Hemifacial spasms

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Hi my name is Chris, I'm 42 years and live in North Somerset. I have suffered from rightside facial spasms for 2 years now. In the last 2 months the spasms have become more servere involving my cheek, mouth and neck. They are almost constant now, which I find annoying and embarassing. It has taken me hours to write this message as any type of computer screen or bright light, causes my eye to shut over and gives me a headache. I had botox before Christmas, but it had no effect. This may be because they didn't give me the full dose, as I have a blood disorder and they were worried about excessive bleading around my eye.

I would like to know if anyone else has, clexane injections ( blood thinner 100ml twice daily) and has had the full dose of botox, without any side effects.

Chris

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  • Posted

    Chris

    I am 48 and have been treated with Botax for about 10 years. My twitch is on the left, and covers my eye, cheek down to the corner of my mouth. At its worse it makes me close my eye, so sounds about the same.

    The Botax helps a lot, but it took a few goes to get it right, so don't be put off by one attempt. It is not a complete cure, I still twitch, but not all the time and not as bad as before. I have the injections every 3 months; it tends to come back as the effects wear off. The injections are one above the eye, slightly to my left, one to the my left of the eye, about half an inch back, one below the eye to the left, almost on the cheek, and the last just below the tear duct, about quarter inch or so. It works for me.

    Other things that help, are making sure I get a good nights sleep (7 hours min), not arguing with my wife (stress makes it worse), and a glass of wine or two to unwind.

    For me the injection sites are the key, I recently had to change my consultant and the new one took a while to get it the same as the one before.

    I did try the drugs before, but they seemed to make me tired and my mouht felt dry all the time. So I prefer the injections.

    Side effects of Botax for me;

    -my smile is slightly lopsided, but no one but me seems to notice

    -I can't open my mouth as wide on the left side

    -I do not have so many wrinkles on the left, which make me feel my face is not as symmetrical as it should be, but is better than twitches.

    To get more control I can ask for the injection to be lower on the cheek, but I loose more control of the corner of my mouth, which did make me look more lopsided, but I have now got a reasonable balance.

    Hope this helps.

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  • Posted

    Hi Tristram

    Thanks for your reply, I had my 2nd set of botox last week, but unfortunatly they haven't worked yet. Doctors told me they will give it 1 more try in 3 months. I have spoken to a surgeon, but he believes that brain surgery with a blood disorder would be to much of a risk to life. So at the moment I am stuck twitching.

    I agree with your idea of a wine or two and not arguing with my wife is always a good idea.

    I hope everything is well with you and your not twitching to much at the moment. :wink:

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  • Posted

    Hi,

    I'm a 52 yr old male, been getting Botox injections for 4 years now, well, they have stopped being effective, and I have been refered to the neurosurgeon now, (waiting on appointment).

    Botox is good when it works, but, it will not go on working for ever, your body builds up an immunity to it, so then, it's time to talk to the surgeon..

    I'm scared to be honest, but can I live the rest of my life, being embarrased when I meet folk etc, constant spasms, some days good, some terrible, it is a terrible problem, and sitting here typing this, my spasms are going good guns.

    I think if I receive some reassurance from the surgeon, I may well be heading for an operation, just to think, when your put to sleep, and you wake up with no spasms, how great life will be again..what a dream..I worry about loosing my hearing also with the op, I'm just a coward I think..

    I hope your Botox works for you, but be aware, it will just be for 'a while', as you can't keep getting Botox for life, unfortunately, it stops working..all the best my friend, good luck to you all with this problem, hope you find your goal.. :D

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  • Posted

    Hello. My neurologist would not do my botox while I was still on Warfarin following a Pulmonary Embolism as he said that it can cause a huge big bleed under the skin when injecting Botox. I had to come off the Botox and get my INR to below 2 and I had to show him proof of this before he would go ahead with the Botox. Then I had to inject myself with clexane for 4 days as well as topping up the Warfarin dose. . Off Warfarin now so back to normal
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  • Posted

    Hi Harleygirl,

    I had botox injections for approx 5 years, eventually they stopped working for me, so I had no option but to go for the MVD operation.

    I went for the operation in Nov 2011, and as of today, I am still having right side spasms, I'm hoping that through time they will go away !! after plucking up the courage to go for the operation, I was very distressed when I awoke from surgery with the spasms still present.

    I go for a post op chat with my surgeon in mid Feb, so I'll wait and see what he says, I just pray he does not want to do the opration a 2nd time, I don't think I could face the trauma again.

    Now your situation is unusual, I must say the botox wil only work for a short time, it does stop working, so you should seriously consider going for the MVD operation, as, everyone who is receiving Botox at present, are only fooling themselves for the inevitable, the operation !

    I'm surprised the health service alow people to keep receiving Botox injections, when they will have to end up going for the opration in any case, I just wish I had went for it years ago, to save the countless injections in my face/eye area.

    So, do consider asking for the opration, just to save all the injections for what will only have to be done in any case.

    all the best for now.

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  • Posted

    Hi Sean, I can't agree more with you about using botox injections as a long time solution. I remembered asking the doctor who gave me my first treatment, and she said that there are HFS sufferers who have been successfully treated for many years. Would anyone care to vouch for this?!?!

    Had I known then what I know now, I would have opted for surgery sooner too. I had blood clotting under my left eye on 2 occasions after botox injections, each time taking about 4 weeks for them to clear up, which is almost as embarrassing as the twitching.

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