Are we ruling out hemicrania continua too soon?

You’ve had a headache for weeks – then months – it may get better or worse, but it rarely (if ever) goes away completely.

It’s a one-sided headache, and some strange symptoms go along with it. Flushing or sweating in the face, congestion, watery eyes, feeling restless. A sensitivity to light or noise.

Part of the problem is that sometimes the symptoms play tricks on you. They may look a lot like migraine symptoms. Or they may not look like hemicrania continua (HC) symptoms – for example, a key diagnostic criteria, that HC is pain on one side of the head, seems to be almost always but not always the reality.

But there is another concern that neurologist Dr. Randolph W. Evans has. In his recent article Migraine Mimics, he suggests that some doctors may not be using the typical HC treatment properly.

HC is one headache condition that is diagnosed by treatment. It always responds to indomethacin. When the patient takes indomethacin, the headaches go away, and the diagnosis of hemicrania continua is confirmed.

But there is a catch. How much indomethacin should the patient take, and for how long? Could it be that some doctors are not raising the dosage high enough?

Dr. Evans mentions one case in which a woman had tried indomethacin for five months – surely a long enough trial. The problem was, the dosage was too low.

Missing a diagnosis by a few milligrams is pretty frustrating, especially considering that it’s not unusual for a patient to go through several doctors and wait 5-10 years for a proper diagnosis.

Indomethacin is a nonsteroidal anti-inflammatory drug (NSAID), and doctors are right to start on a low dose. Side effects can include abdominal pain, nausea, and diarrhea to name a few.

Dr. Evans suggests that doses as low as 25-50mg a day can be effective for some patients. Some patients may go up to a high dose, but be able to taper off down to about 60mg.

One specific suggestion is to try going from 75mg to 150mg to 225mg, trying each dosage for 5 days. Patients will often split the daily dose throughout the day.

Although the usual recommendation is to try up to 225mg (for example, 75mg 3x daily), there are some reports of patients responding to 300mg/day.

Because indomethacin can help us get a clear diagnosis, even if the patient can’t continue taking it, doctors should be cautioned not to stop raising the dose too soon. If the patient is able to get rid of the headache, but can’t tolerate the medication, there are other options to try.

Hemicrania continua is so often misdiagnosed, it may be more common than we think. This may be a simple way to catch cases and provide better treatment.