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 Betty
#6195
Hello Hester,
My name is Betty and I live in Melbourne, FL.
I have had OT for twenty-five years and it took me almost ten years to find out what I have. I saw nine neurologists and none had any answers for me except I should see a psychiatrist, which I did. He told me I didn't need a psychiatrist, which I knew, I just needed someone with knowledge of OT.
I saw Dr. Seth Pullman at Columbia Medical Center in NYC. He did several tests on me and diagnosed me immediately. I was thrilled to finally have a name for what I have.
I tried numerous medications, and I, too, am sensitive to almost everything, but finally found I could take Klonopin. I only take 1/2 in the a.m. and 1/2 in the p.m. Same dosage as you. I do feel I could/should be taking more, but haven't a neurologist at this time and won't increase the dosage on my own. If you feel you should increase your Klonopin, consult with your neurologist. He or she will be your best advisor.
The symptoms you described are the same as most of us have. I am so pleased you found some relief from your tremors with Klonopin, I hope that continues ~ we are all different.
You said you have some good days and some 'not so good' days. I think that is something we all experience, at least at first. As time goes on, you may find your tremors will become more frequent; that seems to be the progression for most of us.
Weakness and fatigue are also something we all experience, at least I do. When you feel fatigued, or tired, listen to your body, give it a rest. I do have pain in my legs and feet when I have tried to do too much. That's when I rest.
As for navigating the forum, you should check with the Administrator; he will be able to answer ALL of your questions. He is in charge of this website, worked out the format and keeps things in order and running smoothly. He is wonderful.....
Hope I have helped a little; stay strong and continue to read posts.
Betty in FL
#6196
Hello, my name is Theresa and I was diagnosed with OT about 10 to 15 years. As you all know it is a very difficult disease . I can't go with out my walker.
Thank you for listening to me. I look forward to hearing about all the OT have this brutal disease.
Thanks
Theresa
#6197
Thank you so much, Betty. You were very helpful and supportive.
My doctor has left it up to me to experiement with Klonopin but not raising dosage without seeing him. So I am going to try and split the 2 pills throughout the day and see if that makes a difference. I'lve read that others have done that.
In the meantime, I will just try to adjust to a new lifestyle. It's just that I do so much and don't know how to stop! I have almost an acre of gardens that require daily attention, I do all home repairs and chores like pressure washing, cleaning gutters, painting, etc. It's what I enjoy and I'm having trouble dealing with the fact that I may not be able to do everything . I have, however, stopped going up on the roof!
I'll figure out how this forum works and check with the admin...
thanks again
Hester
#6198
Welcome. It's not just the constant tremor on standing, it's as you noted, the change in lifestyle. In the past I never stopped moving, working full time as an RN, accomplishing endless tasks, errands, hiking, bicycling, etc., etc. My mother used to ask me: "don't you ever relax?" Now it's constant movement of the legs, arms, and hands on standing (and the constant fatigue). Everything I do seems to be in slow motion. Taking a shower is like a workout at the gym. No medication helps even for a moment. It's discouraging, but I consider it a challenge. When I enter a restaurant and ask for a seating arrangement where I can place my rollator out of patrons' way, I hear: "We'll put it up back"; or - "we'll put in the fire exit" (!!!! brainless!!!), or, as I heard yesterday, "We'll put in in the closet." I have to say gently but firmly, no thank you. It stays with me. I thank God for my husband who is a great help. Good luck to you. We're part of a sophisticated, albeit not desirable, group. Maybe one day soon someone will find, if not a cure, at least a viable treatment.
By Comma
#6202
Hi, there have been a number of posts in this thread mentioning the Melbourne Conference (held last week) and the associated web site(s).
We now have a permanent website at https://otaus.org and amongst other things, the presentation materials from the 2013 and 2019 Conferences are there. The videos of the presenter sessions from the 2019 Conference are not back from the post-production house yet, but I expect links to them to appear on the website as soon as the content has been uploaded.
Hope this helps.
Cheers, Colleen.
By Jolanda
#6211
Hi everyone,

My name is Jolanda, living in The Netherlands. I've seen a neurologist because of increasing tremors while standing. I've been diagnosed with OT, but the neurologist isn't very familiar with this condition. That's why he has referred me to another neurologist, I'm waiting for an appointment now.
I haven't had an EMG yet. So the diagnosis stil has to be confirmed. I see a 100% match if a read the symptoms though.

I hope to learn more about the condition, the symptoms, the treatment and about coping mechanisms by reading the posts on this forum. I'll keep you posted about my appointment with this new neurologist and what he/she has got to say about my tremors.

