Cervical Dystonia; head weakness and drop after botox; helpful hints???
My CD causes my head to turn toward the left side and down a little. My pain is in the very back of my lower neck, but radiates to below my bra in my upper back bilaterally and a little into both shoulders, mostly the left.
Botox helps BUT I do get significant head weakness with head drop about 2 weeks after the botox injections. Anybody else have that problem?? My neurologist has given me botox with the EMG guidance and without and it doesn't seem to make a difference in the head drop problem. He also, at my request, dropped my botox A unit dosage down from 300 to 280, again with no change and this last time the head drop has lasted almost the entire time the botox has been helping with the dystonia. Would appreciate hearing about other people's experiences. Thanks and Happy New Year !! Carol
Botox helps BUT I do get significant head weakness with head drop about 2 weeks after the botox injections. Anybody else have that problem?? My neurologist has given me botox with the EMG guidance and without and it doesn't seem to make a difference in the head drop problem. He also, at my request, dropped my botox A unit dosage down from 300 to 280, again with no change and this last time the head drop has lasted almost the entire time the botox has been helping with the dystonia. Would appreciate hearing about other people's experiences. Thanks and Happy New Year !! Carol
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Comment by chyvonneb on January 9, 2010 at 6:01am -
I have the same issue. I just try to exercise my neck constantly in hopes that this will help. My doctor had tried given me less Botox on the right side of my neck because he noticed I was really struggling to hold my head up. I am concerned and self-conscious about the difficulty of holding the head up. If anyone has any other ideas, I would love to hear them also.
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Comment by Calif-Carol on January 9, 2010 at 1:23pm -
I use a soft neck collar if the head drop is mild, otherwise I just have to manually hold my chin up. If I am sitting or standing, I can usually hold the head up, but as soon as I start walking, I can't hold it up & see properly. I do neck stretches & some exercises. Thanks for your comment chyvnneb.
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