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

Moderator: gloria

#6098
Hi Susie,
my name is Trudy, 72 years old and have OT since 6 years. I did read your message to Fred and I am interested to exchange thoughts and experiences about this rare condition, especially if there are possible new improvements to manage this dreadful illness. I am living in Cairns and would like to come to the Conference in April in Melbourne, to get an insight how others are coping with this rare disease . Please let me know, when and where this will happen. I am not using Facebook. If you like, I will send my email address to you.
Cheers Trudy
By Susie
#6102
Hi Fred, Gary and Trudy,

Gary, that's a different Facebook group, this one is called Primary Orthostatic Tremor, and it's for Orthostatic Tremor too, here is a link to them and their event page:

https://www.facebook.com/events/1736087623095271/

And Trudy, I know you're not on Facebook, I will send you a message in a day or two with an email address for one of the organisers so that you can get all the details and register if you can make it.

Although I live in Mornington, about 1.5 hour's drive from Melbourne, I have booked accommodation at the venue for 3 nights so that I can focus on the conference, have a place to rest if needed and spend time with others in the evenings, I am that keen!

Susie
#6104
I'm Theresaann from Massachusetts, USA. I'm new to the group as of a few months ago. Hello to all you OT people. I was diagnosed about two years ago by two separate neurologists from two different neurological medical groups. At first, I really thought it was my blood pressure (not a problem) or even my ears - vertigo - (went to an ENT for that). Of course, I now know it's real. I'm an RN and refuse to take any of the "suggested" medications since the side effects can be daunting (and just plain awful) and it is doubtful if they even work. (Some are addictive.) My neurologist agreed. At first I used a cane but that was useless because the problem is in both legs, not just one. My neurologist told me that there isn't much research into this "rare" condition, but the latest help is a Rollator - a walker with four wheels and a seat. Have seat will travel! It's great. (If you are of age, see if Medicare will pay for it. If not, avoid purchasing it from a medical supply company or a pharmacy if you can. I purchased one from Amazon (Approximately $60 and no shipping - that's about a third of the other suppliers.)They come in different weights so I purchased the lightest one available for the trunk of my car. I find that heat and humidity make the condition worse, as does fatigue.) I am very fortunate to have the best husband in the world who helps with everything possible. Now it has progressed to Orthostatic Tremor Plus, involving my hands and sometimes my arms. I avoid carrying anything hot in the fear that it could spill and burn me or others. But I stop and think that I am very blessed to have this and NOT Parkinson's. At least my symptoms stop when I sit down. Try not to be depressed or embarrassed. It's a condition, not a crime. Good luck. Let's all continue to communicate.
#6105
Welcome to our group. I am baby boomer who was diagnosed almost 22 yrs ago not too long after completing my RN. I worked in the profession for a short time but after a brief period of time found I could not continue. I’ve been retired 20 years and my OT has progressed since my initial diagnosis. I take 8 mg Clonazepam daily and sometimes I have good days but most times not so good. Currently I am changing neurologists since the one I have been seeing is going into semi- retirement and will just be doing research. I hope that the new doctor I use will have a different approach to treating this disease. I too have a rollator but since the tremors do not permit me to walk but a few paces at a time, I have an electric scooter which has been my saving grace. It’s called a Luggie which can be folded and put in our SUV or into the trunk of a car. Thankfully I too have been graced with a husband whom I could not get along without. I wish you well.
#6118
Hi All, My name is Ann & I am from the Australia POT Site. Anyone wanting to go to our Conference in April Please got to our Aussie site. You can join & all the information is on our Web-site.
#6119
Hi Ann
What is the address for the Australian POT website.? The link given
To Facebook event doesn’t work for those of us non Facebook users. So could you give the actual web address. Thanks
#6123
Hello fellow OT Forum Members. I have had Orthostatic Tremor for at least 6 years. It was conclusively diagnosed with an EMG when I got a third opinion this past May. I have all the classic symptoms. Standing in TSA lines while traveling has been a problem. Checking out at the supermarket is a problem. Oddly I could do active things like tennis doubles up until last May when I injured my right hip. If I was moving, they symptoms would go away. My hip replacement will be this September 18th. I take 3 Clonazepams (0.5mg) a day. Frankly I'm not sure what they are doing for me, but I don't seem to have any troublesome side effects. In June I got a DatScan which noted dopaminergic dysfunction - "mildly decreased activity in right side of putamen, compatible with Parkinson's disease." I don't appear to have any Parkinsonian type symptoms yet so I'm not sure what is going on. One specialist in a renowned hospital looked at my DatScan and immediately prescribed meds for Parkinson's along with a PT they use for Parkinson's called "Big Loud." My local neurologist told me not to take those meds and I can't do the PT because of my hip issue. My plan now is to get the hip replaced and do PT for that and then resume as much physical activity as possible. I kind of hate being in limbo like this, but that's my story.
#6124
Hi Everyone, I'm Jo from Calgary Alberta Canada.

