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I am a 75; year old woman diagnosed with orthostatic tremor.
Brain & Nervous System | Last Active: Feb 6 6:38pm | Replies (12)Comment receiving replies
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.
Replies to "I am 78 and was diagnosed with orthostatic tremor 8 years ago by a Movement Disorder..."
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.
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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Thanks for your reply. I so understand about drs. knowing nothing about this. I think because it happens to older women! I going to be advising my first three doctors as to what this is so the next time a woman needs help, they’ll know where to start.
I don’t feel I’m getting any worse, but I guess I’ll know it when that happens. Good luck to you and keep walking!