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 Chris
Hi Susan
I have been reading with interest all your posts and are quite amazed how well you are coping. You asked about stairs and escalators.....I have trouble with stairs but only descending. I always must make sure I can hold on to a rail no matter what or I feel terribly unbalanced. I have had the odd panic attack on escalators especially really high ones. I try to avoid them whenever I can and use the elevator. Lately I have been using them again but only when I am not tired and having a good day. I find the more tired I am the less likely I can stand for the descent. Going up on an escalator isn't quite as bad and I find I can walk up if need be but going down my legs almost feel frozen or rigid....that is probably why I get panicky. Hope this helps a bit. Hang in there....
Chris :)
Hi! Susan and Chris: Since you are discussing the problem of going down stairs and escalators I thought I should add that you are not alone. This is something that most OT people experience. It is part of the factor that we have very poor balance and the act of going in a downward situation is very compromising for us. I try not to look down but rather straight ahead as I descend an escalator. Descending anything even a ramp can play games with our perception. Gloria
By lynne
Hi my name is Lynne and I have recently been diagnosed with OT, think I have had symptoms for about 5/6 years and was completely mystified what was wrong with me. It is so good to know there are others out there who can understand the problems that we face on a day to day basis. I am not yet on any medication and am keen to keep it that way for as long as possible. I am interested in contacting other people in UK to correspond with who are also OT sufferers, but see from the posts that many of you are from the States.

Best wishes to you all

By Lynda
Hi Lynne

Welcome to the OT Forum. So sorry to hear that you have been diagnosed with OT - but you are amongst friends here! It really does make a difference to be able to label your condition and also to be able to share your experiences and questions with others who are going through the same thing. It never ceases to amaze - and comfort - me to discover that others' experiences of the condition are so identical to my own, whatever part of the world they come from!

There are a few of us in the UK (I live on the coast in West Sussex) and I would be very happy for you to get in touch with me. Please feel free to email me if you would like to. What part of the UK do you live in? A few years ago I had the opportunity to briefly meet up with others with OT (through the National Tremor Foundation) - and it is a very worthwhile experience.

I too am not on any medication at the moment, although I have tried Neurontin in the past. I prefer to go the non-drug route (for as long as I can), although if I found something that really made a difference I would reserve the right to change my mind! I know from this forum that medication does help some people - and I don't blame them at all for doing what they can to ease the difficulties that OT brings on us. There are various coping strategies that we can use to help too - and that is the beauty of this site. We have the benefit of everyone's experiences and can 'borrow' their good ideas!

Anyway, keep smiling - and do feel free to get in touch.

Best wishes

Hi to all,

I have been browsing this site off and on ever since I heard the "OT" diagnosis September 12th at Cleveland Clinic. I must say that my first reaction
to finding this site, and reading others' posts, was that I could have written almost all these posts myself.
I just had a birthday 9-11 and have been now to the 4th neurologist since 2001. As many of you, I have had numerous tests, (MRI's etc.) and blood
work etc. I can totally identify w/ the standing, walking, leaning issues you all have described. I am now 65, have tried to adjust, compensate,
travel etc., but it has become increasingly difficult. I have a cane, (rarely use it, as I need to walk at a quicker pace), I have stools in both the kitchens
here at home and a lake place. I vacuum sitting on my stool, shower holding onto a guard rail or sit down. I detest & sometimes panic w/ escalators,
especially going down. I see that others have had these issues as well. Although I am so sorry to meet you folks this way, in this forum, you have
inspired me to take each day as it comes. Yes, things are relative and we could be much worse off than others. That is not to minimize any of this,
as I can become pretty "depressed" at times. But I will continue to try to put things into perspective. I will probaby try another medication, but so far
none have been successful. Thanks for your listening (collective) ears.

Kathleen from SB, IN
By Sissy
Hi name is Sondra...please just call me "Sam" sister Kim...who i will bring along in the forum.... has OT....i have come to learn all i can...if she is am i....i have lupus myself and certainly understand the need for informed supportive people in my life...thanks for lettin me be part.
Welcome to our forum Lynda, Kathleen and Sam:

As you read through some of the postings you will see that we all have similar problems when it comes to OT. We are all here to support one another, compare notes on what helps, what doesn't, (meds, etc.). For some of us it has taken several years and many physicians before a diagnosis was made. I had a diagnosis in less than two years and 2 neurologists.

All of you, please stay in touch with the forum. We all garner our strength from it and hope that you will feel the same. None of us are willing to give in to this condition and I hope that you all feel the same.
By TimW
Just found your site and hope I am in the right place.

