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Just started experiencing symptoms of atypical hemifacial spasms

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addittothelist
addittothelist

Hi. I haven't even been to a neurologist yet. I saw my GP yesterday. I didn't even know this existed but about 2 weeks ago I started to experience atypical hemifacial spasms. I have some everyday. More when I am sitting and relaxing then when I am busy. They can get quite hard pulling my whole mouth up and my cheek hard. My nose will twitch and my eye lastly will twitch some but not close . My jaw gets tired from it.  So hello. Joining the brand new journey here. 

0 likes, 9 replies

9 Replies

  • Roseann
    Roseann addittothelist

    Posted

    Welcome to this club that none of us ever wanted to join!  Sorry to hear that you're experiencing these pulls and spasms.  HFS normally starts under the eye with flutters/twitches but sounds like your starting point is 'atypical' as you say.  The type of spasm you describe is called a tonus spasm - it took me a couple of years to have these, but we are all different.  I think it's really important to get to see a neurologist and have an MRI scan - only then will your diagnosis be complete.   If you are in the UK then some people choose to speed up the process by paying privately for this - I went to Nik Patel at the Spire Hospital Bristol and it cost me £750 for MRI and consultation.  I then transferred onto the NHS surgical list and ended up having successful surgery 9 years from the start of my journey.

    Hopefully you will get some let up in these nasty symptoms.  If it is HFS then it isn't life threatening in any way but it can be very debilitating and embarrassing.  Botox is usually the first treatment offered for this type of problem, but an MRI scan is most important just to rule out rare causes of the problems.  Try to take a video of your spasms at their worst - they have a habit of disappearing in front of doctors!

    Wishing you lots of help as you strive to get a diagnosis.

    • addittothelist
      addittothelist Roseann

      Posted

      Thanks Roseann for all the info. I've researched the heck out of it on the internet . I am a bit afraid due to some other symptoms this last year that could link to it ... I have a consult with a Neurologist this Tuesday in Nashville , TN.  USA where I live. Thank you so much  !!! I actually have been keeping a phone video log of it all week.... I  need to go to the phone store and see if they can get it off my phone and on a stick for the doc to study ..... I'll walk there today I think  ... Sprint store and see if they can help. I'm so not techno savvy hahaha. I'll keep you up to date ! HUGS. 

    • Roseann
      Roseann addittothelist

      Posted

      Hugs to you too!  I am also a technophobe so know how it feels not to be able to do stuff.  I would recommend that you join the Facebook Hemifacial Spasm International Support Group if you are not already a member.  There are lots of US members there and someone is bound to come from your neck of the woods and be able to help and support you through this.  Good luck!
    • addittothelist
      addittothelist Roseann

      Posted

      Thank you !!!! I just stopped all social media so that won't be an option for me but thank you for the suggestion !!!! 

      Mary 

    • Roseann
      Roseann addittothelist

      Posted

      No problem Mary, but if there's something you need to know then I can probably get the info from that group on your behalf - just ask.

  • dirck38123
    dirck38123 addittothelist

    Posted

    I'm sorry to hear you are experiencing hfs, it is life changing, I have had it for about 4 years and had the surgery a couple of years ago. The surgery helped but I still have days where the left side of my face twitches. Before I had the surgery it seemed constant, and worse when I was stressed. I went to the neurologist and he had an MRI done in my brain which identified a blood vessel wrapped around my 7th and 8th nerve at the base of my brain. I elected at that time for surgery. I must say it was worse than I expected but I really appreciate the results and would do it again... I was very dizzy afterward and could not hold anything down for about a week, driving was out of the question. I took walks as soon as I could and by the end of four weeks I adds tarted driving and returned to work. Probably too soon, should have waited a couple of more weeks. I believe the surgery is really the best way to go. They put a Teflon pad between the nerve and the blood vessel which reduced, or mostly stopped the twitching. Botox is a band aid and the twitching will return. Hope I helped you, good luck!!

    • addittothelist
      addittothelist dirck38123

      Posted

      Thank you for sharing your journey. I guess we will see on Tuesday what the Neuroligist says and what tests he prescribes to diagnose and we will go from there ! I have read everything I can get my hands on so I'm going in well informed. It's like putting a puzzle together . I have some other things going on to that could or could NOT be related . So it will be one day at a time. Right now these come and go throughout the day. They seem to worsen more when I sit and lie down right now but I've only had these for about 2 weeks !!! They can be intense sometimes and very mild at others . Mine started at mouth to cheek to under eye. Spasms seize my face and then twitch on and off . Then I'll be fine for a while then BOOM. No rhyme or reason other than more pronounce or at least noticed when sitting and lying down . I also find swallowing hard and that actually presented first ... I have some other odd things that have gone on this year so I'll see where those lead if anywhere added to this. It's seems atypical atypical hahaha.... but it's definitely ONLY the left side of my face that goes UP and to the left pulls hard at points . and twitches. 

      Okay. I'll keep you informed and thanks so much for all the good information !!!!! I'm glad you are feeling better now but I hope for a FULL recovery some day for you !!! For all of us !confused

  • addittothelist
    addittothelist

    Posted

    Sorry for the typos and spelling errors hahahah but right now I don't really CARE LOL

  • lisa88112
    lisa88112 addittothelist

    Posted

    Hello fellow atypical! I had my first HFS March 1, 2017 and it started at the left corner of my mouth and went up the cheek and all the way to include my left eye - which shut completely. Like you, mine go really tight and for me the twitching goes crazy after the tightness releases - mostly around the eye but also the mouth and cheek. I too haven't seen a neurologist yet mainly because my doctor isn't sure she knows any with HFS experience. Kinda sucks to be the rare of the rare huh wink! Hope things go well with the neurologist.

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