The Orthostatic Tremor Forum (archive)

Hi,
My name is Kim & I have just been diagnosed with Orthostatic Tremor and I feel completely alone on this journey!
I am English but live in Vancouver, Canada, my Doctor has never seen a case of OT before, so not much help there.
I would love to know if anyone knows someone also living in Vancouver with OT? I would love to be able to talk to someone going through the same thing locally.
Thank you
Kim

Hi! Kim and welcome to the website. One of the first things that will help you to find someone who lives near you is to go back to your PROFILE where you register and fill in your location , just Vancover,Canada is enough, by putting it in your post as you did will only show with this post however putting it in your Profile everytime you post again it will show with your name. Look at my name on the right hand side of this post, it show every time I post because it is in my Profile. Plus we have quite a number of OT registered members from Canada so another thing you can do is look at the black strip on the top of this page and click on MEMBERS this will take you to all our registered members and you can scan thru 55 pages of lists of members and possible find someone near you. Hope this helps , Gloria

Hi Kim, I sent you a message

Hi Kim
I replied to your email. Did it maybe go into spam ?

I was diagnosed in the fall of 2014 I did not start any medication till this summer as it got noticably worse.The medication is not working and I am starting with to miss work a bit.I was wondering what things people have tried to help cope with the symptoms.

iam sorry I posted earlier and forgot to mention I am from Saskatoon Saskatchewan and looking for other people in the area to talk to about OT

Hi Wayne

Thank you for registering and welcome to the forum. There are many OT friends that have joined from Canada and if you add your location to your profile this may help too. You can also click on SEARCH in the upper left of this page and search on specific medications that other members have have discussed.

Wishing you well, Gloria

Wayne: I see you posted that in the Fall of 2014 you were diagnosed with OT but was wondering how long before that you started to notice the symptoms of OT ? I hope you have found other medications that other members have discussed. I find that stress of any kind will exacerbate my OT symptoms and as I have gone thru life with OT there were so many things that were part of my normal days I no longer could do but in many cases I found different ways of doing things to cope ......... I was surprised how inventive I became...... Keep us posted, Gloria

Hi, Well I finally decided to enter the forum. I have had symptoms of orthostatic tremors for 10 years. I was diagnosed 3 years ago at Cleveland Clinic. The interesting thing is I did a lot of research to try and figure out what I had myself. It was because of forum's like this that I recognized my symptoms exactly. I didn't tell the doctor what I thought I had because I knew they would think impossible. I was again recently diagnosed in Cincinatti. This is after a 2 hour doctor appointment where he refused to believe the Cleveland Clinic even though they had used needle probes to confirm. He finally decided to have another physician do an EMG and it confirmed orthostatic tremors again. I still have other issues when I get sick. I am trying to find a physician that can help with this aspect. I get really fatigued, my legs feel heavy and my heart rate goes up. Doesn't happen a lot, but definitely causes significant problems

Hello Deb: I welcome you and pleased to hear that the Forum had helped you recognized exactly your symptoms before you went to a doctor to be diagnosed with OT. As a new registered member of our Forum you will find a new group of friends who really understand what it is like to live with OT...... it is a place where we learn from each other.... basically what is working for us and what does not. Hope you find a physician that can help you with the other physical problems that are troubling you. Keep us posted, Gloria

A new post has been created for the OT Awareness Month. This discussion contains the Press release which was emailed to forum members and other resources for creating awareness.

View discussion on OT Awareness Month

Hello! This is Peachy.Is there anyone in the state of Mississippi diagnosed with OT? Does anyone else with OT have tingling in feet and hands and vision problems? I have been taking Klonopin .5 (2 @ bedtime and my tremors are not as bad as they were. Just this past week I noticed them wanting to act up. I go back to my neurologist in September. She may add another tablet to see if it helps. I also feel more unsteadiness in my arms. Does anyone else have headaches with their OT? Had another MRI done and it was normal. God bless you all!

So the Primidone quit working and dystonia has now set in with my OT. I've lost most of my independence, I'm on a cocktail of primidone, diazapam, and anti-depressants. Having DBS surgery in October. Apparently, I should expect an 80% recovery.

Does anyone else have any experience with DBS implants to help with OT?

Thanks,

Rena

Rena: Sorry to hear that the Primidone quit working and that you are now having DBS surgery in October and hope you will have a quick recovery. PLEASE keep us posted on the outcome of your surgery. Wishing you well , Gloria

Hi All
My name is Sara and I am 52 yrs. Firstly I would like to extend a sincere thank you for this Website, for the first time in a long time I feel I am not going crazy. I was recently diagnosed with OT by my Neurologist using a stethoscope, although looking back I believe I have had OT for about 4 years as I have experienced bouts of these symptoms before. I also have Myoclonus Dystonia, diagnosed 2 years ago. I was prescribed Clonazepam but it immediately triggered depression so I had to stop taking the medication. My Neurologist doesn’t want to try any further medication due to possible side effects. She has recommended life style changes although didn’t offer suggestions. I am struggling with work. I am employed in administration and my workplace is very hectic and can be stressful. My Neurologist’s reply was that I should be able to cope making me feel very inadequate. I am considering cutting back hours to see if that helps. I was interested to read in a forum that tingling and numbness have been experienced by others with OT. I was told by my Neurologist that they were unrelated to. She also questioned that my symptoms vary in intensity is this something that others have experienced? I am concerned about progression of severity of symptoms. My Neurologist told me that it is a very slow progression and that indeed it could be due to age rather than the OT itself. This seems to differ from information I have read. I’m finding it all a bit confusing and would love to hear your opinions and advice. Sara