orthostatic tremors

Posted by Grammyjo @grammyjo, Mar 15, 2012

Is there anyone out there who has this condition and who would join me in discussing what’s going on in your treatment? I’ve had them for about 18 years now and have recently tried dropping my gabapentin and going to another medication called Topiramate (.50mg) 2x a day, but I find they don’t last the whole day so about 1/2 way through the day I feel l can hardly wait to get my next dose. I still take Clonazepam (.5mg) 3x a day. I so wish they’d come up with something new for us to try. This Topiramate (or Topomax) has my mouth and eyeas all dried out, my stomach upset and I think is causing me to be constipated. I do not like life right now. I’m always tired and any amount of stress or effort only makes things worse. Anybody out there know what I’m talking about? I’m too young (at heart, at least) to be feeling this way. I want to be out kicking my heels up, and I still try to do it, but boy do I pay for it. This week while taking a walk, holding my 3 week old granddaughter I was in fear the whole time of tripping and falling–thankfully I didn’t, but that’s no way to live. Mayo Clinic, are you doing any studies on orthostatic tremors?

Interested in more discussions like this? Go to the Brain & Nervous System group.

RE: constipation…try flaxseed meal added to your cereal or other foods and it works……..along with some prunes and lots of fiber foods.

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I just visited my neurologist yesterday, and although he agrees I have OT (which I researched and found myself) he prescribed Physical Therapy AGAIN. I've been to at least 4 places for PT (at my own suggestion) and gave up after weeks of therapy. He does not seem to understand that when I visit him on a good day, that doesn't mean I don't have bad days. Some days I feel like my feet are glued to the floor. I have other things to deal with like arthritis, especially in my feet, It's discouraging and I feel sorry for you, but use walkers, and electric chairs, and do the best you can. Good luck. Mayo is doing deep brain stimulation now. That might be a possibility for you. And there's a mobility disorder in Gainesville, FL, that also does brain surgery.

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@franella2

I just visited my neurologist yesterday, and although he agrees I have OT (which I researched and found myself) he prescribed Physical Therapy AGAIN. I've been to at least 4 places for PT (at my own suggestion) and gave up after weeks of therapy. He does not seem to understand that when I visit him on a good day, that doesn't mean I don't have bad days. Some days I feel like my feet are glued to the floor. I have other things to deal with like arthritis, especially in my feet, It's discouraging and I feel sorry for you, but use walkers, and electric chairs, and do the best you can. Good luck. Mayo is doing deep brain stimulation now. That might be a possibility for you. And there's a mobility disorder in Gainesville, FL, that also does brain surgery.

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Hello @franella2, Welcome to Connect. Thank you for sharing your experience with orthostatic tremors. It really helps when members looking for information and answers can find others with the same or similar symptoms and learn what has helped them. You posted in an older discussion which I don't think has any active members. You may want to join this newer discussion below where @vicki55 @onamission and @helenstamas have posted about OT.

Primary Orthostatic Tremor: https://connect.mayoclinic.org/discussion/primary-orthostatic-tremor/

You sound like you have had good success in dealing with OT and share some good suggestions. Do you mind sharing what you were searching for when you found Connect?

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Hello:
I not sure if this is still open – https://www.mayo.edu/research/clinical-trials/cls-20308041
Might be worth checking into. Sometimes when ou call about a study – there might be others you might benefit from.

Here is a short article from 2010 written by Dr. Ahlskog (who is an authority – some might say the authority – in the PD world) – https://newsnetwork.mayoclinic.org/discussion/orthostatic-tremor-significantly-affects-quality-of-life/

That article might be good to show to your neurologist.

Hope this might help.

Peace
Larry

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GOOD AFTERNOON LARRY THANKS FOR THIS INFORMATION ON ORTHOSTATIC TREMORS. MY EVALUATION FOR PD INDICATED NO ELECTRICAL ACTIVITY. THE NEUROLOGIST DID NOT TEST WHILE STANDING. I WAS PRESCRIBED KLONOSPAN BY THE NEUROLOGIST BUT MY PRIMARY CARE PHYSICIAN REFUSED TO CONTINUE THE PRESCRIPTION. THIS INFORMATION SUGGESTS THAT I SHOULD MAKE AN APPOINTMENT TO HAVE ELECTRICAL ACTIVITY TESTED AGAIN WHILE STANDING . THANKS BAMMA

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