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

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  • 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/

  • Yes I have the same condition..its life changing my legs are weak when standing and sometimes now when walking ..my balance is terrible so I have to walk with a rolls for.. people can't understand why I am still myself and have this awful tremor..im still driving as I have no symptoms when sitting..i haven't told DVLA as none of their medical questions related to me..should I tell them?

  • Hi, I see you have just joined, this site is particulary for people who have Huges/APS- have you been diagnosed with this?

    You have also posted to a very old post...

    I suggest if you have Hughes then you repost your question and tell us more about yourself.

  • No i havent got Hughs/APS..i found the site a bit complicated and muddled ..will try again..

  • Hi trip trap,

    If you have not tested for HS/APS and think you might have our disease, I suggest you read about this autoimmun illness and if you after that still believe you can be positive then talk with your best Doctor to take the antibodies that is required.

    Best wishes from Kerstin in Stockholm

  • I guess you are in the uk? It will be interesting to know if you have Hughes Syndrome (sometimes known as Antiphospholipid Sydrome or Sticky Blood). Orthostatic tremor is also a rare condition as I expect you know, and it would be interesting to know if there may be a link between the two. Do you see a Consultant Rheumatologist and/or a Neurologist?

  • I see a consultant neurologist every six months..i have been seeing her for 3 years..the only change has been with the tablets clonazepam and gabapentin which has taken the feeling of heavy divers boots on my legs and feet and stopped the tingling ache..i walk slow now and mybalance isn't good thats why i have to use a 4 wheel rollator to keep me safe

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