Botox® Experiences - Anne El Shazli

My HFS started about 8-10 years ago when I was in my mid 40's. It started with fluttering in my left top eyelid, and then progressed to the lower lid as well. Back then I did not have the mouth twitch but I felt a stiffness or "pulling down" around my mouth, and every time I pursed my lips or puffed my left cheek out, my eye would slam shut.

My insurance was with the George Washington University Health Care HMO, and they sent me to one of their neurologists, Dr. Richardson. I don't remember that they put a name to my condition, but Dr. Richardson gave me three treatment choices:

  • Drug therapy, where I would have to be carefully monitored because the drugs could cause liver damage.
  • Brain surgery: not an option for me
  • Botox®
I decided to try Botox®. Dr. Richardson injected it around my eye, I cannot remember how many shots, but it was at least three. I was alright for about a week and then the eyelid started to close. Within two weeks it was completely shut and it took about 4 months for it to open up again. Although the twitching stopped, I could still feel it trying to twitch, even when the eye was paralyzed shut. It was a horrible experience, but it did the trick. For almost eight years, the spasms all but disappeared.

In the past year, the spasms came back with a vengeance and now my mouth was in spasm too. It seemed to be aggravated by some dental work I had done. The spasms got so bad I had trouble sleeping because they kept going even when I was asleep.

My primary care physician, Dr. Barbra Burkett, had me go through the usual MRI, etc. and referred me to a neurologist at Johns Hopkins. Unfortunately, the earliest appointment Johns Hopkins could get me was two months later. In the meantime, we started with Neurontin, first at 900 mg a day, then up to 1,800 mg a day and finally 2,700 mg a day. While the Neurontin seemed to calm them down at first, the spasms continued in frequency and force. I was zonked out and still in spasm more or less constantly. I saw Dr. Batipps, a neurologist who is the husband of a friend, and Dr. Kobrine, a neurosurgeon. Both of them told me about the three options and both thought that Botox® would be the preferred treatment in my case. I was desperate. Dr. Kobrine referred me to Dr. Nikhar, a neurologist with extensive experience with Botox® injections. I weaned myself off of Neurontin and finally in early August 2001, I had the injections. Dr. Nikhar used a smaller than usual amount of Botox® around my eye.

For the first week, I was very happy. The treatment seemed was taking effect without the paralyzed eyelid. But the second week, my eye started to droop, got halfway down, and stayed that way for three weeks. It has been over two months and the eye spasms have almost completely stopped, but I still have spasms around my mouth although less frequently and with less force. I have a crooked smile, too, but I can live with that. I see Dr. Nikhar again in November 2001.

In 2003, Dr. Nikhar moved his practice to Olney, MD and I discontinued Botox treatments. The spasms soon returned, and I tried getting injections from a neurologist at Washington Hospital center whose efforts gave me a black eye and no relief.

I decided to tough it out and suffered varying degrees of spasms and tonus until I went to a nutritionist in 2004 for another condition. I’ve been following a healthy, almost vegetarian, no processed food/transfat/low omega 6 diet since, and take supplements that include magnesium. The spasms have all but disappeared. Most of the time I’m spasm free. Sometimes I have flutters, but they are minimal compared to the tonus and spasms that used to plague me.

Permission granted the HFSA to post Botox® Experience on website.
Anne El Shazli, October 15, 2001 (Updated 03/28/08)

 

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