as mine was, Lyme can cause permanent joint damage. This may have led to the development of bone spurs. I'll never know for sure, but I do like having something to blame.

I'm teaching first summer session and I have awesome students. Lots of energy. I wake with a 2 headache every day, and can't take Zanaflex because because I wouldn't be able to teach. So by the middle of my second class, the pain is on front of me, a 4 or 5, and it's bad. Everything annoys me: the side conversations in the back of the room, the ladies who feel they must rustle through their handbags while I'm talking. I try very, very hard not to let my irritation show. I am the fun teacher! I am in my element! But I know it comes through; it has to. I being the class in a great mood and I end feeling embattled. I leave class palming my bottle of meds. The Zanaflex is in my mouth before I leave the building. Then it's home to happy dog, happy husband, and I say hello and goodbye as I make my way to bed.

Happy dog is a special comfort. On the worst days, he never leaves my side, my loyal attendant. I don't know how I got so lucky.

By any measure, this is chronic pain. It has been going on for thirty months now. But in my mind, I don't have chronic pain. Instead, I am on a constant quest for treatment to relieve this temporary pain, and while I've found bursts of relief, nothing has lasted yet. The truth is, even if the rhizotomies work, the nerves will grow back in about a year, and I'll have to get them again.

I don't live in the moment, because many moments kind of suck. I live in the possibility of the future. I live in the idea that there are pain-free days ahead. I've had them. I'll have them again. They have a currency I never thought possibly, the breezy luxury, the golden days.

There is some good that's come from this. First and foremost, it's shown me the wonders of my profession. When I am in pain or on medication, it's difficult, because teaching is an all-cylinders-firing pursuit. And it's pretty cool to have a job that uses the best of me that way.

It's also shifted my priorities. A few things have fallen by the wayside, particularly cycling. I used to ride a road bike pretty seriously-- maybe 100 miles a week on my own, and 75-100 miles charity rides throughout the season. The decade I rode was the most athletic I've ever been in my life. But in the last two years, I've barely ridden at all. It just isn't fun when I am hurting. It's dangerous when I'm on Zanaflex. And when my neck pain is extreme, it's nearly impossible to be in the head-forward position of a rode bike for hours at a time. I definitely miss it. I am determined to ride again this year, although I will probably never ride as  much as I used to.

I also socialize much less. I've had periods in my life where I socialized in an almost manic fashion, went out a lot, had a million friends. These days, I'm a homebody. I like to have a few people for dinner sometimes, and I go to a few parties a year. I can't deal with a fracas when I have any degree of headache. I don't go see bands. I don't go to the movies. I'm not much for loud restaurants, busy art openings. Weirdly, I prefer it this way, and that's not just because of headaches. I think I might actually be more of an introvert than I realized. I like to be alone. No social activity makes me happier than going to the woods with a friend and our dogs. I sometimes think the hyper-socializing helped me avoid something.

I've cut way back on stuff at work, committees etc. I used to be really involved. I was an assistant department head for six years. I served on tons of committees, gave presentations regularly. But these days I just can't. Most of this work happens in the afternoons, and that's when my headaches are the worst. I teach classes in the morning and there's just no way I'm sticking around afterwards if I'm in pain. I'm lucky to make our monthly department meeting. I can't commit to anything beyond that right now. If I make myself attend something, I'm either in a total crap mood or half-asleep from Zanaflex. I don't feel too awful about this because I was so involved for so long. And I know I'll be involved again, once the headaches are gone.

But I haven't been willing to do less or opt out of everything because I'm "sick," This is most true with my family. I have a big, loud, active family, and holidays get pretty chaotic. I would never stay home, so I end up with lots of headaches, on lots of medication, taking lots of naps, always pretty cranky. I wish this weren't true. I barely remember the holidays this year.

I still garden, take my dog to the woods, keep my house relatively together. I've finished a novel since this whole thing started, as well as numerous short stories. I can't stop writing or I will feel like my life has fallen apart. I don't write nearly as much as I want to/should, but I do it. When writing is going well, that lovely "flow" state I get into is somewhere beyond pain, at least for awhile. That's pretty cool.

I've learned how to conduct a medical odyssey, how to push and see specialist after specialist until I find something that works. I've learned a lot about alternative modalities. I've learned that different health care practitioners approach the body in radically different ways. I've read and read and read about my condition, in professional journals and websites and discussion boards alike.

I don't get too twisted about much right now. I don't have time to obsess over who said what to me and whether it was insulting. I don't much care that I've gained some weight. A lot of my mental space is taken up with evaluating my pain, thinking about when to take medication, anticipating the next treatment, planning a nap. I'm very well-rested.

I really don't worry that this pain is permanent. Because it can't be. I can't live with it; I really can't. It's too intense and too limiting. That may sound suicidal, but it's not. I just mean that I will keep pushing until something works. I have to live my life and I can't imagine throwing in the towel, going on disability, becoming a permanent pain patient. Right now I am managing things with the Zanaflex, losing some hours to the naps I end up taking, and while that's not at all ideal, it's bearable. I still think the rhizotomies are going to work. Any day now. And if they don't, I might end up exploring treatments like nerve decompression surgery and a spinal cord stimulation implant-- treatments that seem crazy to me now like nerve burning seemed six months ago.

Pain changes us.

It's been twenty days since the rhizotomies, and for the last week, the pain has been pretty severe. From what I read on discussion boards, this isn't uncommon. Many people report "angry" nerves for about a month, a sharp increase in pain before the nerves shrivel up and die.

As I've said, my doctor gave me Percocet for after the rhizotomy. I've been super careful, and at first, I only needed 5 mg here and there. For a few days, some carefully-spaced-out Alleve was like magic. But since last Wednesday, I've needed more medication than I can handle. The pain is in the 5-7 range, burning, searing, and it is totally in my way. Far from getting me high, the amount of Percocet I need to manage it makes me sick—super dizzy, nauseous, restless, shitty. My heart feels like it's pounding out of my chest and my ears get stuffed up. The Percocet pushes the pain down but makes me feel the worst kind seasick. I hate it. 

