Get thee behind me, Satan!

My headaches are bad. I’ve been in an unexplainable flare-up for about three weeks, and they are stabby-bad. They feel like a screwdriver has been plunged in at the base of my skull, and the tip is coming out my eye. There is no rhyme or reason: stress or not, enough sleep or not, sugar/caffeine/diet coke or not. It’s pretty frustrating.

In late August, I did the lidocaine infusion in the hospital. I went in feeling optimistic, brought along lots of school work, books, entertainment, and had every intention of making it work. I had a PICC line put in my arm and got loaded up with tons of lidocaine and other stuff. My headache went away pretty quickly (I’d come in un-medicated, with a good seven or eight on the pain scale). But the lidocaine made me simultaneously exhausted and want to crawl out of my skin. I couldn’t read, watch TV, or stay awake for visitors because of that, and I couldn’t sleep as much as I wanted to because nurses were in changing my meds or giving me shots every four hours. Everyone was incredibly nice, but I was miserable. The freaking smell of hospital food. . .

Anyway, they let me out after 48 hours (they want you to have at least 24 hours headache-free) with a stack of prescriptions to try. They called it a success. Once I got home, I had four days without pain before it came back with a vengeance. Not a success.

Since then, I’ve done another round of Botox (useless, but now my doctor says it may take four rounds before it works), tried all the new prescriptions (they have failed), and had nine visits with chiropractor number 7 (didn’t help). I’m getting towards the end of a tough semester (just tons of grading—awesome students). Most days I get by with Vidocin, but some days it doesn’t work, and those days are brutal.

I have mixed feelings about narcotics. First and foremost, they are saving my life. There’s no way I’d be able to work if I didn’t get a break from head pain. And I admit, the days I don’t get a break get very, very dark. I don’t think I could stay alive if this pain was constant. I don’t think many people could. In addition to the pain, I am just very angry and caustic. It’s very hard to be in the world. I want to flip out on people for their loud voices and bright headlights. I can’t think straight, can’t grade, and just want to be in the dark silence, alone. So thank god for Vicodin. I have virtually no side effects from it, no loopiness or sedation, and I can function very well.

But then there’s my sobriety and an inferred judgement from those unseen, even though I’ve never once taken these drugs for anything but pain. The idea of judgement bothers me less and less as I see how essential Vicodon is to my quality of life, and my livelihood. But in the last year, Vicodin became a schedule II drug, and doctors are not thrilled about prescribing it. I understand that in recent years, the rate of ODs from pain meds has skyrocketed. I understand that we need to get a handle on it. But as a legit pain patient, I resent having one doctor in a practice that “doesn’t believe” that narcotics help headaches like mine, another doctor who “might be willing” to prescribe them for me, and the third who actually prescribes them does so begrudgingly, as though she’s doing me a big, fat favor. I have pain. These are the only meds that work. What the hell else am I supposed to do?

But I don’t want to take narcotics forever. So I’m looking for more treatments. I have cervicogenic headaches, meaning my headaches start from problems in my neck, but the actual nerve condition I have is occipital neuralgia. The narrowing/bone spurs/arthritis in my neck impinges on nerves that send signals to the occipital nerves at the back of my head. My actual pain is about one inch in diameter, the handle of the screwdriver, and then it radiates to behind my eye.

There are neurosurgeries that may help. This is considered a peripheral nerve disorder, along the same lines as carpel tunnel syndrome. My doctor at Penn Pain Management said that if Botox didn’t work, he wanted to implant an occipital nerve stimulator. Basically, it’s an electrical lead placed over the nerve, connected to an implanted battery pack in my chest. I’d have a remote control and could sent a current over the nerve to block the pain. I’m in a Facebook group for this and I read with interest many people’s accounts of what a miracle it is. But I also read about infections and slipping leads.

