The article “Refractory Migraine in a Just World” accurately describes an encounter between a woman with refractory headache and a headache specialist. She is blamed for her headaches (medication overuse headache (MOH), of course, is the diagnosis). This is a common scenario, as these patients often are castigated and treated dismissively. They are left feeling hopeless and helpless.
Our usual ministrations only continue to help approximately 50% of patients, over the long term. Our options for these patients remain limited and inadequate. Some of these include: 1. Inpatient treatment, occasionally helpful but usually only beneficial short-term. 2. Onabotulinum toxin A, should be used 1st or 2nd line, fairly safe and effective, 3. “Rational polypharmacy” – side effects from multiple preventives often limit use, 4. Frequent, or daily, triptans, which at times are the only effective treatment; relatively safe but rebound is a concern, 5. Monamine oxidase inhibitors, may also help with depression. The newer Ensam transdermal patch is safer than phenelzine, albeit less effective, 6. Opioids, only appropriate for a very small subset of refractory patients; they may greatly enhance quality of life, 7. Stimulants, mildly effective for headache, and may help comorbidities such as fatigue and ADHD, 8. Neurostimulation, which may help but is invasive, expensive, and often requires another surgery; the non-invasive vagal nerve stimulator has some promise, and 9. CGRP inhibitors, which are promising, appear relatively safe, and may be a game changer.
As J.Michael Jones mentions in the article, some refractory patients begin to doubt our competency. They often become discouraged and lose hope.
Many in our field reflexively accuse the poor patient of causing their headaches, which usually is untrue. We tell them to somehow stop taking the only medication that helps. They may be offered an “end of the line” refractory approach, such as: an expensive stimulator and wires to sit in the body, which even if it helps often requires further surgery, or we may suggest intravenous treatments that help for only a short time, or we may prescribe opioids, with all of the associated problems.
We need to stop blaming the patient. Providing hope is important. It is vital to stick with the person, continuing to try various approaches. We also must push for funding and research to address refractory headache.
Lawrence Robbins, M.D.
Journal of Headache