At the National Organization for Rare Disorders’ (NORD) Rare Disease and Orphan Drug Breakthrough Summit held in Washington D.C., October 15-16, 2017, Rare Disease Report spoke with Tammy Rome, president of the Cluster Headache Support Group about the organization’s rare focus area, how cluster headaches are managed and why it takes so long to properly diagnose them.
There is a large variance in how often cluster headaches present. They can occur every few weeks while some may only experience them one or twice a year. Each headache can last anywhere from 15 minute to several hours.
While there are currently no FDA approved treatments for cluster headaches, numerous off label drugs are used. The most common treatment is also the cheapest, safest, and most effective – oxygen.
As Rome explains in the video clip below, cluster headache is a severe headache disorder that has been nicknamed the “suicide headache” because of the severe pain that sometimes causes patients to contemplate or even attempt suicide to relieve themselves of it.
It often takes years for a patient experiencing cluster headaches to get properly diagnosed. According to Rome, few doctors are familiar with the rare condition and the headaches are often attributed to stress, dental problems, or sinus infections. Many patients are also misdiagnosed as having migraines.
The Cluster Headache Support Group is a patient and caregiver support group designed to provide education support, resources, referrals to physicians, and public awareness. The organization also works with pharmaceutical companies to help recruit for clinical trials.