Advice please

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Hi everyone, I'm looking for some advice. I've been experiencing muscle spasms at night when trying to sleep for over a year now all through my body & have been seeing a Neurologist who diagnosed me with a sleep disorder & recommended that I take Diazepem. More recently my right hand & fingers developed a twitch/spasm that was diagnosed as a distal tremor. I then developed a muscle twitch in my right eyelid that lasted for a month & it's since settled for over a week now but within 4 days of that ceasing I started experiencing twitches in my left eye now & also what feels like tingling & 'electric shocks' on the right & left sides of my face, mostly around my eyes & also a crawling feeling under my skin. My Neurologist says these are all 'migraine mimics' but I'm concerned that these symptoms in my face might be the early beginnings of HFS. Any advice is very much welcome.

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  • Posted

    Hi Kim, sorry to hear about all of these symptoms - must be very upsetting for you.  I would say that these do not sound like typical symptoms of HFS (which generally only affects the face and possibly neck areas).  I've heard of something called Benign Fasciculation Syndrome which might have similar symptoms, but I reckon it's worth persevering with trying to get a better diagnosis if you possibly can.  HFS usually only affects one side of the face so there are a number of things which point to this not being HFS.  Good luck as you seek answers.  (I am not a doctor by the way, just someone with a bit of experience of HFS.)

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    • Posted

      Thanks Roseann, I took your advice & went to have an MRI with contrast to see if there was anything sinister & all results were clear - which is great. Am still not symptom free & my left eye twitch has returned but only when I place pressure on my left cheek. Which is odd & very annoying. The other symptoms all seem to be persisting as well. Thanks again.

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    • Posted

      Thanks for the update Kim - so pleased that nothing sinister has shown up on your MRI - that must be a relief.  If your symptoms persist you will gradually know whether it's HFS or not - it has quite a classic progression on one side of the face from eye to cheek to mouth in most cases.  You may find it helpful to join the Facebook Hemifacial Spasm International Support Group if you are not already a member - there are other members who have atypical symptoms such as your own and they may be of some help to you.  Take good care and hope to hear that things have improved for you as time goes on.  All best wishes.  Roseann

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    • Posted

      Hi. Have you any advise for treating HRS? I have suffered for 3 years. I have botox every 3months but it doesn't stop it completely! I'm at my wits end.

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    • Posted

      Hi June, I quite understand why you feel at your wits end, I've certainly been there myself with this tiring, embarrassing and emotionally blunting condition.  Sadly there is no medication (as far as I know) that helps everyone but a few people get a bit of relief from prescribed medication.  Someone I know is trying Keppra with possibly a little relief but not much.  Others use large doses of B12 and B6 and Magnesium - I believe these supplements/vitamins can help damaged nerves but I don't know doseages.  Some people have reported a bit of help from acupuncture, but it usually doesn't help.  One person even suggested hanging upside down like a bat........   a bit drastic!  The long and the short of it is that only Botox is a proven helper and only surgery will potentially cure the problem completely.  If you are able to consider surgery then you MUST choose your surgeon very wisely and with lots of advice and information - for this I would strongly advise joining the Facebook Hemifacial Spasm International Support Group - members from all around the world will be able to help you.  If you are in the UK then I can tell you that I had completely successful surgery at age 62 with Nik Patel in Bristol.  He seems to be the expert here, whilst Dr Kauffman is the expert in Canada and Dr Sekula in the US.  No surgeon has 100% success but the best ones achieve 80-90% cure.  The surgery does carry risks but most people come through it all quite well.  I had no complications thankfully, but some people do.

      Apologies that I haven't really offered you what you were looking for.  Please do come back if I can be of further help.

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    • Posted

      Thank you for taking the time to reply. Deep down I know what my options are. Just keep hoping for a miracle. O well I'll carry on avoiding photos and putting my hand on my face lol

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