Personal HFS History - Julie Gilbert
My name is Julie Gilbert and I live in Spokane, Washington (USA). I was first diagnosed with HFS about a year ago. My children kept asking me if I was mad or if I had a headache, and they wanted to know why I kept making that funny face. They took a picture and when I looked at it I knew what they were talking about. I thought it was from concentrating too hard on learning how to knit!
After seeing my doctor, I was set up for a MRI to see if I'd had a stroke. The MRI confirmed that I didn't have a stroke, but they found some tiny white spots which was thought possibly to be the onset of MS. I was referred to another doctor for his opinion and he said that MS patients have big white spots (like paint splashes) on their brain and that I did not have MS. He said the small white spots are sometimes seen when a person has a history of chronic headaches, which I have had most of my life. I recently had an advanced MRI to look for nerve compressions, but none were seen. My diagnosis is Hemifacial Spasm with unknown origin.
My facial spasms started on my right side. Often HFS starts with an eye twitch, but mine started with the right side of my mouth contracting and pulling upward towards my eye. As this has progressed I now have some eye and facial twitches. When I try to relax the muscles the twitching begins. My nose feels stretched across my face and it makes it hard to breath out of both nostrils. I have not yet had any kind of treatment, but I will update this if and when I do. I'm reading anything and everything I can about HFS so I can decide what is best for me.
After asking other HFSA members, via the e-mail group, if they have any of the same symptoms, I have found several people that do. My initial understanding of HFS was that it is not a painful condition. I find my face feeling very sore and tired, and I have headaches, neck and shoulder spasms and a general feeling of fatigue. I am also experiencing times of being overwhelmed and rather fragile emotionally. I'm not sure how much of this is related to HFS, but it does seem to be common with some of the other HFSA members.
Here are pictures showing the various intensity of spasms and also what I look like when I am spasm free. Sometimes I wake up with my face all scrunched up. Sometimes I am spasm free or it comes and goes throughout the day.
Permission granted the HFSA to post Personal HFS History on website.
Julie Gilbert, October 12, 2006
