I'm glad you're here! We can certainly comprehend what you are saying.
......It's times like these that I'd like to give these doctors a swift kick in the baZATTA
So many many times I see people left hanging. The follow thru care with these things is almost non-existant! Doctors tend to do the surgery and then turn you over to the reps and consider you 'done'.

You are going to have to start making some demands. Sometimes that's the only thing that will get you 'heard'. Your folks would be wonderful advocates and if need be, you could always take it to the next level.....the word 'Attorney' might get their attention.

My first suspicion would be the scar tissue, which could push the electrodes and possibly cause other issues. Scar tissue insists on having it's way, unfortunately.
Have they checked for lead migration? Even just a tiny amount of migration could possibly be the culprit.
Otherwise, I would consider the possibilty that when you move your head, the electrode/lead wires may be hitting a raw nerve.

In any case, you need to be heard. It is unethical for them 'not' to listen to you and try to find a way to make you more comfortable.

I'm sorry you are dealing with this.
Please stick around and let us know how this unfolds for you.
We are a caring bunch!

Rae