The Orthostatic Tremor Forum (archive)

Sara, I also realized that I wasn’t crazy after self-diagnosing myself from this website. I had leg tremors while standing for about 10 years and it was progressing. As recommended by others on the site, I made an appointment with a neurologist for an EMG. Along with the sadness of this disease, I had great relief to label it as Orthostatic Tremor. It was like putting the last piece of the puzzle together……Complete…….Done.

There is no question about the intensity of the symptoms. The tremors get worse as your body tires or experiences stress. I can walk swiftly entering a store after driving in the car. But I look like a different person slowly struggling as I exit the door, tired from staggering among the crowd and waiting in the long checkout. As an example: standing to put my make-up on, I look at the clock and realize that I’m running late. The anxiety makes my tremors increase.

The “life style change” would be to learn the limits of your body, resting whenever needed. Don’t be afraid to tell people that you have a balance problem. That usually satisfies them. We can cope with OT by taking advantage of all the wonderful tools that make our life more comfortable….stools on wheels, walking sticks, shower benches, portable devices to take on vacations.

Because of this site I was able to get some relief by wearing prism glasses. You can read of my experience on the postings under OT- DISCUSSION, Questions, Thoughts and Advice: and the 3 topics of prism glasses and eye related movements. We are here to support each other and get the word out of OT to those that don’t understand our situation. You shared and it helps.

Nancy

Nancy thank you for your post. I am finding this website is a lifeline of support and helpful suggestions.

Sara: When you described your [ workplace is very " hectic" and can be "stressful"*] you are describing a situation which is thought it might alert the adrenal system and "adrenaline rush" seems to make our OT more intense. This type of connection with any kind of "stress" has been discribed by a number of OT people . I personally have had this experience but on different occasions. In your case this is an office situation and I hope you find a way to work around a hard environment . Keep us posted, Gloria

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A new discussion topic "Doctors familiar with OT" has been started by a forum member looking for someone in the Las Vegas, NV or Cleveland area. Link to : Doctors familiar with OT

Just joined the site and wondered if it is indeed the right one for us, my husband has been diagnosed with Parkinsons and has what we think is orthostatic hypotension, cant stand for more that a minute, passes out and falls down, can walk with the best, so is OT the same as OH, does anyone else have both problems? we live in Spain.

Hello Ruth: No OT is not the same as OH. The symptoms of OT upon standing the muscles in our legs contract and become very hard to the touch and start to tremor ( average 13Hz to 18Hz).... released by sitting or walking. Has your husband been given blood pressure testing upon standing? Hope you find an answer to your husband"s problem. Gloria

I am happy to have found your site, it has helped me immensely as I have experienced OT now for over a year I am under the Doctor but the Neurologists are unsure of my condition but you have shown me exactly what my problem is great to know I am not alone and someone will understand as you say it is difficult to put into words exactly what I am feeling I co have a stick to help me when standing still , I am on tablets prescribed by the Consultant but they do not seem to be helping I am due to see the Neurologists again in November, I have passed your www site over to my Son's allowing them to understand more about OT, so this is June Sutton thanking you very much and I will be keeping in touch, thank you .

Hi! June: Welcome to the website...... it was good that you found the site and it helped you identify the symptoms of what you where experiencing plus it is a place of understanding of what life is like with OT. You say that your neurologists are unsure of your condition , perhaps they will give you an EMG to verifiy your condition. Also it sometimes takes time to find the proper medication (tablets). Keep us posted, Gloria

A reminder that tomorrow there will be an interview with Mike about OT on Talk Radio Europe.

