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So many symptoms no answers or relief

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Lyons6
Lyons6

Hi everyone I just joined after reading a few posts about others symptoms and thought maybe I could get some relief just by talking to others about this. I am 33 year old male and 8 months ago I started getting an eye twitch I chalked it up to being maybe a magnesium deficiency and took some supplements it went away and came back a month later and has been active since. What started as just the lower eyelid twitching almost non-stop is now accompanied with my left cheek feeling numb a sound and feeling like I am going through a tunnel in my ear. All of this is so intense at times I can hardly think straight. It doesn't stop there I also have been getting dizzy spells and weekness, my vision in my left eye is getting blurry and kinda jumps around with the twitch, it feels like a strobe light in my face and brain, I feel like I'm losing it this is all a very dooming feeling. I have been to the ER twice in the last month because of the severity of this and have seen a neurologist and had an MRI and blood work and everything has come back negative and actually very healthy. The neurologist says it could be hemifacial spasm and there is no real treatment but Botox could help with the twitch. I am at a loss and do not understand what is going on with me but it is very real and I feel like I am not being understood. This is only a summary of the effects from this and very intense at times if anyone has some advice or experience please chime in....thank you

0 likes, 3 replies

3 Replies

  • kim53004
    kim53004 Lyons6

    Posted

    You should join the hemifacial spasm facebook group. The group has lots of people who understand and lots of empathy. This condition sucks and I'm always looking for alternatives to treat it. I try to look for the blessings in everything because there could be so many worse things, but it is hard sometimes (I've had this for 4 years). That group is full of supportive people though. I wish you the best!!

  • Bigbook62
    Bigbook62 Lyons6

    Posted

    Microvascular decompression surgery is only cure. BUT you need so see COMPETENT neurosurgeon I went to Dr Ray Sekula at UPMC in Pittsburgh. You can take a look at his explanation if you google his name. He uses the most advanced procedure and he is a super down to earth nice person
  • dondon01
    dondon01 Lyons6

    Posted

    Really sorry to hear your suffering with this, my symptoms sound identical to yours - starting lower lid, gradually worse, affecting. Whole right side of Face and noisy in ear, very disturbing when trying to sleep and frustrating and embarrasing at meetings and face to Face contact as you can't control it. I've also started contorting the rest of my Face to compensate which causes tension headaches. Botox when delivered in 12-14 injections in the right place seemed to have the best results for me but lasts only 8 weeks, I wouldn't really like the option of operation but my doctor won't offer it, Bristol appears to be the best location for this option. I hope you find some help and support xx

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