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Facial Spasams

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Guest
Guest

Hi i am 19 years of age coming 20 in may i have had facial spasms from May 2010 I got treated with Lyrica two times a day 75mg, Diazepam 5mg 3 times a day and Dosulepin 100mg for a sedative a night. This treatment worked for my spasms for 2 months and i came of the Diazapam completely at the start of those two months and the lyrica but continued to take my Dosulepin at night and i was spasm free now just in November there this all came back i suffered greatly from May but thought i was cured now i am back to square one and unfortunately had to leave my job. At first i thought it might have been the cold weather as i was diagnosed with trigeminal neuralgia but i believe it is not i think i cope well with the pain but its hard sometimes it gets that unbearable i faint and this is also a problem i was in hospital there recently and my spasm lasted for 14 hours i stayed for 3 -4 days or so and discharged me without any help. So now i am back on my Diazapam, Dosulepin, and lyrica and for the pain 50mg of tramadol. I really detest this medication it brings me down everyday but i try to be strong and keep positive my fiancé is also there for me and helps me walk through life day by day he is a great support. I came across this site and Looked at What is Hemofacial spasm and in fact all the symptoms are exactly the same as mine. I need help and a cure quickly i don't now whether or not this is what i have but please can someone help? i need it terribly this disease is ruining my life sad Many thanks Stephanie Gouldie 19

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    hi, sorry to hear about your experiance...mine is exactly the same, taken the meds even botox but no cure im afraid... the meds ae just to try and help you deal with the situation.. ask your doctor if they can arrange an mri scan at the hospital... i did and mine showed up a blood vessle trapping on a nerve which controls the left hand side of the body hence causing the reasons for the spasms...surgery is an option but i wouldnt recomend it

    good luck

  • Guest
    Guest

    Posted

    Hi Stephanie

    I have read your comments and would like to offer you some support and encouragement by telling you my experience of hemifacial spasm.

    I was diagnosed with HS approx 5 years ago after suffering debilitating spasms and twitches in the right side of my face including the mouth. I found this totally embarrasing and even stopped going out for a while.I always tended to cover the right side with my hand and I couldn't look anybody in the eye as I was so embarrassed!

    I went to see my GP who sent me to the hospital for tests and after being diagnosed with HS I was told there was no cure but botox injections were offered to ease the spasms. I was devastated to say the least but went ahead with the botox for approx 4 years but after having the injections every 12 weeks they were becoming less effective so I had them every 10 (at my request) Eventually it was wearing off after 5 weeks but wasn't allowed any more until the 10 weeks were up.

    Meanwhile, despite numerous searches on the internet for any help about this condition, I signed up for GOOGLE alerts re hemifacial spasm and after a while I was sent an email regarding an article in the daily mail newspaper about an actor who had the condition but had an operation in Bristol and was now cured!!!!!!!!!! This was music to my ears as I thought this operation was only available in America!!!

    To cut a long story short, I immediately went back to my GP, showed him this article and asked to be referred back to the neurosurgeon.

    I was then sent to see a different neurosurgeon in Leeds who was an absolute marvel!!!!!! He was most disgusted that I'd had Botox for 4 years as the operation has always been available here.............nobody had offered that information before. I could have kissed him!!!!!!!!!

    After an mri can which confirmed a blood vessel pressing on a nerve I was offered the op and despite the seriousness of the surgery I decided to go ahead as I couldn't live with the condition any longer. I had the op within 8 weeks of seeing him and on Dec 7th 2010 I underwent the op. I can honestly say it wasn't half as bad as I expected! I was in hospital for 5 days.I felt rough for the first 2 days but after that I'VE BEEN FINE AND AM NOW SPASM FREE!!!!!!!! :D

    I would urge you not to suffer any more and go and see a neurosurgeon as soon as possible.............I can highly recommend it, there is nothing to be afraid of.

    I hope this offers you some hope..............it just shows that it pays to research your condition as otherwise without the internet I would still be suffering.

    Good luck to you :D

  • Tristram
    Tristram

    Posted

    I would speak to a specialist before trying surgery, the operation is microvascular decompression where they put a pad between the nerve and the blood vessel pressing on it. It is not risk free, check it on the internet.

    I have been on Botox for 10 year, it isn't a cure, but carries less risk. I still have twitches, but they are not all the time and not anywhere near as bad as before.

    Check these two out before making your mind up.

    I did try the drugs approach, but it only helped for a short term.

    Also, if you haven’t had one, get an MRI. Hemifacial spasm is rare in one so young.

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