Getting the right diagnosis
People wait 3 to 9 years on average for a diagnosis. Here is how to shorten that.
Cluster headache is often mistaken for migraine, sinusitis or toothache. A review of 15 studies (4,661 patients) found people see three clinicians on average and wait 3 to 9 years for the correct diagnosis. In a Dutch study about a third first saw a dentist and another third an ENT specialist.
The good news: the delay has been shrinking every decade as doctors learn the criteria. Those whose disease starts young wait longest: in a Danish study, almost 14 years on average when it began before age 20.
What to tell the doctor
- The pain is strictly one-sided, in or behind the eye or at the temple.
- How long an attack lasts (15–180 minutes) and how many a day.
- What happens to the eye and nose on the pain side: tears, redness, blocked nostril, drooping lid.
- That you cannot lie still during an attack, you pace or rock.
- That attacks come in runs and at the same time of day.
- Show your attack diary: it is the strongest argument.
The ICD-10 code for cluster headache is G44.0. If the doctor does not know the disease, ask for a referral to a headache neurologist.