Hello all and Happy New Year,
@DodgeAU thank you for your post. In my last post I was getting off of all the meds and trying Botox. First, I did the one injection next to the eye but saw little results (only made the spasm in that direct area not as pronounced but rest of the face still spasm strong). So, I did yet another injection (2 weeks later) in the lower eye lid and unfortunately saw little/no results. I suppose I could have done injections at all of the big trigger points but that would have effectively made the entire side of my face barely movable at all times, which to me would have been worse than the discomfort and embarrassment of the spasms which last only 30 seconds to a minute. So as of today, almost a year post-CK and 6-months post first hemifacial spasm, I am still getting the spasms (now 5-15 tomes/day).
I am holding onto the hope that they will go away with time as seems to be the general feeling from people who have experienced them. Since I have had them, I keep a daily chart of what I am doing, time of day, etc when they occur to try to see a pattern and shape my daily activity around that. The results are in: No pattern! I can be watching TV, laughing, talking, getting worked up in a conversation, working out, eating....no rhyme or reason. And sometimes they occur during those activities, sometimes not. The only constant is I can count on one or two in the morning when brushing my teeth and showering.
Side note: It is shocking how little most ENT's know about this side effect of the radiation. They have all heard of the AN and the types of treatment, but I'd say less than half have ever even heard of facial spasms as a result (and I have seen a LOT of ENT's about this).
Anyway, here's to the New Year and good things to those of us who suffer through this...! Hope everyone gets well soon!