Personal HFS History - Lou Campbell

I cannot tell you the first time I noticed a "twitch" but I remember the first time I mentioned it to my doctor. I consider myself to be in excellent health and, other than annual check-ups, I have no reason to go to the doctor. I was in for my annual exam in February 1997 when I asked my gynecologist about the "twitch" in my right eye. He told me that it wasn't anything he was familiar with and referred me to a neurologist in the same building. I was able to get an appointment with him just a few days later. Meanwhile, our insurance carrier was in the process of changing and it was going in to effect ASAP. I kept my appointment with the neurologist but was hesitant to confirm a diagnosis for fear it would follow me as a pre-existing condition with the new insurance carrier. This was the first time I heard the words "blepharospasm". The neurologist suggested I have a MRI but I held off waiting for the new insurance to go into effect.

Then, I had a scary episode occur (that has never happened again) and found myself in the ER. This was one month after the visit with the neurologist. I was home that day and suddenly became light-headed, nauseous and weak. So weak that I could not stand alone. I thought it might go away so I waited a while before calling my husband. He was home within minutes and insisted on taking me to the ER. I remember him carrying me to the car I was so weak. By the time I arrived at the hospital all my symptoms had only progressed and the more I moved the sicker I became. To make a long story short, they ordered every test imaginable and they all came back normal. The room was spinning and I when I spoke it was very slow. The symptoms were like what I have heard a migraine is, only I had no headache. Then as quickly as all the symptoms began, they disappeared just as quickly and I was able to walk out of the ER. The ER Doctor suggested that I follow up with a neurologist, which I did a few days later. We discussed my ER visit and he diagnosed it as Vertigo. I took this opportunity to mention my eye twitch. He looked at my eye and asked me a few questions. What came next I will remember for the rest of me life. He said, " it really doesn't appear to be that bad, I think you are being vain about it." I often wondered if it had been his face, or his wife's face, if he would have felt the same way. I left that day thinking that maybe I was making this a “big issue”. His final diagnosis for my eye was PTOSIS, (drooping eyelid). I did not have a droopy eye. I had a twitch.

It took me one whole year to mention it again to another doctor. I went for my annual eye exam and told the opthamologist I had been diagnosed with blepharospasm/ptosis. He referred me to Houston (and hour and a half away) for Botox injections. I wasn't sure when I went if I was even going to have the Botox but it looked and sounded fairly safe. I don't know how many injections I actually had that day but my husband observed and said it looked like about 5-7. I didn't know to ask how many. This was January 30, 1998 and all seemed well for a few days as the "twitches" had stopped temporarily. Then on about day 5, I awoke with my vision in that eye blurred and my eye seemed as if it was bouncing. As the day went on it would disappear but it would happen again every morning for the next 2 weeks. My family would tell me how much better my eye looked and I was beginning to gain my confidence back, until my husband and I attended a “Sweetheart Banquet” at our church for Valentines Day, two weeks after Botox. There was a photographer there taking professional photos of each couple. The picture arrived in the mail about a week later and that is when I really saw what the Botox had done. My eye was very droopy and I thought I had smiled for the picture but you sure could not tell it. I still have that picture buried deep in a drawer and no one has ever seen it. So that was the end of my Botox experience.

Things continued to progress with my eye and in September of that year I finally saw my primary doctor. I mentioned the previous diagnosis I had been given and he prescribed Neurontin. I continued on that for several months with no results and feeling "spaced out" most days. Then tried Tegretol and had the same feeling with no results. I was having my liver levels checked on a regular basis but after about nine months of the two drugs I returned to the doctor to tell him that I actually feel a pull in my cheek during a spasm. He changed my medication one more time to something I do not remember. After taking it for one day my heart felt like it was racing all the time so I called the doctor back and said, "no more, I was through with the drugs.

Sometime in 1999 I decided to try Chinese Herbs. I made an appointment and drove the forty-five minute drive. The doctor asked me a lot of questions and finally made a concoction of roots and leaves mixed for my precise problem. I was sent home with the tea along with an ointment and some herbal eye pads to place on my eye. The tea smelled simply awful while brewing and it tasted even worse. My husband and sons would literally leave the house, as the smell was so bad. I managed to drink the tea for about three days and then it started to work as a laxative and I could no longer tolerate it. I used the leaves and roots in a flowerbed the next spring. I didn't want to waste my money. In November of that same year I went for another eye exam only with a different doctor and he asked me "what is going on with your eye”? I finally, had someone notice. I filled him in on the past two years and he suggested I try some over the counter eye drops. I bought them but again no results.

In January 2000 I went back to my primary doctor and complained of tightness in my cheek and asked if I can have a MRI done. He orders it (I won't bore you with that story but the MRI was not a pleasant experience). The MRI results are normal. I continue to struggle with the "DEMON". My oldest son announced his engagement and plans for a December 2000 wedding. I was already thinking, " how will I get through the pictures”? Someone tells me about acupuncture and I begin to seek out a doctor who does this procedure. He says he hasn't ever done acupuncture for my problem but is willing to experiment with me. For three times a week I go for acupuncture and he also used an electric stimulation to my cheek muscle. Sixteen treatments and $1,600.00 later I saw some results, although the spasms weren't completely gone. The doctor was proud of my success story and with the wedding just weeks away I was able to get through the pictures, but still afraid to smile. The spasms returned "full force" just a few months later and for two years I did nothing.

I started acupuncture again (different doctor) in 2003 but did not go often enough to benefit from it. My family continues to be supportive and tells me that the spasms don't look that bad but I know they just love me and are trying to make me feel better. The real eye opener, no pun intended, was when the man that sprays our yard came to the door to talk to me about a potential problem with the yard. It was one of those days when the spasms were at their worst and did not want to settle down. The young man tried to talk to me while my face was "dancing" but I could tell he was very uncomfortable. He finally started looking down at his feet. I didn't know if I felt worse for him or for myself. That is what led me to the HFSA in November 2003. I had decided to educate myself about what was happening when I discovered this website. After reading so many personal histories and seeing photos of other HFS sufferers, I’m 99% sure I have Hemifacial Spasm, not blepharospasm, as I have only had it in one eye.

I am in the process now of trying to get the right diagnosis and I have an appointment with Doctor Jankovic, a neurologist in Houston on February 3, 2004. I knew as soon as I read that surgery was an option that I wanted to have the MVD. I didn't even think about it twice. My plan was to see Doctor Parrish, after my diagnosis with Doctor Jankovic, and try to schedule a summer surgery but I just found out that Doctor Parrish has been deployed for possibly 3-18 months. I have waited this long and I am willing to wait this out, Since I do not fly, Pittsburgh is not even an option for me.

This site has been an answered prayer for me and I have gained so much knowledge and I continue to learn more everyday. I haven’t been very active with the group as of now, as I’m afraid that if I do not get a HFS diagnosis I will look like a fraud. I consider myself one of the lucky ones, as I do not experience any of the other symptoms that go along with this.

Permission granted the HFSA to post Personal HFS History on website.
Lou Campbell, January 18, 2003

 

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