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facial twitching

PostPosted: May 28th, 2010, 5:27 am
by CAM1516
Hi everyone, ive not posted on hear for almost a year, just trying to live with my symptoms. I have had facial twitches now for 16 months and ??BFS for almost 3 years. Whereas I do have random twitching all over in every muscle group, I find these mostly sporadic thumpers with the ocassional hot spot lasting a few days. My real problem and one I feel has prevented me living an otherwise enjoyable life is the blasted eye lid, (mostly upper and lower left), twitching. and sporadic cheek, nose, inner ear, neck twitching. For some reason I cant cope with these, mostly I think because they are there nearly all the time and on thin muscle near more nerve clusters. I was started on Coenzyme Q10 100mg od in november which I thought had some effect as my twitching did decrease. However recently it has come back strong so I wonder as is usuall with us, if it wasnt just coincidence??
I am now awaiting my 4th appointment with a prof in neurology and I'm going to explore the use of botox for the facial twitches. He agreed this could be an option of control on my last visit.
I find it suprising in our community that more people, have not explored this option. After all botox is prooven safe and effective for freezing muscles of the face that cause wrinkles, as well as its use for people with MS related contractures and its use in Blepharospasm in the eyelids which I think either I have or is related to BFS. botox for Bletharospasm has been prooven to be over 90% effective although it does have some effects such as lid droop in 12% at least this is a tempoary effect and might be worth a life without twitching facial/eye muscles. I know its not practical for the Larger muscles but why have others not experimented with this option. I live in the UK so recieve all my treatments free on NHS mabey that is the reason and I honestly sympothise with my American cousins who rely on insurance companies and self funding, mabey that is the reason for the lack of interest in this option.
Thanks for reading this extreamly long post. I would welcome everyones thoughts and feelings on this.

Blessings to all, may a cure and end to this frustrating disease be found soon.