Hello--

I was diagnosed with ET late in 2011 when I was 25. Looking back, I'd had some trouble off and on, but that's not the real point.

I was initially on a small dose of propanolol (sp?) which worked fine. About a year later (late 2012) it stopped being effective for me so my doctor switched to a small dose of primidone. I also have seen a neurologist (whom I despised) and had an MRI which came back fairly normal.

I have now had to up my primidone to 50 mg a day (still a low dose), but that's only part of the problem.
Since upping my dose my tremor hand (my left) has been tingling something fierce, as well as aching. I have lost most of the feeling in my left thumb.
My left foot "buzzes" (I don't know how else to describe it) and all in all, the tremor is still awful.

I also get awful awful headaches and have been prescribed migraine meds. The meds help (even if I'm not convinced I have migraines).

TL;DR - is it normal to have buzzing and soreness and pain along with a tremor somewhat overnight? It's driving me nuts.

hi wingsscrub -
I was diagnosed right around that age as well. I have ET with shaking in my hands, head, and trunk (that's such a funny word .
I experience buzzing quite a bit, mostly at night but sometimes during the day as well. My entire body feels like someone is holding an electric current to it. I've also had many different experiences of numbing and tingling.

Since this post I've gone off the primidone (per the doc) and have an appointment with a new neuro on Thursday. Also had an MRI of my neck, discovered I have a straight c-spine (no curve at all). Doc suspects some sort of nerve damage re: hand and buzzing and pain?

I've also become infinitely more itchy than I was before. Last night I scratched myself so badly I bled in a number of places. It's awful, I seem to be living on benadryl.

Thanks for the feedback-I don't know anyone else with ET so I can't say if the buzzing is normal (among other things).

Stay well!