Recently, Dr. Robbins spoke at the annual meeting of ClusterBusters, an organization founded by people who have cluster headaches, and people who care about them. While thankfully they are somewhat rare, for the people who experience them, the pain has been explained as indescribable. Here are some facts about cluster headaches:
* Cluster headache attacks typically last from 30 minutes to three hours or more. They often occur at similar times each day, often shortly after the person has fallen asleep.
* Cluster headaches are not “headaches” in any conventional sense. The pain has been compared to having a red-hot knife put into the eye and held there. During an attack, the pain may also radiate to the forehead, temples, teeth, palate, nose, sinuses, jaw and neck.
* A person with episodic cluster headaches might get one, two or more attacks each day over a period of months. Then the attacks go away, as mysteriously as they came, until they typically return several months later.
* Post-Traumatic Stress Disorder (PTSD) is common among people with cluster headaches. Even if they are episodic sufferers and out of cycle, they virtually always live in fear of the return of the terrible pain.
* Because cluster headaches are relatively rare, they are usually misdiagnosed by doctors who have very little experience with them. The typical time between a first doctor visit and an accurate cluster headache diagnosis can be from one year to more than six years.
* Inhaling pure oxygen through a mask can sometimes help for cluster headache attacks. The most common pharmaceutical method for helping to stop an attack is self-injected sumatriptan and other similar medications.
* Before they are accurately diagnosed, cluster headache patients may be given ineffective medications for conditions that they do not have, such as tension headaches, sinus problems, allergies, or tooth-related issues. These patients may also be seen as exaggerating their pain or overreacting to it.