alternative treatments

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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 the idea of botox injections.

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  • Posted

    Hello Jessica,

    I have heard that chiropractic manouvers might work and would not be surprised it can work if the correction is at the correct level.

    However, at what level of the spine?

    C2 to T5? Maybe. Further down L4/5 might help too.

    I find that sleeping sideways towards my left ( for Left side HFS) is horrid due to the ear's pulsation and "wind" noise, so I will turn to the right.

    Botox is bad. Facial muscles degenerate and my face has lost fullness. Moreover its expensive, as the injections have to be repeated every 3.5 months. The ear sounds persist.

    I am trying acupuncture and back massages. Cupping is good for painful areas and injuries.

    Acupuncture needles with electro-stimulation is what I'm trying.

    I will post only if they work and send hallelujah message to all afflicted here smile

    Bye.

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  • Posted

    Hi Jessica, I'm sorry that you have HFS and are searching for ways to treat it.  My experience (both personal and based on over 4 years on these forums) is that medications do not generally work for HFS.  Neither sadly do any of the alternative ideas such as chiro, acupuncture, reflexology etc.  These things may help your stress levels, which in turn assist somewhat with the intensity of spasms, but they do not in themselves help the HFS.  Botox injections are the only proven helper for HFS but they do need to be repeated about every 3 months - I found them best when just my eye was involved and I didn't much like them in the mouth and cheek area because they froze my face completely.  As you have probably already found out, the only potential cure for HFS is microvascular decompression surgery - with the best surgeons you have an 80 - 90% chance of a cure.  It is good that you have a 'normal' MRI result - this does not mean that you don't have a compression of the 7th cranial nerve, but it does mean that there are no nasties causing your spasms.  Sorry that my information is not more positive concerning alternative therapies - many have been tried and few seem to have worked!

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  • Posted

    Hello Jessica,

    i have had Rt HFS for nearly two years now following a small stroke and thyroid cancer. No cause found for it, but cranial osteopathy definetly helped although I couldn't carry on with it because of the cost. 

    i am now coming up to my third set of botox and my eye is jumping away and my cheek pulling. I can feel it , but others can't see it unless they look closely. Have also experienced hearing loss both sides and now there is a strange clicking in my left ear, which sounds like one of those flint gas lighters being repeatedly pressed! No one has as yet mentioned surgery, but because it is my good eye, which is affected, I cannot see without the botox. It is a choice between the devil and the deep blue sea!

    Good luck, but my experience so far has been that the neurologists know very little about it and are not inclined to recommend anything other than botox.

    I am going for another scan soon and will ask if any of the others have shown anything in that area, but am not hopeful.

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    • Posted

      Hi Jenny, sounds like you've been through way too much!  This is just a shot in the dark, but someone on another forum mentioned getting relief from spasms by putting an anti-seasickness patch behind their ear!  It might just be worth a try, but certainly won't cure a compression if that is what's causing your spasms and clicking sounds.  All the very best to you.

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    • Posted

      Hello again Roseann,

      Yes, Im starting to think I have reached my sell by date. It's ODTAA time again, ( one damn thing after another).

      I am sick of tests scans etc, but know the NHS is looking after me superbly especially the marvellous folk at the Royal Marsden, so am hanging in there and not giving up. Would like to get the spasms under control, but feel at 83 I am too old for yet another operation. I will certainly give the anti sickness patch a try, what can I lose after all!

      I am due at St George's for a neurology appointment next week so will ask again if any compression was found on any of my numerous scans, although I don't remember having any contrast media injected and that presumably is necessary?

      The cranial osteopath thinks it most likely it is damage caused long ago when I was thrown on to my head after a road traffic accident where the motor cycle won hands down. He has spent many sessions manipulating the bones in my skull back into their correct positions thus curing my debilating migraines. So I know miracles can happen and I am not giving up yet!

      How nice to see you still giving such sound advice to all of us suffering from these spasms. Please do go doing so as it helps such a lot.

      Jenny x

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    • Posted

      Hi Jenny, lovely to hear from you too and I don't think you're past your sell-by date at all - you're clearly a battler, even if it is against all the odds!

      I don't think it's essential to have an MRI 'with contrast die' because a compression will often show up (as mine did) without this.  However, if you're not considering having surgery for your spasms it's possibly not so important to get the MRI scan.

      You must be over the moon to be shot of your migraines - I was also a 25 year sufferer and I am very pleased to be shot of mine too (mine were hormonal).  Hopefully you will see more joy from your osteopath - hope so.

      Take care and keep fighting the good fight my friend.  With love, Angela

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    • Posted

      Hi Angela,

      Thanks for all your emcouragement, as you know I don't get much at home as Fred is now largely lost in his own world. All he is interested in is food, tv and time in that order!

      A friend took me to a local garden centre this morning and that was such a treat. Also my old school friends want me to go for five days to the IOW with them so now I will have to rally the family and call in some favours. I think it would save my sanity to get away for even a few days with my friends. Hopefully another miracle will happen!

      I will let you know how I get on re the neurology appointment and the seasickness patch, but I'm not sure whether our local chenmist will stock them. On the other hand people are going on cruises, planes etc at this time so maybe they will.

      Love

      Jenny x

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    • Posted

      That trip to the Island sounds like 'just what the doctor ordered' Jenny - can't imagine how hemmed in you must feel in coping with Fred's illness and limitations.  Life never was fair, was it?   And to have all of these facial issues on top of it all must be just about all you need, poor girl.  But, I sense that the fighting spirit and the desire to keep on living it large are still in there somewhere.  Thinking of you as you continue to fight the good fight.  Have a lovely time on the Island and do hope the family will support you in getting a well earned break.  Love, Angela

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  • Posted

    Update - Have seen a chiropracter 3 times so far - she did some adjustments to my neck but as mainly been working on my jaw (I have TMJ) and have noticed improvements in my HFS - the full spasms are not as severe and there are less of them - and seems to be mostly smaller eye twitches instead of full spasms. Hoping that the cause of the problem is my TMJ and that it can be resolved from the adjustments - chiropractor said that we may also try doing cranio-sacro therapy 
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  • Posted

    Hi Jessica! Hows your HFS now? Ive been so worried about this that causes me so much stress and depression. I also have sleepless nights sometime. Ive been researching on the alternative treatments of HFS since I dont want to consider Botox and surgery, aside from I cannot afford it, I am also afraid. I want to try acupuncture, is it effective? have u tried? U mention you went to a Chiro? How was it? Thanks ahead, Ms jessica. 

    God bless us!

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    • Posted

      I have been spasm and symptom free for about 3 months now - I have been seeing a chiro to have my back, neck and mostly my jaw adjusted. I have also been using the faciablaster by Ashley Black to help release the facia.
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