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I have had HFS for 10 years. I have tried Botox for the last 7 years. I dislike the lopsided effect

Posted , 5 users are following.

barb_99377
barb_99377

. I am now taking SPZM, magnesium,Advil and niacin. I do yoga and that helped a lot for awhile.  I tried acupuncture but that did not help.My twitch gets worse and night and makes it hard to sleep...anyone else notice this?

0 likes, 14 replies

14 Replies

  • Roseann
    Roseann barb_99377

    Posted

    Hi Barb.  I had HFS for 9 years and in the last year I had twitches day and night; I saw this as the progression of the condition and nothing made it better for me unfortunately.  I'm sorry to say that I see it as 'clutching at straws' to try to help this condition with alternative therapies.  I see HFS as being like an electrical fault which is causing 'sparks'; two wires (the nerve and the artery) are touching where they should not be touching and the protective covering of the wire (the nerve) has worn away, meaning that the facial nerve is fully exposed to the effects of the artery which is touching it.  If there is a fault then that fault needs to be rectified via surgery if that's at all possible for you.  It took me many years to get round to this way of thinking and I'm sorry if I am sounding dismissive of your attempts to make life a little better.  Wishing you all the best as you fight this condition; and if you find a way of relieving things then I know a lot of people would love to know about it.  
    • barb_99377
      barb_99377 Roseann

      Posted

      Good morning Roseann, thank you for your reply. I have seen my neurosurgeon and he said I am not a canidate for surgery. I am trying everything else to get some relief.

      Take care.

    • Roseann
      Roseann barb_99377

      Posted

      Awww, I am so sorry to hear this Barb.  Do you think this would be the opinion of all surgeons and might it be worth getting a second opinion on this?  Please excuse my forthright reply to your first post; I only have my own experience to go on and I tried so many things to get relief before eventually biting the surgical bullet.  I really hope you find something.  Someone on another forum suggested that total inversion (hanging upside down like a bat!) helped her....................   Happy days! 

       

    • barb_99377
      barb_99377 Roseann

      Posted

      Thanks Roseann, I will try hanging upside down!! I appreciate all suggestions!
    • WindHurt
      WindHurt barb_99377

      Posted

      I won't be surprised it will help quite a bit as it gives the trapezius muscle some rest and stretch the sternomastoids. i should be doing this more often. As I don't have a inverter, I hang over the bed and also do nods and rotations, at intervals of a minute at a time.

      Would like to hear more of this from you please.

    • barb_99377
      barb_99377 Roseann

      Posted

      Thank you Roseann for you reply... I have not tried to find another surgeon because of our insurance. We have to stay with in our system .

      I hope you are well and wish you a happy day!

    • Roseann
      Roseann WindHurt

      Posted

      Sorry not to be able to offer any more info on this WindHurt.  I just read on another forum that someone had tried it with a little success.  I think she used to hang upside down on the settee with her feet up against the back cushions, but please don't hold me responsible if this goes wrong!!!
    • WindHurt
      WindHurt Roseann

      Posted

      It helps, and I support her findings shared somewhere you came across. In Japan an osteopath did have me on the Inverter but I think the duration was 2 minutes.

      The non-surgical "camp" for HFS sufferers will discover aids for coping in their own time, and being a very active member here you will know. Thank you.

    • WindHurt
      WindHurt barb_99377

      Posted

      When I hang over my bed, I rotate the head as well and there is a lot of grating noises. I use Arthritis cream as well behind the head at the level of C1and on the painful muscles. These muscle overwork supporting the weight of the head, so lying down more often will help to rest them against gravity.

      I will ask a friend who travels to China often to find out more about this condition. A non-surgical cure would be well received!

       

    • barb_99377
      barb_99377 WindHurt

      Posted

      Hello Windhurt, any thought on supportive pillows for sleep?? Laying flat seems to really get the twitching flinging . So hard to rest or sleep!!!

      Any helpful hints are appreciated!!

      Have a great day!

    • WindHurt
      WindHurt barb_99377

      Posted

      The mattress is very important. It must not be too soft or too hard. A latex or modified latex mattress might be very good but mine is just a chiro one.

      The chest must be up and not sunk, so that the thoracic and cervical segment are in good alignment.

      No pillows will work well if that segment is wrong. A low pillow will do fine. Sleep towards the right if you have left-sided HFS and the ear vibration will stop. If it does'nt, you have not done some stretches to loosen the neck and head muscles throughout the day.

      The touch ground stretch will help with a quick photo !

      And you can learn to smile in a different way by practising in a mirror when you get that temporary relief.

      Talk less, don't try to smile a lot, don't pout or blow. Learn to cope...and take up golf. smile

  • AyannaButler
    AyannaButler barb_99377

    Posted

    Ask about high csf pressure and its relation to hfs. I got a spinal tap (lumbar puncture) to test my pressure, It was high and I was prescribed diamox (acetazolamide) and the full contractions of the left side of my face have stopped. It has only been 2 weeks So not sure if this is a cure but it has helped so far.
    • barb_99377
      barb_99377 AyannaButler

      Posted

      Thank you for the information. I had never heard of that before!!

      All the best to you and I hope you stay spasm free!!

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