About 2 years ago in February 1996, I had a series of headaches that even Tylenol would not give but slight comfort. By the end of the month I problems controlling my lip muscles as I ate or drank. Even to the point where I would spill liquid from my mouth as I drank. I went to a neurologist and he could not find what was causing the problem.
Over a period of time it seems that the uncontrol of facial muscles shifted from one area of my face to another. Currently I seem to have uncontrol of muscles that causes me to froun and press my lips tightly together when I don't want to. Especialy when I am tense. However, even when I am not tense, I still have some uncontrolled facial movements that make me look like I am tense or mad or trying to hold back a laugh.
I have also seen a neurologist at the University of Cincinnati. No one can find what is causing the problem and have also expressed that they have never seen such a thing. It is something that is very hard for me to explain. If I should face you as I explained my problem, you probably would not see it at first. As we continue to talk, you will see what I am talking about. The headaches are gone but my muscles around the temple area seems to feel very tight at times especially when I fight hard to take control.
I know you cannot give me any answers here, however I am willing to come there if necessary.
What you describe may sound very much like orofacial or oro-facio-mandibular dystonia (also called Meige syndrome / Brueghel syndrome). While the majority of such patients have no underlying neurological disease, a small number do have underlying degenerative or heredofamilial disease of the basal ganglia causing the problem.
It is essential that you see a movement disorder specialist who would have very good insight into the type of problem you have. Besides excluding a potential underlying neurodegenerative disorder, such a specialist may also be able to effectively treat the facial movements that you have (if they are sufficienty bothersome) with methods such as Botox injection.
Since it is not impractical for you to visit Cleveland, I strongly recommend Cleveland Clinic neurologists Dr. R. Stanley Burns and Dr. Erwin Montgomery, who are nationally renowned experts on movement disorders. You could call (216)444-5559, or (800)223-2273 for an appointment.
We look forward to seeing you!
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