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Mike, who you may know from the very helpful video about OT posted recently. Or, you may have met him in Rochester or Omaha at one of the OT meetings has been invited to speak on Talk Radio Europe about Orthostatic Tremor. The program is scheduled for September 29th at 1:30 PM CEST (Spain time)

Below is a link to listen to Talk Radio Europe where you can listen to the broadcast on September 29th at 1:30pm:
http://www.talkradioeurope.net/

Important: you will need to coordinate the schedule with your time zone, and this link may be of help:
http://www.timebie.com/std/spain.php?q=13.5

for example if you live in east coast of North America the program will be aired at 7:30 AM EST, for other conversions use the link above

Talk Radio Europe - Lifestyle show with Selina MacKenzie hosted Mike Senker and discussed Orthostatic Tremor on Tuesday, September 29th. If you missed the show you can listen from the link below. The discussion starts at 0:15:20 of the recording.

http://bit.ly/RadioTalkEurope_OT

Mike: What a great interview you had with Selina MacKenzie on Talk Radio Europe ......... the broadcast was a wonderful way to be able to get the word out about OT to a large audience. Thanks again !!!!!!!! Gloria

Hi Mike -

Very successful interview, well done!

Hello, i am new to this post. I was diagnosed with OT earlier on this year after eventually going to my doctors to find out what was happening to me. My earliest recollection of not being at ease standing was back in 2004 but didn't take to much notice, but it gradually become worse so hence the visit to doctors. I was referred to the
Hospital For Neurology and Neurosurgery, Queen Square, London. where I was given tests and diagnosed. My life has changed so much in the way of not being able to do what I had found so easily before. It's so embarrassing when friends stop for a chat when out, I have to say excuse me but I need to lean against something in case I fall. I find myself pushing people out of the way in desperation to get to a seat on the tube it's just not like me to be so rude but the thought of standing is a no no. I have to sit down and iron now, and also have to sit to prepare food, make beds, gardening. Everything takes so much longer than it used to. I don't look forward to going shopping and have to have a trolley even if I'm only buying a couple of items, it helps to lean on it especially at the checkout, are these things you find you have to deal with on a daily basis?

My name is Mel and I live in Tasmania, which is the southern most state in Australia. I am 65 yrs old and started getting a bit shaky in the 1980s. By 2004 it was quite noticeable that I was having trouble standing.

No-one could help and by 2010 a lot of people thought I was just plain rude or ignorant as I just couldn't stand to chat with them or queue at the supermarket ... you all know what I'm talking about, yes.

In 2013 I did my own research and found that my movement disorder was/is OT. The GP (he'd never heard of it) agreed and sent me to a neuro who'd never heard of OT either. She agreed with the diagnosis tho' and put me on clonazepam & later gabapentin and both were a disaster which included stacking on a whopping 12 kilos in weight in as many weeks. I was also extremely moody and hard to live with at that time.

So I threw all my pills down the toilet and these days I take 1 L-Theanine calming capsule daily and drink green tea. Plenty of bad days but some days aren't quite so bad.

My kitchen is now totally re-arranged with 2 x low tables and stools where I do my cooking (mainly on a portable induction cooktop) and use a Bellini UKM sometimes too. I have a cane stool, a wheelie-walker, an ordinary walking cane, and a collapsible portable stool that I sling over my back. I try and stick to just the walking cane and the portable stool when I am away from home (which is quite rare these days).

I do all my meat/veg/grocery shopping online and have it delivered to my kitchen bench. Been doing that for nearly 2 years now. Also all my Christmas shopping and shopping for absolutely anything, is all done online. I don't like having to pay extra for delivery, but its a necessary convenience is this online shopping.

Well, so much for a quick introduction, lol. BTW, there are 500,000 people living in Tasmania, and I don't know of anyone else who has OT here. I could be a 'one-off', but wouldn't know.

Hi Mel

Welcome! ...thank you for joining the forum and sharing your experience and thoughts about OT.

You may have fellow OT neighbors. Suzanne who joined the forum in May, 2015 mentioned Tasmania as her location in the member listing and posted the following:

http://www.orthostatictremor.org/phpBB3 ... 4656#p4656

And, Sue who organized the wonderful meeting in Australia 2013 mentioned that there was an attendee from Tasmania.

wishing you all the best.