In the next four days, I need to grade 95 papers (some 15 pages in length), host my school’s creative writing and photography magazine release party as I’m the faculty advisor, and attend my college’s graduation which, from robing to dis-robing, is four loud, crowded hours long. The graduation I can beg out of in an emergency. But I have to grade the papers, and as I’ve written before, pain makes some levels of focus nearly impossible, and grading is pretty intense, and I have to host the release party, which won’t be as hard as happy, positive interaction with others is actually pain-relieving in a way. It’s just all the set up etc. for the event that is tough. Seriously, I haven’t got time for the pain.

My doctor called in Vicodin this morning. It’s not as strong as Percocet, but has fewer side effects. However, it’s not doing jack, and I’ve already taken as much as I’m supposed to. I just took a Zanaflex, which might put me to sleep for a while, so hopefully when I wake up I will have some good grading hours. Because 95 papers is no joke, even if they are final papers and don’t need extensive revision notes.

I have to believe this is temporary. It has to be. No one can live with pain like this. And there is no plan B after the rhyzotomy, at least not with my spine doctor. The only other treatments I’ve read about are pretty freaky: nerve decompression surgery and a spinal cord stimulator implant. Google them if you want; I can’t. The pictures made me ill. I used to wonder if at some point I would end up in “pain management,” which could mean taking narcotics on the regular. This would be a treatment of last resort to me and not how I want to live my life. But now I don't see that happening. The Percocet sickness is actually as bad as the pain, and if I react so badly to it, I can't imagine other narcotics would be better.

Yes, this is a super self-pity post. I apologize. I’m a bit frantic. So I’ll segue into the post I’d been planning in my head before this weird nerve tantrum started.

There is a silver lining to my headaches.

I've had a lot of time to think about pain on a more philosophical level, what it is, what it means. I have amended my actual definition of pain: it is whatever gets the way of living your life the way you are supposed to. It's whatever takes your focus off the real, important things going on, and forces you to obsess, ruminate, look for fixes, treatments, cures. Pain isn't just physical discomfort. It’s also grief, depression, anxiety. It’s whatever makes you say about the future, “I can do that whenever I get past xxx.”

Compared to many people, I have led a charmed life. Other than clinical depression when I was younger, I’ve experienced little in the way of true suffering. I grew up suburban, middle class in nice mostly-functional nuclear family. I never wanted for anything materially. I did well in school. I went to college. The only people in my life who died were grandparents. Outwardly, things were pretty sweet. Inwardly, I had my share of mood problems. I treated these myself with certain street drugs and later, a doctor very successfully treated me with Prozac.

I’ve also been fortunate to find the right profession. I love teaching (well, except the 95 papers). I love my students. I love the college where I work, its role in the city. I love my colleagues. I love the freedom to choose my own course material, and I love the literature I ask my students to read. I love having students come to my office to talk. I love listening to them. I love encouraging them. I love seeing them in later semesters, running into them in the hall, watching them walk at graduation.

But their lives are often complicated, much more than mine, so I have felt this invisible wall between us as I listened to them tell me about their upcoming court date or their mother’s cancer or their brother in prison. I could listen all day long; I could sympathize, but I could rarely empathize. Until now.

These headaches have been the worst thing that had ever happened to me. They have, more than anything else, by my definition of pain, been in my way. Getting rid of them has been my central obsession. Talk about self-absorbed. . . .

Except they’ve also allowed me to empathize in a way I never could. The hundred and twenty-odd students I just finished teaching this semester have so many problems, it’s a miracle many come to school at all. A house fire, a miscarriage, a seriously assaulted teenage son, legal problems, family problems, mysterious pain in the stomach, ear infection, strep throat, rotator cuff surgery, breakups, dying parents, bed rest for a pregnancy. That’s just this semester.

The two who affected me the most are a young woman with Tourette’s who jerks and seizes every waking hour of her life, and a former Marine who stepped on an IED in Afghanistan and suffered traumatic brain injury. They both finished the semester successfully, in spite of physical pain, lack of sleep, and, for her, deep embarrassment. I listened to them talk about things, and while their problems are definitely worse than mine, I felt a connection. I didn’t feel like “the caring professional” as I have for so many years. I felt like a fellow. They know a little about my stuff because I had to cancel class two different times for various procedures I had. They know I have pain. But when I listen to them talk about their pain, I listen in a whole new way. 

They have both been in pain for years now. She’s 19 and has had Tourette’s since she was 12. He was overseas a while ago. She’s pushing to see a new neurologist who, interestingly, is using an experimental brain implant. He is on new meds for a ruptured eardrum that has become infected. He hates the VA and its shitty medical treatment.

I don’t pretend that my “enlightened” views on pain are changing anything for either of them. But they both completed my class and are both taking me again in the fall. They know I will listen if they need to talk.

More than anything, relating to my students and their pain has changed me. It’s made me fully human. Incidentally, in the last two years, I have also lost more people I care about than I have ever lost ever in my life. That has also made me feel more human, less the product of a rarefied suburban biosphere.

And here’s the thing: as I wrote the first chunk of this post, I was in a lot of pain. Small wonder that writing about pain would be painful! But when I started writing about my students and took the focus off myself, I lost myself a little. Right I am not in as much pain. Now it could be that the two Alleve, one and a half Vicoden, and two Zanaflex are finally working. They are, sort of. But it’s also the way pain disburses when it’s shared among us more equally.

Now onto those 95 papers.

PS—comment, why don’t you? I’m not looking for head pats, but want to hear about your experiences, your thoughts, what’s worked for you for your own pain, what hasn’t etc. You can comment anonymously.

About pain.