Then there’s nerve decompression surgery, where they pull the nerve out of the muscle in the back of the head so nothing’s impinging it. I’m a good candidate for both because I’ve had lidocaine injected into the occipital nerve on several occasions, and it has successfully blocked the pain for a few hours.

But these procedures are risky, and if they fail, they can make the pain worse. The rhizotomies I had last year where they tried to kill the nerves by cauterizing them have absolutely made the pain worse—much sharper and more intense. So that scares me. I’m going to have a consultation with a neurosurgeon in a few weeks so I can get more information.

But in recent weeks, I’ve had to take more Vicodin to control the headaches. If I take doses too close together, I get seasick and that’s such a gross feeling, dizziness and nausea, actually worse than pain sometimes. I could step up to a stronger narcotic. My primary care doc thinks I should do an extended release drug, or a fentanyl patch. But then what—the pain gets worse and I take stronger and stronger drugs? Hard to imagine.

Dear reader, what would you do if faced with such a decision: surgery or narcotics? It would help me to know what you think. All of this is so wacky and strange. I can’t believe I’ve tried all these treatments. I can’t believe all the drugs I take. I can’t believe this is STILL going on, that hitting my head four years ago is still fucking up my life. It makes me feel more normal and grounded somehow to hear my friends tell me what they would do if they were in my shoes. So let me know!

Botox and Lidocaine

It's August. I am deep in summer session grading, lamenting the fading season, and eating the most fantastic tomatoes from my garden.

I have a line-less forehead, and that deep, pissy furrow between my eyes is gone, My eyebrows are now straight lines, no arch at all, and my eyes have dropped a little bit. No one notices but me, and it's hard to put on eye makeup. Three weeks ago, my neurologist put 31 shots of Botox all over my head. It's maybe helping, but not really. It hurt like hell, and the little pop sound the needle made each time it pierced the skin was just gross. I said fuckfuckfuckfuckfuck until she was done. Supposedly Botox only really helps headaches the second or third round, spaced three months apart, so I've got some time before I can expect much.

My doctor also doubled my Indocin, and that's definitely helping. It's a super strong NSAID that so far I am tolerating well (it has really harsh side effects--causes major stomach issues and increases the risk of heart attack, liver failure and other goodies). Most people can't stay on it long-term. But according to my headache journal, it's made a difference:

During the two weeks before I doubled the Indocin, I had 1 day with no headache, 3 days with 1 headache, 5 days with 2 headaches, and 4 days with headaches all day.

In the two weeks since I doubled the Indocin, I've had 6 days with no headaches, 5 days with one headache, and 4 days with headaches all day (including 1 or 2 days where I forgot to double the Indocin because I'm an idiot).

This is pretty  improvement. Six days out of fourteen with no headache is a record. It's the four days with headaches all day that still suck, especially since they are usually days I am teaching. So I'm going to do the inpatient treatment at Jefferson Headache Center, five days in the hospital with a PICC line pumping lidocaine 24/7. The idea is to "break the pain cycle" with a super crazy amount of anesthetic. Several people in my Facebook headache group say it reduced their overall pain levels a lot and also made their meds work better. Other people said it was a waste of time. If you remember, I was scheduled to do this in early June, but I backed out because it seemed insane. It still seems insane, but now that I've been back in the summer session classroom with pain to remind me how much that sucks, I have to give it a shot.

There is no aspect of the hospital stay that I'm not dreading. It's my one last break before the fall semester begins, and I'd really rather be at the pool/the shore/in the woods/one my porch watching hummingbirds. I hate being apart from Buddy for half a day, let alone most of a week. I'm scared the PICC line is going to hurt and be hard to sleep with. You have to stay in bed the whole time because of various heart monitoring apparati, and I will climb the walls. I'm terrified of the hallucinations that everyone says are really common with lidocaine. My days of willingly hallucinating are long over.

More than anything, I'm scared it won't work. Truthfully, I'm pretty sure it won't work. Okay, I know it won't work. But I'm doing it anyway.

