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orthostatic tremors

Posted by @grammyjo in Brain & Nervous System, 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?

Tags: Other, ortthostatic tremors

wendygsd likes this

Posted by @joycegroenke, Mar 15, 2012

We are not doing studies on orthostatic tremors at this time.


Posted by @annalee, Jun 3, 2012

Are you planning any in the near future? do you know what part of the brain it is the COMMAND POST?


Posted by @wendygsd, Aug 5, 2012

As far as I'm concerned, there is no treatment, or no interest in finding one. I found this discussion while doing my almost daily research to find answers, treatments, studies, etc. I have suffered from OT for many years, am 62, and it is a very debilitating condition for me. I joined the Mayo Clinic discussion group so I could post, and while joining, they had a list of every illness/condition condition under the sun, to check off that interested you. I may be mistaken, but I searched for OT and POT and didn't even find it listed. It is ridiculous that nobody takes it seriously....there is NO treatment, and our quality of life is nonexistent. I would love to go to the famed Mayo Clinic, but I know of people who have been there with OT, and you have no answers either. Why is there no interest?? It robs us of our lives, and eventually the will to live. I live in the Northeast, and I can't even find a movement specialist that really understands it. Living with a chronic, debilitating illness is bad enough, but it's very upsetting when none of the big teaching hospitals don't have an interest, nor can I find a neurologist or movement specialist that does. Nobody is doing any serious studies on OT....a small one in Australia is being done on Lyrica....which my own dr. can give me, and then another small one on non invasive repetitive transmagnetic therapy on the cerebellum is being conducted in Paris.
Annalee, you're right....many people who are affected are interested, but those who can help us aren't because it doesn't affect enough people, and there's not an easy answer. I'm ready to be a guinea pig.....I have no life already. I doubt I'll be visiting this site again, since it's useless for me.


Posted by @annalee, Jun 3, 2012



Posted by @angel404, Jul 11, 2012

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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