Last Wednesday, I had a follow up with my neurologist, Dr. Dodick. As you can probably imagine, these visits have become less like doctors appointments and more like strategy meetings between him, Craig, and myself. We had sort of come up with this working hypothesis - that if the source of my pain was a misaligned C1/C2, which was causing soft-tissue dysfunction through my neck and upper back, which in turn was feeding the pain-spasm-pain cycle and we had corrected the misaligned vertebras but the pain remain unchanged, we needed to attack the soft-tissue in some other way. Craig describes it as a "time sequence puzzle". I could have strengthened the hell out of the muscle before or worked to improve the quality of the soft-tissue (which I tried to do) but if the misalignment wouldn't let it hold, how could I have possibly gained any traction?
I had already tried some intensive massage a few times per week since returning from TX without progress. But Craig and I were hopeful as we remembered back to my first Botox experience 2 years ago. My only "response" to Botox in spring 2013 was a significant reduction in head pain the following day, which Dr. Dodick told us couldn't have been the actual Botox because it takes a minimum of several days to start working, usually peaking around the 1-2 week mark. Instead, we collectively assumed it was just the actual needles releasing tension in my muscles (the Botox injections were ALL over my head/face/neck/shoulders).
So last week, Dr. Dodick, Craig, and I decided that we'd attempt to recreate that same effect by starting a series of injections over the next few months that would alternate between lidocaine (a local anesthetic) and Botox. In the meantime, I'd also try out a muscle relaxant, Soma, to see if that would help nudge my muscles in the right direction. I started Soma on Wednesday night and then switched over to another version of it that also contains Codeine (an opioiod pain medicine).
Then on Friday afternoon, I was scheduled to see a new physical therapist, Dan Daliman. Mark, my PT in Austin, had found Dan for me to follow up with and re-check my alignment. Based on what Craig was feeling with his hands, we thought it was okay, but given that my pain hadn't budged, we were both looking forward to having another person take a look. According to Dan, my C2 was out just a little bit, so he used some muscle energy techniques to realign it. He also started me on some basic strengthening exercises of my deep neck flexors...his logic being that these stabilizing muscles (like the longus capitus and longus colli) are weak, and consequently, my larger, more superficial neck muscles (like my sternocleidomastoid (SCM) and scalenes) take over.
So naturally, after a few sets of chin tucks and the like (see below), I had a complete meltdown. Not because this didn't make sense to me (because it does!) but because this is a treatment approach we've tried so many times before and when I start hearing the same explanations and am prescribed the same rehab exercises all over again, this feeling of sheer panic starts to set in and the voice inside my head says, "holy shit....no one can help me." But Craig reminded me over and over that because of the new position of my spine, things I've tried before were different now. I knew he was right but keeping a positive mindset is always easier said than done. But since my sanity and quality of life pretty much depend on it, I don't let feeling discouraged get in the way of committing 100% to the path of treatment I'm pursuing, so I headed in to the weekend ready to tuck the shit of my chin (for reps of 12) all. day. long.
I was also having a hard time on Saturday because my birthday was the next day. The big 2-7. No, I'm NOT one of those people who bitches about turning a year older...because my boyfriend is 14 years older than me so I will be...forever young. Kidding! A fear of aging is actually a pet peeve of mine, and one I'm committed to keeping for the rest of my life. Just being able to turn a year older is a privilege taken from too many people too young. Out of respect for those whose time is cut short, how can we complain? This is eventually the realization that snapped me out of feeling sorry for myself. (But for just a little while, I did feel sorry for myself). I was bummed out that I was turning a year older and my headache hadn't changed one bit since my 26th birthday. Last February I was in the neck brace as part of the treatment I was doing with Dr. Crutchfield in Baltimore, so Craig and I went for a hike and I promised myself that by next February 8th, not only would I be on a birthday mountain ride, I'd be half way through the 2015 MBAA race series.
But then something kind of strange and equally amazing happened. Over the course of the afternoon, my headache gradually dropped a few notches. Still there, still painful, but noticeably different than "normal". On Saturday night, we went to see one of my favorite bands play, The Avett Brothers, and unlike almost every concert we've been to in the last year or so, I was able to stay for the entire show!
And it gets better. I woke up Sunday morning and my pain was still quite a bit less than normal. Talk about a birthday present! Not sure if this was the best idea, but out of pure celebration and a "f*** it, it's my birthday" attitude, I even joined Craig for a nice easy mountain bike ride. Sunday night came and went. Then Monday. My pain was still low. It was GLORIOUS.
By Tuesday morning, it had started to creep back up again and continued to do so until I was back to my normal headache on Tuesday night. I had been vigilant about my PT exercises, was still taking the muscle relaxant, and had scheduled a session with my friend Anna at Movement Rev to work on my thoracic spine mobility.
On Tuesday afternoon, Craig and I headed over to Mayo to start my first round of injections with Dr. Dodick. That morning, Craig took to my back and neck with a pen and helped me mark all of the spots for Dr. Dodick to target with the lidocaine. After 15-20 injections, Dr. Dodick told me that if this did affect my pain, he'd expect it to be relatively immediate. I had another PT session on Wednesday morning, adding in a few more strengthening exercises for my deep neck flexors. By Wednesday night, I felt totally wiped out and my pain had started really creeping beyond "normal".
That trend continued into Thursday, so that made for a kind of rough day, but it wasn't until Thursday night that things took a really bad turn. Around dinner time, my headache spiked to a level it's only been at a few times in the last few years (one of those times being my ketamine infusion in the fall). It felt like a rod was going through my temples and that lasted through the night and into this morning. I was couch-bound until about mid-day and it finally started to subside, though I still feel substantially worse than my typical headache.
We're not really sure why the injections into my muscles had that effect, though it is somewhat encouraging because it reinforces our hypothesis that soft-tissue is driving the pain. It's so hard to know for sure, but it's possible that the misalignment was originally causing the soft-tissue tightness and now that the alignment is corrected, the pain could be driving the tightness. Either way, the improvement I felt last weekend and the more recent pain spike affirms that the pain and tightness are intimately related. Now we've just got to figure out how to stop both.