I'll be productive in the hospital. I have lots of school prep to do, plus my own writing/sending stuff out, plus reading, plus binge-watching some show or another. Maybe Friday Night Lights finally? Other suggestions? My awesome awesome husband will visit a lot and bring me food (I'm not expecting much vegan-friendly hospital fare). Maybe I should get seed beads and make some necklaces. My mom and some friends have offered to visit, but I have a feeling I might be feeling too yucky. Especially if I'm hallucinating.

Maybe it will help. I have a busy fall semester ahead. I would love to cut down on meds. It would be great to have more pain-free days. October will be four years with these stupid headaches, four years since I walked into a steel beam head-first and saw birdies. The days where I have one or two headaches are easy--meds to the trick. The all-day days are almost comical anymore. On those days I take meds and they don't work. I take some more, and they don't work either. Some days it's enough to knock out a horse, but on me, the meds do nothing. I use my TENS unit, I use heat, I take a nap, I cancel my plans, I walk around the supermarket holding my head. I have no idea why a day like this happens, and it almost never happens twice in a row. It's just that when I'm teaching, then it's not comical, and I hate being upright and I hate how hard it is to be enthusiastic, kind and patient. It's awful.

So cross your fingers the lidocaine does a bit. I'll check back here once I'm in the hospital (August 24) and report on the experience.

The Lineup of Upcoming Treatments

I saw my pain management doctor at the University of Pennsylvania the other day. He’s emerging as my favorite now—he has read my entire record of headache treatment, spends a ton of time with me, and is, well, a Penn doctor, which means he’s top of the line and his practice is connected to Penn’s research on chronic pain.

He had a lot to say.

First, to him I am not a headache patient, but someone with chronic pain. He can’t pinpoint why I have it, or why anyone else has it. Maybe my neck damage, maybe my head injury, maybe something else. He says medicine is pretty stumped about the causes of chronic pain. As for treatment, everyone responds differently to everything, so they just keep trying different things until something works.

He brought my records into the exam room. “You are unusual,” he said. “You’ve tried everything. Most people with chronic pain aren’t nearly so motivated.” That gave me a mix of pride and despair. He said had I come to Penn when the headaches first started, he would have tried everything I’ve already tried. So I’m advanced.

So what’s left? He came up with a treatment plan. Attempt the first thing, and if it doesn’t work, go to the next. I’m glad there’s a plan, although the contents of it are a little weird.

I’ve written this before: as this saga continues, treatments that seemed completely insane start to seem viable, even desirable. It took me a year to wrap my head around the idea of getting nerves burned in my neck, and then I went ahead and had it done twice last year. Desperation is the mother of acceptance.

I’ve cool with the first thing he wants to do, but the rest. . . not yet.

First, I’m going to get the full headache protocol of Botox. I had a few shots in the back of my head two years ago, and they worked perfectly the first time (three pain-free months) but then never again. This time I’ll get 31 shots all over my head. My Jefferson headache doc very lamely did not order them for me as she said she did, so my Penn doc is finding someone at Penn to do them (it’s a neurologist’s treatment and he’s an anesthesiologist).

The first time someone suggested Botox, I almost laughed. It sounded insane—paralyze all the muscles in my head?! Now it sounds great. Lots of people in my headache group have success with it. (BTW, Facebook groups are amazing for things like this. There are 4,000 members in my chronic daily headache group, and it’s been so good for me. I can ask a question and get a dozen responses in ten minutes. I’ve learned about so many treatments, and gotten a ton of support. I used to believe internet “friendships” were bullshit, but I’ve made some really nice connections with people. There are FB groups for just about everything, and I highly recommend them).

I wish I could have had the Botox weeks ago, when the Jefferson doc first suggested it. Had she ordered them two months ago, I would have. Had she ordered them a month ago when I found out she hadn’t the first time, I would have. They take a good week to work, and second summer session, where I teach two classes four days a week for seven week, starts in ten days (for you non-college teachers, this is a heavy load. Lots of in-class time and many, many hours of grading).

