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Anyone here experiencing mostly orthostatic tremors?
Parkinson's Disease | Last Active: 4 days ago | Replies (7)Comment receiving replies
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!
Replies to "Hello @janna2 and @champton, First, I would like to thank @lisalucier for tagging me in this..."
@hopeful33250 oops- just realized I did not completely answer one of your questions. No I have not as yet tried any of the other medications mentioned in that article. I was diagnosed August of 2025, after a whole bunch of odd symptoms slowly developed that actually align pretty well with PD. My odd tremors started about 2 years ago. I am told I am in the “early” phase, and am kind of a nerd so trying to be proactive about it. So far the C/L is working pretty well for me, and I am grateful for that.
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@hopeful33250 thank you for the links! A friend had sent me the NORD article, but I was not aware of the Orphan Disease article.
I did have an EMG at rest, but my neurologist has not suggested any further testing. I may bring the test you pointed out up with my neurologist at our next assessment. Only suggestions I have received so far have been to keep doing what I am already doing, and let them know if any new symptoms develop or change. The only meds I am on are levothyroxine for my thyroid, and carbidopa levadopa for the PD. I do water aerobics 3 times a week, and try to get in a good hike on most of the other days, but with winter coming I may need to find other indoor movement options. I am signed up for a balance class. Interesting that I finally have calf muscles of steel for the first time in my life😆. My diet is good, my bloodwork is excellent.
My father had essential tremors, and later Alzheimer’s, his brother had Parkinsons, so I’m familiar with how this will probably go. I’ll keep working out until I can’t anymore.
😂 Since I seem to be that zebra weirdo, I’m going to look into some PD studies to see if they can learn anything from my case that might be of use to someone else down the line.
The brain is fascinating !