I started a thread re: my issues and am anxious to here from you (all, some, anyone...LOL).

It's been a long few years trying to find an answer to what is going on with me...( I see having seen only 4 neurologist is just a drop in the bucket round here).

Hope everyone is fairing as well as can, and if all I have left is faith.....then so be it. :)
Hi, :D
I am new to this site hence the introduction.
I have been suffering from tremors since last November, just came on out of the blue.
Like others i have had many tests and Drs visits. I have seen three general practitioners who all said i am depressed and anxious. I kept persisting so i got many blood tests and a visit to an Endocrinologist to see if my thyroid was a contributing factor. Endo refered me to have a test for Epilepsy. Thyroid clear and no epilepsy. All DRs could see the tremor but looked at me like i was a puzzle they couldn't solve.
I quit my job due to embarrassement. I just decided to live with it. One Dr said it will either get worse or go away, i was hoping it was the later.
I got pregnant with my fourth child and my midwife refered me to a psyciatrist to talk about my tremors. The psychatrist booked me into an MRI which came back normal and booked me into a nuerologist. Since the MRI came back normal she came to the conclusion that i was in fact in denial. That i am infact depressed and anxious. ( even though i didnt in the least feel this way in the beginning).
I eventually accepted that i was indeed depressed and anxious again, i broke. I could no longer live with the isolation from hiding from the world. I couldn't help thinking that i will forever be depressed i was a blubbering mess. (pregnancy hormones didnt help). The psychatrist put me on antidepressants, which i was reluctant to take but i can honestly say i don't think i would have pulled through this time without them. I thought they would fix my tremors since it was all related to depression, but it didnt.
Finally this week i went to see the Neurologist, now 33 weeks pregnant. He has initially diagnosed me with OT but will have further testing after baby is born.
I felt immediately relieved i had a name to it. Then i felt immediately mad that i have been made to think i was crazy and went on drugs which are a risk to the baby, for no reason.
I know this is what i have, the symptoms are so simmilar to a lot of you.
I have been only able to stand for sixteen seconds before my legs start to shake uncontollably so quickly and i feel like they can't hold me up anymore. Totally fatigued. People have mentioned the shaking to me so its very obvious.
I get some relief from leaning against something but don't feel normal until i sitdown again, however i feel like i have done a work out and my muscles feel sore.
I get tired when walking a little way but unsure if that is because i have a hugh belly.
I'm sure you understand the grief i was feeling not knowing what was wrong yet i felt like i needed a wheelchair so i never had to stand again. i would look at people wondering how they stand for so long.
since finding a name for it i am more positive about finding solutions to getting my life back, for a while there i thought me and my baby would be forever restricted to indoors, alone. I had allready started pushing friends away.
I find your stories inspiring because you all seem to find a way to live with this.
I would like to ask one question if i can, how bad does it get? I am thirty and would like to know what to expect for the future?
Sorry, this is so long. A big Hi to all.
By Lynda

Welcome to the forum. I am so sorry you are plagued with this thing too - but you have come to the right place! We are all in it together and it is such a comfort to be able to share experiences, problems and solutions.

Your story is very similar to my own (I seem to keep saying that to people on this site!). I first noticed the tremors at the age of 29 after the birth of my first child. I too was told I had anxiety, sent to an endocrinologist, had thyroid tests, and struggled to come to terms with what I was being told. I did feel anxious - but I knew deep down that the root of the problem was the tremor, not my mind. It is hard though when the medical profession tell you otherwise! Finding a diagnosis on this site (after 15 years!) and subsequently getting it confirmed by a neurologist, made all the difference to my ability to cope with the condition.

I just want to encourage you not to give up on life and enjoying these early days with your children. They are precious times and you will find ways of coping. I have two children - now aged 21 and 14 - and, although there have been some things I haven't been able to do with them as they've grown up, I have tried to persevere and not let it affect my (and their) life too much. I know how tough it is though! Helping your friends and family to understand how OT affects you is one of the most important (and most difficult!) things to do. If they can be a support to you in the areas where you need it most, this will be a real help.

All the best - keep smiling!

