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PLEASE HELP! Is this hemifacial spasm?

Posted , 2 users are following.

amywey
amywey

Hi everyone, I've been suffering miserably with what I think is HFS for almost 3 years. I've been under the 'care' of a maxcillofacial specialist for 18 months with no diagnosis and not much help. I've tried self diagnosing as it feels like I'm banging my head against a brick wall with the lack of understanding from medical professionals so far. So my symptoms started with the lower half of my face which I understand is a-typical, and has progressed up my face and involves the masseter and tempoalis muscles mainly. I get pretty much constant twitching combined with hard cramping and my jaw is forced shut causing me to bite my tongue numerous times a day. I have trouble eating and speaking. Nobody seems to understand how severely debilitating this is and I can't seem to get a diagnosis. I avoid going out where I may have to speak to people as I look so stupid and it's embarrassing. I'm taking baclofen which is possibly calming it slightly but certainly not enough. I've also had Botox into the masseter which obviously calmed that muscle but with the temporalis spasming constantly it didn't really relieve my issue. The Botox has now worn off and I'm back to square one.

Any advice would be great. I'd love to hear how other suffers got their diagnosis and treatments you have had. I've heard about Nik Patel in Bristol and am wondering if this is where I should be heading and if anyone else has experience of seeing him.

Thank you for reading my waffle!

Amy

0 likes, 2 replies

2 Replies

  • diana79690
    diana79690 amywey

    Posted

    Dear Amy 

    im sorry to hear about your condition, and all that you are going through.

    i myself have had a diagnosis I have been under Addenbrooke’s hospital in Cambridge for the past couple of years without a proper diagnosis. I was referred to a professor Mark Edwards at st George’s hospital in London. Who is the top man in this country regarding Funtional neurological disorders. I too thought it was Hemifacial but since seeing Mr Edwards he has diagnosed me with Funtional neurological disorder. Basically what he has said is that the brain puts the muscles into spasm and forgets how to turn it of. He has tried Botox but like you I got some relief but it is still happening. Yes this becomes more debilitating socially emotionally and affects daily tasks. 

    I get very exhausted with this, the exhaustion comes over me like a wave. Lite wind touch all affect the spasms. Movement like bending turning my head. 

    I also get a lot of nerve pain in my arms, neck. I still work hard even though some days my spasms wipe me of my feet.

    i spoke to Mr Edwards regarding surgery for HFS, MVD. But his advice was to leave it alone as the surgery has no guarantee and is also has very high risks. So not recommended. 

    Im now trying acupuncture for relaxation (not to treat my condition) but as a therapeutic treatment. Also reducing my hours to have a little more time for myself.

    i have been a palliative Nurse for the past twenty two years, I’m now working for myself as a companion for older people.

    some days are better than others like you I don’t wish to socialise much as I wear dark glasses when my spasms are bad that is every day but some days are slightly easier.

    my spasms affect my speech tongue left eye closes and the left side of my face goes cold and numb. It isn’t a pretty sight my face looks deformed. It also affects my throat making me sound sexy ha ha! Like a horse.

    You can look Mr Edwards up on YouTube he does a lot of seminars on Dystonia.Also if you haven’t already contact Janet on the Dystonia helpline 020 7793 3650 she is very helpful she will also send you plenty of information. 

     Amy I wish you well and all the best for the future stay positive and be happy and on low days we have to be thankful for each day make it positive do something just for you no matter how little just do it for yourself. 

    Stay in touch lots love Diana 🤗

    • amywey
      amywey diana79690

      Posted

      Hi Diana,

      Thank you for taking the time to reply to me. I feel for you, it's just horrendous isn't it! It really is exhausting and you obviously do a fab job working with older people, it must be very difficult as I know I couldn't be in a job where I had to talk to people all day, I don't think I would have a tongue left as I would probably twitch so much and bite it off. Luckily I can pretty much avoid people in my job if I need to 😉

      Im glad you have your diagnosis, at least you have something to work with and aren't just clutching at straws looking for the cause of the problem. I hadn't heard of Mr Edwards but there is Mr Timothy Jones at St George's too who seems to be more to do with HFS. I've noticed lots of people talk about Nik Patel in Bristol and say how good he is. I just think I'm under the wrong department at the moment as I'm sure I need to see a neurologist and not maxcillofacial but I saw my GP the other day and asked to be referred to a neurologist and was told I need to finish with maxcillofacial first, grrr!

      Its helpful for me to know there are other people out there going through a similar thing to me, although I wish this horrible thing didn't happen to anyone.

      its been particularly bad today and I'm exhausted but still need to stay positive and keep on with the research to figure out how to treat this horrendous condition.

      Thank you Diana for your reassuring words and I hope Mr Edwards can do something to ease your discomfort.

      Amy 😄

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