Then, if the Botox doesn’t work, we go on to treatment #2, which is harder for me to consider. This would be the occipital nerve stimulator (video of the procedure—not for the squeamish). A lead is implanted in the back of the head over the occipital nerves, which is the center of my pain. Wires are run to the shoulder into a battery back. A remote controls the electrical impulses, which block pain signals. It’s like an internal TENS unit, if you’ve ever used one. They do a trial first by inserting a temporary lead for a week to see if it works. This is all surgical, fairly invasive, and right now it seems fairly insane. But I’ve heard lots of good reports on it. My doctor says if it works, it works completely. It would eliminate the need for meds, which would be awesome beyond belief. When I was a kid, people said I resembled the Bionic Woman. If I got this, I’d resemble her even more.

The last treatment up to bat if we still aren’t winning the game is methadone. You know, the stuff they give hopeless heroin addicts. I’d be on a daily dose for the long term, not just for flare-ups. This one seems nuts because then I would be a physically dependent opiate user. Methadone is hard on the bones, and I might get used to one dose and have to get ever-increasing doses.

But I respond well to opiates. I don’t get loopy from them at all—they act like a cup of strong coffee. I’m never tempted to abuse them because a) I have an awesome life that I want to preserve and b) they make me sick as a dog beyond minimum doses—dizzy, heart pounded, nauseous and crazy-anxious. My doctor isn’t a fan of regular use of short-acting narcotics like Vicodin, which I’ve used when I have extreme flare-ups. For chronic pain patients who have failed all other treatments, this is the final stop.

It’s very hard to wrap my head around it. I’ve had addict friends on methadone maintenance, where they go to the clinic every day and drink the Tang-like dose. I taught GED classes in a methadone clinic. My students could barely function after their dose.

My doctor says at Penn they work to get the exact right amount for a patient’s pain. It doesn’t get a person high at all, just tamps the pain down. Once they get the dose right, they turn the prescription over the primary care physician. New laws require monthly check-ins and monthly prescriptions.

Oh, and he thinks the 5-day inpatient lidocaine treatment that Jefferson wants me to do is bunk. He says to go ahead and do it if I feel like I have to, but he thinks it won’t work. I’m not sure what I think. If I get the Botox in the next few weeks (it takes a while for insurance to approve it) and it doesn’t work, then I’m at a crossroads. Implanted nerve stimulator or inpatient for five days? Tough choice.

Finally, I am done with physical treatments. It’s been five days since that chiro adjustment, and I’m still in a ton of pain. Vicodin is only helping a little. I’m pissed. No physical therapist or chiropractor has ever not made the pain worse. I have dreamt of a physical fix since this whole thing began, but I have to give up on that dream. My nerves are too reactive. It sucks.

I just really really really wanted to be in a solution before school starts. That’s not going to happen for summer session, but I need relief for the fall. I’m teaching a heavy load and one really intense fiction writing class. The thought of headache teaching makes me want to cry. It’s awful. It’s a perversion of the career I love.

Thanks for reading. I don’t know who you are since no one ever leaves comments, but your invisible support means a lot to me.

Hey, could you try to leave a comment? I'm not sure the comment feature is working. I've tried to adjust stuff, but it's hard for me to tell.

BTW, If you are new to this blog, I've tried:

Accupuncture

Yoga

Herbs

Creams

Myofascial release

Biofeedback

5 chiros

7 physical therapists

Nerve blocks

Nerve burns

Trigger point injections

Many, many meds

Basically anything anyone has suggested to me. I am not joking around here.

Limbo

The deal was this:  I’d delay the extreme-seeming inpatient lidocaine infusions to give some other treatments a chance first: Cymbalta, atlas-orthogonal chiropractic, occipital nerve blocks, the full migraine Botox protocol, and more careful monitoring of my headache triggers.

