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

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Ann Dodd
Posts: 14
Joined: Sun Jun 28, 2009 12:27 am

Re: New to the forum? post a quick introduction

Post by Ann Dodd »

Ann- Queensland- Australia.

At long last I have joined and feel I am with friends.
I have written to Gloria before so she knows about me. I am 65 years old and have had OT for at least 3 years(possibly longer)
I first noticed it when I found it hard to step down a step and I had giddy spells.

The shakes started in my legs and I used an umbrella to steady myself as I was embarassed going to work. Catching a train was a panic as my leg would start shaking and I couldn,t step off. Eventually I would ask someone to help me get on the train and after the rest I would be fine to get off.
I was told by heaps ps specialists that it was all in my mind and my legs were fine (cost of fortune)
My lady GP would not stand for it and sent me to a Neuroligist who was wonderful and at long last I new I has OT.
I am now retired,

I was on Clonazepan 2 at night and was fine with the walking for a while but I was always tired and severely depressed.
Walking got worse and it was increased to 3. I slept for 11-13 hours a night and also slept during the day.
Changed medication and I am now taking Neurontin300mg - 3 -1 morning 1lunch and 1 at night and so far have been much better. The shaking in my legs seem to be lesser then before(left leg is shorter than the right one. ) This could cause a feeling a unsteadyness. Also go to a balancing clinic which seems to help.

Going to a Neurosurgeon (one of the best in Australia) for a second opinion. (I will not have any OP on my brain)
Will let you know how it goes (August) Take care, Ann
Cheryl Schaefer
Posts: 1
Joined: Mon Jun 29, 2009 6:37 pm

Re: New to the forum? post a quick introduction

Post by Cheryl Schaefer »

Hi,
My name is Cheryl Schaefer, and I just joined this forum. I am 62 years young. I have not been diagnosed with OT yet, but I am pretty sure this is what I have. Sometimes it seems to be getting worse. Whenever I have to stand for a long period of time, my right leg will start trembling. I notice it when I am doing dishes, standing in Church, in a check out line, or even talking. I also notice it in the shower. Last year, I had a very bad episode in the shower. When I mentioned it to my Dr. he had me go for an EEG, which came back mildly abnormal. He mentioned that 60-70% of his patients come back with mild abnormal results. He mentioned maybe about going to see a neurologist eventually, but I figured he would tell me it was nothing. I take various medications. One is for Anxiety. At one time, my Psychiatrist, who I see about my Anxiety had me on Neurontin, because of trembling in my right hand. I went off of it, because of how it made me feel. Later, he put me on another medication, but I also went off of that. For the past few months, though, the trembling in my leg seems to be getting worse. I am already taking quite a few medications(high blood pressure, thyroid, IBS, anxiety and cholesterol), but I suppose I will have to mention how the trembling seems to begetting worse. Maybe, if I have to take medication for OT(if that is what I have), then I will not have to take anxiety medication.
Is there anyone else who also experiences trembling in their hands, and, sometimes it feels like my insides are shaking? Thank you for listening. I am so glad that my husband found this site for me. Take Care
Marianne
Posts: 98
Joined: Thu May 19, 2005 7:59 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by Marianne »

Welcome to our forum Cheryl! It certainly is comforting to be able to "speak" with others who have the same debilitating symptoms. If you read our postings, you will see that most of us are under the care of a neurologist; especially those doctors who are movement disorder specialists. You will also notice that we all take different medications. We share this information and many other things like aids that might help us at home and when we are out and about. Please take the time to read them. I would also recommend that you view the video of Dr. Joseph Matsumoto. This video was made when several members of this forum held a meeting in Rochester Minnesota at the Mayo Clinic. The video is very informative and Dr. Matsumoto describes Primary Orthostatic tremor in layman's terms.

I hope you choose to share your thoughts and ideas with us.
gill
Posts: 4
Joined: Thu Apr 02, 2009 11:35 am
Location: stockport, cheshire united kingdom

Re: New to the forum? post a quick introduction

Post by gill »

Hi Cheryl, ive just read your post and i cant believe how similar your symptoms are to my mum who was diagnosed with OT in feb, you sound very similar, she also describes the feeling of shaking inside and just like you has episodes when standing or in the shower, she is now going for tests at neurology department as an in patient as her own neurologist is bermused by the condition, she now shakes all over but worse when standing and not as bad when lay down, like you she was treated for anxiety, but now doesnt take medication for that. Im keeping an eye on this site for more info and my mum isnt very good at knowing what to put so leaves it up to me. Good luck and take care and i hope you get a diagnosis soon Tracy
Jitterbug
Posts: 9
Joined: Tue Jul 21, 2009 4:07 pm

Re: New to the forum? post a quick introduction

Post by Jitterbug »

