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.