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Support Group for Hemifacial Spasm sufferers?

Posted , 26 users are following.

Guest
Guest

Hi there,

I've had Hemifacial Spams for two years now. They can get so bad the whole of my face is pulled to one side making talking and eating difficult. It's horrible as you're trying to 'fight' your face and when people notice - it's just the worst feeling. sad

I would like to keep in touch with fellow sufferers as I have no-one to relate to and to talk to about it who really understands what it's like. Does anyone know if there is a UK based support group I can join? I wouldn't feel so isolated and it might help me to cope better.

Hope someone can help :D

Thanks x

1 like, 34 replies

34 Replies

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  • bea52
    bea52 Guest

    Edited

    If you have not already become a member of the International Hemifacial Spasm Support Group on Facebook, please consider becoming a member.  (There are two groups, but I find the International one more helpful to me.)  The resources on this site have been immensely helpful to me.  In the "photos" section, you will find videos with several doctors that show MVD surgery and discuss many of the advantages and disadvantages of surgery, botox, and other alternative therapies.  After a year and a half of progressively worsening symptoms, I have personally made the decision to try the surgery and am scheduled for October.  Good luck to you!
    • Aurura
      Aurura bea52

      Posted

      Thank you for your reply I will try on those groups
    • chris5rich
      chris5rich Aurura

      Edited

      Hi everyone, it has been five years since my last post, I have been have botox every 4 months, however the effects dont seems as good anymore and my face is very lopsided, with my right eye closed most of the time. My twitching and pulling has spread to my neck and shoulder area and effects my hearing with a constant wooshing noise in my right ear.

      I have realised that with my clotting disorder any surgery would be to much of a risk.

      I was very down about this to start with and was always trying to hide my face when talking to people, but I am slowly excepting that my face moves when it wants to and people will just have to accept me as I am, (or there not worth bothering with). I always joke that one day I am going to get punched for winking at someones girlfriend or wife.

      I wish everyone all the best and good luck with whatever treatment they have.

    • madulla10037
      madulla10037 bea52

      Posted

      would be very interested in finidng out the following about the surgery:

          1.   how did you find the doctor? and how did you research the success rate of the doctor?

          2.   When did you  have the surgery, and how are you doing?

  • Hwb330
    Hwb330 Guest

    Posted

    I've had this problem for 2 years and have tried everything , accupuncture,botox shots supplements etc... nothing works it's so debilitating and it makes me just want to hide from everyone , I so desperately want a cure for this problem , there are days when I actually just want to end it all , it's a terrible thing

    • geraldine02139
      geraldine02139 Hwb330

      Posted

      Hwb330 yes and not smiling any more because a smile brings on a spasm absolutely horrible a total personality changer

  • chris5rich
    chris5rich Guest

    Posted

    Hi D, I understand totally where you are coming from, it took me a few years to get use to facing people, I don’t think it will ever get easy. My attitude now is not caring what other people think, if they are worth bothering with they understand. If you do need someone to communicate with I can always give you my email address. Like you said it’s very hard for someone who doesn’t have these spasms to understand. Please feel free to contact me through this site, never give up. I have been serious I’ll for 12 years now and my mates is Keep smiling, even if only one side of your mouth works. Chris
  • madulla10037
    madulla10037 Guest

    Posted

    I have had HS for about 4 years, Just came on. Took some neurological medicines with no help,

    Then started botox - which helps, but only temporarily. My neurogolist was very conscience of making sure my face does not look crooked with botox, but it is is still noticeable  by all.  The twitching stops, and makes it bearable, but have to do botox every 3- 4 months.

    I am now looking into the Microvascular decompression surgery. Not sure if I am going to have the surgery, but am doing research

  • geraldine02139
    geraldine02139 Guest

    Edited

    I have hemifacial spasm for 3 years - mine is caused it seems by nerve damage in my face following a tooth filling - I had botox twice and my face collapsed and I looked awful for 8 weeks but first time it actually lasted for 7 months I had it second time my face collapsed again and I looked awful for about 6 weeks but it only last about 4 months before spasms returned - I havnt bothered with it since but I can definitely say the spasms are much worse with tiredness or stress and in menopause sleep issues are common and make it much worse - can anyone recommend anything natural to help I tried hypericum 30c and that helps a bit and magnesium unfortunately made no difference to me at all but I'd really appreciate any assistance I think whats very sad is the fact that I can no longer naturally smile because as soon as I do the spasm starts it affects my speech slightly and sometimes it spasms during the night and can be a real nuisance I was almost hoping it was from the cranial never so that I could have surgery but it wasnt so I basically have no cure for it other than just put up with it or get botox which I really didnt like at all

  • Jimo2020
    Jimo2020 Guest

    Posted

    Hi

    i have hemia facia spasims on the right side of my face for many years. I get the injections every 4/6 months. I am located near Philadelphia PA. I am looking for a Doctor that has a good track record with giving injections. my old Dr has retired and i need someone that will not give me black eyes or worse cause my eye to stay open and feel stressed and pain. your suggestions are all welcome. Thank you

  • olivia92992
    olivia92992 Guest

    Posted

    Hi, just recently made my decision to have mvd after suffering for 10 years with this condition. Mine is on the right side. I at first was told it might be blephospasms. Then, later I was told it was Bell's palsy. Found out in 2010, no , it's probably HFS. Took botox off-and-on for 7 years. Just couldn't stand it anymore. So since Covid-19, no botox injections. Finally got the courage to decide on the surgery. Off botox since June 2020. Went in March for my MRI-A after finding a doctor at Northwestern Memorial that I've got confidence in. And was given a surgical date of Friday, August 13th, 2021. I have a family reunion date of June 26th. I'm going to pass on it. Have become very introverted but I can't stand the questions like "Did you have a stroke? etc. So I'll wait til after my surgery to let my family know what I've been going through bc they don't understand but I know they wish me the best in blessings. But not ready to share this just yet. Feels so good being able to vent. Thanks so much for listening, y'all.

  • carole09397
    carole09397 Guest

    Posted

    hello,

    i have decided to also look and see if a support group is out there and have come across this.. so hopefully we can all support each other.

    I am hearing impaired and also now have had hemifacial spasms for approx 8 years ..

    i had a fall while skiing and luckily had a helmet on, my side of head was taking the force as i fell down the steep hill.. luckily i was fine just bruised. that evening i noticed everytime i laughed or smiled i had a tremor on my left side... & so it all began!

    mine would be with me for up to maybe 2-3-4 months a time and go away suddenly.. phew! however this year in feb 21 it came back and i still have it! 😦... Tablets have not helped me, & i had my first botox 8 weeks ago which did not work in fact they are worse!

    i am beginning to feel quite conscious of this now as they are more often all day and also at night if i wake just lately i notice it is affecting my speech at times,

    i just want to feel normal again and have no worries.. & now looking at how many others have this condition..

    has anyone else had trauma related injuries to the head that has caused hemifacial spasm to start & go away and keep reocurring ?

    would love to hear how some of you suddenly have this condition.

    thanks and keep strong vibes sending to us all..

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