Jitterbug just joined the Forum but has suffered as long as many others. I am learning to cope, there are worse, much worse things to endure but I must agree this is an awkward complaint. I just got back to playing Golf and would appreciate any tips from fellow sufferers as to how to cope with the problems of standing still while others are driving, pitching or putting. I have learned to cope with coin-jingling, inane chatter, ball dropping and other distractions while I am playing but am running out of ideas about my necessity to pace about like a caged tiger while waiting for others to get about their business.
One consolation for OT sufferers; we have a fine get-out for not attending Cocktail Parties!
Sit down for your rights!
Jitterbug
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Jitterbug: Unfortunately all things that we try to participate in socially require a lot of explaining of what our limitations are and the need to ask for help in accommodating us to make it doable. Perhaps by letting them putt out first and you sit in the cart until they finish and then you walk to the green and putt. I believe in hanging on to all the activities that have given you pleasure in the past and be has inventive as possible to do so. Time will tell you when it is not as important to participate anymore. It was good to hear from you and we welcome you as one of our new friends and look forward to more of your postings. Gloria
marian
Posts: 9
Joined: Fri Jul 24, 2009 8:47 pm

Re: New to the forum? post a quick introduction

Post by marian »

My name is Bea, and I live about 2 hours west of Seattle, WA. I was diagnosed with POT by a neurologist about 5 months ago, after 3 years of testing for anything which would explain my symptoms! It was a relief to at least have a name for it.
I am currently taking Primidone 50 mg. once daily, Clonazepazepam .5 mg. twice daily, and Mirapex .25 mg. twice daily. The side effects I notice are sleepiness, vivid dreams, and an increase in my essential tremor. I'll be going back to see my neurologist soon. Other than the side effects, I rarely have to sit down RIGHT NOW, before I fall, which is a miracle!
I am 73 years young, and retired.

Bea
Marianne
Posts: 98
Joined: Thu May 19, 2005 7:59 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by Marianne »

Welcome to our forum Bea. As you will see from the many postings from others with POT, we are all in different stages of this condition and you will find that we all take a myriad of medications. This forum allows us to share this information and other helpful hints which help us in our daily lives. I myself have lived with this debilitating condition now since 1996, but I still manage to get around pretty well. All of us, at some point have to sit; some of us have the ability to stand longer than others. I hope you continue to stay in touch and visit our forum to share your thoughts and ideas.
marian
Posts: 9
Joined: Fri Jul 24, 2009 8:47 pm

Re: New to the forum? post a quick introduction

Post by marian »

My first introduction must have disappeared into cyberspace! so I'll just do a quick recap. I live near Seattle, WA, am 73 years young, and gave had OT for at least three years, although I wasn't diagnosed antil 5 months ago. I have noticed a vast improvement on Miraplex, Clonazepam, and Primindone. Hope I can at least keep the symptoms under better control.

Bea
lizzie
Posts: 1
Joined: Tue Aug 04, 2009 2:58 pm

Re: New to the forum? post a quick introduction

Post by lizzie »

Hi everyone! Well, my official diagnosis according to a couple neurologists is Essential tremor, not one of them even metioned the word OT. In fact, they tend to skip right over my mention of that symptom and focus entirely on my hand tremors. When I spoke with one expert on ET, she said that leg tremors are not part of that disorder.I have read so many contradictory and conflicting articles about ET and its relationship with OT, they just add to my questions. Frankly, the lack of info about OT is just startling. This seems to be one of the only sources of significant information on the subject that exsist.I have hand tremors and my torso tremors when I am in the sitting position, which can be bothersome. But, my leg tremors are absolutely the most disruptive symptom. This has all been a slow progression for me, beginning about 3 years ago and gradually worsening untill I could no longer deny that somthing was wrong. I still walk normally, allthough I have noticed some slight balance issues. But, the day to day challenges when doing anything that requires standing in one place( dishes, laundry, showering, my former proffession of massage therapy) can be daunting. The diagnosis process has been emotionally exhausting. I have had doctors tell me they suspect everything from MS to cancer to thyroid disfunction. Then when they can not pin point what is wrong and all the tests come back inconclusive, they tell me to take an anti deppressent or just act like I am a hypochodraic.
I am still young(33) and I am raising my 4 young children. I have decided to switch careers and I am about to return to college in the fall. I have a lot of questions, some of which, may not have answers due to lack of knowlege or understanding of this disease. But, it is great to find a resource and a group of people who understand what I am dealing with. One of my many questions are: Is OT a progressive disease?
Jitterbug
Posts: 9
Joined: Tue Jul 21, 2009 4:07 pm

Re: New to the forum? post a quick introduction

Post by Jitterbug »

[quote="gloria"]Jitterbug: Unfortunately all things that we try to participate in socially require a lot of explaining of what our limitations are and the need to ask for help in accommodating us to make it doable. Perhaps by letting them putt out first and you sit in the cart until they finish and then you walk to the green and putt. I believe in hanging on to all the activities that have given you pleasure in the past and be has inventive as possible to do so. Time will tell you when it is not as important to participate anymore. It was good to hear from you and we welcome you as one of our new friends and look forward to more of your postings. Gloria[/quote]

Thanks, Gloria. You sure put a lotta effort into maintaining the momentum on this website. As I read the various comments I am impressed by the general good humour among our fellow sufferers. Someone asked if the condition was related to Epilepsy. I am unsure of any direct connection apart from the fact that the Medics feed us the same drugs. How many people in the World have been diagnosed with OT? Most of the postings on your website are from North America but, I suspect, that merely reflects the availability of IT technology as well as a few informed Neurologists. Keep up the good work!
Abinadi
Posts: 53
Joined: Thu Feb 05, 2004 3:36 am
Location: Volcán, Chiriqui, Panama (Central America)

Re: New to the forum? post a quick introduction

Post by Abinadi »

[quote="lizzie"] One of my many questions are: Is OT a progressive disease?[/quote]

The short answer from my own experience is yes.

