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Thanks for OT meeting

Posted: Thu May 01, 2008 11:25 am
by MMW
It was a joy to be a part of this great group this past weekend. I had been diagnosed 18 yrs. ago at Mayo clinic, Rochester.
My condition came on very suddenly - like turning on a light switch! It has progressed and the last 3 years have been constant
tremor while standing and walking slowly. I take Klonopin very minimally as medications do not agree with me! Have tried
natural remedies, to no avail.
Just being with this wonderful group this past weekend has renewed my hope, sharing so many similarities in what we experience.
Ah, just to find someone who understands what I'm feeling - it's great.
This is the 1st time I've posted and am happy to be a part of this unique and hopeful group.

Thank you, Gloria, for all you have done to begin and continue this communication. And thanks, Peggy, for feeding me the information
on the meeting and how to register. Great meeting you all.


Re: Thanks for OT meeting

Posted: Fri Jun 27, 2008 12:39 pm
by Joyce Rayburn
Dear MNW
I too am so glad to read of folks who understand what I am going through with orthostatic tremors.
For years it seemed I found no one who understood my frustrations. My doctor sent me to a hospital in Nashville, TN . That is where I was told this was the name for my problem.
I had been dealing with it for over 12 years. It seems to be getting worse. I am on Gabententin, 1200m a day. I want to think it is helping some. Tried other meds but could not take them.
Lets just know we take our life one day at a time and trust God to help us.
Joyce in TN.

Re: Thanks for OT meeting

Posted: Sat Jun 28, 2008 10:53 am
by Betty
Hi Joyce,

I, too, attended the meeting in Rochester; and as Myrna said, it was wonderful to be around so many others who have the same problems and experience the same things we who have OT experience. There was no need to explain WHY we couldn't stand, and WHY we all looked for a place to sit ~ top priority!

I was first diagnoised in 2001; but the neurologist couldn't give me any information regarding OT, just a name for the condition. I saw another neurologist in 2003 because I was getting worse. He also told me I have OT; but said they really didn't know what to do for it. I also tried a "laundry list" of drugs; but was unable to tolerate them.

That's when I got on my computer and started searching; I found Gloria's site and from there started an "online friendship" with Harriet, who lives in NY, (I now have many"friends" with whom I correspond and compare experiences). Harriet suggested I try to get an appointment with Dr. Seth Pullman at Columbia Presbyterian Medical Center. I did, he tested me and confirmed I definitely have OT. He gave me all my records; which have been helpful.

I take a very low dosage of Klonopin and it does seem to 'take the edge off'; but I can see the progression from when I first noticed symptoms of OT ~ approximately 12 years ago. It is important to try to keep a positive attitude and do as much as you can ~ while you can.

There are so many of us who are trying to get the word out to neurologists so they will know OT when they see it. This meeting in Rochester was a really BIG first step; and I feel we are on our way to helping the medical community better understand OT.

Had it not been for Gloria's website; many of us would still be searching. Peggy who found Gloria's site and put together the meeting in Rochester; to both you ladies ~ from the bottom of my heart ~ THANK YOU!

So Myrna, I look forward to seeing you again at our next meeting; and to you Joyce, we will all look forward to meeting you in the future.

Just remember, you have many friends here on this site who will try to help you, if you have questions.

Betty 8)

Re: Thanks for OT meeting

Posted: Sun Jun 29, 2008 2:36 pm
by MMW
Hi Joyce,
It was so good to read your post and glad that hearing of our experiences with OT have been a help to you. It's a positive feeling when one can finally talk to someone else and then be understood about what this "trembling" is all about! I find that no one else can really fathom what we go through everyday - it's probably too much to think that someone, even family members, can understand it to any degree. And I don't expect everyone to, as I do not know either just what they may be going through in any of their health issues. So this place is our space to talk about it and encourage each other, especially when we need some lifting up.

I am the most comfortable in my own home - and any new place or happening is very difficult to maneuver through it. But I do try and go places as much as I can handle. And I do know my body very well and what it can take. Planning ahead for each new event is important for me. Having it for over 18 years has prepared me for a very different life than what I had before. Mine has really increased in constant tremors while standing and walking slowly in the last 3 years.

I have also wondered if it has affected many other's sleep patterns? My nights are quite difficult with much interrupted sleep and a very uneasy feeling when I wake early morning after dreaming. This very foggy, uneasy feeling lasts for about an hour after I get up. Sometimes I think it is my Klonopin since I've been on it for so many years. Yet, I only take a little during the day. And this sleeplesness has only developed the last 3 years - about the time my condition worsened. So it is a ? mark for me. Thanks, Betty, for your kind words. Loved meeting you, too. Keep in touch.

Re: Thanks for OT meeting

Posted: Thu Jul 10, 2008 1:22 am
by magnbud
Myrna, I have OT and have posted on this site before. I also have developed sleep problems in the past year or so. I was diagnosed in Houston about six years ago, and I take Neurontin, but took Klonipin for a few years. I have disturbing dreams and find that they are hard to shake when I first wake up. I have never had this before. I am otherwise healthy. I have read about the wonderful meeting that was held in Minn. about OT. I would love to attend if there is one next year. Do you know if a date has been set? We need to encourage one another... no one else truly understands. Maggie

Re: Thanks for OT meeting

Posted: Sat Jul 12, 2008 12:42 pm
by MMW
Hi Maggie

Thanks for sharing about your sleep problems, too. Anything we have in common and can share is a plus, to the person, and also for ongoing research as it develops in the future. There is a lot of unknown in our condition. The more we speak out through this website and any other means will be helpful to us all. I am hoping for something to develop in research. That does give me hope, especially when I go through this day to day. I try to focus on the things I still can do - and that helps me a day at a time.

About a future meeting - a date has not been set for the next one. But everyone attending, I believe, was anxious to keep this going. And new groups from different parts of the country and world were encouraged to form. Am sure there will be a post whenever another meeting is scheduled.

So glad you wrote. It made my day.