Can anyone else suppress their HFS twitches?

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Hi,

I am a 43 year old female. I have suffered from HFS for about 7 years and I was finally diagnosed 2 years ago.

I suffer from the usual eye twitching and forced eye closure.

In the middle of a twitching episode I can sometimes stop the twitches by breathing deeply and concentrating on relaxing my facial muscles. Is this normal?

Is there anyone who has similar experiences ?

Thanks

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12 Replies

  • Posted

    Hi Kazzy,

    I have a similar experience, breathing deeply, relaxing the facial muscle and looking up helps to stop the twitches. I find that they are worst when I was standing in front of someone who is sitting down and having a conversation in that position. Chewing food and brushing the teeth never fail to bring on the spasms sad

    kind regards

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  • Posted

    HI YKL,

    I am so relieved. I have never read anyone saying they could. I was beginning to doubt the diagnosis. After all it seems to me, if they rule everything else out then it is HFS. The neurosurgeon admitted he cant actually see a blood vessel pressing on my facial nerve on the scan. It was more a case of "we'll see when I open you up"

    After doing so much sole searching as to whether I should have the MVD op I am now sick with nerves and doubts.

    My worst triggers are the sunshine, singing and driving. It's weird how all our triggers vary.

    Kind regards

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  • Posted

    Hi Kassy,

    First of all, may I say quite bluntly, ditch your neurosurgeon! Who is going to let him open up their skull for an exploratory? Has he not heard of a MRI scan with contrast dye? This will show the blood vessels more clearly on the scan. You will no doubt have read other threads on this forum and find that most agree that the Spire Bristol Hospital is the leader in this field. The most successful mvd surgery reported by forum members here had their operations done in Leeds and Tooting (London), in both cases they woke up completely spasmfree. For the best result, Pittsburgh is the place undoubtedly.

    I agonised over whether to have surgery or not for well over a year but eventually it was an easy decision as the spasms became so unbearable and I wanted a normal social life.

    Best wishes,

    Leon

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  • Posted

    Hi Leon,

    I must admit I thought I was going to have the contrast dye but it was the MRI technician who said he was happy that the scan was showing what they needed. I did think it was strange, would he be that qualified? Maybe he was.

    Sorry I have not read all the other threads yet. I need to sit down and go through them. Am I allowed to ask where you had yours done? Was it successful? I think I'm most worried about the first week post op. There are some pretty awful accounts on the HFS website that I'm sure you have read.

    All the best

    K

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  • Posted

    Hi Kazzy,

    I had my mvd surgery at the National Hospital for Neurology and Neurosurgery, Queens Square, London in January this year. I started the discussion thread 'MVD surgery 8 days ago' and there have been over 170 replies to date. You will find 3 of us there who have had the surgery and others pondering whether to go for surgery. I consider my surgery a partial success, the spasms are less frequent and less severe, overall about 30-40% better than pre-surgery. I hope that they will disappear altogether with time as reported by some other patients.

    I have read through the mvd diaries of the members of the hfs-assn several times and agree with you that some are rather frightening - worst in the case of the patient who has all her fingers and toes amputated after the surgery, but I think she had a pre-existing condition that caused the complication. Generally the worst that could happen is to lose hearing in one ear (<5% risk) as all the other complications are transient and you recover from them in time. I had an exceptionally smooth recovery and overall experienced very little pain if at all. I experienced slight dizziness for a while and constipation for the first 3 days after surgery which was in fact a blessing as it saved me the trips to the toilet, not exactly comfortable with the IV line to carry around wherever you go! This was my first stay at a hospital let alone having my first major or minor surgery, so you can imagine how relief I was to find the whole experience less daunting than I thought. If you stay in hospital for as long as they allow you to ensure that there is no csf leak or infection, then there is not much worry. I stayed 5 nights post-surgery. My personal experience is by no means unique, the lady who had her surgery in Leeds also had little pain or complications, plus the added bonus of an immediate cure to the spasms! You can find her account on the thread 'Remitting HFS, surgery or not' started by Roseanne.