First, there are different kinds of pain. What makes one pain worse than another isn’t just the severity; it’s also the context. While my headaches aren't excruciating, they are chronic.  Low-level pain day-in and day-out is exhausting and depressing. Demoralizing.

But, perhaps, the end is in sight. Twelve days ago, I had rhizotomies (burning of nerves that transmit pain signals) on four medial branch nerves in my cervical spine, where heat was applied to the nerve endings that transmit the pain signals that cause my headaches, creating lesions that will ultimately cause the nerves to die. I was told I’d be completely sedated at first when my doctor would insert the cannulas (tubes that would hold the probes). I would then be brought into a “light” consciousness during actual procedure so I could tell him where I felt sensation. In reality, I was unconscious for the beginning and wide, wide awake for the rest.

I was face down on the table, oxygenated, monitored. As each nerve was tested with an electrical  impulse, my headache flared to absolutely breathtaking intensity. I cried out; I moaned. It was excruciating. . . for a few seconds. But it was also amazing, because the pain so perfectly replicated the pattern of my headaches that I knew the procedure would ultimately work. This was good pain.

The whole thing took an hour, and then I was wheeled back to the recovery bay where I got to eat pretzels and drink Diet Coke since I'd gone without food or water since the night before. My doctor came to give me discharge papers and a prescription for Percocet, which might have been a tip-off. Nothing really hurt yet, but I knew it would. I had that dumb, post-procedure hangover feeling.

My husband, aka the driver, took me out to lunch, and as we sat in a beautiful upscale mall-chain Mexican restaurant, I realized  I was in pretty solid pain, a kind of post-operative, there-were-foreign-things-in-me kind of stunned pain. I took a quarter of a Percocet after my husband cut it in pieces with his pocket knife. After 40 minutes, I still had the same level of pain, so I took another quarter, for a total of 5 mg. Soon the pain went away.

The next day I had the same pain and there was something scary about it, some promise of worse pain in the future.  I took another 5 mg of Percocet, and the pain again went almost completely away, just a low-level hum under the skin. Then I was completely out of pain for about three days. The doctor had shot steroids and long-lasing something-cain in my facet joints, so I had a few awesome days, along with a very numb neck that I kept thinking itched, but I couldn’t feel it when I scratched, so did it really itch? I’ll never know.

Then facet injections wore off, and now I’m in the nerves-are-dying phase. This pain is really different. The back of my head and upper neck is super sensitive, tingly and burning sometimes, and I’ve had various levels of a more distinct, hard pain (think hit in the head with a baseball bat) than regular headache pain. Ice isn’t cutting it, nor is Ibuprofen or Zanaflex. I’ve take half a Percocet maybe six times in the last week. Even though this pain is more severe and has warranted narcotics, which I would never take on a regular basis (more later), it’s infinitely more bearable because I know it will pass. It can take a few weeks for the nerves to die, and apparently they do not go gently into that good night.

As an aside, I get basal cell carcinomas on my face. About seven years ago, I had one recur, so I was sent for a procedure called Mohs. Basically, you stay in the dermatologist’s office much of the day as he numbs the skin and cuts a large layer of skin around the tumor and packs the wound with dressing as they biopsy the layer in the office. If the borders still show cancer, he unpacks the wound, goes back it and takes another later. This can go on all day, until the borders are clear and you get sewn up. In my case, the tumor was about an inch under my left eye, in a thin-skinned, fleshless area, which made the Novocain shots super painful. Also, sitting there fully conscious, I could see the scalpel moving on my face, could smell the flesh burn as it was cauterized, could actually see the freaking giant hole (size of a quarter, not cool) on my face if I looked sideways, which I tried not to but of course did anyway.

The whole took about thirteen beautifully-rendered stiches (the Mohs specialist is very special doctor) and then I had black eyes for a few days and a temporarily deformed left side of my face (nose pulled over, eye drooping, obvious stitches) for some weeks. Not too much pain, but plenty of discomfort. It wasn’t an experience I was anxious to repeat.

So I was pretty unhappy when I had another spot biopsied last week (I get yearly checks) on the same side, even closer to my eye, and the sample came back positive for basal cell. Because it occurred on the old, perfectly healed, no-one-even-notices scar, I have to have the Mohs all over again. Much closer to my eye. My appointment is on May 30th and I am praying for a cancellation so I can get it over with sooner.
 

That’s another kind of pain—just the grossness of the whole thing. I KNOW I am whining—it’s not melanoma. It’s not life threatening. But the doctor won’t know how deep the tumor is until he starts cutting, and I’m afraid it will be worse this time, will fuck up my eye, the hole and scar won’t heal so perfectly. I’m afraid of the procedure. I’m afraid I’ll look at pictures on the internet the night before and get hysterical about it like I did seven years ago. Ug. Don’t want to think about it.

Back to this treatise on pain in general. . . Pain is so subjective. I read a lot of spine/neurology/pain message boards, and people talk a lot about pain. It’s interesting and confusing. Some claim they are in an 8 all day, every day. I kinda. . . am skeptical. You probably wouldn’t be sitting at the computer posting on a message board if that were the case.

I tend to be pretty conservative when I rate my pain. The worst pain I ever felt was an acute gall bladder attack about 13 years ago. It began in the morning as a feeling like indigestion (I’d had the old Silk City’s chocolate bread pudding the night before and figured that was the culprit). Later that day, I had to attend the very sad, very long Quaker funeral of a friend who had shot himself. The pain worsened, and I sat in the beautiful old meeting wishing I could focus on the Quaker-funeral spontaneous sharing about my friend instead of focusing on my pain. I felt like an asshole.

The day went on and eventually I ended up in the ER, alone, doubled over, nearly delirious. That was pain. That was my ten. I had a gallstone stuck in the bile duct, and my glass bladder had become infected and nearly septic. I had emergency surgery to remove the gall bladder a few hours later and have been fine ever since.

