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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

1. Seidel, Stefen, MD and Wöber, Christian, MD; “Are the ICHD-II Criteria for Hemicrania Continua Too Restrictive? Headache: The Journal of Head and Face Pain; April 5, 2012 doi: 10.1111/j.1526-4610.2012.02144.x Available at 2. Cittadini, Elisabetta, MD. Goadsby, Peter, MD, PHD, FAHS.Update on Hemicrania Continua” Curr Pain Headache Rep. 2011 Feb;15(1):51-6. Available at 3. Newman, Larry, MD, FAHS. Tepper,Stewart J, MD. “Trigeminal Autonomic Cephalalgias and Other Primary Headaches “ Scottsdale Headache Symposium. November, 2011.


  • taralane
    7 years ago

    I was diagnosed with Hemicrania Continua in the earl 1990’s. I was started on 25 mg of indocin, which, over time, increased to 300 mg of indocin. i took this along with 2 mg of Klonipin and 100 mg of cytotec to protect me from stomach ulcers for over 10 years. I was finally reduced to a diet of plain yogurt and cottage cheese because the acid reflux from my stomach and heartburn was so bad they were the only foods I could tolerate. Any grains, vegetables, meat or fish would result in severe cramping, diarrhea, and overall gastrointestinal distress. My migraines did not go away during this 10 year period, in fact they remained the same or worsened. I had a daily migraine at pain level 2-4, and an acute one sided migraine, at that time, about every 2 weeks. This has increased now to an acute migraine several times a week, although I am currently on depakote and as a preventative it seems to be working better at keeping the acute headaches further apart so I do not get rebound headaches from my dwindling supply of rescue meds that work as often.

    My migraines are now intractable, I have auras (new in the last few years), and the pattern of the migraines remain the same, the only change is in the quantity. I do not think hemicrania continuta was an accurate diagnosis in my case, even though I was treated under that diagnosis for such a long time.

    Long time use of such a high dose of indocin I feel has done permanent damage to my gastrointestinal system, as the foods I can eat without either triggering a migraine or a bad gastrointestinal episode are less that 10.

    A couple of months ago I tried the indocin again to see if it would help my acute headaches, and the medication did get rid of the headache, but the effect lasted for only about 5 migraines, before it stopped working altogether.

  • Ellen Schnakenberg author
    7 years ago

    I’m so sorry you are having such difficulties. Have you ever talked with your doctor about trying melatonin to see if either that alone or in conjunction with the indomethacin might be helpful?

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