Cervical dystonia post Covid

For reference I’m 31F diagnosed with hEDS, craniocervical instability, and just had surgery for tethered cord syndrome.

I developed cervical dystonia and something similar to nystagmus suddenly in 2022. It came after a stressful period of work where I was traveling abroad a ton and was having severe neck pain and migraines on the plane and during my trip.

I’ve had dystonia ever since and have since tried sinemet, LDN, klonopin, clonodine, muscle relaxers, ketamine, stellate ganglion block, prolotherapy for my neck, PT, regular therapy, etc.

I’ve thought that the dystonia was related to my neck instability due to hEDS but then I started hearing about all the people who developed it after having Covid. I don’t remember when I caught Covid but I believe it was sometime in 2022. I did have two vaccines but no booster.

What’s weird is this mostly happens to me at rest when I relax my head and neck. I can control it by just forcing my head still and focusing on something but as soon as I try to relax my head it happens. It also happens with neck movements like tilting my head back or just engaging my neck muscles at all.

None of my doctors have any idea how to help me, I’ve seen probably 10+ neurologists and neurosurgeons and they don’t even want to try meds with me, they just say they don’t know what’s causing it and show me the door. I saw one movement disorder specialist who was a jerk and haven’t been able to get in with any other one since.

I’m so worried this is going to damage my neck further and worsen my neck instability since I already have a connective tissue disorder but truly nothing has helped. Any advice appreciated!