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“No, you’re not crazy - you’re having a cluster headache.”

The pain of cluster headache has been described as an excruciating, deep, boring pain, like a hot poker in the eye. The pain is like no other. Male sufferers who have passed kidney stones say that they would rather pass another stone, without pain medication, than have a cluster attack. Female sufferers describe the pain as worse than that of childbirth.

Not surprisingly given the severity of pain, people with cluster headache have demonstrated numerous and varied, often strange, patterns of behavior in their attempts to lessen the pain. It’s important to understand that these behavioral responses are a reaction to the pain and not a sign of mental or physical abnormality.

As a sufferer of cluster headache, you’ve no doubt been plagued with questions from loved ones and well-meaning friends who ask, “What’s wrong with you? Why do you do that? That doesn’t seem normal to me. Shouldn’t you see someone about that?” While your behavior during an attack may seem crazy or odd to you and those around you, it’s unlikely that you’re behaving all that differently from other sufferers before you.

Unlike migraine sufferers who crave a dark quiet place in which to lie down, cluster sufferers are restless, preferring to move. In fact, they refuse to lie down as this intensifies the pain. People with cluster have been known to pace and rock to and fro, often screaming out loud as they pound their fist against their head or pull firmly on their hair. Some sufferers cradle their head in their hands, pushing their thumb or finger deep into the affected eye socket, as they kneel rocking back and forth.

Even the most reserved individual can, during an attack, be driven to curse out loud or to kick and scream in pain. Irrational and even violent behavior is not unheard of. Even couch potatoes may be seen to run quickly in place or do vigorous sit-ups or push-ups in an attempt to find relief. Others describe sticking their heads in the freezer or running into a cold snow bank to distract them from their pain.

A cluster sufferer’s walls or furniture may bear the scratches and marks of having fists pounded against them in the dead of night. Others find relief by rubbing the affected side of the head against a rough carpet, upholstered furniture, or the side of a cold bathtub. At times, the pain may be so intense as to drive patients to bang their head against the wall or to forcibly pinch, scratch or bite themselves to distract from the pain.

As attacks are often triggered by deep sleep--the rapid eye movement (REM) stage--patients try to avoid sleep and stay awake for as long as possible. This sleep deprivation leads to rapid onset of REM sleep when sleep eventually prevails, and with it the onset of an attack within minutes. Without treatment, patients begin to fear sleep; the ensuing cycle of excruciating pain and lack of sleep leads to depression and occasionally, thoughts of suicide. During an attack, the sufferer may actually speak of suicide. Despite this, suicide during an attack is very rare.

Most cluster sufferers are surprised by their own actions and behavior but are relieved to find that they are not alone and are not “going crazy.” If you are a cluster sufferer or believe you may be one, it’s important to discuss your actions and behavior during an attack with your doctor. Often these descriptions help solidify the diagnosis and open the door to treatment and relief from one of the most severe types of pain known to mankind.

--Christine Lay, MD, FRCP(C). The Headache Institute, Roosevelt Hospital. New York, NY

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Last modified: 2002