But the progression seems to be very slow. The other issue in my mind is what does the end of this disorder look like - that is, end of life? The information available (at least to me) on this aspect is anecdotal. No one of our acquaintance in this group seems to know of anyone who had it for years and then died. All of us here seem to fall into a time frame of something like a few months to about 20 years but no reports of any connection to termination of life.

At this point it does not seem to be life threatening. Just a major annoyance and inconvenience and embarrassing. Which along with the seemingly limited number of sufferers seems to have a lot to do with why it has not attracted much in the way of research money, time or attention.

Does anyone here know of anyone who had POT for 15+ years and then died while still suffering its effects? Does anyone really know what the final year(s) was like? Was it just more of the same? Muscle weakness, unsteadiness, balance issues but not life shortening. I don't know if any of us really know.

Rich
sequimbea
Posts: 8
Joined: Sun Mar 08, 2009 7:15 pm
Location: Sequim, WA

Re: New to the forum? post a quick introduction

Post by sequimbea »

[quote="marian"]My name is Bea, and I live about 2 hours west of Seattle, WA. I was diagnosed with POT by a neurologist about 5 months ago, after 3 years of testing for anything which would explain my symptoms! It was a relief to at least have a name for it.
I am currently taking Primidone 50 mg. once daily, Clonazepazepam .5 mg. twice daily, and Mirapex .25 mg. twice daily. The side effects I notice are sleepiness, vivid dreams, and an increase in my essential tremor. I'll be going back to see my neurologist soon. Other than the side effects, I rarely have to sit down RIGHT NOW, before I fall, which is a miracle!
I am 73 years young, and retired.

Bea[/quote]
Yesterday I went to Seattle for my 6 mos. checkup. I am taking the Clonazepam .25 mg. four times daily now to see if I am not so sleepy on that regime. I'm having trouble with my gait and my balance, so am starting physio day after tomorrow. I'm very unsure of myself when walking down hills or stairs. Also tend to cross my feet when I walk.

Bea
Zasm88
Posts: 3
Joined: Sun Aug 16, 2009 1:40 pm

Re: New to the forum? post a quick introduction

Post by Zasm88 »

Intro to group

Hello, all--I live in Seattle, and have been coping with what we now know is OT for since 1970. I used a wheelchair for a good portion of that time, but since 1991 I only use a wheelchair when I'm traveling (great way to get through security lines in the airport), and in museums and places where I might like to "stand" and look at something, but have nothing to lean on. Most people haven't a clue I am disabled until I've been standing long enough for the bobble-doll effect to start, and then I can't even walk (takes 3-10 minutes, depending on my ability to "dance" in place without anyone noticing).

I have been in physical therapy with all sorts of therapists, but now have an excellent one, as well as a physiologist, and a neurologist (about to meet him), and a general internal med doctor managing the overall treatment. I am 71, but continue to do things I love, like giving talks on cruise ships (about 3 months of the year!) and elsewhere. Of course, I give the talks perched on a stool, or sitting in a chair, but since I've been doing this forever, it doesn't seem to matter to anyone.

The best coping skill, I have learned, is doing things for other people, taking myself out beyond whatover is going wrong at the moment in my body (and life), so I have returned to school (on-line). I am fascinated by research, and if there is any way I can help with OT research, I want to be doing that (not just by being a guinea pig--I've had plenty of that, for things like fibromyalgia, chronic fatigue, etc.). I consider myself very healthy right now, with most of the diagnoses that have been thrown on me things of the past. But, naturally, I have osteoarthritis, degenerative disc disease, spinal stenosis, etc., what I call WATS (wear and tear syndrome).
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Welcome, Zasm88:
I’m very impressed with your coping skills and the common sense approach to life. Whining is not a good option, unfortunately many take that route and that is counterproductive to living with OT, it then controls you! In your case you are controlling and adapting. Is there a special topic that you present in your talks on cruise ships?
I’m so happy to hear that you are interested in research and we must promote the need for it. Have you looked at the tape presented by Dr. Russotto. He is very interested in OT and is now with the staff of the neurological movement disorder department at the University of Nebraska. Also in’ 08 we had a meeting with Dr. Matsumoto from the Mayo Clinic in Rochester MN, he is very interested in OT as well. Also now we all have a chance to participate in research, last November we established a “restricted research fund” for OT through NORD. This is posted on the web site forum if you haven’t already been there.
Is there some way you could help spread awareness about OT? We are all trying to work together to stop the misdiagnosing and lack of diagnosing of OT in general.
As a personal note I have the WATS too, Thanks for posting, Gloria
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