So I saw a specialist this week. I have been having horrible facial pain. The muscles in my face knot up. Sometimes I can’t get my mouth open enough to have a good ol’ bagel. So she says stop the botox. The botox is making the neck muscles weak and that is over working my facial muscles. I just want to hear everyone’s opinion and if anyone else has been told this. And then life just goes on. I plan to go back to my regular neuro on Monday for more discussion. But I think I might stop the botox or NOT.

Susan (Susie) wrote:
So I saw a specialist this week. I have been having horrible facial pain. The muscles in my face knot up. Sometimes I can’t get my mouth open enough to have a good ol’ bagel. So she says stop the botox. The botox is making the neck muscles weak and that is over working my facial muscles. I just want to hear everyone’s opinion and if anyone else has been told this. And then life just goes on. I plan to go back to my regular neuro on Monday for more discussion. But I think I might stop the botox or NOT.

Well, what you could do, is stop the Botox (or cancel the next three month interval and move it to the 4th month) and see if your facial muscles improve. If they do, then maybe this neurologist is correct cuz my neurologist talks about how Botox can affect other muscles cuz it makes normal muscles work harder and appear to be dystonic. So, maybe missing a month or two might give you an idea if this is the case with your facial muscles. Now, in my case, I dont have facial pain. I just cant open my jaw wide enough without it getting overly stiff and my tongue will not work unless I have a toothpick in my mouth to keep my jaw still while trying to talk. (Apparently, my tongue muscles and my jaw muscles cannot work at the same time).So, I now own stock in a toothpick making company...lol.. cuz I have to have one in my mouth every waking moment. I have often wondered if maybe I was getting TOO much Botox, and that was causing my jaw muscles to work over-time. Hmmm... something to think about. Hope more ppl come in here and give you some imput!
OXOXO Penny

This botox discussion is very interesting. I must let my daughter-in-law know. Maybe after a while it is too much of a good thing?

Every time Valerie goes to the pain clinic. She talkes the the doctor. He may up the dosage in one area. While lowering the dosage in another.
Example, , , , The horrible tinsion in her neck was [and still does] pull her head forward and down. But getting unjections in the front of her neck. Made it so she could not swallow for a couple weeks. She came very close to choking many many times. Probly more than she admits to me. The problem was that she needed these shots in that area. As much as she needed shots in her shoulders and head. She the doctor cut the dosage in half. It worked. She seems to be balancing a fine line between not being able to swallow. And loosing control of her head placement. She also gets something she calls the head bobble. from the shots in the front and back of the neck. Her head sometimes bobs around uncontrolably like a bobble head doll. It emberasses her horrably. But she’s getting use to it. Because its either that. Or lower the dose so much shes in so much pain she becomes deppressed to the point of scary thoughts and nightmares.
Cervical Dystonia is the hardest form to treat the say. I believe it.....
Even some doctore the claim to specialize in it. Don’t want to treat new pactiants.

Sorry abou my horrible spelling. Ron White says there is no cure for stupid. lol

Well I went back on the botox for the winter. My husband’s idea as he knows how I suffer in the cold months. Plus when my neck tilted back to where I just looked at the ceiling was a good clue. My neuro takes good care of me so some of these specialty docs I have visited have been a frustrating venture but we tried. Don’t we always end up back to the one we trust the most?