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Firstly, can I say how chuffed I am to find that there are many other people suffering from HFS, for a longtime I have felt alone, but also sorry that you're going through this aswell.
I am a 35 year old living in the UK and this is all started, it started with a slight twitch in my lower right eye, then over time it became very annoying. I consulted my GP who told me it was "tiredness and stress, and would solve itself" I have now had this problem for three years and during this time the spasms became worse, no longer just in my eye, my whole face would spasm, my nose, cheeks and mouth, quite serverely. After changing GP's i finally was referred to a neurologist and the appointment took about 3 months to come through. As i sat in the waiting room, the spasms were doing the norm and then typically when in with the consulant nothing, he referred me for an MRI.
The MRI results were clear, leaving me with the explanation that I have a "Primary, right hemifacial spasm".
We spoke about the treatments on offer, however the consultant said that he didn't think that the symptoms were severe enough to undergo surgery.
A few months later it just felt that the spasms were getting worse, i didnt like going out meeting new people or putting myself in any situation that would cause me to feel nervous as this all contributed to the symptoms.
I went back to my GP, who referred me once again to see the neurologist. Once again we spoke about the treatments available and decided to give botox injections ago, again another referral as my local hospital could not offer this treatment.
I had my first lot of injections nearly three weeks ago, they put one in each corner of my top and bottom right eye lids and two injections to the side of my nose between my cheek. Everything happened that the doctor said would happen regarding the side effects, it started with dry eye that felt irritated (a little like conjunctivitus) drops helped with this. My eldest daughter then noticed that my right eye was not closing when i blinked just staying wide open (great another thing to feel concious of) about a week ago, i went to put some make up and when doing my mascara i noticed for the first time that my eye did not close up, i thought great its worked, i then tried to put lipstick on, to find that i could not "pout" my right side of my top lip is drooping. My speech has become slurred this past few days and the side of my nose feels really tight and tender to touch.
So sorry for the "essay" but its nice to be able to tell someone/people that understand exactly what i am going through.
I am now concerned as to whether to continue with the botox, i know its still early days, but i am due to go back in about 8/10 weeks, for another session. I know its still trial and error as to how much to inject and how often and i am keeping a diary to discuss with my consulant when i next see her. For now i dont know whats worse, the eye/face spasming with the eye totally closing happening almost every day for the duration of the day on and off, or my lip now having no muscle function!!
confused i am :-(
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