First of all, I'm one of the fortunate who's father diagnosed me from a newspaper article. Telling the sub specialist to go to. And, I responded to Botox, then better to Gabapentin (Neurontin) and one additional Rx. Been the 2 for 24 yrs ever since
It's a feeling as if the muscles in your neck are having a war.
I at first felt what I later read is called 'invisible tremor'.
Would feel as if my head was ever so finely vibrating .
But would ask someone to watch closely, and they'd assure me it wasn't!
The twisting to one side was helped only by, if at all, putting my chin in my hsnd while sitting. Holding my hand to my face. Giving in and letting it twist. Etc.
The muscles would twist up from fighting to hold my head straight. To the point I'd feel like beads under my neck skin.
The only thing that helped the pain, before the correct doctor, was Tylenol 4, one a day. Tylenol 3, 2 per day. And a Valium, low dose, one a day. This was in my mid 20s...after suffering through work and doctor after doctor, for about 10 months.
Took the medication for about 1 month...it went away for 13 years. Came back, though.
Then, only microwaved warmed towels helped.