OT-diagnosis has been confirmed after an EMG bij my second neurologist at may 24th 2019.

With love, Jolanda
Last edited by Jolanda on Sun May 26, 2019 10:07 am, edited 2 times in total.
By admin
#6219
It was a big news day for OT!

The NORD Orthostatic Tremor Research Grant has sent out a request for proposals. The grant is for $42,500 and the deadline for the application is June 18, 2019. Read more here: viewtopic.php?f=83&t=977


And, the OT Survey Team and created it's second survey "Symptoms and Diagnosis". This survey is now open for participation until May 24th. So please take the survey as soon as possible. Read more here: viewtopic.php?f=98&t=976#p6218
#6220
I have tried to join this forum a few years ago, but I didn’t, and still don’t, understand how to navigate your system. I’m giving another try here.
My name is Joy Michele and I have been diagnosed with OT last September 2018. But I had diagnosed myself for years before, but no one would listen to me until I finally got referred to UCDavis Medical Center in California. The doctors there listened to me and it was so wonderful that someone finally understood! I’m 67 years old now and have had this for about 15 years. I did your survey #2 today. I’m not on Facebook, but maybe thinking I should just because I’m all alone with this. Would like to talk to someone who actually has it.
So that’s my quick story. I’ll see if I wrote this in the right place this time.
Joy Michele
By drlorimom
#6232
I signed up for this forum a couple years ago, but don't think I posted anything at that time. Finding this website was very reassuring...realizing that there are other people out there with this dreadful disease, as I haven't met anyone else yet. My experience started in ~1995 and (being a physician myself), I found the symptoms to be rather crazy and illogical (being able to run, ride a bike, play tennis, etc...but not stand!?!). But I knew they were real! My family doc, a neurologist and an internist were equally unable to offer a reasonable diagnosis...so I just lived with it and did what I could to cope & hide it from people. Finally I self-diagnosed using info found online; and eventually found Dr. Diego Torres-Russotto at U of NE, and he made the definitive diagnosis. It oddly felt good to have an official label.

Now, I think perhaps my sister has OT, as well. She is experiencing resistance from her neurologist, who (based on what she tells me) is not familiar enough with the disease and has been dismissive. I am wondering a couple of things:
1) Has anyone seen a neurologist in the Scranton, PA area, where my sister resides, who might be more receptive to considering OT as a possible diagnosis for her? Her neurologist said that "the primary symptom of OT is obvious trembling of the legs immediately upon standing" which I know not to be true. So discouraging for her!
2) Is there a way to get in touch with other OT patients in my area? In other words, is there a means on this website for us to easily identify people who are nearby (rather than search through 6,000-plus posts)? I live in Cedar Rapids, Iowa in the USA.

PS-Before submitting this post, I read several other peoples' posts. Gee, such a nice group of people! I want to meet everyone! :)
By Susie
#6233
Hi Dr Lorimom,
I have to say it's heartbreaking to hear of people going for years with this OT thing, either undiagnosed or misunderstood by health professionals, and for you, a Doctor yourself, it must have been so terribly frustrating. But so pleased you found Dr Diego Torres-Russotto, he may not have told you but (I believe) he is the leading expert in OT and OT research in the USA. I am in Melbourne, Australia and last month we had our second Australian OT conference in Melbourne, it was fantastic, and Diego made a video presentation for us on OT and the latest research he is undertaking. But most of all the overwhelming value of just meeting others with OT, the instant bond and camaraderie was incredible. For those few days I didn't have to explain myself, or like you said hide anything, for once I could be normal. It was wonderful.
We do have a Facebook page that brought us all together, not sure if you are on FB, hopefully your sister may be, it was founded in Australia but there are members all over the world and lots in the USA. There is a document that lists what countries/cities/towns everyone lives in which may help to find someone near her, or just get on there and ask! We are a friendly and helpful bunch and you will get an instant reply! Just search for "Primary Orthostatic Tremor" or here is a link: https://www.facebook.com/groups/orthostatic.tremor/
And if you would like to see Diego's video presentation from the conference or any other info from it here is a link to the website: https://otaus.org/
Colleen did mention this a few posts back, everything is uploaded now.
And I did ask Gloria, this site's Admin, how I could search for members by location (i.e. Australia) but the information of location isn't captured for everyone, each member has to update their profile with that sort of info and most haven't so I ended up with a very short list!
Good luck with everything,
Susie
#6245
Hi all, not new to the forum but a longterm member. My entire story is posted in a separate thread "The Golfnut Story" so if you have a rainy day and nothing to do, you might find that interesting.