My headaches haven’t come close, and I tend to use that experience as a gauge. This is the “pain scale” I’ve developed for myself: My 1 headache is pain just announcing itself, very bearable. I can laugh and interact, which I do sometimes out of spite, to taunt the pain. But a headache that’s a 1 comes with a sense of doom, because I know sooner enough it will get worse.

With a 2, I have a headache, dull and constant pain. I’m never not aware of it. I can still teach and interact with people, but I’m not as buoyant. I often rub the back of my head, and I start to think about medicating it.

A 3 is full-on, and if I’m out or at work, I just want to go home. I’m very irritable and everything is hard. Now I take a Zanaflex (muscle relaxer), knowing it will take about an hour to work. Why I don’t take it when my pain is just a 2 is interesting. I have a good bit of trouble feeling okay about taking medication (more about that later). With a 3, it’s hard to grade papers, to read, to have a conversation. I can watch mellow TV, anything not terribly stimulating.

If the pain gets to a 4, I’ve let it go too long. Now the headache is in my eye, bad, and I’m pressing my palm into the socket because I find that soothing. I’m completely distracted and I can’t do anything. I want to be alone, prone.

For me, a 5 is the worst headache. I’m dizzy, stumbling. The pain is sharpest in the occipital region at the base of the skull (right side). I can’t focus on anything but the pain, and I feel despondent. I almost never let it get to this point, because I always have Zanaflex with me.

For the purposed of this post, I just looked up the “official” explanation of the pain scale. It seems I’ve been of one or two points too low in my numbers. My headaches have actually been in the 3-7 range. The gall bladder pain wasn't actually a 10-- it was a 9.

THE PAIN SCALE (healthcentral.com)

0  –  Pain free.

Mild Pain  – Nagging, annoying, but doesn't really interfere with daily living activities.

1  –  Pain is very mild, barely noticeable.  Most of the time you don't think about it.

2  –  Minor pain.  Annoying and may have occasional stronger twinges. 

3  –  Pain is noticeable and distracting, however, you can get used to it and adapt.

Moderate Pain – Interferes significantly with daily living activities.

4  –  Moderate pain.  If you are deeply involved in an activity, it can be ignored for a period of time, but is still distracting. 

5  –  Moderately strong pain.  It can't be ignored for more than a few minutes, but with effort you still can manage to work or participate in some social activities.

6  –  Moderately strong pain that interferes with normal daily activities.  Difficulty concentrating.

Severe Pain – Disabling; unable to perform daily living activities.

7  –  Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships.  Interferes with sleep.

8  –  Intense pain.  Physical activity is severely limited.  Conversing requires great effort. 

9  –  Excruciating pain.  Unable to converse.  Crying out and/or moaning uncontrollably.

10 –  Unspeakable pain.  Bedridden and possibly delirious.  Very few people will ever experience this level of pain

So about meds. I’ve been sober for 22 years. Like many sober people, I have a healthy respect for addictive medications and mood-altering medications. I took Percocet once before, the day after my gall bladder came out, and I didn't like it. I felt dizzy and restless. I took ibuprofen after that and was fine. 

Nothing helped my headaches before Zanaflex. I tried all the OTCs, as well as supplements and one migraine preventative. Zanaflex was a revelation. It takes about an hour to work, but then my headaches will disappear for about three hours. But it comes with a price, which is sometimes sleepiness and a depressed feeling and less than razor-sharp cognition, which is only actually noticeable when I’m teaching or trying to have a complex conversation. While it “alters” me, at least for the first half an hour, I am not high. I am not even happy. I'm just not in pain.

Even though my doctor prescribed it to me, I haven’t been comfortable with it, because it does make me feel a bit dulled and because it’s not a sustainable solution. But it’s also been a lifesaver. If I didn’t have it, I honestly think I might be out of work on disability. With headaches realistically in the 5-7 category, I wouldn’t be able to teach. But I still lament the months I've taken Zanaflex, come home from work and slept for hours, hard, only to wake up groggy and grade some papers, watch some TV and go back to sleep. Zanaflex, as well as the pain, has been debilitating. Every day has been a tradeoff.

So right now I don’t have the actual headaches, but I have this new, temporary post-rhizotomy pain. Ibuprofen and Zanaflex don’t work. Only Percocet does. So several times, I have taken a half a pill, 5 mg. And I go through a whole crazy torment of guilt and second-guessing each time I do. I discuss it with my husband (who would rather I didn’t, that I just take it when I need it, but I tell him so I am accountable). I wait an hour before I succumb, then sometimes another hour. I debate whether use of narcotics is only warranted if the pain is excruciating. I debate how bad it really is. I take it when the pain is super distracting, when I am too irritated to continue whatever I am doing. I take it so I can keep living my busy, active life for the next few hours.

The rub? The most addictive, dangerous, easy-to-relapse-on category of medication has zero side effects. I don’t feel tired, groggy, dulled. Neither do I feel high. I just feel mostly out of pain (which, as I’ve written before, is its own amazing high). This pisses me off. Why can’t the completely non-addictive Zanaflex be like this?

It’s hard to talk to other sober people about using pain medication. I think they are judging me; I think they think it’s a slippery slope and I am flirting with disaster. Some of the sober community has this idea that every recovering person secretly wants to abuse drugs all the time and always will want to. Well, the truth is, I don’t want to get high. I’ve found the slightly loopy feeling of Zanaflex really uncomfortable. I don’t want to feel altered. I want to feel sharp. I want to be fully awake and aware and participate in everything I love to do. That’s what’s been so sucky about the headaches, how much I’ve had to dial back the cool stuff in my life, my bike, my social life, my enjoyment of teaching.

This last week has been pretty awesome, as I’ve mostly been pain free. It helps that it’s spring, and I’ve spent hours doing hard labor in the garden, hiking in the woods. I’ve napped maybe once in ten days. The Percocet has really helped, and I know taking it is a short-term thing, just when the pain is bad, just while the nerves die. I am very, very careful with it.

