This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

By jitterbug2
Hi, Gloria -and all the OThers (is that a suitable term for Glorias Gang?)
Further to my first meeting with my fellow sufferers at the Houston 2016 convention I am still eager to learn more about our shared condition. Without any disrespect I would note that we had many other things in common apart from the extremely rare and debilitaing 13-18 Hz tremor. All of us are middle aged, mostly Caucasian and obviously intelligent. Some of of us have typical ailments shared by others of our ilk - fading eyesight, muscular wastage, arthritic joints etc. Jane gave us a fascinating presentation on the links with optical disorders and I was encouraged to follow my own experiment with Coloroid tinted lenses which, alas, proved inconclusive. I did not check with others at our meeting as at that time I had yet to encounter the problem for myself on Otic (hearing) imperfections but, having suffered temporary deafness following a minor winter virus I am eager to check whether any others have similar symptoms. As I am now in my late sixties I had expected that my hearing would decline but was not prepared for sudden deafness. Following visits to my local GP and a text a Hearing Centre I aam satisfied that the deafness is due to a virus causing a blockage in the Eustachean tubes. The Hearing Consultant confirmed this but identified the main problem as an Inner Ear defect, probably something in the Cochlea. We know that balance is affected by inner ear disturbances and we all know that balance is a major problem to OT patients. Is there a link? How prevalent is lack of hearing within our community?
By Dwight Kraai
It is my opinion that OT consists of both balance problems and vibrating legs.
We learn to compensate for our vibrating legs and similarity we learn to compensate for our balance broblems.
Dwight Kraai
By kellytherev
Hello Everyone,

I had both DBS surgeries in March. My health is improved as a result. The tremor in my right leg is greatly improved, and the tremor in my left leg is slightly improved.

I'm wondering whether there is any wisdom about what to say during programming appointments that will help the programmers?

Given the current settings when the tremor reduction is maximized, I have some difficulty speaking as easily as I am accustomed to. The programmer at the Mayo Clinic mentioned that some people have one setting for standing and another setting for speaking. I would like to learn more about this.

By Lorie M
Kelly,what is DBS? I noticed you mentioned Mayo clinic. I was diagnosed there and Gloria's group had a meeting there a few years ago. Is anything going on there for OT? Did you meet Dr Matsumoto or Dr. Klein? I live in MN. I have not been involved much except reading notes on Face Book on the OT site there
Lorie M
By KathyR
I'm back after a long delay of 'life happening'. I hope to now keep up with comments, research, etc.

It is amazing to read all of your comments and to see the different stages of OT that could be ahead. And, it is amazing to see comments from all of the USA but also from around the world! When I first started searching for answers, I ran across a lot of comments from Great Britain and I couldn't find anything from the states. Boy did I feel alone. Then, ironically, I had my DNA tested through Ancestry and was shocked that my pie chart was 34% from Great Britain! Dad was from Alabama (but heritage of English/Irish and Mom was Italian). You never know!!

As with so many of you, when asked when my symptoms started, my answer was always 'I don't know'. I just know that for years my legs would tremble and I would have to lean on something or sit. When it started getting worse I finally asked my personal physician. He put me on beta blockers which did no good. Then he sent me to a neurologist who had me walk forward, backward, bend over, push my head against his hand - all those useless things doctors do when they don't know what to do. At the beginning of the appointment I had started to mention that my daughter found articles online from Mayo Clinic and OrthoNet and he stopped me dead in my tracks as soon as he heard the beginning of 'online'. Finally, after doing all he could think to do, he finally said, 'OK, what were you saying about your daughter......" He said he would look into it and call me if he found anything of interest (?)! He did call the next day and was astonished that what those two articles said was exactly what I was describing pertaining to my symptoms. I have not found a single doctor that knows what Orthostatic Tremor is. Nurses know but not the docs. I wasn't comfortable with this neurologist so I made an appointment with Dr. Hauser at the University of South Florida Parkinson's center. He specializes in Parkinson's and MS but was familiar with OT. He did diagnose me with Primary Orthostatic Tremor Plus, meaning that I also have hand (mostly left) tremors as well. He said that in his over 30 year career, he had only had a few cases of OT. At least he knew what it was! Anyway, I've been on Clonazepam three times a day and sometimes I have to take an extra tablet especially if I'm stressed. I can walk if at a decent pace but I have trouble standing or strolling. To make matters worse, I have spinal stenosis and bulging discs. I think that is harder to deal with than the OT. I have a handicap tag for the car, use the motorized shopping carts if I'm shopping, I have a shower seat and a stool in the kitchen. I realize that I am much better off than so many of you but that might be my future. I just wish I knew of others in my area with OT and or doctors in my area that are actively treating OT. I'm in Largo, FL - Pinellas County - the Tampa/St Petersburg USA area.

