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Hemifacial Spasm

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  • gail04091 1

    Diagnosed 4 year ago

    Hi folks I was diagnosed 4 year ago and offered muscle relaxant but they made me too drowsy and to be honest I'd sooner put up with the twitch .it went away on its own for a few months but has come back with a vengeance . Like someone else on here it doesn't stop when lying down I wake up to it and I...

    1 reply 0 votes Last reply
  • lesley53917 2

    My operation

    Hi Guys, just a short update. My opp was on the 19th June it has all gone well, no more face spasms, I am feeling on top of the world, I am only taking paracetamol, and I feel really well, just very tired and slow, but not in any pain at the moment, I have had my staples out yesterday all was good with...

    1 reply 0 votes Last reply
  • addittothelist 2

    Just started experiencing symptoms of atypical hemifacial spasms

    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...

    8 replies 0 votes Last reply
  • WindHurt 3

    New Findings

    Driving a car with the affected eye can be difficult, especially if there is some tearing as well. However I discovered that keep the body straight and pulling in the chin can stop the eye closure. I wonder if anyone here with the same problem could give it a try. Wearing dark glasses should help too...

    39 replies 0 votes Last reply
  • lesley53917 2

    After 16years I am hoping to look normal again

    hi, I have had all the treatment every one else has had, and now feel brave enough to have surgery. I am going to Bristol,and Nick Patel is going to do the opp, he seems the best one I have heard about. Can anyone let me know what to expect,as I am very nervious. Thanks guys

    22 replies 0 votes Last reply
  • Jane900 2

    HFS and noise in left ear

    I've had HFS for 15 years and have had 2 unsuccessful MVD operations. One of my most distressing symptoms is a continous noise in my left ear (it's left side of my face which is affected). Some days this noise is really really difficult to live with and very often makes sleeping difficult. Has anyone...

    7 replies 0 votes Last reply
  • sharon81449 2

    Hemifacial Spasm

    I have just been diagnosed with Hemifacial Spasms at the age of 46 - since suffering from daily fluttering in my left eye. Thankfully at this stage it is still only affecting the left eye (I have had this since May last year) and hasn't spread anywhere else. I am beside myself with panic that I am...

    129 replies 1 vote Last reply
  • Mrse 1

    Advice for hemifacial spasm please

    Hi I am 46 had hfs for 2 years have Botox but now had enough,getting regular headaches because my sleep is interrupted,does anyone take medication for it ??? Was offered diazepam by my gp but does it help please??? Any advice welcome thank you 😊

    2 replies 0 votes Last reply
  • WindHurt 3

    For HFS sufferers: HOW TO SMILE

    Hello Everyone, Since I posted "New Findings", I have not found a lot to help copers and sufferers who have no inclination to an operation called MVD. (the complications reported are not worth it). I still believe HFS is the result of a changed spine configuration - maybe due to a previous injury at...

    1 reply 0 votes Last reply
  • PJ Girl 2

    Microvascular Decompression Surgery

    i had Surgery 6 weeks ago for facial spasms and I'm still experiencing spasms, dizzyness, and hearing loss. Has anyone had the surgery and experienced these things.? If so, how long did it take before you were back to normal?

    9 replies 0 votes Last reply
  • mikey17 1
  • terrye28175 1

    Has anyone developed HFS after a craniotomy?

    I had a craniotomy for posterior fossa Meningioma in Oct 15 and now since Jan I have had increasing facial spasms. They began around my chin but are now moving up my face. Once it involved the entire right side of my face.

    0 replies 0 votes Posted
  • bk93478 2
  • stephanie18659 2

    Had mvd surgery two days ago and it was a success!

    I am a 43 year old female living in Chicago that has had hemifacial spasms for the past 9 years. Since my diagnosis I have been getting Botox every 3 months and taking meds to minimize the twitching. Every day i hoped and prayed it would stop and over time it seems Ed to have gotten worse. I saw 3...

    11 replies 0 votes Last reply
  • hailey99089 1

    Surgery for hemifacial spasm

    I am due to have surgery for hemifacial spasm. Extremely worried due to all the risks. My surgeon said there is a risk of death!! Stroke! Also facial droop. Really want to have the surgery to stop the spasm, but so worried about all the thing that could go wrong. I am 39 with 3 children, I really don't...

    2 replies 0 votes Last reply
  • sheila9815 2
  • clh 2

    How many time can you have the mvd surgery?

    I have had the spasms since 2010 and started with Botox doe two years and decided to get the surgery . In 2012 of April I had my first surgery putting the saline pads between my 7 th and 8 th nerve. The recovery didn't go so good lots of complications but I was spasm free . My head hurts so bad and...

    9 replies 0 votes Last reply
  • jessica10799 2

    alternative treatments

    Has anyone tried massage, chiropractic or other alternative actions to help with the HFS? I was just diagnosed and was told that my CT scan and MRI are normal - so I am on a medication for Parkinson's that I don't feel is doing much. I follow up with the neuro on the 28th and really not enthused about...

