Support Group for Hemifacial Spasm sufferers?

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Hi there,

I've had Hemifacial Spams for two years now. They can get so bad the whole of my face is pulled to one side making talking and eating difficult. It's horrible as you're trying to 'fight' your face and when people notice - it's just the worst feeling. sad

I would like to keep in touch with fellow sufferers as I have no-one to relate to and to talk to about it who really understands what it's like. Does anyone know if there is a UK based support group I can join? I wouldn't feel so isolated and it might help me to cope better.

Hope someone can help :D

Thanks x

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  • Posted

    hi bumble smile

    my name is dasa and i have had the same problems for about a year and half. i know exactly how it feels to try to fight it and control my involuntary movements. i deal with people every day and it makes me so helpless sad but you just have to carry on. i have seen neurologist already and had my mri scan which did not show any cause for my spasm but i have them. they are worsening and i have just tried acupancture and makra massages which has helped for few weeks but it is back the way it was now. i am on the list to have my botox treatment and i do not know whether to go for it or not. i am sending you some information and contact if it helps and you can always send me an emaill if you want to

    see you for now bumble

    dasa

    This post has been edited as it originally contained copyright material from another site - for further information please see www.dystonia.org.uk

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  • Posted

    Hi Dasa,

    It's so good to hear from a fellow sufferer. I heard about botox injections and went to see a Doctor. My GP was on holiday - so this was someone I hadn't seen before. He wasn't very helpful and kept asking me to 'mimic' exactly what I go through as I didn't have a hemifacial spasm during the appointment. He said he'd never seen one before and I felt he was treating me like I didn't have any feelings at all - just an interesting subject. I have spasms nearly everyday now, and to be honest I had an MRI and they do know what's causing mine. I'm hopeful of botox being the answer Dasa as I have read how beneficial they have been to other sufferers. Thank you for the tips and I will look on the Dystonia website. Please keep me posted as to how you get on!!!!! I will let you know if I manage to get anywhere when I finally see my GP.

    Take care

    Bumble :rainbow:

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  • Posted

    Hi Bumble,

    I have had HFS since late 1990 and had the microvascular decompression in 1991. The spasms returned within 6 months. I started with the Botox injections in January 2003, in fact I am going for an injection this afternoon. The problem with the injections is that they don't always seem to work, its kind of hit and miss. I suppose I have had the condition for so long I have learned to live with it and often use the condition as an ice breaker and I am still waiting to be slapped for winking at people.

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  • Posted

    Hi there,

    I've just started botox injections two weeks ago!!! I know this sounds daft - but around my eye socket feels 'frozen' and when I laugh or smile the eye doesn't react like the other and remains 'starey'. Do you have the same? :?: It's all so new to me and I didn't know what to expect. Sorry if I sound stupid :cry: .

    I've never been accused of winking at anyone yet!! It's good you use it as an ice breaker. I've had some negative comments from work - but that's life I suppose.

    Hope to hear from you as I'm interested about the botox treatment. I still suffer from HFS, however not as frequently!!!

    Take care

    Bumble :angel:

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  • Posted

    Hi Bumble

    I have the injections about every 3 months.

    I used to find that about 7 - 10 days after the injection my eye feels quite dry and then the twitching used to stop for a couple of months, but this only lasted for the first year. After this inspite of the injections I was finding the twitching did not really stop, so I was given injections in the eyelid and in the corner of the eye, but the I found after about day 10 I would have double vision which could last for a couple of weeks. So the dose was reduced and they stopped the injections in the eyelids. Now I get two/three shots in the eyebrow area and in the cheekbone. It kind of works but it's not great.

    It used to be hard telling off the kids when they were young because they used to mimic the twitch, at work we just laugh about it so everyone is kind of comfortable when I sit there with a eye closed. However there was a funny instance when I met a supplier for a particularly tense meeting and he didn't know about HFS and suddenly during the meeting he was trying to mirror the twitch.

    Try not to let it get you down

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  • Posted

    [quote:d5a73ec44f=\"Bumble\"]Hi Dasa,

    It's so good to hear from a fellow sufferer. I heard about botox injections and went to see a Doctor. My GP was on holiday - so this was someone I hadn't seen before. He wasn't very helpful and kept asking me to 'mimic' exactly what I go through as I didn't have a hemifacial spasm during the appointment. He said he'd never seen one before and I felt he was treating me like I didn't have any feelings at all - just an interesting subject. I have spasms nearly everyday now, and to be honest I had an MRI and they do know what's causing mine. I'm hopeful of botox being the answer Dasa as I have read how beneficial they have been to other sufferers. Thank you for the tips and I will look on the Dystonia website. Please keep me posted as to how you get on!!!!! I will let you know if I manage to get anywhere when I finally see my GP.

