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My mother has excruciating pain in the neck and head during OFF times. Her worst symptom is rigidity and it manifests itself all over but most severely in the neck and head. Even when she is ON she has a constant dull ache in her head. Since her unilateral pallidotomy in May the severity has lessened but it is still there. Fortunately, the surgery alleviated one side of her body immensely. She is scheduled for another pallidotomy in about 2 months and hopefully, it will ease the pain even more in her neck. Teresa, Daughter of Mama (57/43/38) -----Original Message----- From: Parkinson's Information Exchange [mailto:[log in to unmask]]On Behalf Of double a enterprises Sent: Friday, August 20, 1999 4:14 PM To: [log in to unmask] Subject: Re: "On/Off" Chris, for me "on" is when the meds are effective (not when they are supposed to be, just when they work) and off is all the other times. Also for Jules, I don't know if this is the same, and maybe someone else on the list can help answer this or comment on it. I have severe cramps and contractions of limbs every time I go off meds. My "normal" posture, when off, is right foot curled and twisted, where I walk on the side of the foot. Rt hand curls and lays under my collarbone, and then both are likely to start shaking - my hand resembles someone strumming a guitar very quickly. Less common, my torso will cramp - this was actually one of the first symptoms I had that something was wrong - I get a severe pain in my left (usually) ribcage, and dont breath for 2 to 3 min. It usually stops just before I loose consciousness, and may continue for 15 min or longer just allowing me enough air to "enjoy" the experience. I have felt internal trembles occasionally, but they are rare for me. The cramps were originally diagnosed as a muscle set which had healed wrong. Adding to the joy of trying to figure out what is caused by what is the fact that I have broken my ribs at least 15 different times from 1 to 5 ribs at a time (Willy Nelson knew what he was saying with Momma's don't let your babies grow up to be cowboys"), and broken too many other bones to keep track. So when I have pain spasms, I rarely know what the original cause was. I guess what I am asking is, I have read several "experts" who say pd isn't painful. Are they correct, and is this caused by past injuries, or can pd be contributing to the daily pain? And can I look forward to more of the same? Most of the pain began when I turned 30. At the ripe old age of 40 now, I am beginning to get just a tad depressed when I think about my health. I am going to shut up and send this before I think about it anymore, but if anyone has any suggestions, I would love to hear them on or off list. bob "tex"