The Orthostatic Tremor Forum (archive)

Dear all
I trust you have had an enjoyable christmas. Hope it hasn't been too tiring for you
Just wondering if any of you have found that your shaking feels more pronounced on one side of your body. Mine feels worse on my right side and doctors have noticed that my right leg seems to have a more noticable tremor. Just curious
Wishing you a very Happy New Year
Linzi xx

Hi
yes i have noticed that also my right side tremors more.
guess it dosen't mean much. Just an abservation.

i had a very quite christmas. Didn't do much. stayed away from these crazy malls.

wishing everyone a HAPPY NEW YEAR
candyse

Yes, tremor starts in right upper leg, appears to be associated with hamstrings. I was told by a Chinese medicine doctor that tremor starts there, and a Swiss masseuse recently told me I have a noticeable energy block in that location and recommended Shiatsu. Occasionally I get a cramp there, though it's not related to standing as far as I can tell.
Noni

Hi,

I thought I would add my comments to those already posted.

I have not found my tremors to be worse on one side or the other; they seem to be consistant. I was first given a diagnosis of "probable Orthostatic Tremors" in 2001; but was not given any information.

In 2003 my husband and I went to New York City and I was given a battery of tests by Dr. Seth Pullman, and a definite diagnosis with all the workup information.

He told me there were medications I could try which may help, but there is no cure at this time.

My tremors affect my whole body when standing; but when sitting or leaning on something substantial; they disappear. I do get severe feet and leg cramps after having stood for too long.

I see you wrote in December of 2007, so this is a little late to answer, but it is always good to hear from others who know what you are experiencing ~ for the most part.

Good luck!

Betty in Florida

Hi Betty
I also get horrible cramps in my shins and feet and feel as if my hips and tops of my legs have been set in cement when standing. Its especially worse if I am about to step onto a train or in a lift when I cannot lean. This is a daily occurence for me as I commute to work every morning and need to get into an often packed lift to get to my office. I have also noticed that I struggle more with my tremor when there are lots of people standing around me and practically barge them out of the way to stand against a wall or something, which I feel leaves me looking very rude It is also embarrasing when speaking to a senior staff member as I need to lean against walls which gives me a look of being very laid back and maybe a bit disrespectful and I don't always feel they want to hear about why am doing that!
I wonder if all this shaking burns any calories as I have seen equipment that people can strap around themselves to shake the fat off . Just a thought!
Linzi x

Dear Linzi : Sorry to hear your daily routine of commuting to work is not good for our classic OT symptoms. Perhaps if you carry a cane/seat with you people will recognize that you have a problem and show you a little courtesy. Nonetheless crowded situations are always our " number one public enemy". As far a dealing with your office community perhaps if you simply explain that you have a nerve/muscle disorder in your legs but then for your closer associates give them the website address so they can read " What is Orthostatic Tremor" on the home page. I carry printed cards with the website address on it because trying to give a lengthy explanation is too time consuming for many occasions.

Has your doctor suggested any medications? Clearly there are no medications that will eliminate our symptoms however there are a few that will take the edge off them and help us to tolerate OT life easier. As always, Gloria

PS. In answer to a question you asked in another posting "Is shaking worse on one side"? Orthostatic tremors are simultaneous in both legs.

Hi Gloria
I have tried to hint to people to look at the forum, my family have been really supportive and my mum is keen to join the forum to add her thoughts/comments. When I saw the neurologist for my yearly checkup in September (I am under Dr Brittons team, I notice he has written some literature on OT) they did suggest that I think about taking some meds but I am worried about the side effects and as I am 33 I worry that my body will get used to them and (if this illness is progressive) I may not have anything to fall back on if my symptoms get worse.
Thanks for your comments and support the cards idea is a good one
Linzi x

I for one think you are right not to go down the meds route, Linzi; whilst there is no cure in sight - nor a cause - I think we just have to 'grin and bear it'. That's my opinion, having seen how meds affected my late wife, and how they actually made her much worse. She had CFS/ME, which essentially is comparable to what we all suffer from, in that there's no known cause and no known cure.

Anything is better than increasing the risk of side-effects, I feel. But I still have a good quality of life, doing the things I enjoy, such as riding a bicycle (no problem there!). And I carry a folding seat about with me, and simply plonk it down and sit on it when I have to. I am delighted at the number of people who come up to me - sitting down there on my stool - and say, "What a good idea! I think I'll get one of those".

Richard
Somerset, UK.

Hi Linzi (and everyone)

Your experience in lifts and trains etc is so familiar - I can really sympathize. I had to travel across London on the underground recently - in the morning rush hour - and it was a nightmare. People were packed like sardines on the train and I had to cling onto a post for support! I think Gloria is right - if I had been carrying a stick/stool someone would have been more likely to give up their seat for me. I find I am too embarrassed to ask to sit down, especially when I look healthy on the outside! However I can understand that, being so young, you may be reluctant to carry a stick around with you.

It is a good idea too, to have a brief explanantion at the ready for people who stop to talk - and Gloria's idea of a card is great. The National Tremor Foundation issue a card (if you are a member) which has a general explanation of tremor conditions on it. Although not specifically for OT sufferers, it is handy to carry around, and it looks 'official'.

Regarding the tremor being worse on one side, my legs seem to tremor the same on each side, but when I am standing I also get a tremor in my arms/hands and this is noticeably worse on the left. For example if I stand (leaning) to make a cup of tea, I can then carry the full cup in my right hand but not in my left as the tremor is too bad. I don't know if this is all part of the OT or whether I suffer partially from Essential Tremor as well?
Do others get hand tremors when standing?

And as for burning calories off, I'm pretty convinced that we do!! When I've had to stand (even leaning) for any length of time, I feel as if I have run a marathon. I break out in a sweat, go red in the face and my muscles ache - so I like to convince myself that it's doing me some good! Then I can go and raid the fridge...!

Take care

Lynda x

Hi Lynda (and all the calorie burning shakers out there!)
I also get hand tremors and when I am serving people drinks they often end up wearing half of it
Shaking is bad in both hands when standing but feels worse in the left.
My family are beginning to cotton on and have to be alert and ready when I am passing them a hot drink
Glad that you agree about the calorie burning.
Fridge raiding sounds like a good substitute for all that shaking!
Linz x

HI all
We all seem to have the same feelings with this crazy disease.
Last week i was pouring myself a cup of tea and i poured the hot water all down my legg. IT was a very bad burn. So painful.
Now i know i have to really watch what i carry.
When i am using my walker the tremors start in my arms but when i lean on my elbows they stop. So strange.
So i walk around with my walker leaning on my elbows. looks weird
but i am way past worring about what peole think.
I know i have to do what works for me or i will not ever be able to leave my house.
So my advice is if you need to, get a walker. Don't put extra stress on
yourself or let pride get in the way
take care
stella

Hi all......I would like to think that all the shaking that we do can burn some calories....that is what I tell myself. When I am trying to stand especially in a line up I too get very warm and quite red in the face and afterwards my legs really ache for awhile. As for the hand shaking I don't notice it at all when I am sitting. When I am standing it is a different story and I have noticed recently that I definitely cannot carry any open cups of liquid anywhere without spilling. I used to bring my husband coffee in bed ( which is upstairs) and now if I do the tray is usually half full of coffee as well. Needless to say he brings it to me now....I tend to be quite careful of hot liquids especially pouring a kettle. Oh well....I guess there is nothing we can do about this but be vigilant at all times....especially around the grandchildren.
I really like the idea of handing people cards with the web site on...that would be much easier than having to explain exactly what is wrong with you and just why you need that power cart in the store....
Take care all and hang in there!
Chris