Babygirl and I met with her new neurologist today.
I walked in and handed her three lists:
1) The medications she is currently taking.
2) The medications she has tried in the past.
3) "The List" we developed of every of all of the medications that have ever been used by ANYONE for migraine that she is allowed to try given the limitations of her transplant medications and kidney function (it is three pages long, single spaced, with comments on almost every medication outlining any potential concerns and what to do about them).
She took a thorough history. She listened carefully and asked questions when she wasn't sure she'd heard correctly. She made Babygirl herself talk about the headaches and how it's been. And then she told us a few things:
1) She isn't the best headache specialist in her group, but she will make sure that is who we see next time, at which point it would be logical to decide whether to proceed with more Botox or not.
2) There are medications that are not on any of the above three lists, and we are going to try two of them once we clear them through the kidney team (she will let US do that since that seems more efficient to her. Imagine her trusting us to actually check it ourselves....). We are to start low and adjust weekly and call EVERY TWO WEEKS with a progress report (what, not every three months??)!
3) Their group has a pain management team and she thinks Babygirl should go. They don't do medications. They don't do counseling. They do biofeedback and other mind/body connection training, and it's a short but reportedly effective program.
This doctor will coordinate with the provider she wants us to see and the pain management people to try to minimize the number of trips we have to make, since the new doctor is actually located in Wilmington, Delaware.
Hell, what's a few more miles?