By MikeS
I would guess by your nickname you have chosen that you are an English lady living in Austrailia ....but then again I am not the sharpest tool in the box and maybe completely wrong.
You are one of the younger suffers of OT and hopefully you are fit and healthy in all other departments .
Trying to understand this condition and explain it to people is one of the hardest things to do .Mind you having it isnt much fun either!
You have got over the first hurdle you have been diagnosed.Now all you have do is deal with it and that is no easy thing But you can do it .You will find on this site tips on how to make your everyday life easier.You of course will have a new baby to deal with soon and that comes with its own problems they are the most precious thing you will ever have and the most complicated to understand and they dont even come with a book of instructions.
You asked if it will get worse that is a hard question to answer because I /we dont know .I can tell you it wont get better but you will deal it with like we all do .It now has a name,you can tell people what you have and you will find they will help you there is a card you can print off here .Make sure you have stools to sit on when doing things.I personally dont take any medication for it ,but that is a pure personal choice.I have a wheelchar that I reluctantley use...I suggest if you get one get the one with the solid tyres...had 2 flat tyres the last trip I made!
I am not going to say much more If you want to ask anything else you are in the right place we have all gone through the same problems (well I didnt have a baby)
Visit here ,vent here, do what ever you need to do.Nothing is trivial we are a big family all here to help each other as much as we can.
Dont worry about asking questions that might have already been asked sometimes its hard to wade through all the stuff that has been written
Keep smiling
Hello and welcome to our forum!

Please do not hesitate to post on the forum. Although most doctors haven't a clue as to how this condition can be treated, we as a group help one another in more ways than one. Since this is an "orphan" condition, there is no research going on (like research for Parksinson's, etc) since the clinicians and researchers believe there aren't enough of us to warrant the time and money it takes to research. However, we beg to differ with them since we are the victims of this condition; I just gave some information to my neurologist that this condition spans the globe and that there is actually a foundation and a forum for those of us plagued by OT. He was rather surprised to hear that we had a forum. I suggested he take a look at it to see just how many of us are dealing with OT every day of our lives and how we cope. As Mike says, keep a stool in every room of your house. I even have one in my closet so that I can sit and choose my clothing for the day. I imagine that having to rear children with this condition is wearing you down. Again, please come visit us on the forum whenever you feel the need to. We look forward to hearing from you soon.

Take good care,

Thankyou for replying to my post with so much encouragement. I read it with a tear and a smile. ( yes i am English and residing in Aussie).
It was good to read your replies after a tough day. All i have done today is sit and go to the shops for not even twenty minutes and i feel totally warn out. Fortunately the kids are entertaining themselves but when i am really bad and stay in bed, the kids and i play cards or board games. i'm sure like i do they cherish those times as they are so much fun.
I am fortunate my husband cooks everynight and he tries with the housework. i am grateful for what i do have but as you can inderstand i am struggling at times because it is so unfair.
Thanks again. :D (i'll keep smiling)

In response to your question about how bad does it get, everyone is different and has a different experience. But I have had OT for about 30 years (for the first 20, like you, thinking it was an anxiety disorder), and I do not think my condition has gotten especially worse. It was dreadful at the beginning when I did not know what was wrong with me and I was mortified by my inability to stand and talk with people, to pay for groceries without trembling or freezing, etc. Since finding out the problem was OT I've been able to cope so much better and am finding more and more ways to get around difficult situations I agree with Lynda that helping friends and family to understand ow OT affects you is the most important thing you can do.

My daughter was 8 when my tremors began in a full blown way. The OT did not significantly affect how I raised her. (I remember however standing at at parent teacher conference and being asked by the teacher please not to lean on the display table and, again, feeling mortified!) Sitting, leaning and eventually explaining my problem to people have helped me to get through all the difficult times.

Welcome to our community and all the best to you!

Hello. I found this site while seeking an explanation for the leg tremors I experience. I have no diagnosis, and in fact, had an MRI last night. My neice, who is a med student, suggests that my symptoms all fit the diagnosis of orthostatic tremor. After reading your excellent descrition of what happens, I agree. I am very grateful no to be alone, and not to be crazy.
I can walk without any difficulty for long periods of time. The tremors occur only when standing still. I first noticed them in the shower, then while cooking, now even while at work. They seem to be getting more pronounced.
At first, I thought it might be an inner ear or some kind of balance issue.I saw an ENT doc and also tried shoe inserts. Then I thought maybe I was just incredibly out of shape and that I must have weak leg muscles. I tried leg strenghtening exercises.THe tremors persisted.
When showering became an challenge, I saw my doctor who has never heard of OT. She ordered the MRI (suspecting Parkinson's she said) and has referred me to a neuorlogist. I cannot be seen until January--2 months.
I am very grateful for this excellent site and for those of y ou who so kindly share here. Thank you!
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