I’m pretty confident the rhyzotomies will  work for a while (maybe up to a year). I’m glad I had it done. I wish I’d done it a year ago, when my doctor first suggested it, but it just sounded too bizarre then.

If you’ve read this whole post, I hope it’s either resonated with you and your own pain (I’m sorry) or made you grateful you don’t have it (yet. We will all have pain sometimes). I also hope it lets you know a bit about what chronic pain is like. We can't see another person's pain, and sometimes a person who always seems to be in pain might be. . .suspect to us. Chances are, that person isn't faking it. The pain is real. I know this blog is a bit self-centered. But for some reason I find it helpful and comforting to write about this experience, to think about it and analyze it. To know you are listening.

ETA
Five days since I wrote the above. The pain has gotten much worse, which is not uncommon from what I've read about this procedure. The cortisone has worn off and now I feel the full agitation of the nerve. I've had several days in a row where the pain stays pretty low through the work day, but by the afternoon, the burning becomes searing, up to a 6 or a 7, and makes me pretty useless. Then I really get in touch with Percocet-- and I fucking hate it. Of course this all coincides with some serous deadlines at work, which means hard focus at the computer, very painstaking, careful work. Five mg Percocet wasn't touching it, but 10 mg makes me feel so awful: dizzy, nauseous, anxious. One night I had two clear, pain-free hours to work before the nausea came on, but then I couldn't get rid of it. That night, my sleep was part-dreams and part awful hallucinations. My husband said I moaned and muttered all night.

Yesterday and today, I've just used naproxen, with one 5 mg. Percocet for a serious patch. The naproxen is pretty great. It tamps the pain down to almost nothing. I have a follow-up this Thursday, which will make three weeks. I'm really hoping those days earlier last week were the peak, and I'l be through with all this business of dying nerves and have some headache-free months ahead.

When Shock and Awe Don't Work

Both Botox  and cortisone worked the first time my doctor administered them, and then never again. The idea that the one-two punch of both types within weeks of each other would stop my headaches seemed a bit too optimistic. I was right.

Botox in the forehead is pretty painless, a quick pinch. Botox in the back of the head and neck is another story. I’m face down on a table, my chest resting on a line of small pillows to keep my neck straight. My doctor does a lot of poking and pressing into the trouble areas to locate pain and determine where he wants to shoot the drug. He marks these with a pen. With an ancient electrical impulse machine. he jolts the muscles he intends to inject. This doesn’t hurt, exactly, but the Botox needle immediately following is pretty bad. It’s not a quick stick but rather a lot of rough jabbing in each marked spot. It feels like the syringe is very full and it takes a while to empty Botox on the upper part of my right shoulder, back of my neck, and, most excruciating, the occipital nerve area of the back of my head (you can feel a tender spot on each side of your own occiput the size of a dime). I whimper when he shoots this last area.

This is my third Botox treatment. Each time I’ve been sore for a few days, but this time, the occipital area gets inflamed afterward, and instead of the normal low-level grinding pain of my headaches, I feel like I have a knife sticking out of the back of my head, a steady, sharp pain. I’m terrified that my doctor has done some permanent damage, but I call and am told to ice it for a day, which does the trick. After the soreness fades, I am left with . . . my headaches.

So ten days later, I come to the office again for the cortisone, but this time to the “surgery center” instead of the regular office, where I put on robe, booties, cap and have an IV put in my arm for fluids and later, anesthesia. Because, hell yes, I get put under for this one. 

The first time we discussed steroid shots, my doctor asked if I wanted to be awake or asleep. Ever the good patient, of course I said I'd stay awake. Dumbass. I was on my back and the nurse put a piece of paper over my face. My husband jokes that it was to hide my expression from the doctor and his attendants. Maybe it’s to hide my eyes from the apparatus. Many of you may have had cortisone shots in ankles, knees, lower back. I’m sure it hurts, but there’s something spectacularly awful about shots into the joints of the neck. And it felt like more than shots, like things went in and stayed in, moved around. The initial shots of Novocain kept it from being painful, but it was uniquely uncomfortable. And long. 

Out of curiosity, I found a video of the process. I had to stop watching after a minute. Maybe you can watch the whole thing:

Later I asked my doctor after the first what he would do if he were the patient, and he laughed and said he’d be out. So for every cortisone injection thereafter (I’ve had four total), I’ve opted for the sweet, short nap of twilight anesthesia.

This most recent time, I feel silly. It’s not real surgery. It’s a lot of fuss with the anesthesiologist, the oxygen. This time I actually start laughing when they wheel me in to the OR. Five medical personnel, machines everywhere, live x-ray—all for a few shots. But it would be the same scene even without the anesthesia. While no one’s cutting me open, these shots are invasive. 

I come to in the recovery area, and a nurse brings soda and a bag of pretzels to break my fast from the night before, and my husband comes back from the waiting room. Soon my doctor checks on me. He tells me the Novocain should keep the headache away temporarily while the cortisone gets ready to either work or not work. If the Novocain works, it tells us that the nerve ablation will work in the event that the cortisone doesn’t. 

I’ve found that psychologically, I like to know two procedures ahead. It keeps me feeling optimistic. So I ask if the cortisone doesn’t work and then the nerve ablation doesn’t work, what’s left?

“Decapitation,” my doctor deadpans.

My husband laughs. I laugh. But it’s not funny. I’m so used to failure that I am losing confidence. If the nerve ablation doesn’t work, my doctor is out of tricks.

I am headache free for the next 48 hours. In this time, I have a seven hour wait at the airport, miss a connecting flight and spend the night in Chicago, and arrive in New Orleans 23 hours after I left Philadelphia. That I am cheerful and relaxed is testament to how lovely it is to be pain-free, if just for a few days.

But soon, the headaches are back. They are pain scale 5-6, 2 mg Zanaflex pain, sometimes even 4 mg pain. They are worse than ever.