The Cymbalta is doing nothing.  They were a swap for Prozac, which I’ve taken for 20+ years. While they do the job for anxiety and depression, they haven’t helped my pain at all. Plus now I have insomnia from it. Every single night, I wake at 2 and can’t go back to sleep for at least two hours. So I lie in bed and read my phone and my kindle. I am very well-informed.

As for the chiropractic, I’m two weeks into these weird adjustments called atlas orthogonal (click to check out a video) where a machine sends a very light vibration into the top two vertebrae to literally get my head on straight. I like the chiropractor. He’s smart and confident he can fix me. He took a set of x-rays in the beginning and showed me how my head rests crooked—he believes it’s the result of my walking into a steel beam, and nothing to do with the damage in my neck further down. I drive 90 minutes round trip to get to his office, and he’s the kind of chiro who has three patients going at once, so there’s a LOT of waiting. Right now I can handle it, but I’m back at school in two weeks and three hours twice a week will be a drag. Plus I’ve already dropped $955 on this. I’ll get some of it back from my insurance, but I have a $500 deductible etc. That’s all to say it’s time consuming and expensive.

And the rub--it’s making my headaches worse. Last week I was headache free after the adjustment, but then had my normal daily headaches all week. The chiro found this frustrating, since he’d hoped it would gradually reduce the number and intensity of my headaches, so he changed the measurements on the machine when he adjusted me this past Monday. I have been in crazy amounts of pain on and off since. And it’s a new kind of pain, right where the head meets the spine, and it’s very sharp and very non-responsive to medication. So. . . fuck that.

This will be my thirteenth “break-up” with a chiro/physical therapist/other alternative practitioner. You’d think I’d be good at it. But I hate it, because I’m basically telling them they were wrong about me; they can’t fix me. They cheerfully suggest I give it more time, but when the treatment is making the pain so much worse, and I have to be back in my classroom soon, there’s just no way.

I’ve kept pretty good records of my headache triggers for the last month: Diet Coke for sure (inflammatory with arthritis), cacophony of any sort, the stupid spotlight lighting at Starbucks, my parents asking me questions at the same time, toddlers practicing their shrieks in restaurants while their parents pretend it’s not happening. Earplugs and white nose help, but life in this world is just loud and chaotic much of the time, and there’s not much avoiding it if I want to have a life. So I’m not sure what to fix there.

As for the Botox, the neurologist at Jefferson forgot to submit the pre-approval request to my insurance. So I left her a message asking her to do it. I checked again today, and she still didn’t do it. I hear so many good things about this treatment—31 shots all over the head. I find it super-creepy that the doctor hasn’t done this yet. I am wondering whether she’s lost interest in me because I put off the inpatient treatment. That would be stupid. Anyway, she’s on vacation, but I’m calling her next week to get this call rolling.

That leaves the occipital nerve blocks. I see my docs at Penn Pain Medicine tomorrow to discuss these (as well as the three-inch stack of my headaches records I collected from various doctors and hand-delivered to them a few weeks ago at their request so they could have the full picture of my treatments). But people in my headache group on FB say the blocks are very temporary, and sometimes cause more pain. Still, of all the doctors I’ve seen, I have the most confidence in these. They are Penn docs, after all, and their practice is connected to Penn’s pain research. I’m just happy I get to see them tomorrow and talk about options.

And I’m going to go ahead and reserve a hospital bed for late August. Even though the lidocaine infusion seems crazy, “no stone unturned” has been my motto these three-plus years. And right after I postponed it last month, someone came on my headache group and raved about getting six pain-free months from it. Today’s pain was so ridiculous that it made me think about it again.

Even though I hate taking ten thousand meds a day, I’m grateful that they work. Today they didn’t for many hours, because the chiro crooked head pain was so bizarre, but eventually I took enough and now I’m okay. So many headache people are med-resistant or have super stingy doctors who only prescribe ten of these a month, or none of those (narcotics) ever. I am lucky for meds. And most of my time this summer has been really nice because of them, and my headaches, though shitty, pretty short-lived.

