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Facial Twitching- Still looking for a diagnosis

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krnflakgrl
krnflakgrl

Hello all! I'm in the states and have been dealing with ongoing (off and on) facial twitching since March of this year. Mine started as a constant non-stop fasciculation in my smile line on the left side of my face. Then over a period of a few months, both of my eyes at various times had twitching- pretty constant in top and lower lids.  Also around my eye and eyebrow area- very fast fasciculations that would go on for sometimes an hour at a time.  Things died down for a few months, but now I'm having some pretty serious twitching around my mouth on both sides. This time the right side is worse, but I have it on the left as well.  I was wondering if any of you have had twitching on both sides of your face.  My doctors are clueless.  When it starts, it looks like a pulsation under my skin, or like there are electrodes attached to my face.   I haven't had any of the pulling up of the cheek, or the closing of the eye- so I'm wondering if HFS is even what is going on.  I've been at a loss and very scared at to what's happening.  Things are so much worse when I'm tired, or stressed, and seem to be a thousand times worse when I'm looking down at my phone.  Any help or similar stories would be greatly appreciated!  I have another appointment with a neurologist on the 11th of this month- have had an MRI and a Lyme test and metabolic blood tests when all this started- all were negative. Since HFS seems to the be the closest thing I can find to what is going on- I was wondering if anyone had experienced anything similar.  Thanks so much!!!!

0 likes, 27 replies

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  • sharon81449
    sharon81449 krnflakgrl

    Posted

    Hi there, mine started as eye twitching in my left eye back in May last year, went on for weeks, finally went to docs who told me to get an eye test.  Long story short, I did need glasses but it made no difference to eye so I went back to doctor and was referred to a neurologist and had an MRI scan (but with contrast) - this is a dye injected into your bloodstream and gives a clearer picture.  I have been diagnosed with HFS as it showed a loop pressing against 7th nerve.  I am still pretty much just twitching still now - had one round of botox so far, which has helped, but from sounds of it, I am still early on in the HFS journey.  Might be worth you getting an MRI with contrast if you haven't already had it.  There is a fab Facebook site on HFS - you should join there, it might help give you some answers and reassurance as I know how scary it is xx
  • Roseann
    Roseann krnflakgrl

    Posted

    Hi 'Cornflakegirl'  (sorry, nearest I can get to a name!), so sorry to hear about your facial twitching; it must be so annoying to say the least.  From what you have written it doesn't sound like classic HFS, but that's not to say it's not because some people present with atypical symptoms.  I am a member of a number of forums (please also join the Facebook Hemifacial Spasm International Support Group) and from what I've read of other people's experiences you sound to be experiencing what is known as blepherospasm, but I can't quite understand why the mouth is joining in.  It's very unusual to get HFS on both sides, but it's not unknown.  I would suggest that you go to see one of the gurus on facial movement disorders if you possibly can.  Dr Sekula in Pittsburgh is kin pin in this area from what I've read.  There is a lot of ignorance, particularly about HFS in the medical profession and it's worth trying to see an expert to get a proper diagnosis.  I believe Dr Sekula will do Skype or look at your MRI remotely and give an opinion if you send it to him but not sure of the costs.  Anyway, I am rambling on and not sure if this will be of any help.  If you were to join the FB group and post a video of your spasms then members are pretty good at giving their opinions!  Take good care and best of luck to you.
  • krnflakgrl
    krnflakgrl

    Posted

    Thank you both! I have actually had a MRI with contrast that was negative. I know of Dr. Sekula as well, I did a LOT of research when this all started

    back in March. I'll have to see if I can send him the

    MRI for review. The only other piece that may prove to be helpful is that I had an autoimmune test that was very borderline positive in August.

    My docs ignored it due to it being such a low positive. That may be an important piece of the puzzle. Thank you both for your replies! It's so nice

    Click here to view image

    Things start happening to your face- it's terribly frightening... 

