Posted by Brian W (207.34.31.151) on October 18, 1999 at 18:40:16:
In Reply to: Need your advice for my autistic son with cluster headaches posted by Bill DeBauche on October 18, 1999 at 13:54:44:
There but for the grace of God go I.
Being a sufferer of pain doesn't make me an expert. That head to head banging must be doubly painful for you. I would suggest trying to get him into a routine of banging his head on some kind of mat on the floor. Maybe a rubber one? Something that would allow him to bang without hurting himself or others. It would also allow him to express to you that the great pain is approaching. Maybe he will learn to go and get the mat.. or go to the mat at the first sign of pain or pacing. You can then hold his hand and allow him to headbang at will. All clusterheads don't pace. I am a pacer and know that there is a great amount of energy in the legs as the flow of blood increases. I wouldn't try to stop a clusterhead from either headbanging or pacing. Both the urges are tremendously strong. The resulting frustration of the sufferer not being able to pace or headbang may result in some more violent expression.
Does he 'crave' bright light?. Clusterheads shy away from light or noise. Both are very irritating as the monster approaches. Although, it's interesting that bright light is referred to at all. Bright flashing light can bring on a cluster attack. We generally avoid night driving or any flashing glare of any kind. The checkout scanners at a grocery store can be a cluster trigger. Perhaps.. he is angry at the bright light for triggering him? Clusterheads can find each other in a crowd..they wear sunglasses nearly all the time.
How is his neck? Some clusterheads do a particular neck roll.. as if there's a big kink in it.
Finally, do the tears roll down both his cheeks? Cluster is one sided. During an attack one side is red, swollen, irritated, flushed, dripping and in pain. The other side of the face and head are very nearly normal.
Patience for you and painfreeness for your son,
Brian W