My unfortunate experiences with HFS

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which had started appearing  intermittantly in around 2012 has grown more consistant to where it's pretty much 24/7.  Happy to at least know that it rarely affects both sides of the face, so my neurologist tells me.  I have talken Botox injections - especially in the eylid area - for almost 2 years and have founf it to be a complete waste of time. I am a Veteran and am fortunate to have the  treatments without having to co-pay so far. I sympathize with many on these forums - this disorder(?) is very new to me.

I have read through many of the posts here discussing their experiences with it and how they cope or try to overcome the problem with little 'tricks' or rituals that are somewhat successful in abating the twitch to some extent...but not permantly. I can understand that my methods will not work for everybody, butI would like to share with those what I have found to completely eliminate twitching (for a stretch)  when applying

these little antedotes. Here are 3 that seems to work for me :

1. Taking quick deep breaths through the nose for about 30 seconds.  This always seems to work and not sure why. Am I doing something to add oxygen to the blood which has a direct realtionshipt to the vein that interferes with the facial nerve? Interesting though, but it's not something I can regular do throught the day without getting strange looks from people. Perhaps taking a pill that would increase the oygen levels  in ones head can be the answer? No such pill, one would imagine.

2. Stretching/twisting the neck vigorously for about 30 seconds to 1 minute. Found this to be very successful, but again, to continously do tis through the day.....perhaps a daily ritual of neck excersizes would help to make the twitching go away for good.  I have a very thin /pencil neck like

physical appearance so I wonder if it is related?

3. Splashing hot water on my face. Of all the 'tricks', this one without a doubt, is the most effective. With the previous 2 methods, it took about 2-3 minutes before the twitching stopped completely. But with this tactic, it was instantaneous. And lasted for at least 10-15 minutes. At first, I thought  it was a coincidence , as twitching does abate for a stretch many times in a normal day. But I have found that whenever I wanted a sure fast cure for a stretch, a splash of very warm to hot water would do the trick. Has anyone here experieced this? 

To add further to the warm/hot water method to the face, would a continuous application of heat to this area completely elimnate the twitching?  I have yet to come up with an idea that can be used in place of hot water. Thought about using those 'heat' creams that are applied to aching joints but it may have side effects when applied to face/skin area

like a rash, for example.

Honestly, I am not the type of person to come to any discussion forum and complain/moan about aches & pains and situations like HFS. I want to be as helpful as I can to find a way to overcome this without having to go through the MFD procedure.  I wish only the best for those experiencing this condition and to learn from others about how they overcome and get on with their day to day lives.

thank you all, and God bless you.

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  • Posted

    Thank you so much for your comments and helpful hints. I really appreciate them.

    I have found that taking Niacin. Staying hydrated and plenty of Magnesium helps me. I take a Chinese Herbal supplement seems to help.

    Thank you and God bless.

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  • Posted

    Hi 'Skypuppy'

    I'm very interested to hear your ideas and am sure others will want to give them a go.  Thankfully I am now 'out the other side' after having surgery a couple of years ago but I know that I would have tried anything when times were tough.  Are you also a member of the Facebook Hemifacial Spasm International Support Group I wonder?  There are a lot of US members on that site and heaps of well researched information to which you could add with the above ideas.  My other question is whether you have ever considered surgery?  The US, I believe, has the very best surgeon in Dr Sekula in Pittsburgh and his success rates are in excess of 90% which is pretty impressive.  You must have been through so much as a veteran but am sure this 'small thing' punches well above its weight in how it affects you.  Hope you will continue to feel positive and find answers.  God bless you too.

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    • Posted

      Hi Roseann, at this moment I am having a 'battle' with the VA medical staff and they're red tape bureaucracy. They're insisting I continue with the Botox injections. I don't think they want to lay out $$ for the surgery.

      No, not a member of the Facebook site. Will check it out, thanks.

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    • Posted

      Hope you win this battle Skypuppy!  I definitely know of another veteran who managed to have MVD surgery - she is on the Facebook group I think.
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