Intermittent Palatal Myoclonus?

Discussion in 'Support' started by Staceyuuks, Jan 3, 2016.

    1. Staceyuuks

      Staceyuuks Member

      Hi, folks,

      I am new on here! So, hello to everyone!

      I have Undifferentiated Connective Tissue Disease (differential diagnosis Lupus or Limited Systemic Sclerosis). I feel like my the back of my head/throat is vibrating (kind of shaking) really fast and sometimes I feel a morse code type noise in my ears. So my rheumatologist sent me for MRI brain scan and Echocardiogram. These were normal. So, as a last resort, I was sent to get eyes checked (sometimes they 'vibrate' as well). Health of eyes are fine, and also to ENT. The ENT said that my ears look fine and my hearing was good. He said that it sounds like I have this palatal myoclonus, although as my palate was not twitching at this moment, he couldn't confirm. I take pregabalin already for pain relief and he said that this is one of the drugs he would suggest to take to help minimise the twitching. I kind of think he is right, but it usually only happens when I am in bed trying to sleep. But I have seen videos online and I think, "surely that's not what's going on?" But I really feel that something is going on in there, in my throat which occasionally causes my head to feel like it's shaking. I have described it to my rheum and neuro as feeling like I am having a seizure but can wake myself up out of it (as usually this is when I am sleeping or trying to sleep so dozy). I am going back to see my neurologist in spring time (he thought I had occipital neuraligia).

      I was wondering if anyone knows of anything I should be looking for from him in terms of tests to help?

      Also, anyone out there who suffers palatal myoclonus also feel when the twitch starts to go really fast, like their head is vibrating?

      I also feel sometimes it's a wee bit tricky to swallow (food ok, but my own saliva is tricky).

      Thank you for any advice.
       
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