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Hemifacial spasms

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Guest
Guest

I hate it its driving me mad. It seemed to slow down for a few weeks and I thought maybe it had finally come to an end....spoke to soon its back with a vengence !

I sit there trying to control it and it just seems to fight me back. Its starting to affect my speech as well.When Im talking it sets off dragging the corner of my mouth up and I have to stop talking.I go to give my grand daughter a kiss and it twitches like mad and my eye closes ...I really hate it. Ive got an appointment for May 15th to see a doctor hopefully he will give me Botox . We are getting our grand daughte christened the end of June and I know I wont let anyone take any pictures of me as you can see it on the picture one side of my face doesnt look right. Sorry to go on but Im really sick and tired of it happening all the day 24/7.

0 likes, 3 replies

3 Replies

  • Monal
    Monal

    Posted

    sound like you have DYSTONI. Botox injections will help. Do you have them? :idea:
  • Guest
    Guest

    Posted

    I have suffered with HFS for about 7 years now, with botox injections for the last 4 years or so. I am 44 so got it relatively young.

    The Botox helps, and has cut down the twitch, but not made it leave me. Also, the area of the spasm is now much larger but mainly the left eye and check, touching the corner of the mouth.

    I recommend you try it. I tend to feel the spasm more than people can see it, but it does get worse when tired, worked up or if concentrating visually on a computer for work.

    Be calm and doing activities where I lose myself help - such as manual tasks, such as gardening, exercise and just a stroll with my daughter. The more worked up I get about the spasm, the more it bites back, so try and keep calm. Also make sure you get enough sleep. I know it’s hard, but don't waste time in self pity and asking why me, it just works you up and you twitch more. This is for life, and there are folks out there with bigger facial issues to cope with.

    I considered the surgery and still do now and again, but that is a big step and the botox is making it tolerable. Although, the side effect for me is a loss of some elements of expression, for example my smile doesn't go up so far on the left now, but at least I can smile.

    All the best with whatever you decide.

  • Guest
    Guest

    Posted

    Hi there,

    I know how you feel!! It's so frustrating!! I've been suffereing with HFS since I was 26 and two years on they are now worse than ever. I began botox treatment a month ago. They start with a low dosage to see how the HFS reacts. My spasms affect the left side of my face - not just around the eye, so I know what it's like having your mouth pulled to one side not being able to eat, drink or talk properly. The whole side of my face 'caves in' on bad days. Anyway, I recommend botox as the way forward for you. It's not ideal but it will alleviate the spasms. Mine disappeared for two weeks. I will admit they started again; it just means I need a higher dosage of botox. Also, If you're unhappy with the results - botox lasts three months - so it's not permanent!!! It feels strange but compared to the nightmare of HFS it's a much better alternative.

    Please stay strong. My thoughts are with you x

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