Remitting Hemifacial Spasm - surgery or not?

Thanks for sharing all this background Lilith. What can I say, other than I really feel for you. In your line of work this must be a double blow to have HFS, and kind of makes one realise how shallow beauty and beautiful people can be eh. I was a social worker and found that I couldn't do the job any more because I looked more in need of help than my clients! HFS makes one realise how much one needs one's smile and one's face for communication, and you only miss it when you lose it I guess. Sounds like surgery might be as much of a need as an option for you because you're too young to give up on yourself. My consultant was amazing and said to me exactly what I had failed to put into words/thoughts myself........... He said "it sounds like this condition has emotionally blunted you". He could not have put it better, but what won't be blunted is my spirit.

One last thing that might possibly help you. I find that when I take EXCEDRIN Migraine tablets (produced in USA) I get a couple of hours relief from the spasms. Might be worth a try for you?

Very best wishes, Roseann

I first experienced the gradual onset of hemifacial spasms in 2009. By January 2010 the tightening had become annoying, and it had begun to spasm and pull on the lower edge of my eye. I went through the usual tests with a neurologist, whose suggested treatment was either anti-spasm medication or botox injections. Patients' comments about side effects from these treatments convinced me not to try either. Instead I examined all possible causes for my condition and pursued multiple ways to alleviate the spasms. I now have my condition almost completely under control. I still feel a slight tightening in the left cheek, which takes me back to the beginning symptoms three years ago. I'll describe what I have been doing.

For temporary relief: ibuprofen and Health Concerns (brand name) SPZM (Shao Yao Gan Cao Tang) Herbal Supplement 1875 mg per serving, available for purchase on the Internet.

Eye Mask: Merely closing the eyes tightens the cheek muscle and increases spasms. I purchased an IMAK "EyePillow" (designed by an orthopedic surgeon) with ergobeads that can be either frozen or warmed in the microwave. It's heavy enough that the pressure of the beads aids in keeping the eyes closed, lessening the tightening of the cheek muscle, hence lessening the spasms. I've found that using it frozen when I first go to bed stops the spasms completely. This allows the cheek muscle to rest more through the night and helps lessen the spasms in daylight. Warming the mask and using it for five minutes periodically helps also to relieve dry eye symptoms.

Stress: Anything that causes the cheek muscle to tighten makes the spasms worse. I've found that by consciously dropping my jaw the spasms lessen. I can also consciously attempt to lessen the spasms by relaxing the face, using the cheek muscles less. At night I now wear a mouth guard regularly since I have broken teeth by grinding them in my sleep. This no doubt also contributes to a real tightening of the cheek muscle.

Dry Eye: Use eye drops regularly.

Long-term relief: During forty years of marriage I have always slept on the right side of the bed. I'm in the habit of turning to my left side when sleeping. I noticed the spasms are much worse when I do that. I started sleeping on my back, and with with my head tilted slightly to the right the spasms lessened. I also now turn to my right side, tilt my head slightly left, and the symptons lessen. I now believe that compressing the left side of my face into a pillow over forty years contributed greatly to this condition. After less than a year of sleeping on my other side, the hemifacial spasms have disappeared almost completely. I do believe that the treatments mentioned above helped to bring my condition under control, but changing my sleeping habits seems to have been the most significant contributor to my recovery.

As per my opinion for hemifacial spasm non-surgical treatment is the better option. One injection of botulinum toxin which is given by a neurologist. This toxin is injected into the particular muscle which is affected. I have not gone through surgical treatment.

Hi Rebecca and Jeremy

Thanks so much for your comments and particularly for all of these helpful hints Rebecca. I really appreciate all of these suggestions and can definitely see the validity in them.

Unfortunately, since first posting on this site things have been very up and down for me. Last year I enjoyed 8 months of total spasm free relief with no apparent cause for the remission. Then, my daughter had some worrying health problems which stressed me out and almost immediately the spasms returned (last June). Since then things have gone from bad to worse and I now have regular total occlusion of the right eye with the cheek and mouth spasming in rather dramatic style. I also have intermittent long lasting spasms throughout the night no matter which side I lay on. I do find that trying all sorts of different head positions sometimes brings relief but nothing is at all foolproof. Life is currently quite tough and I have gone into recluse mode, avoiding most social interactions. For a former social worker that's hard!

I've finally decided to bit the bullet and go for surgery, but I am not sure how long I shall have to wait. Needless to say, I am petrified and if there were any alternative I would be trying it. The botox injections were unhelpful to me (I couldn't cope with being asymetrical and it was as bad as the spasm itself) and it also left me with a caved in cheek on the affected side. The only medication which has helped me for a couple of hours is an American painkiller called Excedrin - it gave me a few hours relief, possibly due to the caffeine content. It's currently out of production so there's not much else that's helped.