Because the Novocain did work temporarily, I am a very good candidate for the nerve ablation. But insurance companies won’t cover it without two nerve blocks. The cortisone Novocain counted as the first, and in two weeks I go in again and get the second, just Novocain, no steroids. If it works, then a few weeks after, nerves will be smoked.

Again, a video for your curiosity. I can’t watch. From what I’ve read, I’ll have to be awake for this one, although I think they administer Valium. Oh, they have to.

Cervical radiofrequency ablation

I find it both amazing and terrifying that modern medicine can do this. My doctor first suggested nerve ablation about a year ago, and the idea scared the crap out of me. The first Botox treatment was an alternative to that, and when it worked, we hoped I could just get Botox every three months and stay pain free. Alas, that wasn’t my path. Now I am ready. I really hope the nerve ablation works. We might have to do it again nine months to a year later, but my doctor says he has many patients who just go on without pain thereafter.

Zanaflex

Zanaflex, a muscle relaxer, is the only pill that has ever relieved my headaches completely. We have a love/hate. I love it, because I don’t know where I’d be without it. I get a headache at some point every day, but as soon as I feel it getting strong, I take a pill, and in an hour, I am headache free. I’m not sure why it takes so long but it does. Even while I wait for it to work and am feeling pain, I know it’s finite. The pill will work and the pain will go away. Finite pain is tolerable, no matter how hideous. I don't know what I would do without it-- medical leave of absence from work, deep depression.

I hate Zanaflex because it dulls me. I am not high, I need to be clear about that. I don’t drink or otherwise partake, and I don’t take meds like opiates that might be compelling. Zanaflex isn’t compelling. It’s sedating, dulling in degrees, but it doesn’t feel good, other than headache free. Still, it alters me, and at first, that freaked me out. I haven’t been drunk in 22 years. The first time I felt Zanaflex in my body, only half a dose, felt my mouth get dry and my thoughts slow down, I felt bizarre.

Then there’s the teaching/not teaching on Zanaflex.

I don’t feel so sedated when I take Zanaflex outside the classroom. I can take it and go out to dinner, have a conversation, and I just feel tired and a little stupid. But when I'm teaching, it's a whole other drug, which I think is a testament to how full-cylinder my brain is when I’m in front of a class. I only take it when I am in so much pain that I’d just be miserable and snarly with my students, and I only take half a dose. Tony says pain can be as disabling as medication, and I agree. When I have a headache, I’d be okay if all I did was lecture. But when students ask questions or I want to ask them questions and have a discussion, pain just grinds me down into someone who is short, impatient, and tortured.

At least the Zanaflex keeps me from being a bitch, but I am still not able to teach the way I want to. I’ve realized that good teaching means accessing the whole brain, all the files, every example, anecdote, alternative explanation. It’s the only time in my life I am 100% focused, 100% on. If I’m sedated, even a tiny bit, I can’t be that way. It’s awful. I feel this barrier between me and my students, between me and the knowledge I have about whatever I’m teaching. I feel like I am moving underwater. 

I wouldn’t truly grasp the intensity of my job if this hadn’t happened, if I hadn’t experienced teaching when I’m less fit. It’s pretty amazing. It’s one thing not to be able to make a quick joke in book club because I’ve taken a Zanaflex, but it’s another to watch the clock in the classroom, hoping no one asks another question because I won’t be able to answer to my satisfaction.

Zanaflex is temporary medication I’ve taken nearly every day for over a year. Last summer when I enjoyed Botox success, I loved looking at my untaken Zanaflex and hoped I’d never take it again. But I’m grateful that it’s there for me, and other than the dullness and some wicked dry mouth, it’s kind of miraculous. I can get three to five hours without a headache.

Alexander Technique

While I’m waiting for the nerve ablation, I’m trying one more “alternative” treatment. All I really know about Alexander Technique after one lesson is that it’s about restoring a natural relationship between the head, neck and back, and that it’s expensive. While my headaches are structural, I know there’s something about posture, the way I hold tension in my neck that contributes. And there’s the no-stone-unturned superstition. So I’m going to take lessons once a week and see.

I have to say, though, that when I told my teacher about the treatments I’ve had and the upcoming nerve ablation, she winced in that familiar alternative healer way. I don’t like how alternative medicine often scoffs at western medicine.  So far I’ve had zero success with alternative modalities. My only pain relief has been with injections and medication. I get defensive, like the scoffer thinks the pain is a minor annoyance. I wish accupuncture/massage/chiro/PT/yoga/myofascial release/cranial sacral therapy and whatever else I’ve done worked. I don’t enjoy needles in my neck. I don’t enjoy taking a pill three times a day. But there it is. 

I don’t think Alexander Technique will fix me, but I do think I can learn some things about how I hold tension in my body that might enhance whatever I am doing medically.

The Deal

I am not a pain person. A bottle of ibuprofen will last me over a year. I don't get headaches, stomachaches, sore throats, colds, fevers, none of it. I am so healthy that on the rare occasion I don't feel well, I am a horrible whiner.

However.

For the last two years, I've had headaches every day. These are cervicogenic headaches, which means the trouble starts in my neck, specifically arthritis-related bone spurs pressing on nerves, which creates a dance of muscle spasm and nerve inflamation that gives me near-constant pain at the back of my skull, radiating over my head to behind my right eye.

I've thought a lot about the quality of the pain. It's dull and grinding, like someone is slowly running a sander over the back of my skull. I've never felt this kind of pain before. It gets sharper in the neck vertebrae and sometimes my right shoulder muscles ball up. It varies in intensity, but it hurts enough most of the time to get in my way. I've felt intense pain before-- I had an acute gall bladder attack and then emergency surgery ten years ago. That was crazy, pull-your-hair-out, rolled-up-on-the-floor-of-the-ER pain. This is low-level pain, anywhere from a 1 to a 6 on the pain scale, but low-level pain, day in and day out, is a bear. It's diminishing, humiliating. It's not severe enough to keep me from going to work, but just grim, stupid pain that keeps me from being myself and makes everything a chore.

