I Live in the States. Have HF Spasms As Well

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I have had hemifacial for about 6 yrs. Starting in the eyelid and progressively getting worse to the point I finally went to the doctor (neurologist) 3 yrs ago.

I had been taking 900 mg of tegretol until a few weeks ago. The med was doing no good anymore. My doctor has increased to 1000. Its still not working. I am ready to give up on the meds and try botox but my doctor wants to try once more with adding ANOTHER med into the mix (neurontin).

I know that the botox is expensive and i will have to go back every 3-6 months but I am so over taking the med, which makes me sleepy and not getting results anymore. I hate going out being self conscience of the "twitching". I can hardly smile anymore without the right eye drooping. It's so frustrating and depressing.

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  • Posted

    Hi Debbie

    Like you mine started with a slight twitch in my eyelid and lasted over two years, finally got a doctor to agree there was a problem and it wasn't just because I was tired. I saw a neurologist who confirmed it was HFS after performing an MRI. Since having this done the spasms have increased and slowly started working there way down my face to my nose, cheek and lip. I went back to the consultant who arranged for me to have Botox injections and he agreed that the meds generally wouldn't help. I've had one lot of Botox which left me frozen, my lip drooped and my speech became slurry also my eye wouldn't close when I blinked. Thankfully it started to wear off after about 7 weeks, I'm due another batch next week. Since having the Botox I have decided that yes it helps but you do have to keep on top of it but doctors will only ever inject the side that's affected. I would need to continue for I don't know how long and was worries that I would end up with one side different to other, wasn't sure what would be worse. I am booked into see a neurosurgeon at the end of the month to discuss having the operation MVD as this is meant to have an 80% success rate. Fingers crossed that they agree the op may help. I've read several posts on here of people having Botox for years but still choosing the op at the end, I figured why waste time with the injections when the op seems the only thing to cure this awful condition.

    Like you I'm very self conscious now, I don't like meeting new people where as I used to be so outgoing. It's now taking over and affecting my life. I know the op comes with it's downsides but hopefully after speaking to the surgeon I can make a good decision to help me get my life back.

    Sorry for the long story lol I hope this helps if only a little...we are very lucky here in the UK that we don't pay for our treatment, please consider that paying for Botox only for it to be a short time cure if any and remember that it only seems to work if you keep up with the injections regularly xx

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    • Posted

      Thanks for sharing your story. Please keep me posted on your surgery consult. You know, another thing that REALLY bothers me that I have not seen anyone mention is ... the spasms during sex. I mean could there be anything less sexy than looking at your partner while your face is twitching??? I mean I have found myself hiding my face. Even though I have been with the same man for 18 yrs, it so embarrasing.
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    • Posted

      Oh yes, it's a real passion killer that I've never heard anyone else mention before.  A 'lights out' job!
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    • Posted

      Oh errr, your partner might like it!  No, just turn the lights out instead.....  It worked for me, but now they can be turned on again.
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  • Posted

    Hi Debbie.  Six years is a long time with HFS and I feel for you.  I had it for 9 years before having successful surgery in the UK.  Most specialists in HFS seem to say that medication does not work; that was certainly the view of my expert (who was the main man for HFS in the UK at the time).  I have taken Neurontin and Tegretol but neither did any good for my HFS (I took them for another painful condition).  Botox is a good sticking plaster if administered carefully and correctly with very gradual buildup to get the right dose.

    I am not sure if you are a member of the Hemifacial Spasm International Support Group on Facebook?  It has some excellent information in its FILES section, particularly about Botox.  There are loads of US members on that site too and they can advise you on the best experts in your state.

    If you are able to consider the option of surgery then it's well worth thinking about.  But, make sure you go to the best doctor available even if that means travelling across the US.  Dr Sekula in Pittsburgh seems to be the one who gets rave reviews and the very best results, possibly in the world.  I spent several years going to neurologists who really didn't have a clue about how HFS impacts your life, mood and relationships.  They treated me as if I had a cosmetic problem, which HFS certainly IS NOT.  

    Hope you can get to see a neurosurgeon with the right credentials and experience Debbie.  With you all the way.

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  • Posted

    Hi Debbie,

    Sorry to hear your medication has not been effective. My own experience is that I went straight on botox without any prior medication of the type that you describe ( of which I have never previously heard). I note that you're thinking about receiving botox injections.  You'll find in the comments relating to HFS which are posted on this site ( and I'm sure also on the relevant facebook groups) a variety of responses to the receipt of botox injections. They can certainly provide some relief from spasms, although I know that it has taken some folks a while to hit on the correct positions for injections, and it seems that it can also take a while to ascertain the "correct" dosage . I found that whilst botox reduced spasms and twitching, I did not want to have too much as it restricted facial mobility too much for my liking. I adopted a very minimal approach, and before my operation had really cut back altogether.

    Good luck as you consider your next steps. I can certainly understand the frustration and misery that you have been experiencing with this insidious difficulty, as will all who read your post.

    best wishes

    Ed

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  • Posted

    Hi Debbie,

    I have had HFS for the past year. But mine, Thank God, seems to be the same every day. I also was on Tegretol, but it had no effect on me. For example, yesterday I had practically a spasm free day, except for some spasms in the afternoon. I am scheduled for Botox next week, but I think I am going to keep it on hold for now and see what happens. I am quite scared of botox because am afraid it will make me look like half my face is paralysed. I will be giving it some more time and then see what to do. I am 69 years old and at my age I think I should leave well enough alone for the moment. But if I got this problem when younger, I would definitely have considered operation. My doctor keeps telling me to see my options. I wish you the best to whatever you decide on, and take care.

     

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  • Posted

    Hi Debbie,

    The progress of your condition sounds very similar to mine. It started about 6 years ago when I was about 57 in the eye area and has gradually spread down the left side of my face. I was (wrongly) diagnosed with blepharospasm. I have only ever had Botox treatment every three months and have never seen a consultant to discuss other options.  I diagnosed myself with hemi-facial spasm after doing research on the internet. The last time I went for Botox I saw a different doctor and asked her if I could have an MRI scan. She immediately filled in the necessary forms for me and an appointment came up just a couple of weeks later which amazed me. I have not yet had the result of this but when I do, I hope to be offered surgery to correct the 'loop' and I also hope to have the operation performed by a surgeon in Bristol recommended by various people on this site. It seems that the operation is now much more straightforward and has more successful outcomes than even just a few years ago. Good luck to you. All best, Sally

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