Anyone here experiencing mostly orthostatic tremors?

Hi @janna2 - Tagging a few Mayo Clinic Connect members from different support groups to see if they might identify with you and your combination of Parkinson's disease and orthostatic tremor, or if they may have heard about Parkinson's with mostly this type of tremor @triciab @patriciajean @larryh123 @champton. I'd also like to invite @hopeful33250 into this conversation to share anything she may be aware of connecting PD with this type of tremor.

I know I have orthostatic issues low BP where I get dizzy. I still have my Internal Vibrations is what I call them. It’s been since Sept of 2020 that I’ve had mine. My body is shaking all inside me like an earthquake or a hack hammer actually. All the Drs I’ve seen has said it’s a Brain Spinal issue. Not ran into anyone who will tell me the cure. They just say try the Mayo Clinic. But what I’m finding, is that we all complain about it but what’s the solution ? I know there’s gotta be at least 1 of the dozen Drs I’ve seen that knows of this ugh 😩why won’t anyone help me?
I’ve been poked n Scanned n still No one can tell me where these r coming from. It started n my left foot mid sept. 2020 by Oct 1st it was to my knee. By Nov. bamm it shot up both feet n legs to my bra area n that short of time. Only 3 times did I get any relief. Once I had to take antibiotics for bronchitis n had 2 sets of those which made my vibrations stop for 3 weeks. Then 2 other times was an abdominal n knee surgery which lasted 5 weeks to the day 🤷‍♀️only thing I can think of is something n the meds which didn’t work for another yr when I got bronchitis. So why that time. N as that last day I can feel the rumbling in my feet then I know, yep they’re back ugh 😩 this is so aggravating. If we had a swear jar I’d be so rich every time I say “Dang these Vibrations”. I hope some of Y’all having these issues to please share your experience n results. I know there’s gotta be more of me out there. Hugs 🥰 n Prayers 🇺🇸

@lisalucier Thank you❤️

@champton thank you for sharing your experience with it! The response you had to antibiotics quelling the tremors is so interesting! I haven’t had any antibiotics in years, but I’m definitely going to watch for that next time. My BP standing vs laying had only a minor shift, - the doc was expecting more. I count myself lucky in that the carbidopa levadopa IS helping mine. Web search seems to indicate it doesn’t help many with orthostatic. I try to take my first dose about an hour before I get up in the morning. If I forget to take it early, once I am up and about it is not very long before my body lets me know. This is all so puzzling. Guess we are zebras🤣😂. I hope someone can help you get some relief.
Hugs to you!

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!

@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 !

@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.