    • sharon81449
      sharon81449 krnflakgrl

      Posted

      You are definitely not alone, there are lots (sadly) with this condition, but there is help and support out there, and that will keep you going, whatever the diagnosis is, so don't despair, life too short xx
  • camas
    camas krnflakgrl

    Posted

    When my HMS began it was located on the left side of my face right below my cheek bone.  It was a very subtle twitch, but rapidly became worse and painful.  Whenever I would bend over to tie my shoe, work on my car, etc. the twtching/pain would increase.  I could not sleep on my left side, because, again, the twitching/pain would increase.  I found that the majority of neurologists that I went to were very complacent and arrogant.  They were very quick to prescribe a presciption drug rather than to do their job and find where the artery was putting pressur on the nerve that was causing the HMS.  I had two MRI's and the neurologists in Spokane "didn't see anything."  When I contacted and made an appointment with a sugeon that was very experienced in hemifacial spasm/trigeminal neurolgia I started to get some answers and after surgery the spasms were gone.  Because of the eight years of constant twitching I still have pain from nerve damage.  If I were you, I would ask the neurologist where the nearest neurological medical institute was located that have specists in HMS.  I would then ask your neurologist to give you a refferal to that medical institute.  You have to be proactive. 
  • krnflakgrl
    krnflakgrl

    Posted

    Thanks so much for your reply. I plan on specifically asking about HFS when I go on the 11th, and asking about specialists in that area. Since my twitches have been all over my face, with a few consistent hot spots- it's a perplexing thing. My eyes had me scared to death as they twitched non-stop from March to July earlier this year. They have since stopped, but my mouth is now going crazy. It's not a typical presentation for HFS, but it's

    The closest thing I've found that is remotely similar. When this all started, my smile line twitched non-stop, and I mean constantly- no breaks-for two plus weeks. I thought my mouth was going to do the same thing, but it went in hour- 2 hr spans of constant twitching.. Now it's sporadic 4-5 times an hour..after a week. 

  • kristina11148
    kristina11148 krnflakgrl

    Edited

    PLEASE respond and update me as to what is going on. I have been having the same symptoms and test for 2 years now.  I am desperate for answers!
    • krnflakgrl
      krnflakgrl kristina11148

      Posted

      Hi Kristina. I actually never got an answer and gave up. March will be three years for me and I still twitch. All over. Whole body. My face is the worst... I've had multiple MRI's, EMGs, bloodwork for autoimmune, all of it.. All negative. I gave up. I just live with it. Can't afford to keep going to doctors, having tests...

    • krnflakgrl
      krnflakgrl kristina11148

      Posted

      Also- BTW.. I even traveled to Pittsburgh to see Dr Sekula who is a specialist in HFS. He didn't think it was HFS either and had zero idea what it was...

    • Gracielove
      Gracielove krnflakgrl

      Posted

      Hi there,

      I'm glad I came across your post. Your description could have been about me. I began with facial twitches - cheeks, around eyes, lips - on both sides. I also get them throughout my body, random places. I breastfed for a year and wonder if a deficiency could be the cause. Have you tried magnesium by chance? I'm so frustrated and tired of the worry.

    • krnflakgrl
      krnflakgrl Gracielove

      Posted

      I have. It did nothing. I've tried everything- believe me.. I just live with it now...got tired of looking for answers. I think hormone problems have a lot to do with mine.. I'm in peri menopause....

    • Rose55830
      Rose55830 krnflakgrl

      Edited

      how are your twitches now? i still get them too especially face/head and still no answers either

    • krnflakgrl
      krnflakgrl Rose55830

      Posted

      sorry, Rose, I hadn't seen this. After four years of nonstop face twitching, it just stopped. I do still get occasional twitching, but it doesnt last for months in one spot like it used to. Unfortunately, though, I now have nerve issues all over my body- especially in my pelvis, and they dont know why. I truly think the face stuff was a sign of things to come.

    • Rose55830
      Rose55830 krnflakgrl

      Edited

      are u on medication for it or were u ?

      I've had many tests seens many drs etc noone seems to know what my twitching is 😩

    • krnflakgrl
      krnflakgrl Rose55830

      Posted

      No. I tried muscle relaxers and they made it worse. mine most went away after I stopped worrying about it. it took 4 years, and was replaced with much worse problems. id take the twitching back at this point if i could get rid of my other problems. now when I get a twitch, I dont even worry about it. I made myself sick over it for years, and never got any answers at all. What's really interesting is tbat now that i'm having nerve issues elsewhere, when i bring up the 4 years of facial twitching, they seem really interested....before they didnt even care.

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