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initial spasms

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steve_2016
steve_2016

Hi

?I have had very infrequent and mild tiny spasms very infrequently in my left cheek. these have recently become more widespread on my left lip, cheek and down slightly below my mouth. Ive had no eye twitching. I have been referred to a neurologist who I will see in about 2 months - did anyone else's HFS start this way ?

Thanks

?Steve

0 likes, 3 replies

3 Replies

  • carol10149
    carol10149 steve_2016

    Posted

    Hi Steve it sounds really unusual for HFS to start this way,usually starts from outer eye lid and gradually works down the face Or it can start from the jaw and work its way to the eye I would advise you to look on the facebook forum You will get loads of advise and meet lots of lovely people who will be happy to guide you.
  • Roseann
    Roseann steve_2016

    Posted

    Hi Steve, this doesn't sound like the normal presentation of Hemifacial Spasm but I have heard of some atypical cases where the spasms start in the mouth area.  I am sure you can't wait to see the neurologist to get a better understanding of what's going on for you.  If you really need an answer and you can afford it then you could always go privately to see a neurologist or neurosurgeon who specialises in this area - best to insist upon and MRI scan - you will pay about £700 for consultation and scan if you go privately.  The Facebook Hemifacial Spasm International Support Group or the Facebook Worldwide Support group will almost certainly be able to offer you suggestions as to who you should see, depending upon where int he world you are.  If you are in the UK then then a lot of us have had positive consultations with Nik Patel in Bristol. 

  • WindHurt
    WindHurt steve_2016

    Posted

    Steve - HFS does not start like that. What you have is probably a fleeting facial tic.

    One symptom pathognomonic of HFS is vibration in the ear. HFS started as a mild twitch in the left upper eyelid in the very beginning. Later on the eye muscles contract hard and closes the eye uncontrollably. When you smile, eat, blow, feel anxiety, the eyelids close forcefully and the ipsilateral facial muscles pull you face including your philtrum.

    It happens more if your head looks down.

    I wont waste money on an MRI.

    There is currently no cure. Just live with it until a cure is found. Operations might not work as reported by some sufferers here.

    It is probably due to a hypersensitive trigeminal nerve.

    Lets hope your symptoms remain mild and disappear in time.

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