Need your advice for my autistic son with cluster headaches

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Posted by Bill DeBauche ( on October 18, 1999 at 13:54:44:

My son Jim. age 16, is autistic, severely retarded, non-verbal and has very limited communication. He cannot tell us what he is thinking in any way. Starting July 4 he has had about 25 episodes where he craves bright light, paces intensely, then screams out in pain, bats his head near the eyebrow region with his fists or into a wall, turns red or purple in the face, has tears streaming down his face and is just out of control with pain. He grabs anyone who comes near and slams his forehead into your forehead as hard as he can, and grabs your shirt and will not let go. This is different from any behavior he has ever had. He has had a CT scan and MRI which were negative. He is also epileptic and gets grand mal seizures. The neurologists and psychiatrists do not know if this is frontal lobe seizure activity or cluster headache with seizures happening separately. He gets some relief many times with Imitrex and Percoset taken together, if they are given before the all out blowout takes place--if you can catch it in the intense pacing and first few cries of pain stage. The physicians have him on daily dosages of Depakote and Neurontin. Do all of you knowledgeable people out there have an opinion on whether he has cluster headaches, and if so, what should the treatment be? Please don't ask me to ask him anything--he literally cannot communicate. Thank you.

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