Remitting Hemifacial Spasm - surgery or not?

Hi Eleanor. I'm really happy to learn that someone else has had good luck with the methods I mentioned. I've been hoping I wasn't alone in finding relief this way, perhaps indicating that there are methods to reduce the condition that don't involve surgery or drugs with nasty side effects. I'm experiencing such a gradual decrease in my symptoms that I don't notice a change for several months, then I realize I've improved even more than the last time I reported. I haven't had a spasm for months, and the tightening in my cheek has lessened again. I don't know that this condition will ever disappear, but it seems to me that if I'm vigilant in my behaviors that contribute to the condition, then I can control it. It also seems to me that we all have different individual behaviors that irritate the nerves, but if we address each contributor and mitigate it, the sum total is a lessening of irritation to the nerves that allows them to relax. In other words, everything I'm doing may not apply to the next person, but if you can identify those irritants that affect you and mitigate them, then you might have equal success. I'll be very interested to learn of your long-term results. Best wishes, and keep us all posted...Rebecca

Hi Rebecca. How great to get a response from you. I have been using the SPZM now for about two weeks. I only take two a day though one in the morning and one at dinner time. I might up the dosage. I've definitely seen a reduction in symptoms. I'm also taking Niacin tablets twice a day. It says they are for Nerve Health. I'm thinking if there is some irritation, that also should help. Also I take two ibuprofens a day too. And I'm on blood pressure meds for quite awhile also. I've read hypertension is also a contributing factor.Popping pills has become a pastime of mine now. I think you take more SPZM and more Ibuprofen than me and actually I might increase both. Like you I can feel that squishy feeling in my cheeks at times, but rarely does it involve my eye. It is such a weird affectation. If I am otherwise involved in something that requires all my attention, I can go hours without any signs of the HFS at all. Just today I went to a bridal shower and from 11 am until 4:30 or so...nothing...not even a cheek quiver. But just let the thought come into my mind that it's been so long without any signs...and poof, my cheek starts up a little. Your mind is a wondrous tool...it can affect your whole body sometimes. Also I am sleeping on the other side. Like you I am a pillow scruncher and I am sure after 45 years married and sleeping the same way has put a strain on my neck in that area too. Also like you, I am determined to mitigate this as much on my own without surgery or botox. Congratulations on your success and for passing your formula on. As far as behaviors...brushing my teeth seems to be one for me and unfortunately I've not come up with any alternative LOL!! Thanks again. And if you have anything to add...or if you can let me know how many SPZM and Ibuprofen you are taking again...that would be appreciated.

Hello Again Eleanor. I started using SPZM under the direction of an acupuncturist a couple of years ago; this was before I read that acupuncture doesn't help! He tried another herbal first, with no result, then suggested SPZM, which he had used with patients who had upper neck problems. We were both surprised that it had such a positive effect. I began with five tablets four or five times a day. My spasm was fairly advanced at that point, almost continuous all day. As the spasms began to decrease I decreased both the ibuprofen and the SPZM. I still took three ibuprofens three times a day, the max suggested. With SPZM I went from five to four (3-4 times a day), then to three (3 times a day), and I now only continue that if I feel my cheek tightening up again. Otherwise, I now use the least possible and occasionally stop altogether to see the effect. I did have my acupuncturist check with the manufacturer to ask if the continuous use in large quantity is safe and was told it would be okay. I had no side affects at all, so felt very comfortable with this. Of course there are no scientific or medical studies on this herbal, and most physicians scoff. All I know is it works for me and has helped to provide relief from this condition. About brushing your teeth...have you tried an electric toothbrush? It may allow you to lift your cheek muscle less and reduce that irritation. If it spasms anyway, try applying a frozen compress to the area immediately afterwards; I found that stops the spasm in its tracks rather quickly. Best wishes, Rebecca

Hi Eleanor and Rebecca

Reading both your posts makes me feel like revisiting my decision to have surgery, but, I think I've come to the end of the line with this condition and need to be cured sooner rather than later. I've had it for 9 years and it's getting more than tedious. However, if the surgery does not work for me then I shall be ordering some or all of these tablets, for sure. I also find tooth brushing is a major trigger Eleanor, but, in my case, it's the strong taste of the toothpaste that seems to set it off. In fact, taste and smell and cold and sunlight are my major triggers and it's hard to mitigate all of these factors. Also, any stress and lack of sleep are my other major contributors, and I seem to have both of these in good measure.

