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.