This is a commentary piece that I just had accepted for publication in a major headache journal. The patient mentioned here is a collage of three patients so that no one’s identity can be exposed. But, as we all know, headache sufferers are often misjudged and treated unfairly.
J. Michael Jones, MPAS-C
Refractory Migraine in a “Just World”
Samantha began to experience migraines at puberty. Throughout her life she had cycles of exacerbation and modest improvement, however, with each rotation there was an upward spiral of intensification. By the time she was fifty she was experiencing intractable chronic migraine. She had multiple workups by a variety of disciplines. She had a positive family history with a mother and maternal grandmother who suffered from severe migraines and a son who experienced episodic migraines.
Samantha began treatment in the late 1980s with her primary care physician and soon graduated to a series of general neurologists. She eventually traveled to a distant tertiary headache clinic and then transferred her care to our clinic after it was established in her local city. She has always been a compliant patient. She has had mental health support throughout her life to help her cope with her chronic, daily pain.
She has tried, at therapeutic doses and significant duration, more than eighteen different prophylactic medications including numerous combinations. She has tried the standard procedures including occipital and supra-orbital nerve blocks, facet joint blocks and multiple rounds of onabotulinumtoxinA. She has tried virtually all common non-pharmacological treatments without success. She did have a few temporary successes, however, the effectiveness was lost through the process of tachyphylaxis.
She did have periods where she used abortive and symptomatic medications at a frequency high enough to raise suspicion for medication overuse headache (MOH). Equally, there were long periods of months where she washed out from potential rebounding medications without any improvement. She participated in an out-of-state inpatient treatment center twice, and we used a series of home infusions twice with limited success.
In her late fifties Samantha’s quality of life had declined to the point that her MIDAS score was 155. After another three-month wash-out period of symptomatic medications, out of compassion we returned to a program where she would self-administer 1 MG of Dihydroergotamine up to 10 times per month, butalbital up to two days per week and frovatriptan an additional two days per week. This left her two days per week of level 8-9 migraine without treatment and the other days ranged from a level 2-6.
She sought another opinion again outside our area at reputable medical center with a headache clinic. After traveling a great distance at a great expense Samantha met the new headache specialist who quickly and confidently diagnosed her with MOH. He said he would not attempt to treat her until she returned with 90 consecutive days free from all her symptomatic medications. She arrived back at our clinic in a state of confusion and feeling hopeless and I’m concerned because she now, for the first time, has some suicidal ideation.
The concept of a “just world” is the assumption that a person’s actions always brings moral fairness. While these philosophical debates have been around since the beginning of language, the psychologist Melvin Lerner brought the study of the “Just World Hypothesis” into the modern age through his work, which began in the sixties. He observed during his training that, other-wise compassionate mental health workers, would typically blame the mentally-ill patient for their failure to respond to treatment.1,2,3
As headache specialists we have all felt the dismay when a patient has failed several treatment trials and they start to question our competency. I suggest that the reverse is also often true. Samantha is just one example of many patients who I’ve witnessed where the refractory nature of their headaches is quickly dismissed as a product of their own wrong actions, despite being very compliant.
I suggest that headache sufferers, by having a disorder that is mostly invisible, have been subject to this blame game more than most. I expect that the majority of people in our society consider headache disorders as a sign of stress and a product of poor coping skills by the sufferer.
Medication overuse headache is, of course, a real physiological entity and must always be addressed first. The ICHD II criteria for MOH includes the following points; 1) Headache has developed or markedly worsened during medication overuse and 2) Headache resolves or reverts to its previous pattern within 2 months after discontinuation of overused medication. Additionally the ICHD II demands that until 1 and 2 have been met, that “Probable medication-overuse headache should be applied. If such improvement does not then occur within 2 months, this diagnosis must be discarded.”4 In the purposed ICHD IIIβ criteria, for the sake of clinical convenience, the requirement for discontinuation of the offending substance and subsequent improvement has been waivered.5 While allowing for an expedited diagnosis of MOH for the majority of these patients, who may actually be experiencing MOH; this change may serve a further injustice for the minority who are not.
We need to emulate what I see in the treatment of other chronic and paroxysmal diseases. Reactive Airway Diseases, are light years ahead of headache medicine. They have had disease-specific treatments for many decades. Yet, in the U.S. nine people die each day from Asthma complications.6 This number will reflect some non-compliant patients, however, most have received excellent care and have been compliant but simply have a bad disease.
On the good end of the spectrum the belief in “Just World Hypothesis” can have some benefit by helping patients create an internal locus of control. However, on the severe end of the disease, when the patient has used heroic levels of control yet remain the innocent victim, the fallacy becomes counterproductive. It is time that the headache specialist stops the blame-game for this unfortunate minority of refractory-compliant patients and give them the compassion and care that they deserve.
- Lerner MJ, Montada L. An Overview: Advances in Belief in a Just World Theory and Methods. In: Montada L, Lerner MJ, eds. Responses to Victimizations and Belief in a Just World. New York, NY: Plenum Press: 1998:1-7.
- Lerner MJ, Simmons CH. Observer’s reaction to the “innocent victim”: Compassion or rejection? Journal of Personality and Social Psychology. 1966; 4(2):203–210.
- Lerner MJ, Miller DT. Just world research and the attribution process: Looking back and ahead. Psychological Bulletin. 1978; 85(5):1030–1051.
- Headache Classification Committee, International Headache Society. The international Classification of Headache Disorders: 2nd edition. Cephalalgia. 2004;24 (Suppl. 1):9-160.
- Headache Classification Committee of the International Headache Society (IHS). The Interntional Classification of Headache Disorders, 3rd edition (beta version). Cephalalgia. 2013;33:629-808.
- “New Asthma Estimates: Tracking Prevalence, Health Care and Mortality,” NCHS, CDC, 2001