Very best wishes to you both and really really hope that you may have hit on something which will help both you and others in the future. Wonder whether it might be worth starting a new thread entitled 'herbal remedy suggestion for Hemifacial Spasm'? It's great that we can all help one another isn't it.

Very best wishes, Roseann

Hi Roseann. 9 years...I can't imagine. It's only been around 4 months or so with the spasms. A few months before that with the eye twitching. It would be wonderful if I could "nip it in the bud".... we shall see. One thing for sure those SPZM pills make a big difference.I'm taking a smaller dose than Rebecca...but then maybe my HFS is not as advanced as hers and yours.Funny about the smell of the toothpaste. Sorry "funny" is not the right word... I really believe all is connected and your mind can influence all reactions your body makes.I just turned 70 so the operation is really scary to me at this point...recovery I'm sure would be longer and more stressful. If you decide to have the operation...you may even be scheduled I didn't read prior posts....I wish you all the best for a complete recovery and spasm-free life. Thank you for your good wishes...sending them right back to you. Eleanor

Thanks Eleanor. I'll keep you posted on whether or not I go through with the surgery - it's due around end of May, early June, in Bristol. Yes, 9 years is a long time to live with this condition (though thankfully I've had some periods of complete remission - the last one was 8 months - but the spasms come back worse than the last time when they do return) and it has made a huge difference to who I am as a person. I am something of a recluse these days, and used to be a social worker. I'm 62 by the way and so not too far off your own age. I too have high blood pressure and take lots of meds for it. Also, I've had neck problems for about as long as I've had HFS. My consultant summed up HFS better than I could ever have done in saying that it's 'emotionally blunting' - I couldn't agree with him more, mainly due to the loss of my smile which used to be a big part of my personality.

Good luck with the SPZM +++ solution. I so hope it works for you and that you don't have to endure a long run of this condition. Wouldn't that be marvellous!

Take care, Roseann

Hello to Eleanor & Roseann. Following up on Roseann's suggestion, I started a new forum under the heading "Are there alternative methods to control Hemifacial Spasm?" and posted copies of some of our discussion that we started in February. Then I added one more comment. I'll be very interested to see if we get more helpful suggestions on alternative methods of control from other people. Every little bit could help! Rebecca

Hi again Rebecca

Thanks for doing this. I'm sure you'll get some replies and hopefully other suggestions which might help us all. I'll just write something on your new thread so that I get updates sent to me.

Good luck and hope you stay well, cheers, Roseann

Rebecca...having a little trouble finding that new thread. I tried search by subject line with no luck...but like you, I don't give up easily (or give in either for that matter). Also...am I the only one in the U.S. on here. I live in Pennsylvania but happy to meet all you "across the pond" folks.and Roseann...remission would indeed be "mahvelous"...I can't imagine though have periods of remission like you only to have it return...heartbreak for sure. So sorry.....

Hi Eleanor. To find the new thread, just go to the top of this page where you see "Discussion forums - Conditions H - Hemifacial Spasm" and click on "Hemifacial Spasm." That will take you to the list of discussion topics. Actually, I'm also in the U.S., but when I didn't find an active American site for HMFS discussion, I joined this UK site. There is an old U.S. site that has useful information but no recent activity. Rebecca

Hi again Eleanor and Rebecca

Fancy you being from 'across the pond'! And isn't it great that we can all hook up in this way, even though we live oceans apart.

We UK folk have a long running thread which Leon (YKL) started about 16 months ago. It's entitled MVD Surgery 8 days ago or something similar and has numerous posts from people who've had surgery and also those of us who are a teensy bit scared of it. Have a look if you've time to spare.......

I used to belong to the HFS Association but it seems to have seized up in recent years. And, yes, it's a blessing and a pain to have long remissions. My would-be surgeon says that I am 'atypical'.

