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Hemifacial spasm triggered only by moving my lower lip

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paul4883
paul4883

For the last 10 years, when I talk, the right side of my face twitches. By talking to myself in front of the mirror I've managed to narrow down the trigger. I found that words with 'b' or 'p' in them cause the spasms, and then I narrowed it down further to realise that the trigger is actually the movement of my lower lip. Everytime I pull my lower lip down by contracting the muscles between my lower lip and chin I have a hemifacial spasm. Any word contain a 'b' or a 'p' therefore results in this seriously embarrassing spasm.

This spasms have completely ruined my life. Everyone I talk to notices it and it's seriously embarrasing. Not only that, it's annoying to feel it all the time.

I don't get these spasms at rest or any other time, they are purely down to movement of the lower lip. It's mainly the Lavator Labii Superioris and lower Orbiculoris Oculi that are twitching (I guess).

I've seen a GP about this. He made me go private as he said it was nothing to do with NHS. The private doctor said I shouldn't be on private, as it could be serious, so he ordered a head MRI on NHS, which I had done, but that was 2 years ago and nobody told me the scan picked anything up so I guess there's nothing serious.

Due to the severe embarrasment and depression this is causing me, I'm at a loss. This is made worse by the fact that I can't find any information on the internet about hemifacial spasms purely induced by another nearby voluntary muscle contraction. Please can anyone advise?

0 likes, 9 replies

9 Replies

  • gwen90321
    gwen90321 paul4883

    Posted

    Hi Paul,   I know how it frustrating it is as mine started with my right eye twitching, some days it can be mild or not at all for long periods but most days it twitches

    so much.  I can be embarassing and it takes everything from you confidence wise,

    but you have to be strong and fight it, I think speak to you GP again, I am sorry I 

    cannot offer any proper advice.  I started last year, this year it got worse, I saw

    the neurologist who did some simple tests and asked questions, when I mentioned

    a scan he said there was no need, as it's gotten worse I have spoken to 2 different 

    GP's at my surgery and both have said the neurologist doesn't think that a scan is

    necessary.  I have an appointment for 19th Nov for Botox injection.

    • paul4883
      paul4883 gwen90321

      Posted

      Thank you for your support.

      Botox has interested me, but I've heard stories that it could cause drooping. This is probably extremely rare I guess.

      Did you have to go to the GP to ask for Botox? or a private clinic? Also how long to 19th November from when it was first requested?

    • gwen90321
      gwen90321 paul4883

      Posted

      Well Paul the thing is I did not request the botox, I had an appointment in

      about March at Queens Med in Nottingham, the neurologist suggested the botox.  I think that the NHS are trying to cut costs cause 2 other people I have spoken to say that they had to go private to get MRI scan and proper advice.  Some people have had the  operation cause as you

      say have found that the botox may work the first few times but after a while is not as effective. This forum normally has good advice.  I have also heard about that botox could cause a droop.  I had originally thought 

      that Natural healing therapies might work but have been advised against

      it, maybe it's up to us to try things we think might help.

  • Williamsmummy4
    Williamsmummy4 paul4883

    Posted

    Hi paul, im not a doctor but it very much sounds like you may have atypical hfs which starts in the lower face and progresses upwards. This is rarer than typical hfs. It certainly is an nhs matter and your gp should be able to refer you to your local neurology dept for more help and advice as general gps have very little knowledge on hfs.  I was only diagnosed myself 2 weeks ago and I am waiting for my mri results. When my spasms are particularly bad,  just by moving my upper lip ( trying to pout) can cause my eye to close so one muscle group can affect others from my experience.  

    caroline

  • Roseann
    Roseann paul4883

    Posted

    Hi Paul.  This sounds awful and it doesn't sound as if you have had a proper diagnosis.  Please join the Facebook Hemifacial Spasm International Support Group and ask members there if they know anything about this rather unique trigger for spasms.  We can all empathise with how tiring, embarrassing and debilitating spasms can be.  Scans need to be read by an experienced neurologist or neurosurgeon with extensive experience of HFS.  I went privately in Bristol (Spire Hospital, Nik Patel) initially  and I got a very good diagnosis and explanation.  Not sure where you live but there are a number of good neuros in the UK.  Sometimes you need to advocate very strongly for yourself and get a second opinion if you aren't happy with what you are being told.  I really hope you will find some answers.
  • gladys39971
    gladys39971 paul4883

    Posted

    I have had botox last Thursday, and I got no result but was told it might take around 2 days to kick-start.  I am still getting the symptoms but must admit slightly less frequent.  The surgeon said he gave me a standard dose for first time, and then he would increase or decrease accordingly in 3 months time.  I hope things will work out for you. I have been suffering from HFS since August, last year and I am getting used to it Agree that it can be quite embarrasing at times, but I still go to drama classes and try to live a normal life and much as possible. I wish youthe best and remember you are not alone
    • Roseann
      Roseann gladys39971

      Posted

      Hi Gladys.  Hope you do get at least a bit of relief.  I've noticed that someone from Malta has joined the Facebook International Support Group on behalf of a friend.  Maybe you could check out and make contact if not someone you already know?  Thanks. 
    • gwen90321
      gwen90321 gladys39971

      Posted

      Hi Gladys, I refere to your discussion above, when you said the twitching did not subside after the first injection, you waited 2 or 3 days but it was

      the same, well I had mine done last week, this is the 3rd day and you know the spasms have been worse after the botox, I'm  still having them,

      Have you had your second lot and has it improved?

    • gladys39971
      gladys39971 gwen90321

      Posted

      Hi Gwen. Yes I had my second botox injection in February and should be due for my third one in May but am going to be abroad for awhile and will have to have it in June. My second shot had no effect at all, and the twitches are getting worse. I will tell the doc to increase the dose and see what happens, will let all know the result. Thank you so much for your concern, as I feel very much alone in this.
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