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I've had HFS for about 3 years now. Like most you, it started with mild twitching of my left eye then progressed to full contraction of left side of my face. I went the usual route of seeing neurologists having multiple MRI's and brain and muscle scans. Everything came back completely normal. My neurologist said that I can either receive Botox injections or take Anti-seizure meds that would that will make me groggy and slow. I decided that both options had side effects that I did not want to risk, either a droopy face or a droopy mind.
So a year passed since my last MRI and I go in for an eye exam for glasses. During the exam the optometrist told me that my optic nerve in the back of my eye looked swollen and that I should probably see a specialist because this could be a condition called papilledema. The Specialist confirmed that I do have this condition and that I should see a neuro-ophthalmologist. When I saw him he also agreed and said that I had very high eye pressure which may be the result of my high blood pressure. The N-O's recommendations were to lose weight and stop taking my birth control and see what happens with the papilledema. Mind you, 1 of the symptoms is blindness. I asked about my hfs and he said that they were not related.
Because I was extremely scared that I might lose my eyesight I began to Google and do as much research as I could on the link between papilledema and hemi facial spasm. What I found is that there were cases where people had papilledema caused by high cerebral spinal fluid and also there were cases where people who had high cerebral spinal fluid also had Hemi facial spasms. These people were given a diuretic called Diamox (acetazolamide) and the spasms ceased. Supposedly, the increase in fluid causes a shift in you skull and pressure is applied to the facial nerve.
I brought this information to my N-O and I almost had to bully him into prescribing a spinal tap to test my cerebral spinal fluid pressure. He was insistent on the fact that the HFS and CSF pressure were not related. The spinal tap revealed that my pressure was almost double what it was supposed to be so my doctor finally prescribed me the Diamox and I have not had a full spasm since I have been taking it. I have felt minor twitches here and there but not the full on eye closure and mouth being pulled to the side. I'm not sure if this is a cure because it has only been two weeks but I felt like I had to share this because someone else may be able to get some relief from this medication. Hope this helps someone!
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