Possible Cure!!! All sufferers please read!

Posted , 8 users are following.

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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18 Replies

  • Posted

    Ayanna you are clearly a very resourceful and intelligent lady.  I suffer HFS much like you and it started with the onset of high blood pressure (I was 54).  I would be grateful if you could let me know how things progress.  I am in London, where are you?  God what I would do to rid myself of this HFS nightmare. Thanks. Mark
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  • Posted

    excellent information. ..I am sure it will b of great benefit to many ....

    I am just trying to recover from my MVD surgery ....It was performed by an excellent neurosurgeon...Once recovered totally and fully satisfied with the operation ....will definitely feed in all the essential information about my experience and surgery details ....With a hope that others may also benefit ....

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  • Posted

    Hoping this solution is PERMANENT for you! Assuming the medication is officially prescribed for the papilledema, with reduced HFS as a fantastic bonus? I am definitely going to bring this information to my Dr and explore. 25 years of intermittent spasms is enough.
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    • Posted

      I'm hoping this is PERMANENT as well. The meds were actually prescribed for the high CSF pressure. What I read said that high CSF pressure causes the hfs, so hopefully the meds are reducing the CSF pressure which in turn is stopping the spasming.

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  • Posted

    Hi Ayanna

    I am so happy to hear that you didint need surgery!

    I believe you mentioned that your MRI tests came back normal?

    MRI didnt show any compression the the facial nerve??

     

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  • Posted

    Ayanna, I started Acetazolamide (Diamox) 500mg last night, after meal. 28 pills was prescribed. Will let the forum know result in 2 weeks. Day 1: nothing at all.
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    • Posted

      Ayanna, I stopped taking the medicine (acetolamide) because it does not work. I prefer doing what I am doing which others can read about. Alleviation of condition with body stretches and massages at C2,C3, C4 , less head-down, plus back stretches help.

      Cheers.

       

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    • Posted

      I'm sorry that it hasn't worked for you. I've tried other people's recommendations and it sucks when they don't work for you. I've continued to take it, but did have 1 full spasm while laughing and still the small flutters. I've continued to read different medical articles and I think a big part of the reason why my spasms went away is because I had the spinal tap the day before I began taking the meds. I think when they removed some fluid, my csf pressure was decreased. So what I'm saying is, I don't know if the meds or the spinal tap or a combination of both gave me the relief.

      Cheers

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    • Posted

      Thanks Ayanna. So the difference may be ....that I did'nt have the spinal tap. The neurologist scared me, and he only practise GP. Well, I'll wait for others here to follow your footsteps then.
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