Discrimination Towards Refractory Migraine Sufferers

This “news” item is not related to a recent study but to two recent conversations I’ve had with medical providers. One was an ER physician and the other was a Primary Care Provider.

The term “refractory migraine(RM) ” in simple terminology means migraines that don’t respond to standard treatment.  One service of the International Headache Society (IHS) is to define and name headaches. The reason that they do this, is to make sure the same thing is being discussed in every country when a certain term is used. While they don’t have a definition of “refractory migraine,” below is a proposed definition that they are considering.  This is from an article that appeared in the Headache Journal in 2008 by David Dodick, MD (a previous colleague of mine at Mayo Clinic and the president of the American Headache Society).

Table 2.—Proposed Criteria for Definition of Refractory

Migraine and Refractory Chronic Migraine

Criteria Definition

Primary diagnosis A. ICHD-II migraine or chronic migraine

Refractory B. Headaches cause significant interference with function or quality of life despite modification of triggers, lifestyle factors, and adequate trials of acute and preventive medicines with established efficacy

1. Failed adequate trials of preventive medicines, alone or in combination, from at least 2 of 4 drug classes:

  •  Beta blockers
  •  Anticonvulsants
  •  Tricyclics
  •  Calcium channel blockers

2. Failed adequate trials of abortive medicines from the following classes, unless contraindicated:

  • Both a triptan and DHE intranasal or injectable formulation
  • Either nonsteroidal anti-inflammatory drugs or combination analgesics Adequate trial Period of time during which an appropriate dose of medicine is administered, typically at least 2 months at optimal or maximum-tolerated dose, unless terminated early due to adverse effects

Modifiers 1. With or without medication overuse, as defined by ICHD-II

2. With significant disability, as defined by MIDAS _11 (MIDAS is a score relating to the disability from headaches)

In my conversation with the providers mentioned above they both made the same comments about my patients who were in their facilities for injections for their migraines; 1) the patient didn’t look like they were in real pain, and 2) obviously they were “drug seeking.”

First of all, if any medical provider in the world can judge how much pain you are in . . . by looking at you . . .  well, they deserve to win the Nobel Prize in Medicine. No one can judge another person’s pain by simply looking at them.

Secondly, the assumption, if you are in their facility, you are a “drug seeker” has absolutely no merit. Surely there are much easier ways to get “high” on drugs than to fake a migraine and go to the ER.

The point with this post is that some people (about 1% of the population of the US) have migraines that are refractory. Out of that 1%, I agree that some of them, maybe half, are refractory due to some of their own fault. The most common reason is that the patient is over-using pain medications or decongestants. Others simply don’t comply with treatments (see my other post “Why Treatment Fails.”

However, I’ve observed a group of headache sufferers who do everything right. They follow all treatment plans exactly. They do not take rebounding medications. They try and try and try . . . yet their headaches remain refractory due to no fault of their own. It is regrettable that they are treated this way by the medical establishment. We blame patients who fail, because we don’t want to blame ourselves for not figuring out how to help them.

J. Michael Jones, MPAS-C