I really hope that you will both continue to find relief in the various methods you're trying. Anything is worth a go and I shall certainly be looking into Rebecca's suggestions and keeping my fingers firmly crossed. But, I somehow think the condition has gottent he better of me after nearly 9 years and I may just have to be very brave and see if I can come out the other side with my life restored.

Very best wishes and thankyou again, Roseann

Roseann, After 9 years I can certainly see why you are very discouraged. While you're waiting for surgery, however, you might find some relief in the methods I mentioned. I was also very discouraged when I read numerous reports that this condition is incurable without surgery, but I also noticed that no scientific studies have pinpointed the cause of hemifacial spasm. That is what most encouraged me to try to find all possible contributors to my condition and to address each one individually. I found that the frozen ergobead face mask allowed me to sleep through the night almost immediately. That added rest made facing the day much easier. During the day I used ibuprofen at the maximum suggested level three times a day along with the SPZM herbal tablets at maximum dosage (5 tablets four to five times a day at first, then gradually decreasing as the spasms lessened). I had no side effects taking SPZM, though some people experience increased bowel movements. SPZM is a mild anti-spasm herbal formula.

As you mentioned, stress adds to the problem, and just worrying about the spasms is stressful, so anything I can do to relax the facial muscles seems to help alleviate the condition: dropping my jaw whenever possible, spraying my face under hot water in the shower, sipping wine at dinner, using eye drops regularly, turning off lights that glare in my face, using the computer less to reduce the effect of monitor glare, looking downward when possible and focusing on dark objects. It has taken over a year for all of these factors to VERY GRADUALLY lessen my spasms to the point where I no longer have spasms, just a tightening of the cheek periodically. I urge you to be patient, don't get discouraged, and if none of these things change your condition significantly, perhaps your waiting period for surgery would be somewhat more bearable. Best wishes, Rebecca

Thank you again Rebecca for more encouragement towards these self help methods. I shall definitely be ordering some of those SPZM tablets and shall keep my fingers firmly crossed. It's really kind of you to share this information, and might be worth copying it to Leon's thread which I think is entitled 'Surgery 8 days ago'. We have quite a community on that thread and it's always interesting to hear of other people's experiences and successes. It's certainly helped me to know that others have felt similar to me and have reacted in similar ways to this annoying condition. Leon (YKL) is a mine of useful info re the scientific stuff and past studies. I also found Professor Coakham (Spire Hospital, Bristol) very helpful in explaining the whole thing to me - he seems to be the expert in the UK.

Take good care of yourself and I so hope that your methods will bring long term relief. I seem to be the only one who has had long periods of total remission, and so I hope you will be joining me in this lucky group! All best wishes, Roseann

Hi Rebecca, you are really brave. It’s really great to go with this much of pain and encouraging others. I really appreciate you. Even i got encouraged. Thanks

Hi all,

I had my 2nd MVD on 7th Feb, out hospital (2nd day ), and so far, spasm free..keep waiting on a spasm, but being able to smile, talk to someone without spasms screwing your face up, bliss, the day I have waited for...my old life and face back, no hearing issues, I'm soooo happy, been tough, had to be brave to do it again, but hopefully, it's been woth it..

Good luck to you all, I will respond to any questions re surgery, just ask.

Sean

Hi Sean

I can't tell you how thrilled for you I am and I can't believe you were out of hospital in 2 days! You deserve your life back for all you've been brave enough to go through - twice!

I am still petrified of the surgery and so if there's anything that you can tell me to reassure me then fire away........................... I would give anything to have my face and smile back (not that it's a very special face, but it's mine and I liked it as it was before normality was taken away by HFS).

Get well very soon and then go out and live it large. So so happy for you Sean. Very best wishes, Roseann x

Hi Rebecca. I was very interested in your form of handling HFS. I am now on a SPZM program, along with ibuprofen and also taking Niacin for nerve health. I've noted a substantial decrease in spasms. And as you noted, most of the time I do feel "something"....it's just a movement in my cheek and doesn't usually even reach my eye. Your suggestions and explanations are so spot on.... I am ordering my next bottle of SPZM...I am determined to be in the ....less than 10% remission.....category. With lots of prayer and every effort of my part to take charge of my spasms and do everything I can to negate them, hopefully like you I will minimize them as much as possible....and who knows...maybe even eliminate them. I sincerely hope this comment reaches you Rebecca because you have made a difference in how I'm handling this...Thank you.