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[BonitaG]

Hi Everyone,
I cant say I was ever really diagnosed with OT. My daughter researched my symptoms on the computer and we found your site, I then took it into my neurologist. Told him this is how I feel, I have had many tests on my legs all turned out negative. I blamed taking Statins for 30 years ( as this was the only meds, I ever took). I Have had this problem with the shaking about 10 years. When trying to explain to people how difficult it is to even change a light bulb it sounds silly. I used to love to go shopping, but now I can only go if they offer a cart that I can push. I have a developed a bad back over the years & just recently the doctor gave me an epidural for my back. I found that helped the shaking of my legs a little. For years I have taken some meds that actually I requested after reading this forum, Gabapentin 300mg & Topiramate 100mg. I do water exercises 5 days a week, plus walk our little dog 3 times a day so try to keep active.
Thank you for this forum Gloria, it is good to know i am not alone & have finally found out what is wrong with me, now if there was only a treatment!! . BonitaG

[gloria]

Hi! Bonita: I'm happy you joined the Forum because working together knowing we are not alone helps quite a bit. You are describing the symptoms of OT and you say "[I have had many tests on my legs all turned out negative]" were any of the tests an EMG? We are having a meeting March 11,2016 in Houston Texas with Dr. Jankovic and I hope you will join us there. Gloria

[Tigermoth]

see below

[Tigermoth]

Hello there I live in London, England, and was told last week that I have OT. In this early stage of diagnosis, I'm finding this period very VERY hard to cope with indeed. (I've read a lot of your very kindly shared information about what fellow sufferers have to endure.) I think that it is particularly hard because there are no support networks like for cancer (in the UK anyway).
As I'm sure you can all remember when you first had a diagnosis, I'm reeling with the news rather than fixating on technical details.
TM

[Emmone]

Hi Tigermoth

I also live in the UK, there is a group of Primary Orthostatic Tremor sufferers associated with the National tremor Foundation. If you wish to PM (Private Message) me I can send you the details.

I, like you, was only diagnosed this year and have found this and other sites invaluable. The best part is knowing you are not alone, there are others who know exactly how you feel.

Emmone

[gloria]

Emmone, Tigermoth : I'm pleased the two of you had left your LOCATION on your PROFILE when you both joined the website and therefore where able to make a possible connection with other OT people thus lessening the feeling of loneliness that is part of OT. I suggest that everyone who has registered but forgot to leave their LOCATION in their PROFILE will do so.......it is an amazing feeling to meet with other OT'ers thus removing the loneiness that is part of the "baggage" of living with it. Gloria

[Comox]

I have recently been diagnosed at the UBC Movement disorder clinic after many appts with neurologists. It's nice to have the diagnosis but now the battle begins. I have been shaking for about ten years but managed to hide it for probably the first five.....then people started to mention it . I think it was because the shaking began to occur more quickly.....I used to be able to stand for quite a long time before the shaking began. I now find I shake almost immediately upon standing.
I have just tried three months of Levodopa, with no success. I am now on Gabapentin and after only a few days I think I am improving.....I still "vibrate" but it is not as noticeable to others.
I was also prescribed clonazepam .25mg....take 1-4 a night. I take two because I am wary of this drug. I don't know if it helps, perhaps I should take more.
I have a portable stool,that looks like a cane, that I use whenever I know I have to stand, when I go out. It's not very ladylike and it does draw attention but it works!!
I use stools at home to do daily tasks and have had to adjust to the fact that everything takes longer to do.....that's been difficult as I was always a multi-tasker.
When I get down, and I do feel sorry for myself at times, I take solace in the fact that this is basically a "nuisance" disease and not life-threatening like Parkinson's or Multiple Sympton Atrophy...two earlier diagnoses. In saying that I certainly hope that I can find something that will rid me of this very annoying "nuisance".

[admin]

I wish that I was writing about a ground breaking cure, a pill, or a new treatment, but even the smallest steps are steps in the right direction. When you don't know which path to take, you can't be afraid of making mistakes, you just need to plow forward until a direction becomes clear.

But let me say this up front - whatever the illness, whether it be OT and/or something else, not being healthy is $*&@# !

It may not feel like things are getting better, and certainly the pace of progress is not fast. But more information, research and a community exists today where it didn't 15 years ago. Yes, you have made a difference in someones life.

This rare little group continues to help grow awareness of OT in public discussions, support others with OT, organized meetings, family members and friends help. The effects and understanding of OT continues to evolve with every discussion. And you've been instrumental in starting 2 research funds dedicated to OT... this is a huge accomplishment with so few people, and limited resources.

Below are links to the NORD OT research that will start soon and to an update on the UNMC OT research. The results may reveal a path to take, or one to avoid. In either case, it may yield new information to build upon. The funds are restricted to Orthostatic Tremor and continue to grow with your help. When goals are achieved the task of looking for new research will begin.

Click to read the NORD OT research update
(The NORD research may still be accepting participants, information is available from the link above)

Click to read the UNMC OT research update

Click for more information about the NORD OT research and the UNMC OT research funds see link below:

(all donations go directly to the NORD and UNMC OT research funds and are independent of the OT website)

Be proud of being part of change, and striving to make the OT world better.

———

[renaely]

Sooo, the first part of my DBS surgery was supposed to occur on the 28th of October. I was taken off Primidone, Klonopin, and a bunch of other drugs that turned me into a zombie so it wouldn't interfere. Only writing now as I am sooo incredibly pissed off still because the surgeon rescheduled it minutes before being rolled into the operating room.

I am currently Rx drug free and using Valerian Root to "control" my tremor which is iffy at best, but better than nothing since the narcissistic jerk has yet to give me a new date. The tremor has become so bad I can only stand for about a minute, I swear it's spreading through my entire body. Wish I could report I'd had the surgery and was up and showing noticeable improvement (at least on my right side) to give others hope...I'm afraid we'll have to wait until next year to find out whether it works. By that time the more non-invasive targeted MRI procedure will be available...lol

[gloria]

Rena: What was the reason the surgeon gave you to reschedule minutes before your surgery ??????? How was it justified to do so ? Gloria

[renaely]

Not a great one. I'd been hanging a picture a couple weeks before, the corner caught my arm and tore it open pretty good. I'd already had it treated, had been on 10 days of antibiotic, it was healing nicely. He was also upset because (as I told his surgical nurse 2 weeks prior), my sugar would have to be checked often while I was under since they made me fast. So he cancelled, forced me to go back to endo and wait for the scab to completely heal.

[gloria]

Rena: I'm so sorry that you are going thru all of this. You must be a strong person however undergoing any kind of surgery there is always much stress so the patient should be given complete support and understanding from their doctor, not aggrevation. I wish you well and that your situation has a better ending. Gloria

[admin]

Wishing everyone all the best for the holidays and the New Year!

[LMP1]

And the very best wishes for the Festive Season to you, Jeff, and to Gloria, and your families, and to all the OT family, and may 2016 be a stress free and wobble free year - wishful thinking, I know, but we can always dream!!

From a very warm Blenheim, New Zealand (almost too warm - 27C today and 36C tomorrow).
Kind regards, Lynette

[gloria]

I wish to thank all OT friends that have gathered together on the website for their support and discussions that have helped me and others living with this rare disorder. I look forward to seeing some of you at the meeting in Houston.
Wishing everyone the best for a happy & stress free holiday and New Year . Gloria