I never in a million years thought I'd be a chronic pain person. Only recently have I thought of all this as chronic, because I've always felt the fix was right around the corner. But I do have chronic pain, and it's made my life shrink to a tiny world of work, home life and sleep, more sleep than I could ever imagine.

Mornings are okay, so I'm glad to have early classes on the days I teach. But as the day progresses and the ten-pound bowling ball that is my head bears down on my neck, the right back side of my head starts to flare and the pain progresses. By the time I finish my last class, or by around 2 pm, the headache is full-blown. And so begins my daily dilemma:

Do you want to be cranky, or do you want to be dull?

Pain sucks. I don't want to be around people. I don't want to be upright. But if I have to go out and about when I have a headache, I am cranky, irritable, short-tempered, impatient and generally in no mood. The saying "doesn't suffer fools gladly?" Me with a headache.

I am not inclined to have a conversation, participate in a committee, go to the movies, sit through a meeting, exercise, go to a party, go to a show, go out to dinner. . . you get the picture.

My life has gotten really small. The only thing I ever feel like doing, besides inert, isolated things like laptop and cable, is taking my dog to the woods. He needs it, and  the cortisol boost of green definitely helps. But otherwise, I just want to come home, be very quiet, have the lights low and be still.

Unless

I'm willing to be dull. Then I take a Zanaflex, the only medication that has ever done jack for my headaches. It's a short-acting muscle relaxer that can give me a pain-free couple of hours if I'm willing to be super sleepy for 20 minutes followed by several hours where I am just less-than-sharp. I can't teach on Zanaflex. I can't quite keep up with my quick-witted writers' group, or my super smart book club, or my card-playing family or any complex committee or unit meeting at work. I love the absence of pain, but I hate feeling slow.

Still, I take Zanaflex every day at some point. I feel like a failure if I take it early, and like something of a success if I don't take it until evening. In truth, exactly when the pain hits is entirely out of my control, but  I still judge myself.

School days are like this: no pain in the morning, minimal pain during class (I think there's something about the energy teaching requires that pushes pain to the side). If I do have a headache while in class, everything is about 10x harder, harder to focus, harder to be clear, harder to be patient. Usually, though, I make it to office hours and that's where the pain begins. I have low-lit lamps in my office instead of overhead lighting, and I play white noise on my computer to drown out hallway noise. My headaches definitely have a light/sound/smell trigger component.

I try to smile and be cheerful in the halls, no matter how crappy I feel. My closer friends at school often ask about my headaches and sometimes I lie, because it is so goddamn boring to talk about headaches. I socialize so little that I'm afraid I'm losing friends anyway, and I don't want to be a broken record.

But by the time I finish up at school, the headache is in full bloom. I take a Zanaflex before I leave, because it'll take about an hour to work. All I want to do in the world is go to sleep. By the time I'm home and the Zanaflex has kicked in, I hit the bed and the bliss of a dark room, heavy blankets, and animals curled against me. I sleep a hard two hours, and when I wake up, I am headache-free, but I'm groggy. I make dinner, hang out with my husband, grade some papers. The Zanaflex wears off in about four hours and sometimes the headache comes back worse, so I usually take another, do whatever else I have to do, and all the while my head feels wrapped in cotton. And I then sleep again.

Between pain and Zanaflex and naps, a good chunk of every day is compromised. So even though I don't do a lot activity-wise, I feel very busy and overwhelmed.

Oh, I also see a lot of doctors.

The Medical Practitioners

I started getting headaches in November of 2012. I thought I had a sinus infection, so I saw my regular doctor. I was seeing my chiropractor for neck pain at the same time, but I never thought they were related. I then saw, sometimes several times each: an allergist, a holistic doctor, a gynecologist, a neurologist, an orthopedist, a cranial sacral DO, a spine doctor, doctors at a world-renowned headache clinic, and now I'm back to my spine doctor, who I've seen more than any doctor I've ever seen in my life.

The Tests

I've had CT scan of head and sinus, MRI of head, x-ray of neck, and, at the urging of one of my physical therapists, MRI of neck, with showed the aforementioned arthritis, narrowing of spinal column and bone spurs (osteophytes-- I love that word).

But have you tried. . .

Why, yes, I've seen three different chiropractors, an acupuncurist, a myfascial release specialist, three different physical therapists, and a biofeedback specialist. I've tried yoga, massage, home exercises, creams, gels, magnesium, chromium picolinate, and vegan omega three. I've taken ibuprofen, naproxen, acetaminophen, Prednisone, antibiotics, hormones, Fioricet, arthritis meds and, the absolute worst, Topimax, aka Dopimax or Stupimax, a migrane preventive whose major side effect is-- wait for it-- difficulty with concentration and attention. None of this has helped at all, but I have this weird superstition that if I don't try absolutely everything, I will never get better.

I've also tried every kind of dietary change: no caffeine, no sugar, no flour, no processed food. I became vegan two years ago, not related, but neither that nor any other change has made a difference with my headaches.

Ben Gay is great and capcasin cream too. I think they distract from pain, at least for a little while. My favorite thing is my herb-and-flax filled microwavable neck pillow. It doesn't fix the headache, but it just makes me feel better if I lie on the couch with it resting under my head.

The aforementioned Zanaflex works, but it's not a sustainable solution.

What does all this cost?

In spite of the fact that I have the best health coverage in the state of Pennsylvania, I have spent more than six grand in out-of-pocket costs-- copays, tests, meds, and many, many sessions of alternative therapies. You get in this mindset where you will do almost anything, pay almost anything.

What has helped?

