your Orthostatic Tremor Community

Welcome back to the Orthostatic Tremor forum!

New to the forum? post a quick introduction

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

Moderator: gloria

Re: New to the forum? post a quick introduction

Postby Marianne » Tue Apr 14, 2009 11:12 am

Welcome to our forum, Rose: I hope you continue to stay a part of our group. We are all more or less in the same position; some of us a little better off than others, but we use this forum to share our feelings, tell others about coping mechanisms we use that are helpful to us and many many other things. Keep us informed of how your treatment with Gabapentin goes. I'm sure there are many of us who take the same medication and your reaction to it would be of interest to them.

Again, welcome aboard!
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Re: New to the forum? post a quick introduction

Postby phoenix_rising » Wed Apr 29, 2009 11:14 am

Hi, I'm a newbie to the site, but not to orthostatic tremor. When it was first diagnosed, the neurologist told me it was a symptom, not a disorder (~1990). I'd had so much trauma to my spine (car accidents) since 1968 I was still using a wheelchair most of the time.

It took me a lot of work, but by 1994 I wasn't using a wheelchair except at airports (which I still do). It took belief that I could walk, and surrounding myself with people who held that same belief.

But now I am faced with lumbar spinal stenosis (LSS), and probable spinal surgery. I'm curious to know a great deal more about orthostatic tremor's causes, remedies, prognoses, and whether there's any chance that spinal surgery for LSS can help.

I look forward to chatting with all of you. (My passions are traveling, painting in multi-media, writing, and I'm a counselor for people in transition--go figure.)
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Re: New to the forum? post a quick introduction

Postby Marianne » Wed Apr 29, 2009 3:09 pm

Hello Phoenix rising!! Welcome to our forum! A very good thing for you to watch would be the video - I think it is still on the site - of Dr. Joseph Matsumura who was the invited speaker for a meeting held in Rochester, MN (I believe in spring, 2008 - correct me anyone, if I have the wrong date). He is a neurologist who gave a talk to several members of our "group" in layman terms which perfectly described the symptoms of orthostatic tremor, etc. Then, you might want to "google" orthostatic tremor on the computer. There is so much information that you can find on this subject. And if you really want to know the "nitty gritty", read some of the posts on this forum. They are from those of us who suffer from this condition. We talk about aids that can help you out when you are home, when you go out, medications that have helped (or not). I myself was diagnosed in 1997.

I'm sorry to hear about the spinal stenosis condition that you have developed. Please say in touch with all of us and let us know how you are doing.

Keep smiling,

Kaylie
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Re: New to the forum? post a quick introduction

Postby phoenix_rising » Wed Apr 29, 2009 7:59 pm

Thanks, Kaylie, for moderating and welcoming. It makes a tremendous difference to know this group exists for all of us. :P
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Re: New to the forum? post a quick introduction

Postby gloria » Thu Apr 30, 2009 4:32 pm

Welcome Phoenix: You found the right spot to find a group of OT friends who definitely understand what you are saying and share your feelings of living with this disorder. We do not know the cause of OT however, trauma is one of the things that has been named as the possible beginning of their OT symptoms however there is no medical common connecting of the dots to the cause for all of our diagnoses. Hopefully as we grow in numbers there will be more research. Misdiagnosing has been our enemy in many cases. I too was misdiagnosed with Parkinson’s. In your posting we have some other common happenings. For many years I had the symptoms of OT before I was diagnosed and I too suffered from lumbar spinal stenosis and had surgery in 1998. My surgeon at that time told me that he was 95 % certain that this surgery would also stop my nameless symptoms at the time. My surgery required instrumentation fixation to my spine. My back problems were helped however my OT symptoms remained undiagnosed for many years after that. I also have dabbled in painting. You seem to have multi-interests and hope that you will become a proactive advocate for our OT cause. We need to work together to spread awareness. Gloria
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Re: New to the forum? post a quick introduction

Postby OMGnotalone » Tue May 05, 2009 11:12 am

I'm a newbie. Gloria I can't thank you enough for setting up and monitoring this site. I found it in Jan 2009 and I started crying and crying because I had finally found that I wasn't alone. I kept saying "That's me!, That's me!" Thanks again. :D - Sylvia
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Re: New to the forum? post a quick introduction

Postby Marianne » Tue May 05, 2009 11:33 am

Welcome to our Forum Sylvia: No, you are not alone. As you read through the postings of our forum, you will see that there are many of us who suffer from this disorder. I found the site in 2005, having been diagnosed in 1997. It helps to know that we are not alone in this fight - that we are actually experiencing symptoms so similar to one another. It is our hope that you will find support, communicating with all of us. You will find many topics of interest and how many of us are attempting to cope and also spread awareness of this condition to others. I hope that you will become one of our advocates and attempt to educate those who who are not aware of our condition. One day, we hope that awareness of our condition will reach many more researchers of movement disorders and that they will start research to find help for all of us.

