20 Months of BFS/HFS?

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duckyduck

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Hi everyoneI've had symptoms for 20 months now, together with hemifacial spasms. I think the combination of BFS/hemifacial spasms gives me unbearable swallowing issues. I don't get any acid reflux problems, just this awful feeling that my throat is caving in, something stuck at times and get balls of mucus (sorry for that). Anyway, lyrica works great for the swallowing and otherwise helps with the twitching/spasms, but could be better. I'm only on a low dose of lyrica 75mg x 2 daily. I am very sensitive to meds, ie can't put any opiate stuff near me - makes me sick (other than codeine), things that do work tend to work with a low dose & I reckon that my body is sensitive to stuff full stop. There is probably a simple answer to the trigger for all this bfs/hfs, but I'm still searching for it.Anyway, I had a bad attack with the swallowing & spasms the other week - lyrica stopped the swallowing issues, but generally spasm were worse than ever & my head felt like it was splitting with the facial spasms. My GP changed my meds to tegretol and said to take instead of lyrica (i had stopped lyrica for a while at the time, then remembered why i took it - almost instant relief within a day when I started it again). I tried tegretol for a few days and didn't pay much attention to anything else, because the swallowing went so bad again so I know in my searches I have seen people taking both, any here? I'm quite healthy bfs/hfs aside so don't want to make myself ill with meds, I want to strike a balance between something that reduces the spasms & something that reduces the twitches. Does tegretol reduce twitching? Anyone have any good suggestions for any other meds that I can discuss with my GP?Thanks
 
I tried Lyrica. It didn't help. I tried Gabapentin, it didn't help. The only thing that helps is Klonopin and that is addicting so I only take if things get really bad. I have heard of many who take Tegrtol and it helped them.
 
I know there is one person on here who takes both tegretol and lyrica and claims it helps him with his twitches immensely. He goes by nocturnus you may try to send him a personal message about it. Hope you are feeling better and I hope the hfs stop bothering you. I know one of our posters on this board had it and he was quite satisfied with using botox to treat it. He goes by Christian-88 but no longer seems to post here but if you look up his old posts his very first one mentions it.Mary
 
Thanks for the replies, I've tried "no meds" and was forced back to lyrica after a really bad episode of swallowing issues. It really helps, around the same time the hemifacial spasms were bad, everything seems to have calmed down a bit since then so I suppose I'll just stick with Lyrica and perhaps have the botox at some point if I get them bad. I've resisted that so far (20 mths now), the twitching doesn't bother me too much either, but the spasms that go with them sometimes aren't very pleasant. I'll perhaps see how things go and speak to my doctor.Thanks again
 
Trileptal (the new version of tegretol) is VERY EFFECTIVE at controlling my twitches. I think it is maybe 98% effective reducing my twitches and delayed muscle relaxations. I tryed lyrica combined with trileptal and it seemed to help, but latter when the doctor stopped the lyrica I could see no change and concluded what was helping me was the trileptal alone.
 

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