So I saw the neurologist Friday. After a few minutes of him reviewing my chart (I was his first after lunch patient, so he hadn’t done it ahead of time), he asked me how I was doing. And before I could stop the words from flying out, I said “pretty freaking terrible.” I’m usually better at tempering my responses, but it was the truth.
We didn’t get as much accomplished in the appointment as I’d hoped, there just wasn’t enough time. He wanted to know about the headaches and that’s pretty much all we talked about. He was horrified when I said 20 (over 7 out of 10 on the pain scale) in April and apologetic when I told him that I had called to try to see him earlier after that miserable month. He didn’t have any theory for why they were worse later in the day, but he was intrigued by it. He was hopeful that the IUD removal would help because it can for some people, but since it’s been 6 weeks now and I’m not noticing any difference, he’s a little less hopeful.
Which was kind of the theme of the appointment, it turns out.
I told him that I had tapered off of one of the medications and he was understanding and said he probably would’ve too since it wasn’t helping. We ran down all the different meds I’ve tried over the past several years, why I stopped them (almost all were because they weren’t helping) and what the side effects were. And then he sighed heavily and looked at me.
He said that he really didn’t know what to do. He looked me straight in the eyes and told me he didn’t think we’d ever be able to medically manage my headaches. That I might just have to learn to deal with them. He didn’t mean it to be unsympathetic, quite the opposite, I could tell he was disappointed in himself at not being able to fix it. But his disappointment didn’t hold a candle to mine.
I felt like the time when I was a kid I tried to jump from a chair to the swingset, missed and landed flat on my back. The wind was knocked straight out of me. I could hardly breathe no matter how hard I tried.
To my surprise, a moment later he also said he didn’t think that surgery was the answer anymore either. Because the headaches don’t fit the high pressure pattern that my pre-surgery headaches were, he doesn’t see how another surgery would fix anything. So, I guess that’s good. Or something. He’s not sure how to designate the headaches because they don’t appear to be migraines, but they’re not classic Chiari headaches either. In the end he documented them as a remnant of the Chiari. I feel like my life is kind of a remnant of Chiari most days.
He poked around and floated a few other ideas, trigger point injections, botox, but after each one he said, “but that probably won’t help either.” In the end, he threw in the towel. He believes that there is nothing more he can really do to help me. Neither he nor his attending physician could come up with any reasonable ideas, so they’re sending me to a headache specialist. He told me that a fellow resident was starting a Fellowship in Headaches in July and if I called next week I could get in with her. Apparently it’s impossible to get an appointment with these specialists and he gave me his email address in case I had any difficulties setting up the appointment.
I walked away from the office with one prescription (a slightly higher dose of the headache med I’m still on, again with the caveat that it probably won’t help but he felt like he had to do something) and his business card so I could email him. And of course, a big headache, because duh.
I still don’t know how I feel about the whole thing. Each time he’s admitted that he didn’t know how to help me, but this was the first time he couldn’t even formulate a plan to try. That part of it makes me feel totally defeated, hopeless, freaking screwed. And though he is helping me get into see the headache specialist, I also know that there is no chance that the appointment scheduling is going to be straightforward. I envision seeing no one for months, which worries me. I am hopeful that the specialist is the right next step, but I really just don’t even know at this point.
This headache journey began for me in 2005. That was the first time I had ever seen a doctor for headaches and I feel like since then I’ve hit so many brick walls in trying to feel better. Each time I think I’m on the right path I instead find that there’s some kind of massive roadblock in the way. And each time the roadblock gets bigger and more difficult to find a way around. I don’t know at what point the roadblock is impassable.
I just want to feel better. I don’t have unrealistic expectations. I don’t expect to be headache free. I can’t expect that at this point, that would be absurd. But I have been expecting that we’d find something to make things better than the way they are now.
And now I’m just not sure what to think anymore.