I have been dealing with teuncal tremors only while standing making walking without a walker difficult for the past 2 years and have yet to receive a difinitive diagnosis. Most doctors don't have a clue, while others say it is Conversion Disorder/Functional Neurologic Disorder which has been disproved by multiple Mental Health Professionals. My Neurologist believes that it is Orthostatic Truncal Tremor but the Movement Disorder doctor said they if it we're, the tremor would go away when I walk. I still have the tremor but it is different as different muscles are in movement.

I am here to find common ground and sanity.

Thank you for allowing me to join!♥️
#6125
Jo, welcome to the group. It's somewhat calming to know that you are not alone with your condition. I hope you soon find a neurologist who can accurately diagnose your condition. Just knowing what it is helps mentally. At first (two years ago) I thought it was my imagination. One of the hardest things for me to accept is that, when I think I should be able to something that I used to do, I just can't do it anymore. Gone are the days of hiking all over the White Mountains (Appalachian Range) in New Hampshire (USA) with my husband. Gone are the days of taking 30+ mile bicycle rides with my husband. (I can ride a stationary bike, but am afraid of falling off a two-wheel bicycle. Hmmmm, as I write this I just thought: why not ride an adult tricycle?) Gone are the days when I was the "Energizer Rabbit" personified, with boundless energy. The fatigue and exhaustion is very hard to accept. I had to come to grips with the fact that THIS IS A CONDITION, NOT A CRIME. Most people just do not understand it. That is their problem, not mine. It drives me crazy when we go to a restaurant and the hostess/server wants to take my rollator away from me. (One wanted to put it in an emergency exit access! Brainless at the least!) I have solved that problem by asking for, depending upon how many diners in our group, a table where a chair can be removed for my walker. Then I sit in my walker if necessary, or just put the rollator walker into the space where the chair was removed. Good luck to you in finding a neurologist who can diagnose your condition. I hope you have access to a teaching hospital where the specialists would be more attuned to the condition. Also, I personally will not take any of the medications "available" due to the risks of daunting side affects. My neurologist agreed that, so far for what is available, nothing works to alleviate the tremors. Also, I have found that excessive heat makes the condition worse. (This summer in New England [USA], we have had over 23 days of temperatures in the mid- to high-90s F, with high humidity.) Non-sufferers fluff that off as unbelievable. Again, that's their credibility problem, not mine. Good luck to you. Keep communicating.
#6126
Hello Warren
Thank you for sharing your story. I hope your hip replacement on the 18th and follow up PT goes well. OT can make things more difficult and complex when we have multiple things going wrong. Not just the difficulty teasing out what is happening due to one condition but the tricky interactions between the conditions and the treatments and the anxiety that is created which in turn exacerbates the OT. In any case I wish you well for your recovery.
By MartinWarfel
#6153
Winston Churchill once referred to Russia as “a riddle, wrapped in a mystery, inside an enigma.” He could have very well been talking about OT. I have been symptomatic for OT for at least 5 years. My Primary Care Doctor belonged to one of those “concierge” practices which I paid additional money for on an annual basis. The promise of getting me connected with a center of excellence to diagnose my condition never materialized. I changed to a different Primary Care Doctor at the end of 2017 and was immediately connected with two Neurologist who felt I may have OT. Their diagnosis was confirmed this past May by highly regarded Neurologist at a renowned hospital in Philadelphia. I was dealing with the OT reasonably well as I am very active and played tennis doubles or did other exercise 5-6 days a week. When my legs would tremor, I opted to move instead of sitting down. Unfortunately, I had to get a hip replacement this past September. It really slowed me down to minimal amount of activity other than the PT I was doing for the hip replacement. 