    I think that you need confidence in your surgeon if you are considering surgery. Ask about the number of mvd surgeries he has done and the success rate. Let me know if you have any other questions regarding the surgery or the recovery period, I would only be too pleased if I can help as I have been through all the anxieties and now realised that many of them are unnecessary.

    Best wishes

    Leon

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  • Posted

    Hi Kazzy, 

    I was diagnosed about 6 months ago after several months of worsening spasms.  My doctor did 2 different MRIs in order to get a very good look at blood vessel and nerve involved.  Surgery was recommended, but I had an extended holiday planned with my family.  While away from my routine and quite relaxed, I noticed that my spasms almost went away.

    This lead me to experiment with positions like YKL did, except for me, it helps to look down and simply focus on relaxing all my facial muscles.  I now have maybe one or two spasms a week at the most. 

    I was certainly in no rush to have surgery because my case was more mild than many I've seen on the Facebook HFS support page.  Now, I will not have the surgery unless suddenly my technique does not work and it comes back even stronger.

    I am delighted that an occasional Zanax (Alprazolam) assists me and being aware and focused and positioning my head when I need to.  Now, brushing my teeth or sucking through a straw doesn't even trigger it.  I am so happily surprised.

    Best of luck to you and all of us.

    Warmly, Lori

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  • Posted

    Hi Kazzy, 

    I was diagnosed about 6 months ago after several months of worsening spasms.  My doctor did 2 different MRIs in order to get a very good look at blood vessel and nerve involved.  Surgery was recommended, but I had an extended holiday planned with my family.  While away from my routine and quite relaxed, I noticed that my spasms almost went away.

    This lead me to experiment with positions like YKL did, except for me, it helps to look down and simply focus on relaxing all my facial muscles.  I now have maybe one or two spasms a week at the most. 

    I was certainly in no rush to have surgery because my case was more mild than many I've seen on the Facebook HFS support page.  Now, I will not have the surgery unless suddenly my technique does not work and it comes back even stronger.

    I am delighted that an occasional Zanax (Alprazolam) assists me and being aware and focused and positioning my head when I need to.  Now, brushing my teeth or sucking through a straw doesn't even trigger it.  I am so happily surprised.

    Best of luck to you and all of us.

    Warmly, Lori

    Report
  • Posted

    Hi Kazzy, 

    I was diagnosed about 6 months ago after several months of worsening spasms.  My doctor did 2 different MRIs in order to get a very good look at blood vessel and nerve involved.  Surgery was recommended, but I had an extended holiday planned with my family.  While away from my routine and quite relaxed, I noticed that my spasms almost went away.

    This lead me to experiment with positions like YKL did, except for me, it helps to look down and simply focus on relaxing all my facial muscles.  I now have maybe one or two spasms a week at the most. 

    I was certainly in no rush to have surgery because my case was more mild than many I've seen on the Facebook HFS support page.  Now, I will not have the surgery unless suddenly my technique does not work and it comes back even stronger.

    I am delighted that an occasional Zanax (Alprazolam) assists me and being aware and focused and positioning my head when I need to.  Now, brushing my teeth or sucking through a straw doesn't even trigger it.  I am so happily surprised.

    Best of luck to you and all of us.

    Warmly, Lori

    Report
  • Posted

    Hi Kazzy, 

    I was diagnosed about 6 months ago after several months of worsening spasms.  My doctor did 2 different MRIs in order to get a very good look at blood vessel and nerve involved.  Surgery was recommended, but I had an extended holiday planned with my family.  While away from my routine and quite relaxed, I noticed that my spasms almost went away.

    This lead me to experiment with positions like YKL did, except for me, it helps to look down and simply focus on relaxing all my facial muscles.  I now have maybe one or two spasms a week at the most. 