Enter my favorite doctor of all, Dr. Lerman, my spine doctor. My primary care doc referred me to him to interpret the MRI of my neck. He diagnosed me with cervicogenic headaches, and showed me the bones spurs on my MRI, extra little scallops of bone at the end of several of my neck vertebra. Using a spine model, he showed me the facet joints from which nerves emerge and travel up to the head and down the body, and how the bones spurs press into the facet joints and irritate the nerves. He told me the situation had been building in my neck for a long time (possibly originally caused by a very nasty case of Lyme disease I had years ago that manifested as temporary arthritis in my neck). The pain may have been triggered finally, maybe, by the fact that I walked into a steel beam a month before the headaches began ( it was one of those cartoon-character, BOING!, see-birdies type of thing). It's possible that shifted everything around so the bone spurs began impeding in earnest.

Dr. Lerman treated me successfully twice. In the summer of 2012, he shot cortisone into the facet joints to reduce the inflammation the bones spurs caused, which gave me almost five months of complete pain relief. So when the shots wore off, he did them again. This time, they didn't work. So he did them again. They didn't work again.

So he switched to Botox. One of the neurologists I'd seen earlier told me that Botox shots all over the head were THE treatment for headaches. I thought he was insane. No way in hell was I getting Botox in my head. Until I was getting Botox in my head.

And this brings up another chronic pain phenomenon-- the ever-lowering bar. When all this began, I was pretty sure I'd find a quick fix somewhere, preferably not meds, preferable something like chiropractic or physical therapy that would put things in their right place. When those modes didn't work, I was eager to find the right med, something non-narcotic, with minimal side effects, that would take away the pain. When I realized that I didn't want to take Zanaflex for the rest of my life, other things started to sound good.

My spine doc put Botox in my neck and right shoulder, and I was completely pain-free for three months. Being pain-free when you've had months of pain is like being high. I felt boyant, liberated. And Botox had no side effects. It was just a local relaxing of the muscles and that stopped the domino effect. It was great. After three months, as predicted, it wore off. So we did it again. And it didn't work.

The Mind F%#* of Chronic Pain

Now I was a two-hit wonder. I had failed, both my doctor and myself. He didn't know why I wasn't getting results from treatments that had been so successful. He talked about the next level of treatment where he would burn nerves in my spine and the back of my head, but in my mind, I heard a thread of disappointment in his voice. I was a bad patient. He thought he could cure me. But I kept coming back and back and back. He said something very vague about seeing another neurologist, and I took it as my cue. He didn't want me as a patient anymore. So I was off.

The Great and Powerful Oz

In my many, many hours of internet searching, I'd often read about the Jefferson Headache Clinic. Minimum six month wait, world-class headache specialists, they used all the latest meds, the latest procedures. Somehow I got an appointment with only a three month wait, not with one of the main docs, but with one of the fellows. Five hour appointment, five hundred dollar out-of-pocket cost. I was in.

The $500 is for a psych evaluation and a personality tests, which informs Jefferson's research. Not sure how I feel about that. But the doctor I saw was sharp. Most neurologists aren't crazy about treating headache patients, but the fellows at Jefferson have chosen to specialize in headache treatment, a Sisyphean pursuit. After I filled out the personality text and did the psych eval and waited a few hours, I saw the doctor. He looked at all my test results, did a physical exam, asked a lot of questions, and gave me a diagnosis:  I had cervicogenic headaches and I should see a spine specialist.

Secretly, I was glad. I loved everything about my spine specialist and his practice. I had a reason to go back.

I had a long talk with the amazing nurse practitioner who works with my spine doctor, and I realized I'd been wrong about my perceived dismissal from his practice. He had plenty of patients who came back again and again. I was happy to go back to the one doctor who had treated me successfully, who was kind and patient, whose staff I liked so much, and whose operating room gowns were thick and long, unlike the threadbare rags most doctors' offices and hospitals used.

Shock and Awe

Now we're trying out a one-two punch: more Botox in more places, followed by more cortisone in higher facet joints in my cervical spine. I got the Botox this past Monday. I'm having a bad reaction to the shot my doctor put in the occipital nerve area, so all week I've had stabbing pain there, and a pretty crappy week, but that pain is supposed to wear off. I still have the regular headaches, but Botox can take ten days to work. I'm scheduled for the cortisone shots this Thursday, and then we'll see. Am I hopeful? A bit. I don't think the Botox is going to do anything. It worked pretty quickly the one time it did work. Maybe the cortisone will work this time, but I'm not holding my breath.

Honestly, I think pretty soon I'll let Dr. Lerman burn the nerves, another procedure that seemed insane when I first heard about it. With radiofrequency ablation, using live x-ray as a guide, he sends in a probe and then uses electrical current to burn and essential kill the offending nerves. I could get up to year of relief with that, and then the nerves may grow back and we'd do it all over again. This is what I think will happen if "shock and awe" don't work.

The Good Part

I think chronic pain could really do a number on a relationship. Pain is invisible, subjective, and some partners might question reports of its severity. But my husband went through his own painful, byzantine medical journey for several years before he was diagnosed with psoriatic arthritis, so he gets it. He tolerates my moodiness and my need for sleep. When the headaches are bad, I have the company of my darling dog and the two kittens we brought in from our backyard last summer. Even our grouchy older cat has gotten sweeter.

Why I Wrote All This

I'm not trying to get pity or attention. I want people to understand that the me that you've encountered in the last two years isn't the real me. I'm normally outgoing, love to go on long bike rides with groups of friends, love parties, going out to dinner, having people over. Laughing. I'm not usually a drag. I'm not usually so cranky. And I'm sorry. I feel so much guilt about being a less-than-participating friend and family member.

And if you found this in your own search for headache relief, I hope something here has been of use. When I first started my own obsessive internet searches, I found many chronic migraine blogs, and very little relief. Years and years of pain. I'm not going to stay in pain. I can't. I have a life to live and books to write and friends to see and students to teach.

I'll check in again after I get more treatment. I'm keeping my fingers crossed.