Hello @janna2 and @champton,

First, I would like to thank @lisalucier for tagging me in this discussion. While I've not experienced this type of tremor, I find this an interesting disorder. After a bit of online research, I discovered that this is considered a rare diagnosis. Here is a link to an article from the National Organization for Rare Disorders (NORD).
https://rarediseases.org/rare-diseases/primary-orthostatic-tremor/
I also found an article from the Orphan Disease website, which I suggest that both of you read. Here is the link to that article: https://www.orpha.net/en/disease/detail/238606

In this article, under the heading, Diagnostic Methods, you will see a particular type of testing mentioned. Here is a quote from this section:

"The diagnostic procedure consists in confirmation of >12 Hz tremor in weight-bearing muscles during stance and absence after sitting (by electromyography) and not placing weight on the feet. There should be no extrapyramidal, cerebellar and/or other signs (except arm tremor), nor abnormal findings at adaptive optics (AO) imaging, electroneurography, or blood tests, which might point to OT-plus, secondary OT, or a comorbidity."

I'm wondering if both of you had this diagnostic test?

As these tremors are considered "rare" and "orphan disorders", it is completely understandable that you would find it difficult for a doctor to understand and treat them effectively.

Under the Management and Treatment heading of the article, several medications are mentioned that might help with the symptoms. I'm wondering if either of you has tried any of these meds?

I look forward to hearing from you again!