    11 replies 1 vote Last reply
  • chris1978 1

    hemi facial spasms

    hi my name is chris, im 33 and have been suffering with the spasms for the last 5 year when my spasms arnt that bad it can be something from a bit of twitching on the left hand side of my cheek with minor headache, when there at there worst its as if my whole head is affected as though someone is shaking...

    20 replies 1 vote Last reply
  • angie1414 2

    Botox concern

    I have been diagnosed with HFS 2 years ago.  I started Botox around that time with my eye doctor.  Botox helps, however, I wanted to see if other HFS patient's experiment what I do.  First - are you all getting it from eye doctors or other specialists?   Secondly - are you only getting shots on one side...

    19 replies 0 votes Last reply
  • JackieH 1

    HFS and MVD

    Hi there, I have suffered from HFS for about 9 years. In Nov 2007 I underwent MVD and the spasms did slow right down, even to the point that I could go a whole week without one, although not disappear altogether. However, they have come back with a vengeance over the last 2 months. It is as if the...

    30 replies 2 votes Last reply
  • kimjrd 1
  • rena74902 2

    Rena mvd

    I just had McD surgery it was not successful how long should i wait for second surgery? Thanks for your input.

    5 replies 0 votes Last reply
  • Roseann 4

    Remitting Hemifacial Spasm - surgery or not?

    Wonder if anyone else experiences long remissions from their HFS? I can sometimes get up to 3 months off before it comes back and this is bliss. I have been offered the MVD surgery at the Frenchay in Bristol and am agonising over whether I should or shouldn't. On a bad day it's yes and then when in...

    122 replies 2 votes Last reply
  • brian0049 1

    A help for my HFS

    I've suffered with facial spasms to the right side of my face for 8 years , I've had Botox for 3 years but this caused the right side to drop. I don't know if this can help other sufferers but I saw Doctor in Germany and he surgested I try CARBAMAZEPINE, for the last 2 years I've been taking 200mgs 4...

    2 replies 0 votes Last reply
  • lesley53917 2

    Hi guys I am still waiting

    just a up date really,I am still waiting for my opp,it should be in a few months time,NHS cuts. I cannot wait now,I just want it done and hopefully succesfull after the opp,I hope you are all good,will catch up nearer the opp time

    2 replies 0 votes Last reply
  • camas 2

    Depression

    I had hemifacial spasm/trigeminal neuralgia for eight years.  For these eight years it affected every aspect of my life, and eventually it cost me my marriage, because she accused me of addiction to pain medication.  I was never addicted to pain medication, but the constant twitching of my face for eight...

    2 replies 0 votes Last reply
  • tiffy2jw 2

    I have the symptoms of HFS

    I am 40 yo. I have not been diagnosed as of yet. I began having symptoms Friday, the day after Thanksgiving, while at work. About 9 am, I noticed that my left eye was smaller than the other. Then after seeing my patient, about an hour later, I noticed spasm under my left eye. I have had spasms before...

    5 replies 0 votes Last reply
  • camas 2

    There is a Light at the End of the Tunnel

    oAfter eight years of hemifacial spasm that affected my trigeminal nerve and consulting the majority of neurologists in Spokane I e-mailed the University of Washington Medical Center in Seattle.  I sent them my symptoms and they immediately repsonded and scheduled an appointment with Dr. Rostomily. ...

    1 reply 0 votes Last reply
  • krnflakgrl 2

    Facial Twitching- Still looking for a diagnosis

    Hello all! I'm in the states and have been dealing with ongoing (off and on) facial twitching since March of this year. Mine started as a constant non-stop fasciculation in my smile line on the left side of my face. Then over a period of a few months, both of my eyes at various times had twitching- pretty...

    22 replies 0 votes Last reply
  • joanne19156 3

    feeling frustrated

    Hi I've Been struggling with my speech since last july I had a funny turn my mouth went droopy and my speech went ga ga my accent changed and now I'm left with a speech impediment and the medicam

    3 replies 0 votes Last reply
  • marilyn02195 2

    Next step?

    Having suffered with hemifacial spasm for at least 15years I was offered the opportunity to have an operation earlier this year.Unfortunately it was unsuccessful and my original surgeon offered to operate again,three months after the first operation.I have subsequently had a second opinion and that surgeon...

    11 replies 0 votes Last reply
  • yangcd 1

    Hemifacial Spasm (post op care advioce)

    Hi, I never knew such forum existed. I've been religiously reading many advice given from people who have experienced this same condition. If only I had found this site sooner. Background: Although I am lucky to have my symptoms come and go, my dad was not. For more than 6 years, I have watched my...

    4 replies 0 votes Last reply
  • Lyons6 1

    So many symptoms no answers or relief

    Hi everyone I just joined after reading a few posts about others symptoms and thought maybe I could get some relief just by talking to others about this. I am 33 year old male and 8 months ago I started getting an eye twitch I chalked it up to being maybe a magnesium deficiency and took some supplements...

    3 replies 0 votes Last reply
  • sabreena38826 1

    Hemifacial Spasm

    For the past approximately 8 years, I've been having a facial spasm usually on the right side of my face and it would subside in about 2-3 weeks. Currently I am having the facial spasm for about a week now. It is so annoying to have to cover my face when I feel ugly and the fact that my face looks and...

    6 replies 0 votes Last reply
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