I have struggled with this since 2012. My neurologist had heard of some new research at a conference. They took a blood panel testing for VGKC antibodies. Mine were high. I was diagnosed with Faciobrachial dystonic epilepsy with VGKC syndrome. I empathize with your struggle. Besides medications- stretching helps a lot, heat/ice, and for me doing math problems 100-7. I hate math so it seems to distract from the movement. The difficulty I fear is the repercussions it is having on my neck. Nerve entrapment and such. I’m going through a very hard spike for the last month so I’m just tired. Having a zebra illness leaves me little choice in care. I know I have to accept my illness. Yet, it is episodic. I feel like myself for a week and then have these same neck and arm jerks as well as all the other neurological inside things. Does anyone feel alone? I have so much family, and support. I am so lucky. I’m 42 and I feel like my life is left in this cyclical storm of good and bad times. Ok - I guess I just needed to get that out somewhere, to someone who might understand. I’m at “0” - I don’t want to be defined by my illness- I’ve always fought to achieve. Epilepsy takes so much that others never see. I’m just tired of fighting sometimes.

Yes, I have a co-worker who struggles with this. She and I have a bond because of our neurological challenges (I struggle with hand tremors). She takes meds to assist with this. She still is able to work as a PT and drive. Things like handwriting are a challenge for her.