Hemifacial Spasms-have you heard of this?

I have had a hemifacial spasm on the left side of my face for close to 3 years now.  It started out as an eye twitch and eventually became evident on the entire side of my face.  Initially I  didn’t know what it was.  I consulted a neurologist and had all necessary testing which revealed that there was no critical physical problem. Most often this condition is caused by a blood vessel resting on a facial nerve. The doctor prescribed some medication, an old Parkinson’s drug, which seemed to help somewhat initially.  It made my mouth so dry that I was making very weird faces attempting to get some saliva going in my mouth.  When there is a spasm (they are sporadic and random), my vision can be affected.  Sometimes it is difficult to see while it is happening.  There is no pain, but it can be difficult to control my face and the smile that I used to have on my face most of the time has diminished into looking like I am angry oftentimes; I am using my energy trying to control the muscles in my face.  I can look pretty ghoulish, too. 

Drawing: patient with hemifacial spasm

I have tried to be a good sport.  I know that there are far worse conditions that people deal with every day.  I am truly tired, exhausted from trying to control my face.  It is difficult to have my vision disrupted.  The stress can be rough. I feel like I am not me. My left eye feels like it is dilated and tears.

My ophthalmologist referred  me to a BOTOX specialist, in this case ….an Ophthalmologist, a top doc in Philadelphia..    BOTOX does help somewhat, but it is an art, not an exact science.  I have been treated with BOTOX 4 times so far.  I am told that it usually lasts 3 to 6 months. For me it seems to work for about 6 or 7 weeks.  I don’t really want to keep receiving BOTOX injections. I would prefer to find another method of treatment.  I have tried acupuncture which I believe does help. I have tried B100 vitamins, geranium oil topically on my face. I haven’t tried meditation yet.  So I am tired, sick of the subject, tired of having photos taken where I look like I have had a stroke (this is not a photo of me).  I just want to be done with this  situation and have my face back!  I understand that surgery is an option also…vascular decompression.

I understand that this condition is extremely rare in males…

This is MeddlingMom….have a good week.

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4 Responses to “Hemifacial Spasms-have you heard of this?”

  1. andy Says:

    that really does suck, ti, and you HAVE been a good sport about it all. you NEVER complain, so i think you are entitled to this blog, for sure. i would be freaking out. yes, i know it’s not the end of the world, but we all like to look in the mirror and be happy with what we see. so sorry you have to deal with this, sis. is the surgery covered by insurance? maybe you want to consider from the physical discomfort aspect alone.
    hang in there! xoxo

  2. meddlingmom Says:

    thanks, An…I don’t think I want neurosurgery…they would be moving a blood vessel off of a nerve…don’t think I am up for that yet.

  3. Cindy Says:

    My facial spasms began ten months ago on the left lower eyelid. After three months I went to my GP and the PA examined me and said I needed more sleep. The spasms now involve the left side of my face including my mouth. At times it sounds like the ocean in my left ear or I hear a faint tapping noise. I am not in pain but I feel pressure on the left side of my face and head.

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