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Very strong popping cheek twitch help!!! Any response would be helpful.

Posted , 3 users are following.

jessica_59892
jessica_59892

Hello all! Long time no post from me. I jope everyone is doing well. Wish I could say the same for myself. My left eye is still going crazy almost two years later, and today I experienced something new. A very very strong, fast cheek twitch. It was a good four pops that felt crazy. It's hard to decribe. Here's a little background on me for new members and old.

I started twitching in my left eye several years ago. I've had an EEG, EMG, MRI, and NCS. All show nothing!!! The neurologist I have seen seems to think this isn't hfs bc it's not "pulling type twitches"

He said. More of flashing, pops. My left eye contained to go in several spots daily and doesn't get a break. I'm at a loss.

Does anyone else here have body wide twitching as well with this?? Is getting a diagnosis his tough? I just don't know what to do.

How long does this condition stay in the eye generally before moving? Does yours have good days then bad, or always bad?? I have so many questions.

0 likes, 4 replies

4 Replies

  • Roseann
    Roseann jessica_59892

    Posted

    Hi Jess, I'm still here!  So sorry to hear that you're not really moving forward with a diagnosis and that you're getting these popping sensations (something I didn't get myself).  I do know of other forum members who have something called a 'Tic disorder' where body wide twitching occurs.  My own facial spasms moved down to the mouth within a couple of years, but some people's seem to remain in the eye area for longer than this.  I certainly had good days and bad days with HFS and I believe most people would say the same.  Many people with HFS have clear MRI scans; this can be because the wrong specifications were ordered for the MRI or because the person interpreting the MRI is not sufficiently skilled in doing so.  Many people in the US go to Dr Sekula in Pittsburgh for an expert opinion, even if they consult him via Skype rather than in person.  Not sure if any of this helps, but good to be in touch again.  Take care.
    • jessica_59892
      jessica_59892 Roseann

      Posted

      Hi Rosann! I was sure hoping you were still around and going to respond! I'm just at a loss sad this twitching is so relentless. It's scary! I kind of figured you were going to say you didn't feel popping. My neurologist said that it's more of a pulling twitch with hfs. I have been so terrified of als being a possibility or something else deadly bc I am having bodywide twitching as well. My hotspot is still this left eye though. I'm just not sure where to turn. My twitching is so fine I almost cannot get it on video. It's very light flashing all around my left eye.
    • Roseann
      Roseann jessica_59892

      Posted

      Really feel for you Jess.  It's definitely worth getting a second opinion on what's happening for you, and it may be worth putting your question out to the Facebook Hemifacial Spasm Support Groups (one called Worldwide and one called International) where I know there is at least one person and probably more who have similar symptoms to yours.  Not all medics are good at diagnosing these sorts of things and so you need to keep on advocating strongly for yourself and getting second opinions from the best in the land if you possibly can.  Take care and hope you and the family are OK other than this really upsetting and annoying problem.  With love. 
  • laurel3865
    laurel3865 jessica_59892

    Posted

    Hi,

    I have involuntary movement disorder after my first MVD for TN on 6/19/2014. The shocking pian of TN is gone immediately after surgery, but left me with total facial numbness. As months passed I started to get feeling back in my face, but then I started to feel the nerve fiber spinning an pulling inside my cheek and mouth. The intensity is getting worse and worse by day and it's 24/7 accompany by pain. I've been to two neurologists, an ENT doctor and my nuerosurgeon. The surgeon said this is nerve regenerating and to give it time, although he said he has never heard of the twisting, puling sensation 24/7 from any of his patients, but everyone is different. My neurologists said I have HFS, the ENT doctor tested for hearing and vertigo and I was fine. I have had 5 different MRIs from all these doctors and they all came out fine. No one seems to listen to me because I think it is totally abnormal. Neurologists kept on given me medications that don't work. ENT sends me back to neurologist because he sees nothign wrong with me. My surgeon said he can only go back and do another MVD as exploratory but may not find anything. I fly to Pittsburgh to see Dr. Raymond Sekula. He ordered a special MRI, BSER test (hearing test) and lateral spread test and all came back negative. I do not have HFS. I was devasted because I wanted him to do the surgery. He has the most success rate with least complication. He thinks I have nerve damage from the first MVD so he diagnosed me with synkinesis. He recommended I go see a movement disorder specialist who can show me some facial exercises to retrain my facial muscle and also do botox. I will not do botox again. I did that once and it didn't help at all except leaving me with a crooked face and smile. I think my problem is far more than facial movement disorder. I am starting to feel slight twitching throughout my body. It doesn't hurt but I can definitely feel it. I also feel my balancing is not as good as before. My eye is starting to spasm as well, but my main problem is the pulling, twisting, spinning of nerve fiber in my mouth that travels to my cheek, jaw, ear, eye and sometime to the crown of my help.

    Nina

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