2 years ago, I had a hip replacement and recovered with few problems. This time I’m not sure things are going as well. While the hip replacement itself was successful, I feel a weakness, stiffness and rigidity in my legs that is concerning. I’m only two months into the new replacement so I am going to continue to do daily exercise and see my Neurologist in December to get her opinion on how thigs are going. Of greater concern to me was the results of a DatScan I had performed in June which did indicate some mild dopamine dysfunction. It could be that I have been unlucky enough to get PD on top of the OT. Has anyone experienced a similar combination of movement disorders?
#6169
Hello everyone my name is Steve.I have been through the Chicago Northwestern Suburban Advocate Medical system for years.Many doctor visits and physical therapy sessions.Also various drugs that didn't help.I left the Advocate Group and switched to Mercy Medical Health.I have just finished up again with numerous doctor vists,MRI's,therapy and drugs.Essential tremor was told to me at both medical groups but they would not get behind this diagnoses solidly.Back surgery was recommended to me after an MRI revealed stenosis in my low back.I don't believe this is my problem.Upon doing a search on Essential Tremor I discovered the 10 types of tremor.After reading them number 6 on the list describes me and my experience perfectly "Orthostatic Tremor".It describes me from the first page to the last page.I currenrly have an appointment with a movement disorder neurologist.I hope to find relief.
#6194
I have been reading posts for awhile now and have decided to register as I have some questions that you all might be able to help with.
My story....I'm 75, live in Sarasota, Fl and have always been very physcially active. In fact, my problems started out of the blue one day while standing waiting to go on the tennis court, my legs started shaking severely. I thought, well what is this? So I got on the court, started playing and the shaking calmed down. My friends insisted that I see my gp which I did. this precipitated a 5 month saga of mri's , xrays, emg, seeing 4 neurologists, changing my blood pressure meds and on and on. I know many of you went through the same things. All tests were normal.
Finally, the last neuro I saw spent a long time with me and asked many questions. When I told him (as I had told others) that I found relief from the tremors when I had a glass of wine, he said"bingo" (or the medical equivilent). You have OT.
Finally! I started on a low dose of Klonopin and it was a miracle. Not only did the trmors stop, but the vertigo and lightheadedness I have lived with for years, just went away. So I was doing well for awhile ..getting used to not playing tennis though and learning how to take rests. My symptoms have never been as severe as many of you have described, but I find I'm having more not so good days than good days.
I have pain in both legs and weakness/fatiuge The tremors are mainly just when I get up in the morning. The doctor wanted e to try other meds and I did, without success. Mysoline,sinement, gapaputin...all made me ill. I have sensitity to most drugs
I am wondering if I should increase the klonopn..right now, 1/2 pill in the am and full.05 in the evening.
Do any of you have pain in your legs? (I have disc issues, stenoisis, arthitis etc but all tests were negative so I don't
think nerves are involved.
I thank you for reading
(My name is Hester)
Also, I have trouble navigating the forum..how do you get replies to post when you see a question that might be answered? And how do you find the most recent posts?
Now if you could only teach me how to spell!
Thanks again,
Hester
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