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I am a 75; year old woman diagnosed with orthostatic tremor.

Posted by 7881188 @7881188, Jul 26, 2024

My neurologist diagnosed me as having orthostatic tremor, I am a 75 year old woman. Three doctors had no idea what was wrong with me. Apparently this rarely hits anyone, but usually an older woman. I have been having issues I now realize go back 8 years. If I life only one foot off the ground, I will fall over. I have fallen many many times. I never could figure out why. My only injury was a broken shoulder! Otherwise bruises only.

Are there any other women out there like me?

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champton | @champton | Sep 2, 2024
In reply to @7881188 "I so understand everything you have stated. As long as I am very mindful of each..." + (show)
@7881188

I so understand everything you have stated. As long as I am very mindful of each step I take, I’m okay, haven’t fallen lately.

I also have what is supposedly unrelated vibrations in my core only when I am lying down. Either before I fall asleep or when I wake up. Once I’m up, they go away. No pain, just inside vibes.

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I noticed you said you have Vibrations. Are there internal where you swear your body is moving but it’s not ? Like it’s grinding to the trunk of your Body ? In 2 weeks I’ll have mine for 4 years and NO Doctor can tell me what it’s all about. I’m starting to think it’s some sort of Conspiracy Theory. From the 1st time these started and none of the Drs. Or diff Specialists could have any clue to as what it is. I’ve begged for anything to try. I’ve had a couple of Bi-Laterial nerve blocks and only 1 different d something stray. It’s lil embarrassing to explain. There has been 2 occasions where I had to have antibiotics at 1 time for Bronchitis and other was strong Steroids and Surgery related meds which those both times stopped my internal Vibrations for 5 weeks straight. 🤷‍♀️I’ve. No clue but this is maddening. It’s hard to function some days even to walk or talk. Feels like the ground is moving. It ranges from bottom of my feet to my bra line. It’s miserable living like this. It’s taken a toll on me and my family. I pray for anyone who has it. I just like for 1 Doctor to feel what I’m feeling for 1 min. Then he’d see what we’re all talking about. I’ve been through many tests and Scans. 1 Dr says it’s a Brain or Spinal issue but no pne can pinpoint it out. Keep goin after the Drs. Hopefully someone will have good news and please spread that if ya ever learn of it.
God Bless our Country 🇺🇸

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alexa2020 | @alexa2020 | Feb 6 6:38pm
In reply to @ocogram "I am 78 and was diagnosed with orthostatic tremor 8 years ago by a Movement Disorder..." + (show)
@ocogram

I am 78 and was diagnosed with orthostatic tremor 8 years ago by a Movement Disorder Neurologist. It is a rare neurological disorder ( in 8 years I have never met anyone else with OT!), characterized by high frequency tremors in the legs. Standing in one spot is so difficult and feels like I will lose my balance. Walking is better, although that has become more difficult over the years. Many doctors have never heard of it, and I had to "educate" my primary MD, my headache specialist, and my endocrinologist about OT after I was diagnosed. A good source of information is http://www.orthostatictremor.org. It is truly a difficult disorder to live with and misunderstood by many. I tried meds for 3 years, but they did not help and had too many side effects.

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I am a 70 female and have had OT for over 30 years. I basically diagnosed myself after much research, I brought my data to a neurologist, he reviewed and tested me. After a few MRI's to rule out other things, it was official - I am healthy otherwise and my tremors have not changed since the beginning. I do take medication, it helps a little but I mostly position my self so I am leaning, walking, or sitting......I hate standing in lines especially while traveling. I recently moved to the Jacksonville area and I am looking for a neurologist, I had the same one in another state for many years which I fly back to and see once a year until I can get one here. Facebook has a few OT groups and one has a roster of almost 1900 people in the world who have been diagnosed. all the best and keep walking!

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