I thought that it might be a good idea to submit my history to this website so that others can see what a rollercoaster ride it can be. This condition has truly changed my life in so many ways.
I first noticed a twitch in my right eye about 9 years ago. I remember being on the phone with my dad and telling him that my eye was flickering. He said it was probably fatigue or stress. Well it continued on but it would come and go so I put it off for a bit. A few months later I decided to seek the opinion of a neurologist since the twitches didn’t stop and I also had a funny feeling in my face. Almost like something was in my face--like and alien! The neurologist said that my face did look a bit droopy and he saw the flutter of the eye. He told me that I either had Multiple Sclerosis, a mini stroke or a virus, like Bells Palsy. He sent me for a MRI, which revealed nothing abnormal. The doctor gave me a prescription for Baclofen and sent me on my merry way. The Baclofen did help a bit but made me tired.
As time passed I began to notice that my face was beginning to twitch. At this point I was sure that I was dying from a brain tumor or something like it. I went back to the neurologist and told him that I was afraid that I was dying. He said to me "well, everyone has to die sometime"!!!! He gave me a prescription for Xanax. I did not know at the time that this Rx was addictive. I began to take them and didn’t realize that I could not stop cold turkey. Upon doing this, I became very agitated and sought the help of another doctor who just gave me another Rx for Xanax. In the mean time, the spasms carried on. This Xanax train ride put me other the edge and into the psychiatric ward of the hospital for one night. There I was put on Paxil, which did not help my hemifacial spasm, but did help me to care less about them. Thus began my journey with Antidepressant drugs, all from the anxiety and depression over this HFS condition. After my hospital discharge, I went to see another highly recommended neurologist. He told me that I didn’t have anything life threatening and that it was probably Hemifacial Spasm. He did another MRI just to be sure and ordered an EMG and EEG. Findings on the MRI and EEG were normal. The EMG showed some muscle weakness. This doctor gave me another medication to try called Artane, which is used for Parkinson's Disease. This drug made me very shaky and I couldn’t sleep, so I stopped it. I resigned myself to the fact that there was nothing I could do so I may as well accept it. A few years passed and the spasms became worse, involving the whole right side of my face, including my chin. There was also a pulling of the eye and mouth. I finally decided to look into Botox. I consulted with an eye surgeon who came highly recommended. We went ahead with the injections and I was amazed how much they helped. My eye was open wide once again. My face was calm, even though inside I could still feel the wanting of a twitch. This lasted only for about 2 months. I continued to have repeated injections over the course of the next two years, by a few different docs. My insurance kept changing, so did the docs. Each round of Botox resulted in different outcomes. Sometimes it didn’t work at all. Other times my eye became infected because it couldn’t close. One time my mouth was so droopy it looked like I had just come from the dentist. After that, I told myself that I could not keep living my life this way. From injection to injection, never know what the result would be. I became very depressed and was put on another antidepressant, Anafranil which helps Obsessive-Compulsive Disorder. I developed OCD as a result of HFS. I couldn’t think of anything else. I became very isolated and didn’t want to be seen in public. I felt like people were staring at me. I began to gain weight because I would eat all the time to calm my stress. It is all a vicious cycle. In so many ways, HFS has sent me on a downward spiral. But at the same time, it has made me a stronger person and really made me try and take a look at myself on the inside and forced me to try and accept that it is not all about what you look like on the outside. I am still working on self-acceptance. I am however, strongly considering the MVD surgery. I have been Botox® free since 2/14/03. The spasms are driving me crazy and they are worse than ever without the help of the Botox®. But I am trying to hang in there and get all the info that I can about the surgery. I have already contacted Dr. Jannetta's office and gotten the info packet in the mail, along with the prescriptions for the EMG and the auditory response test. I will probably get the ball rolling in the fall when the kids go back to school. I am a bit frightened of the surgery, but even more frightened of living the rest of my life with this conditions. It has affected the quality of my life in ways that only those who also suffer could ever understand. I want to be able to smile again like I used to and not have to bury my face in the sand. I just want to be myself again.