Does this sound like HFS to you?

Posted , 4 users are following.

Hello guys!

My name is Vivian, and I am a 29 year old woman.

I have had my braces done in 2016, back then i had nose twitching and some eye twitching for almost 3 months. For some reasons they just went away on their own. I think they occurred due to the braces. But now I am braces free for a year and half.

However, Recently I been experiencing some eye twitching, it's on the left outer corner of my left eye. It's been twitching for a while now, I would say a week or two and it doesnt seem to be going away!! ALL DAY EVERY DAY EVEN DURING SLEEP I CAN FEEL IT. I can feel it twitching but if people dont look closely, they wont notice it.

I been looking at it in the mirror and I am able to see the flickering/twitching on the exact same spot every time! The frequency been the same but I feel like the magnitude has gone down..

I went to the doctor and just like every other family doctors, he told me i was tired and stress and blah blah blah. Thing is, I am not a coffee drinker, do not smoke, sleep at 10pm with 8 hours (or more sometimes) of sleep. I mean there is nothing really related to stress in my life except for this twitching!

I realized the twitching is more noticable when i lay down, when I try to go to bed. But once i sit up, it's not as strong anymore. Here is a picture of the location of the twitching

image

My doctor even told me he has seen people like my age (29) coming with twitching for a month or so and never seen those people again. So they their twitch probably had resolved on its own.

I am really nervous and helpless guys. He wont think it is HFS and wont let me see a neurologist because they think if it was HFS, there would be more symptoms, instead of just having a little eye twitch. I have already told them a lot of things start with small thing but he thinks im too nervous.

Please gimme some ideas guys! I really need your help. DOnt know where to go anymore

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4 Replies

  • Posted

    Hi VIivian . My HFS started with eye twitching .. just like you I was told that it was just stress . Now my HFS is full blown . i had MVD surgery in May but it was not successful

    Tell your doctor that you want to rule out hemifacial spasm. I dont know what insurance you have . Do you need your doctor's referral to go to a neurologist ? If not consult a neurologist, look for someone who specializes on HFS. Good Luck . i truly wish your doctor is right , that it is just stress

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    • Posted

      Hi, Thank you for replying. Would you mind telling me how long did the eye twitching last until it moved down to other parts of your face?

      And once your eye twitching started, did it ever stop? like was there a period that it would go dormant or it never stopped since it started? Thank you so much!

      Your input means so much to me.

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  • Posted

    Hi Vivian, it's hard for anyone (other than a doctor) to tell you with any certainty whether this is HFS, but I would suggest that you try to see someone who has some expertise in this condition. There is a lot of medical ignorance about HFS and the best diagnositic expertise tends to be found at centres where they perform surgery for this condition. It's also useful to have an MRI scan just to rule out other rare conditions which can cause twitching. I don't know where in the world you are, but you may find it helpful to join the Facebook Hemifacial Spasm International Support group where there are members from all over the world who may be able to advise you.

    Most people start with an intermittent twitching below the eye, but some do start with above eye flutters too. It's unusual for HFS to be 'day and night' from the outset, but again, it's possible. Please don't feel alone with this - many of us have been in this position where doctors tend not to believe us or make light of what we're experiencing. It may not be HFS and may just be normal tiredness or stress, but you need to be heard and taken seriously either way.

    Hope you will get some helpful responses. Good luck!

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    • Posted

      Hey, thanks for the reply!

      Would you mind telling me how did yours start? Did your start with eye twitching? How long did the twitch last you until it moved down to the other parts of your face? Did the eye twtich ever stopped once it started or it just never stopped once it started? Were you able to feel it during sleep? Thank you for replying!

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