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Help plea

Posted , 7 users are following.

Williamsmummy4
Williamsmummy4

Hi, I am new to this site and am 41 and live in the uk. I started with a strange sensation in my right eye a number of months ago which eventually turned into an eye twitch,  which I ignored, hoping it would go away. Unfortunately it didn't and it progressed to my cheek which now spasms on a regular basis and affects the corner of my mouth. I have been getting more and more spasms the last 4 weeks and people, including my family, have started to comment about it which is making it worse. I seem to spend my time covering my face when  I am with other people. I finally plucked up the courage to see a GP today and I took video evidence of it happening just in case I didn't have an episode whilst there ( I had some eye twitching whilst there but no more so I'm glad I took it)  the GP said he was unsure so wanted a blood test to be done first and I am to return in 2 weeks but he is leaning towards focal epilepsy. I have had a look at the symptoms of this at home and strongly disagree, hfs seems to be more likely, has anyone else had problems with diagnosis?

please help!

0 likes, 17 replies

17 Replies

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  • sally44295
    sally44295 Williamsmummy4

    Posted

    Hello,

    It sounds to me very like hemi-facial spasm. MIne took several years to progress from my eye down to my mouth but maybe that's because I'm older and my first symptoms didn't appear until I was 57. I'm now 64 and have only just had an MRI scan to see if surgery would solve the problem. If I were you I would ask for an MRI scan, and referral to a neurologist. Good luck! Sally

    • Williamsmummy4
      Williamsmummy4 sally44295

      Posted

      Thanks for the advice,it  does seem a long time before you got an mri scan though, not sure I could live with this for too long although im probably going to have to. Unfortunately my job involves face to face interviewing all day so things are going to get worse emotionally having this
  • catherine17042
    catherine17042 Williamsmummy4

    Posted

    Hi William

    Question do you have any possible bad teeth or recent head injuries. Do not discard eye twitching. Please check out osteomalitis if you have suffered from any possible past histories. My daughter suffers from ongoing seizures and I am 47 and just had a first eposode of a grand mal seizures, we both have a history of eye twitching and burning sensation in the eye itself. My daughter now suffers from seizures daily, and has a rare form of organic brain syndrom wich is best described as a form of dimentea. It is very important that you can trust your doctor if he has given you reason to not trust him then please change doctors immediately. Both her illnesses are very rare, so not to worry you but it would be worth checking into. wish you the best. Check out the chat about Osteo Malitis see if any stories sound familliar to yours.

  • clare04574
    clare04574 Williamsmummy4

    Posted

    Hi

    Your symptoms are exactly the same as mine, I am 35 and have been suffering for three years, doc first put it down to tiredness and stress, finally another doc took one look and referred me to a neurologist...I had an MRI scan that confirmed primary HFS. The past 8 months it has moved from my eye gradually down the face inc my nose cheek and mouth. Social situations can cause my spasm and they are worse if I'm tired. A change in out door lighting (supermarkets) can also trigger as well as stress. I've tried Botox and that helped but left me with a eye that wouldn't blink/close properly and a drooping mouth with slurred speech. I don't know if I fancy having that for the rest of my life and keeping up with injections every three months and having a total frozen face. I am now awaiting an appointment at the end of the month to

    Discuss surgery which is meant to be 80% effective. 

    Sorry long story :-) it does sound like HFS and my advice would be to go back to the doctor and ask about HFS, and insist on being referred to a neurologist, an MRI will help with a diagnosis. Then if confirmed discuss your options. Read through the posts on this site they are so helpful. I stumbled across this site by accident and it's been great and very informative.

    Good luck in getting a correct diagnosis. 

    • Williamsmummy4
      Williamsmummy4 clare04574

      Posted

      Thanks for your reply, I have read up on help with hfs today in preparation for what may come next and was pinning my hopes on eventual botox if it becomes necessary but im not so hopeful now,  based on your experience. Maybe it wont be a quick fix that I was hoping for. I feel so helpless and worry that my gp my leave me to suffer alone for years to come. 
    • clare04574
      clare04574 Williamsmummy4

      Posted

      Hi

      Sorry didn't mean to get your hopes down sad

      I thought Botox might been the kick start that it needed and after a few it might be normal again...it's only after reading probably all of the discussions on here that I decided to look into surgery and go back to my neurologist. 

      There are many sites offering information on HFS that you will find useful to take to the gp with you, like ed said, don't be surprised if they haven't heard a lot about it.  Hopefully you can get a correct diagnosis. The NHS waiting list wasn't too bad for my MRI i waited about two and a half months for mine. However when my diagnosis was confirmed I kind of just accepted what they said and at the time i was only experience a twitchy eye and my neurologist didn't think it was bad enough to try Botox or surgery (as with all operations there are risks) his words were "until it starts affecting your lifestyle, do you really want brain surgery?" At that time no I didn't. However three months later they progressed down my face became more frequent and I could even tell when they were about to happen. It does now affect my lifestyle, I feel everyone notices it and It makes me very self conscious. I am now considering the surgery, I just want to get back to how I was.

