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Need Some Advice?

Posted , 4 users are following.

Eponym01
Eponym01

I know this is long, but I really need some advice.

I’ll give a bit of background information. I’m a 23 year old female and at the age of 15 I started to develop muscle twitching all over my body and very intense twitching in both eyelids in both eyes. I was told that the eyelid twitch was due to eye strain and invested in glasses and the eye twitching stopped. However, the body twitching has never stopped fully. When I turned 18 I was diagnosed with blepharitis and again experienced intense twitching in both eyes (no one seemed to know the cause). It was so bad that I could not attend school for some period of time. Then, the next year I developed Bell’s Palsy on the left side of my face, which I took steroids for. I had hemi-facial twitching on the left side of my face and sometimes in my right eye as the nerve recovered. There is no trace of it anymore. By the time I hit 20, other than the occasional twitch everything was fine (I could get a twitch anywhere, from my eyelid to my nose and mouth). Additionally, I had an MRI scan at a neuro clinic and everything came back clear.

But, in December last year I developed a twitch under my right eye, I thought it was due to stress, but then I also developed a twitch in my right eyebrow and my upper lip. It was nothing too serious but it was annoying. Then I noticed that the twitch would move around. The corner of my mouth would twitch one day and then the centre the next, the same happened with my eyelids.  My hearing in my left ear seems off as if it’s blocked, my tongue sometimes twitches and my cheek has started to twitch as well (the cheek twitch can create a dull ache).  The twitching in my eyelid has completely stopped.  However, some days the twitching everywhere else more or less stops as well and other days I have to dunk my head in ice cold water to get it under control. I also still get twitching on the opposite side of my face and the rest of my body and have been diagnosed with iron deficient anaemia.

Any advice and replies will be greatly appreciated. 

0 likes, 4 replies

4 Replies

  • Roseann
    Roseann Eponym01

    Posted

    Hi, I'm so sorry to hear about your problems; it must be very upsetting and difficult to handle at such a young age.  I don't think this sounds like classic Hemifacial Spasm but it may be worth getting an opinion from one of the expert neurosurgeons who help people with HFS.  I would suggest that you join the Facebook Hemifacial Spasm International Support Group where there is fantastic information and also a great group of people, young and old, who have coped with HFS and other movement disorders.  If you are in the US then Dr Sekula in Pittsburgh seems to be the 'go to' man, whereas in the UK Nik Patel (Bristol) has a great reputation.  Wishing you all the very best and hope you can get some answers and some support too.
    • Eponym01
      Eponym01 Roseann

      Posted

      Thank you for the reply, I really appreciate it. I'll look into the Facebook group. However, I'm currently living outside both the US and the UK, so I may have to compromise on the neurosurgeon. Thanks again!
  • kyo78
    kyo78 Eponym01

    Posted

    Hi!

    I believe you have a blood vessel in the brain that is compressing on several nerves. The reason I say this is because I also have a blood vessel compressing on a nerve. Unlike you, only my facial nerve is affected. But the symptoms you described are exactly the same as I had.

    The bad news is that blood vessels only get larger and as a result, the compression will most likely intensify. The good news is that there is a procedure called microvascular decompression.

    I suffered from hemi-facial for close to 9 years. They symptoms started when I was around 27 and steadily got worse until the day I had surgery. Thank God the surgery was a success and the spasms/twitches are gone. I did have a bit of delayed facial palsy after tw surgery, which is pretty common. But besides that, all is good now.

    I feel like my life was given back to me. The years with the spasms/twitches were very dark and frustrating. I am glad I decided to have surgery and highly recommend that you explore that option for yourself. Since you're still young of age, you could recover quickly.

    Good luck and God bless!

  • joanne19156
    joanne19156 Eponym01

    Posted

    Hiya have you seen the doc about your anemia iron tablets would help you can get them over the counter at the chemist I have a twitch too just above my right lip also have hemofacial droop too that looks like stroke symptoms blurred vision too slurred speech the list is endless pins and needles and tacicardia all this since my traumatic lumbar puncture laSt july
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