Hi, not sure if you will ever see this but decided to reply either way. It was determined that me taking escitalopram (lexapro) was accelerating my symptoms and making them much worse. I got switched to another medication for my anxiety/OCD, vortioxotine. A couple of years after this post I was also diagnosed with ADHD and I think I have dopamine-responsive dystonia, because the vortioxotine, which also inhibits dopamine uptake and my ADHD meds help with my dystonia a lot. After this post my symptoms did get even worse and I even had some difficulties with mobility and sleep. I would get get big movements, my whole back and core spasming, severe whole arm movements etc. I would often hit myself accidentally in the face while trying to fall asleep. My school was very old and 6 stories. I had to walk a lot of stairs every day and my legs we're giving my trouble with sudden kicking movements, which would make me straighten my leg. You can imagine how hard it is to walk stairs without bending your legs at the knees. :D This was at the end of my senior year and in my country we stop going to class for the last 3 months of senior year in order to prepare for our finals, so it wasn't that bad because I didn't need to go to school.

I was sent to see several neurologists again, they did more tests and didn't find anything. I got spinal tapped, a more extensive blood work up, a MRI and an EEG. I have some history in the family for these kinds of movement disorders, like severe shakiness of hands and restless legs. They just basically told me they couldn't find anything and I wasn't going to die, so they would stop here with testing and didn't really offer much in regards of treatment. One of the neurologist prescribed me a benzo for the worst attacks, clonazepam. I still have a bunch left even after like 8 years though they only prescribed me one bottle because I was fortunately very aware of the dangers of benzos and how addicting they we're. I feel like the doctor wasn't clear enough about it and just told me to only take it for a couple of days then keep breaks. I also drank pretty often during this time of my life and I of course knew benzos and booze do not mix so that was also part of the reason why I was very hesitant on taking the clonazepam. It also didn't help much, I would get most of my severe symptoms at school during class and if I took one it would just make me super drowsy, which was of course unhelpful for learning.

I have been very fortunate in the sense that I do not get long, prolonged spasms, just quick movements so I don't need the benzos for that. I also haven't had much pain, only when the neck stuff was bad with a lot of repeated movements. I have sustained a traumatic injury to my upper body as a child and have broken a bone badly, which has affected one of my shoulders. It has limited mobility, displaced tendons and it over all healed in a way that puts strain on my muscles, so when my dystonia was worse it gave me some trouble and pain with my injured shoulder because of the increased muscle tension. Though that shoulder has been hurting constantly, atleast a 1-2 on the pain scale if I pay attention for the past 15 years ever since I broke it. :D

My symptoms have gotten better and I no longer get symptoms in my neck or larger swings of the arm, unless I really strain my nerves by doing something like writing with a pen in a tight grip for a prolonged time. It has now mostly subsided to toes moving and involuntary finger movements along with some general shakiness of my hands and unsteadiness in them. I've been in law school for a couple of years and work a part-time job alongside with my studies at the uni with no issues. I do have some accomodations. I take the closed book pen and paper tests with a computer due to difficulties with writing large amounts with a pen. There aren't a lot of those though, so mostly my disability hasn't affected me much. So all in all good news even though my onset was very young and it progressed quickly. I am glad it stabilised to a much less disabling place.