    Take care

    Bumble :rainbow:[/quote:d5a73ec44f]

    Dear Bumble

    I too have hemifacial spasms. I was lucky that I first saw a neuro surgeon who was friendly with a prof. in Newcastle upon tyne who has clinics for dystonia. I have botox injections every 10 weeks and these make such a difference cos I tend to get headaches towards the end of the 10 weeks when effects of Botox are wearing off. Even just going to the clinic (I've been this morning) is helpful as you seer others in the same boat. My neck is also effected and is pulled to one side and my chin down however at this clinic I see much worse than me. Dorothy

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  • Posted

    I've suffered with left HFS for five or six years now. It started with a flicker under my left eye and gradually progressed down my face. A neurologist suggested Tegretol which didn't really work and after three years i was referred to the opthalmic dept. at my local hospital for Botox. Initially the injections seemed to help but as the condition progressed down my face it was a case of 'Hit and miss' and I found that my face was left lopsided and I couldn't smile. It it such a distressing condition and people don't realise how upsetting it can be. It's also physically uncomfortable and debilitating. Mine is triggered by reading, eating, driving, using the computer and anything that requires concentration - even shopping! My confidence is affected especially at work where I'm meeting people all the time - some are very kind and others very insensitive. You try to cope with it by covering your face with your hand as you talk etc. I've had MRI scan and was offered surgery which I rejected. However I am now reconsidering as it's affecting my quality of life, and after reading other websites, especially one from the USA, I feel more confident to have MVD.
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  • Posted

    Hi everyone,

    I am a 40 year old man who first started suffering from hemifacial spasms a year ago, I first noticed twitching under my right eye, when i came round after a hernia operation. This quickly spead to involve the whole rightside of my face. I now cannot read a book or look at a computer screen for to long, as my spasms become worse and I find it hard to follow the words ( also gives me a headache as i try harder to keep the text/screen still).

    I have had a MRI of my brain stem which showed a cluster of blocked vessels causing my face to twitch. Unfortunatly due to suffering from a blood disorder, botox and medicines aren't suitable for me. I have seen a surgeon about MVDs, but due to having blood clots on my lungs at the moments it is not possible to operate. He also said that too oparate on someone with a blood disorder is more complex and that I need to go away and think long and hard before I make my mind up. This is where my problems begins. If you aren't a sufferer then you cannot understand how upsetting this can be. My family think I should not have the surgery, however i am keen to have the surgery, after my clots have dissolved. I would like to hear other peoples experiences of surgeries and how it affected there family. Good luck to all fellow suffers.

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  • Posted

    Hello there, I notice that all of these posts are over a year old. If there is anyone still out there that is still suffering with HFS? I am currently suffering with this condition and am trying to get to the bottom of what is causing it. I suffer with constant popping of my ears also which drives me nuts. I am currently trying decongestants to see if this will help as I am convinced that its connected with my sinuses. Does anyone else suffer with their sinuses along with this condition?
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    • Posted

      Hi aurura

      I have HFS for about 6 months now and have tried MVD surgery which failed. Am taking haloperidol which doesn't do much so am looking at botox next. My HFS is caused by a tumour which is inoperable but live in hope that the spasms can be controlled. The popping in my ear from it drives me crazy! Good luck with yours x

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    • Posted

      Hi Emma, thank you for your reply. Im sorry to hear about your tumour. I have had an MRI scan which hasnt shown anything up unusual. It helps just knowing that other people understand how it feels. Good luck with the botox x
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    • Posted

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    • Posted

      Hello Aurura,  I like, and quote what you wrote: " ...and am trying to get to the bottom of what is causing it ".  A weird affliction, I've coped for some 6-7 years. It is good fighting spirit, since the cause of the spasm is largely unknown.

      I'm still working on the premise that the spine should be as straight as possible, but habits and occupational postures may have caused our spines to be twisted, so currently I use a foam roller to remove some tense areas in the back. I have more calm periods now.

      The worst eye spasm occurs during meals, and anxiety. I have no sinus problems. Dark glasses help.

      The ear sounds are not always there if the head face to the right.

      Lets hope somebody find the real cause someday.

       

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    • Posted

      My husband has had this for 7 years. We found someone who explained to us that it's a nerve and a blood vessel hitting each other. Over time, the coating on these wares away causing the twitch. He's having surgery tomorrow morning.

      Look up "Dr. Vic Oyas' Oyas twitch" in search.

      Wish us luck!

      My hubby got teary when the doctor said he could fix this....and he's not a teary guy!

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    • Posted

      Soory about your tumor.  I have had HFS for the last 4 years, and botox seems to work for me for about 3 months.

      At the present time I am looking into Microvascular decompression surgery, since my insurance will not pay for the botox, and my doctor requires 75.00 per year to send a request to the Pharmacy.

      I have had MRI- and am  waiting to see what the neurologist thinks.

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