The Orthostatic Tremor Forum (archive)

Hello,
I am new to the forum. I was diagnosed November 2015,although I am sure I have had OT for several years.
I am not on any meds as they did not help and I felt they were very sedative. I am trying to manage on my own.
I wondered if any one else gets exhausted after just things like housework, going up stairs, etc.?
Thanks
Newbie Bev

hi, my name is ivan, from NL, Canada, I am 65 & have ot, as well as et, for as long as I remember, tried a bunch of
meds. now I'm taking gabapentin 200 mg. propranolol 20 mg, twice a day.
I'm always looking to try different meds, just found online fr. California called tremadone, wonder if any one as tried it. I think I will, I'd try anything, this is an terrible condition.

Hi Bev: Welcome as a member of the OT FORUM where we work together to help find some of the unknowns of this disease. You say you were diagnosed in Nov.2015, how old were you when you first noticed your symptoms? Are you suspicious of anything in the history of your life that might have caused your OT? Yes, OT is very exhausting to all because it takes longer to accomplish everything in our average day !!!!!! Keep us posted and ask questions too! Gloria

Hi! Ivan and welcome to the Forum and your new group of friends. The 50's is the mean age of OT, plus or minus. Do you remember if the OT symptoms interfered with your type of work and how ?????? Also please tell us how Tremadone works out for you. Thanks, Gloria

Hi, I am a new member - Francesca from Essex, England.
I was diagnosed in 1998 when I saw Dr. Peter Bain in London. He suggested several pills and also aids
To help my mobility. All the medicines (one by one) have not helped me, although I do take Gabapentin because it has eased my back pain! I have been fortunate because the tremor has stayed on a manageable level up until now.
However I lost my husband 6 months ago and the tremor has reached another level. Everyone tells me it is the
stress of losing him. He had Parkinson's and I looked after him for over 4 years without the help of a carer - I
Wanted to do it but I can see now that it took its toll.
I feel angry that the tremor has 'reared up' because I had plans and felt I deserved to enjoy life now. Instead I
Am fearful that I won't be able or feel able to do much travelling etc. I don't have much stamina and I am nervous.
Apologies for sounding negative. I need to focus on what I can do and be thankful that my tremor is only from the waist down (so far). I love to paint and I can still do that, thank God! Thank you for listening!

Francesca: Good to have you here on the Forum where we try to find ways to cope with OT in our lives by sharing better understanding. I see you were diagnosed in 1998, how many years before that did you notice the symptoms of OT? Stress of any kind does exacerbate tremors but time increases it too. I also took care of my husband with cancer but did have Hospice helping me. Your interest in art and painting will be of great help to you as anything creative directs the brain away from the ban in our lives. Do you know of any art groups that you can join and bring a new set of friends into your life? Please keep us posted, Gloria

Hello! My symptoms started about 5 yrs ago (when I was 60) when I noticed that my legs were shaking when I stood still. The first neurologist never touched or even looked at my legs, but he gave me the term OT and told me I would soon be needing a wheelchair. He also gave me a prescription that was going to reduce the shaking. Well, he was the first of SEVEN neurologists I went to during the next 2 yrs, trying new medications and dosages, while the side effects from the variety of meds got worse and worse and were worse than dealing with the tremors alone. So I swore off doctors who did not know what they were talking about as well as all of the horrible side effects of the meds, and decided to live my life without any of their "help". I teamed up with some kinesiologists to increase the strength in my legs, and a Feldenkrais teacher to work on mindful small muscle movement practice, and while I shake I pretty much I have continued living my life, managing the fatigue with judicious activity planning and naps as necessary. I also use motorized carts in every store that has them. But I refuse to accept a picture of myself in a wheelchair.
But the tremors are getting worse in the past month, and now I'm pretty scared. What more can I do? How have you managed at this point? How can I continue living my life as normal as possible? Or do I just need to "get real"? Please let me know how YOU are managing with this problem. Please!
Gratefully,
Laura1951

Hi Laura

Welcome to the OT forum. Hopefully others will join in to welcome you as well and add their thoughts.