Second thoughts, second opinion

As soon as I agreed to go inpatient at Jefferson Headache for lidocaine infusions, I began to have second thoughts. At first, I just hated the idea of being cooped up for the first week of June. I spend a lot of time outdoors in the summer. I knew I’d feel like a hostage, especially if the weather was nice. But then I started to poke around online and read accounts of this treatment, and my doubts became serious, not just based on personal comfort.

The infusion starts with a picc line inserted in an arm vein that snakes into the heart. I’d be connected to it the whole time, except for 15 minutes a day for a shower.  When I read how high amounts of lidocaine often cause hallucinations, I decided I only wanted to do this if it had a strong chance of reducing my headaches significantly.

Don’t get me wrong—I used to willingly hallucinate often in my 20s and I enjoyed it mightily. But tripping in cemeteries with a band of merry pranksters is a far cry from hallucinating alone in a hospital bed. From conversations with my headache group on Facebook, I started to see this as a treatment of last resort, something you’d consider if you had one constant headache that no medication would eliminate. That’s not the case for me. So I decided to get a second opinion.

I’d cancelled my appointment with Penn Pain Medicine when I went back to Jefferson, so I scheduled a new one. They looked at my MRI and pointed out all the funkiness in my cervical spine that could be causing the pain. They suggested that what I really have is occipital neuralgia, “result of compression or irritation of the occipital nerves due to injury, entrapment of the nerves, or inflammation” (WebMD). I’ve read a lot about this and thought that was probably accurate. My spine docs had been treating the nerves in my neck that communicate with the occipital nerves--why not just treat those nerves directly?

They want to do an occipital nerve block, which would hopefully block the pain in that actual nerve instead of the medial branch nerves in my neck, the way the rhizotomies did. They asked me to collect all my medical records and deliver them this week (if I have them faxed, they go into the Penn system at large and can take forever to get to these docs). I see them again in a few weeks, at which time they’ll will try this nerve block.

Meanwhile, the Jefferson doc had prescribed Cymbalta, which is a SSNI. It works for both depression and pain. It’s not fully in my system, but my headaches have been pretty minimal for the last few weeks. I’ve even had days with no headache at all. But I will say that since school ended, my life has been incredibly low-stress. I just finished a millionth draft of a novel I’ve been working on for many years. I spend time on my beautiful porch, in my backyard, in the woods, and in the kitchen.

I’ve been tracking my headaches, and they’ve been triggered by the following: a too-loud and tinny microphone at a reading at the Free Library, chaotic time with family, weird bright spotlights at Starbucks, and a stimulus overload at my niece’s dance recital. When I’m in my quiet house, I’m almost always pain free.

I’m teaching second summer session starting in July. That will be the real test. I am so done with teaching while in pain. By then I’ll have had the occipital nerve block, the Cymbalta will be in full swing, and the Jefferson doc may have administered the full migraine protocol of 31 shots of Botox all over my head (which the Penn docs want me to get).

May has been a great month overall. I’m very psyched about this book. I have a few people reading it, and then based on their feedback, I’ll do some more revision and then start looking for an agent.

But if I go back to teaching in July and the headaches come back full force, the Jefferson doc says I can go inpatient the week after summer session ends. And I’ll do it, no matter how beautiful the weather. Pain is ruining teaching for me. For more twenty years, my classroom was my happiest place. With a headache, it’s torture.

Inpatient

Today I saw a new doctor at Jefferson Headache, and at the beginning of June, I'm going inpatient for five days.

I'd asked to see the director at Jefferson for a consult, so they gave me an appointment with a fellow (I saw a different fellow there last year--he couldn't help). I thought I'd see the fellow, who would call the director in, who would tell me they still couldn't help me but give me some ideas on where to go next (he wrote the diagnostic criteria on cervicogenic headache).

