Hemifacial

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hi went to see neuroligist today he says I got mild Hemifacial it started with my left eye twitching it has spread to my mouth yet but when I talk to people I feel it twitching I can talk and eat ok at the mo  will it get worse I've had symtons for 6 months now helpful replies please and what can I do to help myself I'm nervous reck 😟

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  • Posted

    Hi Sue, As you can now see there are loads of us with the exact same condition.  My twitch started on the right eye, it started in the November year before last but progressed last year with the mouth twitching and feeling a nerve near the nose go every now and again, at the moment I think that my HFS is not as serious as it can get because I do have long periods when I am spasm free, I have days when I experience the twitches at different times in the day and in the last few weeks it's been happening alot just before I go to sleep.  HFS is irritating but I try not to let it get the better of me, I have found that by doing breathing exercises every time it happens it helps, I close my eyes and take a deep breathe holding it for a while and then slowly exhaling, this stops my twitch for a bit, yoga is good if you do the beginners yoga follow it on youtube and do the exercises in the morning and before bed time, I have tried always to stay positive and have always thought that botox is not a good thing but when one is desperate we try everything, at the moment I have not tired botox and have recently been for an MRI scan but I am still waiting for my results.  I have been advised by other sufferers that the operation is the way to go, so will have to work out which route I will take, maybe it's best for the treatment to take place in teh early stages and not to let it go on for years.  Please know that our thoughts are with you and that you are not alone,  I too go though the thing of the spasms happening when I'm talking to people, I explain but they mostly tend to say "We can hardly notice it."  Try to keep calm as this helps too.  Rosann and Gladys are both experienced and their advice is good, the spasm is annoying but think of relaxation techniques you can do or acupuncture in the mean time.
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  • Posted

    Hi Sue

    As you can see there are many HFS sufferers and people just like you who have gone through this very worrying at first condition. I have suffered for 13 years now and after living with it and then Botox injections which didn't help I now have my first appointment booked with Mr Nik Patel in Bristol who i hear is the best. I am now going to opt for surgery as this has totally got me down and although generally I am very positive I need to get my life back.

    Good luck be positive it is a long journey but surgery seems to be the final outcome for most cases .

    Keith

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  • Posted

    Hi Sue,

    Well done for taking the time to check in. Can't really add to the wise words that have already been posted in response to you query, just to re-iterate that you're not alone in your situation and we all understand and feel for you. It seems dispiriting alright, but there is bags of hope, and you're asking all the right questions, and importantly, you're asking them at an early stage.  Find out all you can to help you make informed decisions. The HFS brigade are an empathetic bunch and they'll help you if they can, be they on Facebook or in the more sedate backwater of patient.info

    Best wishes to you

    Ed

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  • Posted

    Hi I am just wondering what these twitches are like... Are they continual? Do they close your eye or cause more blinking? I have been having twtichjng in my right eye for months! It varies in intensity from a thumping feeling to not being able to feel it all (but it is still twtiching. I will also get some in my other eye but almost never.. Those feel more like popping feelings. Just wondering what the twitches are like... Any help would be great thankssmile 
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