“It’s What We Call Intractable”

I had my appointment with my neuro. His nickname is the headache guy, because he only treats headaches, and he is really great at his job. At my last appointment in October, my MRI findings indicated a primary cause to my pain. He had a lot of theories, but needed to do some more work to determine what, if anything was causing my pain.

My appointment started out with him asking a lot of questions about my life, what I do outside of school, friends, family, relationships.. Which was very odd for him. He was usually only interested in the medical facts. But this questioning went on for a while, until he clued into my confusion. He proceeded to tell me he was trying to determine if I was depressed, but found no evidence for it..but continued on to describe all the things he looked into, but to no avail found nothing. “They’re what we call intractable… meaning we can’t fix them nor do we know what causes them. The only treatment option that I see is a thorough trial of Botox” 

I’ve never wanted to try Botox (onabotulinumtoxinA) , nor do I want too. Ever since it was approved, people have been shoving it down my throat left right and center, but the data is dodgy, and I want good, solid scientific proof. 

My physician pointed me to the PREEMPT trials, and I’ve decided to give it a go after scanning both trails, and a lot of the supporting documents and lit reviews available for botox .. He recommended at minimum 4 rounds before ruining it out.. Thank god for prescription coverage. 

this doctor reminds me of a detective. He seems to love the mystery of migraine and headache disorders.. And it he seemed truly upset that he couldn’t figure out my mystery..

I’m not 100% settled with his conclusion. I assumed he was going to tell me this is my life, but I was still holding out for new hope. 

I’ll always be holding out for new hope. Because really, what else is there? 

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D day

Well today I had my pain management appointment and as usual I had a list of questions about a mile long, but my most burning question was what do I have? What condition/disorder has ravaged my body these 6 years… Is it a headache disorder? Or maybe a pain disorder? At my pediatric pain clinic they labeled this as a “maladaptive pain condition” but do a quick google search and you get nothing! A few odd web pages but nothing concrete, and I know that if the Internet doesn’t have anything it’s probably a non existent condition. As she officially diagnosed me with chronic daily headaches I see this as a bitter sweet moment. What happens next? This diagnosis that I have held on to for the past two years is no longer relevant…Will a new diagnosis change my treatment plan? Will this mean a reduction in my pain? Who knows, because chronic pain is one giant labyrinth and no one has a map..