Instead, I met this doctor, the fellow, who specializes in cervicogenic headache (very rare), and she spent well over an hour with me going through my history and offering treatment ideas. She finally decided that she wanted to bring me in for five days (Jefferson and other major headache clinics do this a lot). I'll get a picc line and meds, including lidocaine, dumped in until something works. I'll also take classes on posture and nutrition, take yoga, see a psychologist and a psychiatrist.

I'm bummed that this is happening in June and not January. The thought of being inside for five days when it's nice outside makes me want to scream. But the thought of more teaching with headaches makes me want to scream more, and I'm on break for May and June, then back in the classroom in July. So it's now or never, or at least not until winter break next year.

The doctor was excited by the challenge of working with me. She has migraines herself. I've never worked with a doctor who has pain (or at least they've never told me). It's of comfort to me. She says Jefferson is always doing trials of new treatment/meds, and if I decide to work with her, I will have access to that. Right now she is a fellow, but they are thinking of hiring her for real as a cervicogenic specialist. She showed me a presentation she gave recently, all kinds of graphics. These headaches are very very complicated (ALL headaches are complicated). The area where mine are generated is such an intense mix of muscle, nerve and blood vessels. She's super into trying to fix it.

I had an appointment lined up with Penn Pain Medicine, but I'm canceling it. I'm going to do inpatient and give this doctor a chance. I'm looking at the hospital as a writing retreat. I can have visitors (except Buddy, which will be hard. I mean really hard). I think if I didn't do this and continued with the headaches, I would always wonder.

The pain has been better in the last few weeks, mostly because of the weather. I think the cold made me tense up, and the grey was grinding me down. Now when I look out any window of my house, all I see is green. I am scratched up and achy from gardening, but that feels good. I'm looking forward to finishing this novel revision in the next few weeks and getting feedback on it. For the next month I plan to lie really low--gardening, writing, hiking, hanging out with my animals. I want time to go by really slowly.

But the headaches are there, every day. I feel crazy when I go over my history with a new doctor because I've tried so many things that haven't worked. It's really been crazy.

Straighten up

I'm not doing well--I'll just say that right off. I had a few great months with a new med combo, but maybe six weeks ago, it stopped being effective, and my headaches are as bad as they've ever been. I have a bunch of treatments etc. to report, but first I want to say that something in me has to change. I am fighting this so hard. I'm in a constant state of obsessive panic, and it's not helping at all.

Turns out chronic pain is its own disease. We get an injury, illness, and if the pain from that doesn't go away in a normal time frame, it becomes chronic, which is a pain signal/nervous problem now, not whatever initially caused it. It's not an emergency, it's not the body signalling disaster, and it's not going away anytime soon (a good friend with a much healthier attitude about her own pain taught me this).

But still, when the meds stopped being so effective, I freaked out. I began to see my seventh physical therapist, who told me that things would get worse before they got better, that I'd given up on PT too soon with the previous six. I've been seeing her for six weeks now. At this point, I hate it. It's not helping. Often it's flaring everything up worse, and I find that humiliating. I've had two super successful experiences with physical therapy, both for sudden conditions (knee and hip). I worked hard and I got better, and the pain was completely gone. That's always been my dream for my headaches, but it's not happening. In addition to lots of neck and mid-back strengthening exercises, I see a vestibular therapist there who treats me for inner ear imbalance (which I do not think is an element in my headaches at all, but whatever). These exercises involve a lot of eye things, laser headlamps on targets etc.

I appreciate the therapists' efforts. I know a patient with chronic pain has to be a huge pain in the ass. At my one-month check-in, I reported no improvement, and my therapist didn't didn't believe me. It's my fault. When I come in in the morning, I walk into the public area where people are doing all kinds of exercises and all the PT's are lined up on their laptops. My PT asks me how I'm doing, and I feel like I have to be cheerful, so I say I'm fine. And in the morning, I usually am. But chances are, the day before was a roller coaster of pain spikes with maybe three hours of relief total. I never talk about that. Physical therapy is such a positive place, and I don't want to be a drag, especially in front of all those people.

