After an appointment with our migraine and headache specialist, it’s easy to feel let down or off-balance, especially if we’re dealing with chronic migraine or have been looking for effective treatment for some time. Recently, my friend Rosa came home from an out-of-town specialist appointment and told me it hadn’t been a good appointment. Even though she totally understands that it takes time to go from horrible daily problems to well managed migraines and headaches, she was really feeling down.
Wanting to help Rosa, I asked her to tell me more about the appointment. One of her frustrations was that her doctor didn’t recommend any treatment changes from what she had suggested three months earlier. So, we talked and took stock of how she was feeling compared to three months earlier. There was a pause, and for a moment, I thought we’d been disconnected. No, it was just Rosa thinking and realizing that there had been progress over those three months. Here are some of the improvements she’s noticed:
- She’s battling both chronic migraine and hemicrania continua, so she has head pain every day. However, she had days with a much lower pain level than she’d had in years.
- Her extreme sensitivity to light has improved enough that she’s able to leave draperies open in her home.
- She’s no longer as sensitive to sound as she had been. She had been so sensitive that she’d been unable to watch television with her husband.
Rosa had also done an inpatient stint for Lidocaine infusions a few months ago, and when she asked her doctor about repeating it, her doctor didn’t suggest doing it right away. Rather, she told her that she was the best judge of whether she needed the treatment again, and to call if she felt she did. That was another positive. Her partnership with her doctor had solidified enough for her doctor to recognize that Rosa knows her body and is the best judge of the need to repeat the treatment.
What’s the Point?
You may wonder why I’m sharing Rosa’s story with you. Rosa suggested that I do so to illustrate how easy it is to come out of an appointment in hopes of helping others who have had or will have similar experiences. When we go to our specialist appointment, it’s very easy to be a bit on edge and just as easy for the difficulties to overshadow the good parts of the appointments and any progress we’ve made. This is especially true when progress is slow. Rosa found that when she started running through the details of the appointment with me, there were definitely positives. When she started comparing how she felt physically at the time of that appointment compared to her previous appointment, she’d made progress that she hadn’t noticed because she was still having daily pain and other symptoms. It was amazing to hear the change in her voice as she made those realizations.
Closing with Quotes from Rosa:
“There’s no cure, and nothing is going to happen overnight, but that’s easy to forget. Everyone comes out of the appointment blaming the doctor. Really? I drove all the way over here and all you’re going to tell me is nothing? That’s how I felt after my appointment.”
“Don’t give up hope. If you have a migraine specialist appointment, and feel like you didn’t make any progress or that nothing good came out of the appointment, find someone to talk with about it. Go through everything that happened and was said, and you’ll find that, even if they’re little things, there was probably something positive in the appointment and some progress made since the previous appointment. It wasn’t until I sat down and talked about my appointment that my brain said, “Wait a minute.” Then I realized there really had been good things and progress.”
_Please join us for the 2015 AHMA Patient Conference on June 21, 2015. _
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.