Keep smiling :)

Kaylie
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Re: New to the forum? post a quick introduction

Postby stella R » Tue May 05, 2009 2:54 pm

HI sylvia
welcome to our group.
We all seem to be in the same boat with this disease.
We try to find different way of doing things.
i like to make use of whatever i can find to help me keep doing
most of the things i did before i felt like this.
I went to my first concert this week.
i took my walker and it was all just fine.
I saw lots of people with weelchairs and walkers.
Now i wont be nervous about going again.
Keep smiling and again welcome.
stella
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Re: New to the forum? post a quick introduction

Postby trpprjh » Wed May 06, 2009 8:13 am

Hello,

My name is Debbie and I was diagnosed at the University of Florida Medical Clinic on May 4, 2009 (2 days ago) by the neurologist who actually gave this condition its name. I was diagnosed by Dr. Edward Valenstein. His collegue, Dr. Heilman, was the neurologist who discovered the disorder in 1984 and asked Dr. Valenstein to attach a name to it. I have suffered alone with this for about 10 years and I am 56 years old. I had been evaluated my many other docs and most thought I was faking it, making it up, or just plain crazy. How frustrating is that!! If you would like to research these docs, visit the University of Florida Mediacal Clinic (Shands) Neurology Dept. Since I live in GA, I will be able to follow up with a movement disorder specialists at Emory University in Atlanta. I am so happy to have found this website and to know that I am not alone.

Thanks.
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Re: New to the forum? post a quick introduction

Postby Marianne » Wed May 06, 2009 8:42 am

Welcome to our group Debbie! I hope you continue to keep us updated on your progress. Many of us share information on the meds we have been prescribed and since you were diagnosed by the docs who originally "discovered" this condition, we would all be interested (if you would like to share this information) as to whether these docs prescribed meds for you or gave you some coping mechanisms to deal with OT.

Again, welcome and we hope to hear from you soon.

Kaylie :)
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Re: New to the forum? post a quick introduction

Postby Betty » Wed May 06, 2009 9:19 am

Good morning Debbie,

I had written a loooooong post to you and was checking it for errors and LOST it!!!! :oops:

I won't try to recreate the whole thing now, but I just wanted to welcome you to the forum and let you know I was excited to read your post below, but unhappy to know you have OT.

I was diagnosed at the University of Florida Medical Clinic on May 4, 2009 (2 days ago) by the neurologist who actually gave this condition its name. I was diagnosed by Dr. Edward Valenstein. His collegue, Dr. Heilman, was the neurologist who discovered the disorder in 1984 and asked Dr. Valenstein to attach a name to it.

I live in Rockledge, FL on the Space Coast and close to the U of F and Shands. I wanted to ask how you were able to get an appointment with Dr. Valenstein? Did you require a referral or did you make your own appointment? I would be very interested in trying to have him evaluate me. I received my evaluation at Columbia Medical Center in NYC in 2003; and would like to be evulated again in Gainesville. I hope to hear from you.

I also hope you continue to post your experiences; you will find a lot of support here.

Betty 8)
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Re: New to the forum? post a quick introduction

Postby sequimbea » Tue Jun 02, 2009 5:01 pm

Hi! My name is Bea. For about three years I suffered from episodes where my legs would collapse and I would have to sit down before I fell down. My doctor blamed it on low blood pressure (which I do have 70/40 is farirly normal for me). But I was put on Mididrone and my BP increased, but the episodes continued. I think I went to every kind of specialist possible, but all the tests they did were normal, except for the BP. I also have have familial tremor since my early thirties (I am now 72).
I finally insisted that I wanted to go to a clinic in Scottsdale, Arizona and have a thorough workup. Instead I went to a neurologist in Seattle, Dr. Nago. He immediately diagnosed me as having OT and confirmed it with an EMG.
I am now on Mirapex .25 mg. twice daily, Clonazepam .5 mg. twice daily, and Primidone 50 mg. daily.
I find I am very sleepy and my thought process seems slow, But I have only had 2 mild episodes in the last three months.
I am planning on talking to my pharmacist and, if he advises changes, I will talk to Dr. Nago.
My tremor seems to be increasing in my hands.

Bea :?
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Re: New to the forum? post a quick introduction

Postby gill » Wed Jun 03, 2009 11:28 am

Hi to you all
i hope this is the best place to write this?

My name is Tracy and im posting this for my mum Gill who is 63 and was diagnosed with OT in feb this year. After reading all your posts in one sense she was lucky as she was diagnosed by the first consultant who saw her, we had rang an ambulance as we thought she had, had a stroke! I would love to know if any of you have got so bad that you have been unable to get out of bed? She has had lots of really bad episodes where she can't walk at all, as i write this she is in bed with severe shakes. Sometimes she cant talk properly and her memory is very bad, she would not be able to type this herself. She is very depressed. Do any of you have the feeling as though you shake inside? Her own doctor has never heard of OT so has no idea what to do. She is on clonazepam but they make her very tired, the neurologist has discussed other drugs but we have got to wait until october! they wont bring her appointment forward!! she is also a severe ashtmatic. Im writing this today to see if anyone suffers like her as she has fallen over twice today and its very upsetting, she tends to go to the left for some strange reason!
love to you all
from a frustrated daughter who would like to wave a magic wand! :?
One other thing is there any evidence that OT is hereditery?
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Re: New to the forum? post a quick introduction

Postby sequimbea » Wed Jun 03, 2009 3:16 pm

Hi, Tracy. I had one episode which lasted for about 12 hours in which I was unable to do more than crawl around. This was before my diagnosis. I called 911 and was taken to the hospital, where they gave me 5 bottles of IV fluid. They thought it was my low blood pressure and did more tests, sending me back home in 48 hours. Since I have been on the medication, I have not had anything like that!

Bea :shock:
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Re: New to the forum? post a quick introduction

Postby gill » Sat Jun 06, 2009 4:50 pm

Hi Bea thankyou for your reply, my mum is now in hospital it happened the same night i posted, she had a fit and has now been diagnosed with epilepsy and the neurologist not sure if linked with ot? she is doing really well, hope your ok? take care and thankyou again
Tracy
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