orthostatic tremor. anyone else with this diagnosis?

I have orthostatic tremor, its said to be rare, it is very disabling for me. You can find out more at orthostatictremor.org/ because its complicated to describe and there seems to be no effective treatment. But there has been quite a lot of talk on this site about tremor, I thought I would ask. I would also like to know if Prof Hughes has looked at this.

Take care everyone

5 Replies

  • Hello there, this is not something I know very much about, although I did find this for you, and also read the one you put on here: tremor.org.uk/orthostatic-t... I It will be very interesting to see if anybody else on here has this condition. Best wishes. Mary F x

  • Hello!

    3 years late to the party I'm afraid. But I have orthostatic tremor. I've had it for about 3 years. I've seen a neurologist who knew immediately what it was. He had only seen one other case in his whole career. No effective treatment unfortunately. It started soon after I retired as a nurse practitioner in a GP practice. I gradually noticed that I couldn't stand still in one place for more than a minute without my legs shaking. I would lean on a wall whilst talking to people, always looking desperately around for somewhere to sit. As you say, it's very difficult to describe this condition. It is another "hidden illness" meaning that I look completely healthy. I can walk 5 miles with no problems but standing talking to someone in the street, queuing in the supermarket, queuing in an airport etc are getting increasingly difficult.

    I lean on the wall to have a shower in the morning. Luckily, I have an island in my kitchen so I sit down on a stool to prepare food and do the ironing.

    I know that there are many illnesses which are 100% worse than his one. And I am grateful every day that I am really quite healthy, but it has changed my life completely in a bad way. Ho hum!

  • Hi, If you believe you have or you have been diagnosed with APS (Hughes Syndrome) you can put your own, new question here. As you have noticed the question is 3 years old.

    This is a Forum for APS where we have too thick blood and feel better after anticoagulation.

    Best wishes from Kerstin in Stockholm

  • What makes you think that I don't have Hughes Syndrome?! I certainly do have it. I have just found this section of Health Unlocked. Unfortunately, I have several other health issues and I found the post about Orthostatic Tremor. I just thought that the poor person who'd posted would like to know she's not alone! Even if it was 3 years after the post.

    I'm really sorry if I have offended anyone with this horrible illness. X

  • Thank you for your reply Gordonsmummy29, its never too late with this horrible condition, which for me has got worse in the last 3 years. I was thankful to hear from you and very interested in the fact that you too have it and also Hughes Syndrome, because HS (for which I have a diagnosis too) is such a strange illness and has so many different symptoms including tremor and Orthostatic Tremor is so rare and not researched effectively. I had been wondering if there is some link that might help find a cause and a treatment.

    Best wishes

    To other readers of this post:

    Anyone else out there with diagnosed orthostatic tremor? The best website for information if you think you may have it, is orthostatictremor.org/

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