Hemicrania Continua: Discussion of ICHD-II Guideline Changes

Should the ICHD-II criteria for hemicrania continua be relaxed?

Work is currently underway to change this criteria for ICHD-III to be published in next couple of years. With that in mind, a recent letter published in the journal Headache questions whether the current criteria may be too strict.

In the letter, the author suggests relaxation of two areas. Criteria A, decreasing the time necessary for headache to be present before diagnosis can occur. Changing criteria C and D to be either/or vs. inclusive of, both complete indomethacin response as well as autonomic symptoms. The author suggests this would make the ICHD guidelines more inclusive, although perhaps less specific.

Making the criteria more inclusive may result in misdiagnosis of fewer patients.

Drs. Peter Goadsby and Elisabetta Cittadini wrote in “Update on Hemicrania Continua”:

“HC is a debilitating condition, but a recent study clearly showed that it still is misdiagnosed. In fact, in a cohort of 25 patients, not one had received the correct diagnosis before attending the headache center. Interestingly, 85% of the patients were assessed by a physician within 6 months of the onset of symptoms, but the mean latency of diagnosis was 5 years, with the average number of physicians seen before the headache was correctly diagnosed being 4.6 ± 2.2 years.”

Quickly addressing the needs of patients living in daily pain is important, both for quality of life issues as well as societal burden. I suggest that relaxation of the criteria may result in physicians trialing patients with indomethacin sooner, saving them unnecessary pain and disability as well as potential adverse events with other unnecessary and lengthy preventive medication trials.

Some interesting related discussion was also held at the American Headache Society’s Scottsdale Headache Symposium regarding Hemicrania continua and indomethacin.

For example, it was noted that therapeutic doses of indomethacin (usually considered to be 75 mgs) needed for treatment as required by ICHD-II criteria may actually be much larger than previously thought and is, in practice, very individualized among patients. Medication Overuse Headache (MOH) is probably more likely in those patients on higher doses. This creates the need for careful watchful and creative management of patients whom physicians have chosen to trial with the medicine.

During the question and answer portion of the presentation, one physician gave example of a patient who was not responsive to indomethacin until they reached dosages several times what might normally be considered an appropriate therapeutic dose according to the current guidelines. (An additional patient is listed in the journal article referenced below) The patient did have full response at the higher dosage however, meaning that with consistent treatment, the pain and other symptoms were gone.

The negatives to this action included increased problems with side effects.

In this case, the patient was aware of side effects including the possibility, even probability of permanent kidney damage, but was willing to continue treatment at the necessary high dosage to treat the HC.

In my opinion, the patient’s desire to continue treatment despite greatly increased odds of permanent damage speaks greatly to the pain and disability of this primary headache disorder and the importance that physicians consider a diagnosis of HC in the face of refractory unilateral headache.

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