But at this one-month meeting, I broke down. I was furious that she was questioning me, and also just so frustrated that a month in, I saw no improvement. She replied that a month was very little time, and I should give it at least another month. So I'm doing it, and I'm hating it.

That prompted another full-court press of new doctors' appointment, as I do every six months or so. At this point, my regular spine doctor just prescribes, and the fancy spine doctor who I saw for my second failed rhyzotomy is out of the picture. He wanted me to come in when school is out and have another rhyzotomy further down my neck. There's no way in hell I'm doing that. I've come to believe that those procedures have ultimately left me in more pain, and it's sharper and more intense.

New neurologist has switched up my meds, and has me in three times for steroid infusions to lessen the inflammation around my neck joints. I did the first one Thursday (two hour IV), and that night took my first dose of Baclofen (a stronger muscle relaxer). Monday morning I had the worse stomach sickness that I can ever remember ( I very rarely get sick to my stomach). It's the first time ever that I've called out sick for anything headache-related, but I literally could not stop throwing up. The neurologist's office was closed for Good Friday, so my primary care doc called in an anti nausea, which saved me. He thinks it might have just been a stomach bug, but I've read that Baclofen can cause intense nausea So I'll call the neurologist Monday and try to figure out what happened, but I'm in no hurry to repeat either the IV or the Baclofen.

She did swap out my arthritis med meloxicam for Indocin, a stronger NSAID. There are certain headaches for which Indocin is the only cure, and it's weird that no one's ever tried it on me before. It's actually helping a good bit. It's not taking all the pain away, but it's lessened.

I also saw a rheumatologist last week to see if any of the is Lyme damage/increasingly degenerative arthritis. I liked her a lot. She said a major piece of this is that I have bad forward-neck posture and I have to fix it. So I've been trying to keep my head back, particularly in class. It helps if I lean against the wall. When I'm walking, I try to thrust my chest up, which makes me feel like some boastful, busty high school girl. She ordered a ton of blood work, and I see her in two months.

But the main thing I want to do is get my head on straight. I'm waiting on a referral for a cognitive behavioral therapist specializing in chronic pain. I just don't know how to manage this mentally. I'm doing a horrible job, in fact. I am alternately furious and filled with self-pity. I am completely self-absorbed, and veer on the brink of real depression much of the time. This isn't going to work for the long haul. I try to be objective about how fucking great my life is: fulfilling career, great marriage, sweet house, great family, darling dog etc. But when the pain's bad, it's all I can see. Much of the time I feel like my life is collapsing into itself, a sandy sinkhole.

Then there's this guy I've been reading, John Sarno. His theory is that chronic, untreatable pain is actually psychosomatic, the mind's way of distracting us from a great amount of anger or anxiety that we don't want to look at. The mind creates muscle tension, which results in this awful pain. He goes through all sorts of physical conditions, including bone spurs impinging nerves like I have, and points out that many people have these same conditions and don't have pain. The conditions are unremarkable. My spine doc always told me that back/neck pain was like that--some people with a ton of arthritis have no pain, while others with just a little have lots. I'm open minded to Sarno. Supposedly, when you "get" that this is true for you, the pain just disappears. 20/20 did an episode on it years ago. I've been paging around one of his books, but there are actual writing tasks I am supposed to do to get to the heart of it. And it's not like you have to actually get rid of the anger or anxiety. You just have to get clued in to the fact that your body is tricking you. I'm actually of two minds about this: when I do start CBT, I want to check this out. But it's also kind of insulting, like my pain isn't real, and I'm kind of a nut. Truthfully, I've never been that kind of person, feeling sick when I don't want to do something etc.

But I'm no longer the person I was. I think sometimes I idealize that person as super cheerful and always energetic, and maybe I was much of the time, but I'm not any more. I don't like who I've become at all.