I had the classical case of HFS - it started as a twitch in my lower eyelid, and had progressed to the whole side of my face involved with sustained contractions.

I first had it looked at in 1993 by an opthamologist. Without learning the name, I learned its cause, and was given three choices: live with it, use tranquilizing drugs, or have the nerve severed. It wasn't all that bad, you know, just embarrassing and annoying, so I lived with it. It was still mostly just around my eye.

It slowly got worse. My cheek also started twitching. The worst thing about it, though, was still just the self-consciousness. As my kids passed through various activities, I was a Cub Scout Den leader, a soccer coach, a Little League coach, and a chaperone on many field trips. Kids at these ages tend to look right at you, and I could tell they noticed, but soon accepted it. People at work have never mentioned it. I got the idea that it feels worse than it looks.

In 1996, I started having the sustained twitching, and it really started affecting my sleep. I've never been a good sleeper to begin with - usually about 2 nights a week I don't sleep well - but that's another story. Now it was more like most nights. I went to get it checked out again. This time I was given four choices, they added Botox injections to the list, first ruling out other causes with an MRI. I think they also told me about MVD, but I didn't distinguish it as different from severing the nerve (surgery is surgery) until later. This time, I decided I couldn't live with it, so I started on Klonopin. Klonopin helped, but only briefly, even after increasing the dosage. On my own I tried stopping it for a while and starting it, to see what affect that would have. All the Klonopin ever did was take the edge off - it decreased the severity by about 10%, but not the frequency.

Around this time (December 1996), I suddenly developed a herniated lumbar disk, which took my mind completely off my HFS for about six months, while I suffered through that and the ensuing surgery and recovery. But that is also another story.

When I picked up the HFS thread again in May of 1997, my neurologist referred me to the one guy in the area who does Botox injections. I also found the Harvard Medical School information about HFS and the Guestbook, which has been most informative! I checked the Guestbook about every month. I felt very lucky not to be suffering from TN. Anyway, my Botox guy was Dr Timothy Fries, in Burlington, Vermont. I had gotten injected in July 97, with a touch-up in August, another injection in December 97, and a third in June 98.

The doctor tended to use a minimal dose, a philosophy with which I agreed, and I tended to wait until the HFS was almost back full strength before returning. I had asked Dr. Fries about Botox compared to MVD. He said neurosurgeons tend to prefer MVD, because it attacks the root cause, but most other neuro-people are starting to prefer Botox as less invasive. He downplayed the Botox side effects I had read about in the Guestbook.

I was satisfied with Botox. It didn't stop my spasms, but it decreased them to a tolerable level. But I worried about its long term ability to control the twitching and its long term side effects. Based on what I had read, I figured I had a couple of years to make a decision.

I decided to try the MVD, sooner rather than later, after learning more about MVD. I figured I would need one eventually, and couldn't see any reason for delay.

I had also tried hypnosis. In three attempts, the hypnotist was unable to hypnotize me. However, I had found the deep-relaxation had helped. Even before I went to the hypnotist, I used to find that relaxing would help. I could stop the spasms for minutes at a time. Now I could relax better than ever, and faster, too! Has anyone else noticed that the spasms are worse when lying, as opposed to sitting or standing? Or when lying and trying to quiet the spasms, they occur while breathing in, but stop while breathing out? I mentioned this to my doctor and he was surprised.

It was wonderful to meet others with HFS, to compare notes. I was especially interested in how HFS affected others emotionally. Compared to a lot of problems, HFS is relatively benign, but in many ways, it affected me more than people would think by observing me. The right side of my face felt about twice the size of the other, and the HFS occupied a considerable amount of my attention, occasionally to the point of ... um ... distraction.

So, this is my HFS story prior to my 04/09/99 MVD with Dr. Thomas Lovely in Albany NY.