Primary Orthostatic Tremor

Have you asked your doctor’s advice for tapering? I tapered gradually to avoid side effects. Could you take 1/4 less of the pm dose for a week or two, then 1/4 less of the am dose for a week or two, continuing this until you are done? It will take a while, but give your body time to adjust. Yes, the pills are small, but I was able to cut them into fourths! I would be interested to know if this works for you. Thankfully, my tremors haven’t gotten any worse since getting off the primidone.

I take .25 three x/day. That is 1/2 tab which I have a difficult time cutting perfectly.😣
So I could do 1/4 tab at night and 1/2 midday and 1/2 in the morning for two weeks?
Then 1/4 tab in the morning, 1/2 afternoon and 1/4 at night for two weeks?
Then 1/4 all three times for two weeks?
Then?????
When I tried to take them 2x/day it was awful and I had interdose withdrawal.
I’m so shaky now
Thank you so much for your experience and helping me….

Mine has also recently gotten worse. I’m 74 and its been a real problem finding the right combination of medicines that will help. I’m hoping to get s second opinion at Mayo in FL. Any suggestions on drs?

Hi @ridleya. I wanted to welcome you to Mayo Clinic Connect. Sorry to hear that your tremors have gotten worse. You might like to read this article from one of Mayo's neurologists about orthostatic tremors. https://newsnetwork.mayoclinic.org/discussion/orthostatic-tremor-significantly-affects-quality-of-life/

What current medication are you taking?

Mine are getting extremely worse. I am 67 and have seen a number of neurologists and doctors for opinions on my condition. Seeing a new neurologist in August and hoping for some relief. My condition was first diagnosed in 2005 and in the past two years has grown steadily worse. I am to the point where I can barely walk across the room and my tremors sometimes start when I am sitting in a chair, pretty much turning into a panic attack causing my leg muscles to be extremely painful. The medications that have been prescribed to me so far are really not giving me much relief.

I also find it hard to stand on line but also to walk in open area eg. car parks, across roads or footy fields. It’s easier for me if someone walks on my right side. Seems to ground me. I wish someone had some answers

I also went of the pills gradually by my neurologist recommendation. No change either way. I’m doing balance and core strength exercises. Some days are worse than others. It’s worse if I’m tired so try to get enough rest

I am 74 and a neurologist suggested I have Orthostatic tremor. I went to see the neurologist because I had fallen maybe five times in the last year or two, for no apparent reason. The only symptom I have at this time is that I cannot stand on one leg without falling over. I can stand on one leg while supporting myself with my arms on a table. I cannot try to step into one shoe. I fell again yesterday because I picked up my right foot when trying to arrange the edge of a rug that had curled up. I immediately fell to the floor on my left side, no injury except a bruise on my hip. And embarrassment! But I can handle this as long as I remember what I can’t do 😐. I’ve read that this tremor can cause other symptoms but so far I feel very fortunate.

However, I have occasionally had what is called on this site “internal vibrations’. Is there a connection!?

Hi,
Is there anymore information about the thiamine(how much I should be taking for Orthostatic tremors) or injections? I have an appointment at the Mayo Clinic in October 2023. Thank God I finally got the appointment!