For all members new and old, below is a link to a new podcast(audio) interview of a very comprehensive review from Mayo Clinic of 184 OT patients.

A new audio Podcast from Neurology, the official Journal of the American Academy of Neurology -
Dr. Jeff Ratliff interviews Dr. Anhar Hassan of Mayo Clinic about her paper on the clinical, electrophysiologic and treatment findings in 184 patients with orthostatic tremor.
Orthostatic tremor - Clinical, electrophysiologic, and treatment findings in 184 patients

Link to Podcast - Mayo Clinic Neurology interview with Dr. Anhar Hassan

Laura: About 35 years ago, I began with all the symptoms of OT but clouding this situation was back pain from severe stenosis, numerous surgeries and the misdiagnosis of Parkinson's. One time I was given a list of well known neurologists in NY and not one diagnosed me but one of the neurologists suggested that I go to Columbia Presbyterian Movement Disorder Center. If you read "my experience page" on the website you will read how I was diagnosed there. So perhaps you should find and call a large medical insitution that has a Neurological Movement Disorder Center and ask to make an appointment with a DR. who knows about OT. In the meantime you will be able to read very comprehensive amounts of information about life and coping skills with OT from other OT friends here on the website. Hope some of this will be of help to you and please let us know, Gloria

Dear Gloria, I would like to add my "thank you" all of the others for creating this space for us to share. I have been to every major movement disorder clinics in SE MI and a few others doctors not affiliated and NONE of them knows OT. I will have to go to Cleveland Clinic or Mayo when/if I make the decision, but as long as I won't take any more drugs it really doesn't mean anything for me to go to another doctor, and I'm never going to take drugs again. I think I will learn what I need from this resource and the stories of others like me. Thank you, thank you, thank you!!

Hello everybody, my name is Joan and I have posted on this previously, but forgotten my login details! I am 82 years old, living on Anglesey, North Wales, United Kingdom and I started with symptoms of inability to stand for more than a few minutes, and the feeling of falling forwards. I was diagnosed with OT in 2001, but was experiencing symptoms about 4 years prior to this. These symptoms have progressively gotten worse as I have got older, to a point now where I can not stand at all unaided and my balanced has deteriorated dramatically. I am curious if there is anyone else around my area that has been diagnosed with OT, as I know it is very rare. All prescribed medication from my doctor have failed to show any improvements of my symptoms, and it has been suggested I undergo 'Deep Brain Stimulation Treatment'. I have obvious concerns about this procedure and really hope somebody on this forum can advise me as to what to do? Looking forward to any comments. Given my age, I am not great on computers, so if there is a delay I am waiting for my granddaughters help!!
Regards, Joan

Hello from Mississippi. I was diagnosed with OT in 2015 but have had symptoms since 2011. I am 45 years old. Just had another MRI done on the brain and spine. First one done on spine and the neurologist saw some stenosis. Been researching information about this. She is referring me to a Neurosurgeon. The only medication I take for the tremors is Clonanzapam (5mg x 3) @ bedtime. Just get irritated because I can't do things like I used to do.

Hi! Joan: Perhaps you should stay with your "obvious concerns" about DBS, that is my advise. We are close in age and I would not undertake the thought of DBS. I think you are doing just fine with the computer and hope to read more of your posts in the future. Gloria

Hello Everyone,

I was diagnosed with OT a year ago. I live in KY. After trying Primidone, Clonazepam, and Topiramate, I went to a second neurologist. This neurologist also diagnosed me with OT. He put me on Nerontin, which caused serious side effects. I'm wondering if there is anyone who has tried a barbiturate different than Primidone, and had some success? I'm 39, and began walking with a cane this month. I'm grateful that this site exists.

Kelly

Kelly: You were [ " diagnosed with OT a year ago"] but how long did you have symptoms before your diagnosis ? Trying out med's is generally an individual experience of what works' and what does not. However, there is nothing that makes the symptoms go away completely but just the easing and making some tolerable standing time. Walking at a good pace is the very best for keeping our improperly messaged leg muscles strong.

Interested in all your postings, Gloria