I write here now to add some input to newer members.
I think took about 2 years, after my diagnosis some 10 years ago, to find my way forward. But since then, OT has not been the main focus area in my life. I recall and I respect that getting the diagnosis is a blow and it's easy to fall into a darker space - how on earth will I manage!!? I remember focusing on OT being chronic, no cure. But today and for many years now, OT is just another part of my life - like being a bit short, having curly hair and being nearsighted. Neither of the things can be changed really, but I just have to accept and live with it. Heels (alas not anymore),a good haircut and lenses improves the other things mentioned. Planning and learning to cope - helps with OT.

I do not want to come across as flippant about OT - not at all. It can be, and sometimes is, pure hell. But accepting, adapting around OT and then putting the darned thing on a shelf and focusing on more positive aspects of life does help I think. At least it has me.

Best wishes to all,
the Golfnut (still golfing by the way)
#6249
Susie wrote: Wed May 08, 2019 11:19 pm Hi Dr Lorimom,
I have to say it's heartbreaking to hear of people going for years with this OT thing, either undiagnosed or misunderstood by health professionals, and for you, a Doctor yourself, it must have been so terribly frustrating. But so pleased you found Dr Diego Torres-Russotto, he may not have told you but (I believe) he is the leading expert in OT and OT research in the USA. I am in Melbourne, Australia and last month we had our second Australian OT conference in Melbourne, it was fantastic, and Diego made a video presentation for us on OT and the latest research he is undertaking. But most of all the overwhelming value of just meeting others with OT, the instant bond and camaraderie was incredible. For those few days I didn't have to explain myself, or like you said hide anything, for once I could be normal. It was wonderful.
We do have a Facebook page that brought us all together, not sure if you are on FB, hopefully your sister may be, it was founded in Australia but there are members all over the world and lots in the USA. There is a document that lists what countries/cities/towns everyone lives in which may help to find someone near her, or just get on there and ask! We are a friendly and helpful bunch and you will get an instant reply! Just search for "Primary Orthostatic Tremor" or here is a link: https://www.facebook.com/groups/orthostatic.tremor/
And if you would like to see Diego's video presentation from the conference or any other info from it here is a link to the website: https://otaus.org/
Colleen did mention this a few posts back, everything is uploaded now.
And I did ask Gloria, this site's Admin, how I could search for members by location (i.e. Australia) but the information of location isn't captured for everyone, each member has to update their profile with that sort of info and most haven't so I ended up with a very short list!
Good luck with everything,
Susie
Hello, Susie, and thanks for your very prompt, kind and helpful reply. For a very long time I have been intending to take greater advantage of this website & forum, but haven't gotten around to it...I guess my sister's predicament was the spur I needed. I did go to the links you provided and will further investigate both, and will share with my sister. I had gone to see Dr. Diego Torres-Russotto because he is an expert in the field (he didn't mention that, himself) and had really wanted to attend the OT conference led by Dr. Diego Torres-Russotto when it was held in his home state of Nebraska (very near to where I live) a couple years ago; but I was out of the country at the time.
Now, I'm hoping that I've replied to your comments in a way that it will be seen by you (and anyone else who may be interested)...
#6266
Hi, my name is Penny and I live in Bristol, England. I've had symptoms for years, and there are very few physicians here who know about OT, so I spent a long time being investigated (obviously without any successful diagnosis) for all sorts of diseases and began to think I was some sort of hypochondriac. When I suddenly came across all the info about OT on the internet, I felt all my Christmases had come at once! I went to my doctor, who hadn't heard of it but agreed instantly that all my symptoms were accounted for, and is trying to find a specialist who may be able to supervise some medication. I am pharmacy-trained so she was prepared to give me some gabapentin to trial. Can anyone out there tell me if this or any other medication can be taken on an as required basis, or do I need to take it constantly? I'm retired so I don't necessarily need to be symptom-free every day (I've lived with this so long that I can just put up with it if not in public!).
#6267
I want to remind everyone that medications can have different names and labels, depending upon in what country you live. Even within the same country, a medication can have different names, depending upon what pharmaceutical company developed/manufactures the medication. Also, be aware of the side effects. Be sure to research the side effects and discuss them with your doctor before taking any new med. Also, be aware that many medications cannot be stopped abruptly. Some medications (and not just antidepressants) may have to be weaned in gradually decreasing dosages in order to be stopped safely. Severe side effects could occur if the weaning is not done correctly. (For example, stopping Gabapentin [Neurontin, FusePaq Fanatrex, Gabarone, Gralise - US labs] abruptly could cause serious seizures.) Your physician should be consulted before you discontinue any medication.
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