Canadian and suffering need advice

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Hi there!

I'm a 36 year old female living in Ontario Canada, my spasm started with my right eye a little over a year ago and at first I thought it was just my eye twitching due to either stress or because I was straining my eyes to much at work gradually it has gotten worse. Mine is what I'd still consider a "mild" case but it is still very hard for me socially because I'm very aware when it starts twitching and almost closes at times depending on the severity of the twitch on any particular day.

I was officially diagnosed this past February and I'm about to go for an MRI and then be sent for the injections however, I'm not sure if I want to sad I'm so frightened because one of the side effects of the injections are drooping of the eyelids and I'm not sure what would be worse sad has anyone out there had the injections and could you tell me if you felt 100% better or if the side effects caused your face/eye to just droop???

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9 Replies

  • Posted

    Hi Kathy,

    I had botox injections over a 4-year period. The first 2 years worked very well for me. I had 3 injections of 15 units each around the eye, and my eye stopped twitching within a few days. This will last for between 3 to 4 months before requiring treatment again. I have experienced drooping of the eye and the upper lip a couple of times. Also had bruising under the eye sometimes if the needle is withdrawn incorrectly, which takes a few weeks to fade away. The botox stopped working for me after 2 years as we develop immunity after awhile. Many sufferers have shared their botox experience on other threads here. You can also find a wealth of information about this condition on hfs-assn dot com, which has not been updated for a few years now but still provide many helpful tips. There is also the Yahoo hfs group and 2 more support groups on Facebook. I will post the links on the next message.

    Hope you find your answers and support here and elsewhere.

    Best wishes

    Leon

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  • Posted

    I have a question.

    Your first twitch is upper eyelid? or lower eyelid?

    I've suffered from uper eyelid twitch for 3 mo. 

    I'm very nervous about it.

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  • Posted

    Hi Kathy

    I also live in Canada. I am from Newfoundland.  I know this is an old post and I am not sure if you have had surgery, but I have to suggest that you try seeing a chiropractor to have your neck adjusted.  It worked for me.

    I have had facial spasms for a very long time. I remember my eye twitching back in high school. At the time I did not know what the cause was and I never did get it checked out. It then began to get worse over time (I am now 41). I am thinking that around 12 years ago it progressed from my eye, down to the entire side of my face. I had gotten botox treatments as well but never the perfect treatment.

    I found Chiropractic treatment helped relieve my spasms for a few years.

    I went to see the chiropractor because I was having trouble with my neck and had a pinched nerve that was causing some discomfort in my jaw. He did some adjustments on my neck and lower back. After about 6 or 7 sessions I noticed that my facial spasms were gone.

    It has been a few years now and my spasms have returned somewhat, but I am going back to my chiropractor now to try and fix the issue again. 

    I hope this can help!

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  • Posted

    Hi Kathy

    I'm, a 48 year old female, mine started last year exactly like yours and I too thought it was due to stress or straining my eyes on the computer or with reading, this year

    my mouth and nose mucsles started twitching too although I can for short intervals

    with no twitch, like you sometimes my eye almost closes and I hate making facial

    contact because of this.  

    I have not been sent for an MRI but have been questioned and on the basis of that

    have been told that I have a Hemifacial spasm.

    I had an appointment for botox but I am also scared to inject toxins into my body

    on this site lots of people have had the injections, but they have to be done every

    so often.   I want to try acupunture.

    I know how you feel and so do all the other sufferers, I was not expecting to see

    quite this many people.  

     

    Hope you can find something that you are willing to try.

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  • Posted

    Hi kathy

    i developed hemifacial spasm when I was around 48 (I'm now 55). And I was advised to go for Botox injections, which I did with the nhs (I'm from the UK). The I jectionof did work for a while, probably around two to three years, and I can't say I had any side effects from these injections, but I did eventually ask my doctor to give me the same I jectionof on the other side of my face as I was noticing a slight difference in one side to the other.

    i had always wanted the operation, and I was finally offered it just over two years ago.  I can honestly say it was the best thing I ever did.  Yes, it's not a nice operation. Yes, I was sick for a whole week after the op (good for losing weight though!) and yes, I unfortunately developed Bell's palsy ten days after the op, which lasted around 3-4 months, BUT, I would do it all over again to feel like I do now. Very occasionally I develop a slight twitch in my eye, which is normally due to stress or tiredness, and it's times like those that brings it all flooding back as to how I used to feel, and I never want to feel like that again.

    i u der stand every experience will be different for each individual, but u fortunately, this condition is chronic, and for me, personally, it was the best thing I ever did.  Good luck with whatever you decide

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  • Posted

    Hi Kathy,

    i live in Toronto too.  I just done MVD surgery at Winnipeg.  I feel very good.  Dr. A. Kaufmann who has the best experience in Canada.

     I was diagnosed Cranial Nerve Disorders - Hemifacial Spasm (HFS) since 1999.  Tried different medical treatments, like Chinese herbal medication, acupuncture, message, naturopath medicine, etc.   They can't help for long term, once the treatment stop it come back😈. Therefore I have decided to go for the MVD surgery around Dec 2013.   

    (I was referred by friend of mine to see Dr. Anthony Kaufmann (@ Health Science at Winnipeg).  He did the same surgery in 6 years ago very successful. )

    if if you need further information, feel free to ask.

    Shirley from Toronto

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  • Posted

    Ask you neurologist about high csf pressure and its relation to hfs. I got a spinal tap (lumbar puncture) to test my csf pressure, It was high and I was prescribed diamox (acetazolamide) and the full contractions of the left side of my face have stopped. It has only been 2 weeks So not sure if this is a cure but it has helped so far.
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