Facial Twitching- Still looking for a diagnosis

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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!!!!

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  • 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
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  • 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.
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  • 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

    to know I'm not alone in my twitching! smile  When

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

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    • 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
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  • 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. 
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  • 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. 

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  • Posted

    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!
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    • 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...

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    • 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.

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  • Posted

    Please find a COMPETENT neurosurgeon and make an appointment. Both sides with spasms is unusual but I'm sure a COMPETENT neurosurgeon is in order. Dr. Raymond Sekula of UPMC in Pittsburgh is someone I highly recommend. He is awesome. Google him. His personal email under his picture on his bio. Email him with your systems if you think you could come to PA for best doctor I feel in this field. Google his name, then UPMC0

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    • Posted

      I actually did see Dr Sekula. I flew there last July.. He didn't think it was HFS either..they aren't sure what it is. I have months with nothing and then will have a few weeks where it's bad and all over..I just live with it...I have lots of other health issues, so maybe someday we'll find the cause of all of it...

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    • Posted

      =( It is so frustrating. I just want answers for all of us. I am totally embarrassed at work. My face will not stop twitching. I have tried every scenario, it is 2+ years  of praying for it to stop and leave me alone.   Please Keep us all updated with any updates or findings.

       

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    • Posted

      What do you do for a living? I was the manager of a legat dept and ended up loosing my job because I couldnt read and even after surgery my eye still blinking so bad I still couldn't do the job. The main nerve in my head didn't heal right either so now I have a head so tender you can't touch and get severe pain every 4 hours

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    • Posted

      It did work. The entire right side of my face used to spasm. That is pretty much gone. It's my eye that's being stubborn. 50% of people come out completely spasm free after surgery and 50% it can take up to a year for nerve to heal and them to be spasm free (1%) have the occipital nerve pain I have from the nerve being stretched during surgery. Everyone gets the nerve stretched but in 99% of people, the nerve heals within 2 or 3 weeks during post surgery recovery. I don't regret one bit having the surgery. I would do it again. I'm better off already and optimistic that my eye and nerve pain in head will go away completely with time

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