      Good luck with getting a correct diagnosis, keep us posted, and keep that positive attitude. 

  • ed_92085
    ed_92085 Williamsmummy4

    Posted

    Hi WM4

    I so admire your willingness to challenge what your doctor is telling you. ( we always admire people who can tackle things we've found hard ourselves!) A good doctor is not going to be threatened by this and would be comfortable with you voicing your own opinion. Some are'nt' but I don't think this is going to prevent you from continuing to take the initiative with your own well being. Go for it! I'd echo Sally and contend that this does sound very much like HFS in the way it has progressed. ( though obviously I'm not a doctor and can't diagnose it or rule out the other condition you mentioned, so my comments must be seen in the context).

     Sally's advice is on the money. I too waited for years before grasping the nettle ( in my case complicated by a misdiagnosis from a GP who had no knowledge whatsoever about this very real and distressing condition) then having the MRI scan that Sally alludes to, and then the op.  Your proactive and assertive stance is unlikely to let you fall into the delay/ passive acceptance trap, and if it does turn out to be HFS, I think your confident approach could save you years of difficulty. Please be prepared for you doc never having heard of HFS at all. It is rare 

     Despite the circumstances ( which all here understand) lovely to hear from you. Hat's off to you! and all the best. Let us know how you're getting on. when you get the opportunity.

    • Williamsmummy4
      Williamsmummy4 ed_92085

      Posted

      Thanks so much for your reply, luckily when I return after my blood test for my follow up appt I am seeing a different gp so I will challenge the diagnosis if I need to and take some info on hfs with me as a back up. I will try to insist on a referral to a neurologist anyway but wonder how much of a wait there is with the nhs?? Months I bet!! 
    • ed_92085
      ed_92085 Williamsmummy4

      Posted

      Yep, the wheels of the NHS can turn slowly when you have a non-life threatening though distressing condition.  If I had my time again, at a very early stage I'd  arm myself with all the information that has been accrued over years by people on this and other sites relating to all the facets of HFS such as misdiagnosis, botox, handling the psychological effects, handling GPs (!). This knowledge is liberating.

       Facebook  ( or hemifacebook spasm as those with an ability to see the dark humour in this ghastly complaint might term it) is also a respository of much support and information. A sense of humour certainly helped me, especially when one GP was about to diagnose me with Tourette's Syndrome ( yes. True). I realised the acute irony of a situation in which the response I wanted to give, riddled as it was with four letter words, would cement the (mis) diagnosis. The only response was to laugh, withold the intended expletives and assure the clueless and hapless medic that, really, this wasn't what I had,and thank him for the generous  offer of the diagnosis, but no thanks.   

        People posting on sites, especially those who delayed for years getting to the root of the HFS problem, at a fundamental level are probably hoping that all we went through will enable others not to have to, so there's a high degree of empathy and a willingness to be in your corner. It's potentially a very isolating condition, but you are not alone.

      I'm off to get on with all that paperwork I'm supposed to be doing! Good luck

    • Roseann
      Roseann ed_92085

      Posted

      Hi Ed

      Your post above did make me laugh.  I can just see you shouting the four letter words in confirmation of your Tourette's Syndrome diagnosis.  HFS does make one want to shout a few four letter words (and I did, regularly) but it certainly wasn't Tourette's!  So pleased that your surgery was also successful.

    • ed_92085
      ed_92085 Roseann

      Posted

      Thankyou Roseann. I think we both made the right decision! and its like the colour dial's been turned up on life again.

      Sometimes you just have to see the funny side. There was no way I was going to leave that consulting room with another ******g misdiagnosis.....i'm not collecting them 

  • jessica_59892
    jessica_59892 Williamsmummy4

    Posted

    Does everyone with HFS experience dry eye in the eye hats affected by the twitching? My eye is always so very dry and irritated! 

    Also just curious if everyone's twitches feel similar to a popping feeling under the skin? 

    • Williamsmummy4
      Williamsmummy4 jessica_59892

      Posted

      Hi jessica, I have never experienced dry eyes myself but thats not to say that that isnt a common problem with other sufferers of this condition. popping under the skin I  have not had either so i can't really comment and as this condition is fairly new to me I am not 100% sure with that either but I do get a popping sensation in my ear when my face twitches (a bit like when pressure changes in an aircraft ) 

      :-)

    • Roseann
      Roseann jessica_59892

      Posted

      Hi again Jessica, just to say I didn't ever have dry eye and I didn't feel the skin popping either.  But, I know that Botox can cause dry eye, as can other autoimmune conditions...................
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