    I was certainly in no rush to have surgery because my case was more mild than many I've seen on the Facebook HFS support page.  Now, I will not have the surgery unless suddenly my technique does not work and it comes back even stronger.

    I am delighted that an occasional Zanax (Alprazolam) assists me and being aware and focused and positioning my head when I need to.  Now, brushing my teeth or sucking through a straw doesn't even trigger it.  I am so happily surprised.

    Best of luck to you and all of us.

    Warmly, Lori

    Report
  • Posted

    Hi Kazzy,

    I have posted for this HFS forum recently, and just noticed your post.

    I myself have had HFS for about the same duration as you. After reading YKL's summary of MVD surgery experiences (thank you YKL) , I feel that the percentage of success does not warrant undergoing MVD, a procedure that is very invasive and at best appears to be symptomatic treatment in the sense that the real cause is unknown. MVD is a kind of manual intervention, in the sense that teflon material is inserted to block the pulsation of the artery on the 7th Nerve (Facial Nerve).

    Hence, like you, I try to approach this affliction by focussing more on the possible CAUSE of the condition. What if the cause of HFS is due to changes in the curvature of the cervical spine and thoracic spine? The kyphosis, which is the antero-posterior configuration of the spine. Or kyphoscoliosis, a combination with acquired scoliosis?

    The vertebral column is a stack of 33 bones call vertebrae. Any change in spacing would compress spinal nerves. At the head level, any slippage of the 1st vertebra (called the atlas), or the second vertebra might result in pressures in the tissue spaces resulting in higher arterial pressure. By deduction, any changes like subluxation of vertebrae at neck level or below neck level (thoracic level) could be the cause of HFS. After all we are not born with convoluted arteries. If we did, we would have been twitching from our teen days!

    So my conjecture is, HFS is an acquired disease. Maybe due to our habit of sitting far too long on couches and computers. For housewives, excessive kitchen activities with head down. Tremendous strain on the neck/shoulder muscles for sure!

    I believe I have gained a significant amount of control over the eye closure by experimenting with isometric exercises (isometric means stretching without movement). In earlier posts I mentioned the bar. Pulling the chin in helps. Leaning the forehead against the wall helps. Breathing helps because in a way, it is internal isometric at thoracic level.

    Reducing muscle tensions anywhere in the body helps. Less stress also mean lower BP and that, too might help.

    So in answer to your question, I would say...yes, there are others out here who are diligently and courageously working to find a way to ease or control this BEAST, albeit not cure it.

    Who knows in future, some osteopaths or orthopedic surgeons might offer a better solution. Best Regards.

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  • Posted

    Hi Kazzy,

    I suffered from hemifacial spasm for about 15 years.  It was awful.  My left eye twitched, and as the years went by , my eye began to close every time I sipped a drink, chewed, laughed, or spoke.  The spasm traveled down the left side of my face and began to affect my mouth.  I tried botox treatments for 9 years.  At first the botox helped, but after about 8 years I noticed that my mouth was drooping on the left side.  This condition changed my life.  I became so self-conscious about my facial twitch that I did not want to go out.  I decided to speak to a neurosurgeon about surgery.  I live in the united States and I saw a surgeon in Philadelphia, PA.  We discussed a procedure called MVD.  The doctor sent me for an MRI.  It showed that an artery in my brain was resting on the facial nerve.  I had the surgery on Oct. 10, 2014, three weeks ago.  I am happy to say that I awoke from the surgery spasm free!  I wish I had opted for surgery 10 years ago.  I feel like myself again! 

    I know exactly what you are experiencing.  I never found a way to suppress the spasm.  Best wishes.  Let me know if you would like more information about MVD.  I am still in recovery mode from the surgery but feel so blessed that the spasm is gone.

    Regards,

    Sue

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  • Posted

    Hello Kassy D,  

    Just to notify you that I have answered your question here in another post under New Findings. Best

    Regards.

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