Bye again, Roseann

Hello, I'm glad I found a forum like this. By the way I'm Jayson 26 years of age and from the Philippines, way to far from you guys. I have been suffering from HFS as well, I think it's around 3 years already, until then it's never been cured. It's so annoying because it is affecting my social life and my job as well, don't even want to go to meetings as well. Can't even look eye to eye to the beautiful girls! LOL. hahaha! I have done several treatments for this, like Carbamazepine, Rovotril and Botox was the last and still no work at all. Now I've been thinking of that MVD, but I don't think we have that specialist here in my country, haven't talk to a doctor yet, but I think it is too expensive here. I have read the thread and i would like to try some of the advises there, like the Ibuprofen, Excedrin (if it's still available here), I will try to look for that Herbal Medicine (SPZM) I hope that this was available in my country.

Thanks a lot guys!

Jayson :-)

Hi Jayson

Welcome to this forum, and so sorry to hear that you've developed HFS at such a young age. It might help you to look at the HFS Support Group on Facebook where there are several other people of your age from around the world. Many of them have had MVD surgery already and they can offer a lot of insights. The general concensus is that nothing other than surgery is going to work in the longer term and you do have a very long term to look forward to and you deserve to get your life back. However, I understand what you're saying about costs and expertise in your own country. We are very lucky here in the UK and can access surgery on the National Health Service (free of charge). But, it's still a big decision. Excedrin is definitely NOT a cure in any way and is just something which I find gives me an hour or two of relief. It must be so hard for you to have this condition when your social life should be at its best - really feel for you. Take care and let us know if there's any info that we can help with. Bye for now, Roseann

Hi Jayson...so sorry you too have this dreaded condition.Especially at a time of life you should be out enjoying yourself and meeting that special someone. I'm sure it's difficult, but you sound like a strong young man and determined not to give in to the situation. I've tried the SPZM route that Rebecca uses and can tell you IT WORKS. I was pleased with the results...but unfortunately the pills did not agree with my stomach or digestion and twice I had to give up taking them. I've not tried Excedrin but that's next on my list even though that's only a "quick fix" for a short time.I too think you should find that facebook page on HFS because there are so many young people like yourself on there and also people from around the world who might be able to give you some direction of where to go to have the operation. If I were younger I would definitely be considering surgery...but I am an "old lady" now and would not want to put myself through the operation or recovery. But the odds of it resulting in a spasm free life make the risk well worth it especially when, like your case, life is just basically beginning. I wish you well and don't be a stranger to this page. Keep us posted on how you're doing (it helps to talk to others in the same place) and what efforts you're taking to ease or remedy your HFS. God Bless You....Eleanor

Hi Jayson, I've also had HFS for several years, but I've been able to bring the spasms under control for almost two years now by following the courses outlined in my previous posts. The general consensus seems to be that HFS can only be stopped through surgery, but the surgeon I consulted informed me that my spasms would have to be highly visible before surgery would be considered. Well, I don't want to be miserable for years, waiting for uncontrollable spasms to convince them to operate. So I continue to attack my HFS on ALL fronts. I can't emphasize this enough: you must address every irritant and mitigate it however much is possible. I notice that not all the same irritants apply to everyone. For example, others in this forum have mentioned that the scent of toothpaste sets off a spasm. I haven't had that problem. But everything that does irritate the nerve is something I try to avoid or lessen. As I mentioned in the earlier posts, I do everything from taking ibuprofen and SPZM to using eyedrops regularly for dry eye, a cold or frozen sleep mask to rest the nerve at night, always sleeping on my right side to take pressure off the left cheek, eyedrops for dry eyes, bite plate while sleeping because I grind my teeth at night, and during the day I make a point of dropping my jaw whenever I can to take pressure off the cheek. These practices and more have become routine, and as a result I haven't had spasms in months. I still have a tightening of the cheek that becomes worse under any stress, but when I become aware of the tightening up, I work at reducing it. It may be that because I started these procedures in the first couple of years, I've been able to bring it under control. At any rate, it continues to get better, rather than be a progressive deterioration. I feel it's worth the effort, rather than being miserable for years until a surgeon finally agrees to operate. If you want to try SPZM, I imagine you have doctors of Chinese medicine in the Philippines: SPZM is Shao Yao Gan Cao Tang in Chinese. If it causes stomach problems for you, the doctor might also be able to help you with that. Or you may find other ways to lessen the irritants that may be unique to you. Good luck and keep us informed! Rebecca