Orthostatic Tremor

Posted by triciab @triciab, Feb 13, 2023

I was diagnosed with Orthostatic Tremor in 2016. Symptoms began appearing around 2000 but I thought my back problems made me feel shaky and I needed to sit down. Early symptoms were the inability to stand still, the need to walk quickly, avoiding standing in lines and the sense that I would fall if I I could not find a chair. I have been on a walker since 2017 but I still need to find a chair. Some locking of legs and the feeling that my legs are heavy. I have no tremors while sitting or lying down.

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musitani | @musitani | 3 days ago

Hi everyone,

I am 65. I’m grateful to be here and connect with others who understand this rare condition. I was recently diagnosed with Orthostatic Tremor (OT) by a neurologist specializing in movement disorders. It’s been a long journey trying to make sense of symptoms like leg tremor and unsteadiness when standing still — symptoms that improve when I move, sit, or lie down.

I also experience significant fatigue when standing, as well as chronic back and hip pain related to a double lumbar fusion I had in the past. I’m working with both a neurologist and a sleep specialist to manage overlapping issues, including REM behavior disorder (RBD), and it’s likely that we’ll be adding clonazepam to my treatment plan soon. I’ve also recently started taking propranolol.

I’m still learning about OT and how it relates to the rest of what I’m experiencing. I look forward to hearing from others and learning how you navigate life with this condition.

Thank you for having me!

Warmly,

Cesar

alexa2020 | @alexa2020 | 2 days ago

welcome to our group! I guess in a way, it's group you really don't want to be part off, but on the other hand we could all have something much worse than OT. Where are you located? I am still on the search for a Movement Disorder Neurologist in Florida. I travel to New Mexico once a year to see my Neurologist who first diagnosed me about 10 years ago, although I knew I had it 25 years ago.
Dianne

ocogram | @ocogram | 1 day ago

I was diagnosed with OT by a movement disorder neurologist in Milwaukee, WI 8 years ago. It is not an easy disease to live with and one others do not understand because we can walk, but not stand very long. But we have to adapt to our situation. Shopping has become more difficult; if it is a store without carts, I use my cane for stability. Whereas I formerly would enjoy browsing, I now make it as short as possible. I also use online shopping frequently. I miss the spontaneity I once had, such as visiting with a neighbor while out walking, visiting with people in a lobby after events, etc. If there’s no chair, it has to be quick. I know no one else with OT, so this forum is helpful!