God bless all of us and banning together on this site and sharing only helps all of us understand.
By Lorie M
Kathy R.
I live in MN. I just sent my "spit" in today for DNA. Not for medical but for heritage. My son and his wife gave me the package for Mother's Day. Should be interesting. If Orthostatic tremor was more common perhaps a DNA for medical reasons would be educational. I have had bulging discs also. Cortisone injections worked wonders for me! Interesting that spell check underlines orthostatic . Weird!! Goes to show that not much is known about OT.
When I type I need to go back and remove letters that have been duplicated also.
Just keep your toes relaxed and your knees tight when standing. Sit when you can.
Have a good day!
By KathyR
Thanks Lorie. It is interesting to see the 'pie chart' of your heritage however, all the pages and pages of other stuff they send is almost impossible to understand. I was disappointed that it didn't explain more. I sometimes go to an ancestry class at the library and they agree that it's difficult to understand.

As for my back, the injections didn't do anything that lasted. I find that sitting with a heating pad when I first get up and during the day if I need helps more than anything. I can't wear pants with a waistband because the band tends to hit right where my pain is, however, I bought a back brace and it does help especially if I'm in the car for long trips or doing things where I'm moving around a lot. If those don't work, I take an Aleve - but only as a last resort.

Thanks for the advise on keeping my knees tight and toes relaxed. I noticed a few years ago that my right foot toes tend to curl under and it is beginning to look like my toes are heading to overlapping. I don't want that to happen and plan to have a doc advise if it can be stopped. As for the keyboard, yes, I have to self correct quite a bit and also have to stop and calm down sometimes when I really get bad. At least I'm not at the stage some people are reporting. It is such a relief to finally find others to talk to or at least read about and learn from.

Stay strong,
By gloria
Hi ! Kathy & All :
I find it interesting that many with OT are still finding it difficult to find a diagnosis however in my time( 1992 ) it was VERY difficult and mis-diagnosing generally the case. However I too had back pain at that time .... severe compression spinal lumbar stenosis and had surgery which stopped the pain but not the standing problem of the un-diagnosed OT of course. As far as our toes curling under when standing is a very common symptom of OT....... I remember at one of the first meetings in Omaha the question of toes curling under was asked and all the OT people raised their hands.

We are lucky to be in an era where we are showing some very promising research results for OT ........looking forward to information about the Florida Clinical Trial at our meeting in Omaha. All the best, Gloria
By Mark
Hi there, l posted a question on "a rare entity" following a recent paper suggesting OT effects cognitive ability. Would anyone like to comment on that forum?
By gloria
First : jitterbug2 : Love your sense of humor , wish we could all retain humor to help fight back at this bane in our lives . Hope your hearing problem is resolving . Hearing and eyesight problems of course can really exacerbate our OT symptoms greatly !!! I hope by now you have good news to report.........Gloria

Second: Is my long overdue report on ...... How is everyone ? This type of reporting helps us greatly on establishing average neurological OT progression periods, here is mine..........remember too my stage in age is now a great, great grandmother in her 80's and my symptoms started in my 50's which is the average but not always. My beginning OT symptoms started with the feeling the need to sit after standing around 15 minutes or more however I have had OT for almost 30 plus years and now at this age I believe my standing is an expected one........ I get up from sitting and the call to sit down is almost immediate......walking at a good pace is still doable. Hope all OT friends will post an update on the progression of our OT bane they have experienced and any new coping skills that are helping................ Gloria, " the OT antique one"
By Mark
Mark wrote: Sun Jun 11, 2017 4:07 am Hi there, l posted a question on "a rare entity" following a recent paper suggesting OT effects cognitive ability. Would anyone like to comment on that forum?
Did anyone see this? I, for one, fear my brain is less sharp than it was. Is that OT?
By gloria
Hi ! All: As you might have read before I have been studying OT's progression and it seems when we first start with OT we average a beginning standing time of about 15 minutes but with time it reduces slowly down to seconds. It would be interesting for all to report their OT beginning standing time , how long you have had OT, and what is your standing time now ????????? Gloria
By Lorie M
I have not really timed myself about how long I can stand. I usually just automatically lean against something or keep moving my feet a little while I am talking to someone. I would guess it doesn't take long for me to sit. I will try to time myself for you!
Lorie M
By bevnix
I have had the tremor approximately 4 years. At first I could stand 5 minutes now I can only make it about 3 minutes.
Bev Nixon
By Betty
Hello all,

I have had OT approximately 23 years, but that is when I first noticed tiring when standing. That was in 1994. I feel it started a couple of years before that.

When it first started, I could stand an unlimited amount of time, but would feel tired and begin to feel weak. After a few years, probably 1996, I started having slight tremors and more weakness in my legs. My standing time was getting shorter and I would find places to lean or sit. By 1999, I had a noticeable tremor and legs were weaker. My standing time was just seconds.

At this point, my standing is almost nil. When I get out of a chair, my tremors are severe and I must move; but unlike most of you, walking does not eliminate my problem. At this point, I can hardly walk and am unable to walk very far. I must have assistance. In the house, I "wall walk", and do use a walker; but I continue to try!

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