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

admin
Site Admin
Posts: 548
Joined: Fri Jan 16, 2004 5:25 pm

Re: New to the forum? post a quick introduction

Post by admin »

Click on the link below to read the report from the 2017 OT Meeting (thanks Pat for the great report!)

Click to read the UNMC Orthostatic Tremor Research and Meeting 2017 report
margie1627
Posts: 27
Joined: Tue Aug 03, 2010 10:06 am
Location: Eastham, MA. Cape Cod

Cape Cod

Post by margie1627 »

I'd love to know anyone on capered who has OT. :?:
margie1627
Posts: 27
Joined: Tue Aug 03, 2010 10:06 am
Location: Eastham, MA. Cape Cod

Re: New to the forum? post a quick introduction

Post by margie1627 »

Please change that to Cape Cod. Duh!
Soheila
Posts: 1
Joined: Sat Nov 18, 2017 6:22 pm

Re: New to the forum? post a quick introduction

Post by Soheila »

Hello, my name is Soheila. I am 63 years old. I live in San Diego, CA and I was diagnosed with OT about 3 years ago by my GP doctor who referred me to a nuralogist with expertise in Parkinson. Both my GP and nuralogist work at Scripps Clinic in La Jolla. The nuralogist did not do any tests, she said she does not need to. She just listened to my sympthoms and asked me to stand and saw/felt my tremor. I think first time I noticed my tremor was when I was in my 40's. Everytime I stood in the hallways at work to talk to co-workers I felt unsteady and thought I was going to fall. I had discussed this with my doctors at least 3 or 4 times previously but none was able to understand or explain what could be wrong! I have noticed that I have been getting worse last couple of years. I am still working but get very tired quickly and cannot do as much as I used to. Sometimes I get so exhusted that I do not want to leave the house and do anything! I don't know if the exhusion is related to OT or not! I also feel ver weak in my knees, again I don't know if all these are related. I used to think maybe my legs are weak and cannot bear my weight! One other issue I have is that I cannot hang my legs while sitting, I like to put them up. The nuralogist thinks I have a form of restless leg. I am just trying to put as much information as I can in case any of you have the same sympthoms .
Thank you for reading my post and listeneing to me.
Soheila
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 »

Hello Soheila : Thank you for posting your experience of being diagnosed with OT and your everyday life with your symptoms. OT is progressive and what you are describing as your lessening of your standing is to be expected with time. Gloria
Waltraud Behrend
Posts: 4
Joined: Sun Nov 19, 2017 5:02 pm

Re: New to the forum? post a quick introduction

Post by Waltraud Behrend »

Hello everybody!
To introduce myself, my name is Trudy, 72 years old, and I live in Australia.
Since 2011 (I was 66 years old) a Neurologist in Darwin find out, that I have the rare illness OT. It took me 2 years after not knowing, what is wrong in my body.
I would like to share my experiences and hope I can cope with this rare illness.
I am looking healthy and act so weird, always leaning on something or needing to sit down, when I go shopping or going somewhere else. The OT symptoms coming up, a weakness in my legs.
I saw 4 specialist in Australia, but nobody could resolve my problems with the right medications. I tried several tablets, but not successful. For a long time I take 1 Paxam 0.5mg a day (on the beginning I took 6 tablets a day, which made me drowsy), to relax, but it does not really help with my problems.
Gloria, I am happy, to find your web site. Perhaps one day somebody can help us, to find a new medication to fix the problems for me and the other OT Members.
This forum is very informativ and helpful for everybody. Thanks for this.
Trudy
PS: I would love to know somebody in the Cairns area, to exchange our experiences with the doctors and medications?
DancingThruLife
Posts: 8
Joined: Mon Oct 31, 2016 2:21 pm
Location: Massachusetts

Re: New to the forum? post a quick introduction

Post by DancingThruLife »

Hi Margie1627. My name is Pam. I live in Wakefield, MA, but am spending Thanksgiving in West Harwich. Where do you live on the Cape? I will be here until Sat, in case you see this message. I am so thankful for our OT community.
Hot Rod
Posts: 4
Joined: Sun Nov 26, 2017 10:40 pm

Re: New to the forum and need some answers

Post by Hot Rod »

Hello, I'm new to the forum. After one year and five doctors I was finally diagnosed with Orthostatic Tremors last May by a Movement Disorder Neurologist. I've felt like something was wrong for several years, before I retired, because i was having trouble standing for even short periods. I can walk miles and ride the stationary bike in the gym with no problem. I'm wondering if others are working in the gym on strengthening their leg muscles and if so, is this helping? I was taking propranolol and Zonisamide but the side effects were terrible. I was weak and tired. I could not finish my gym workout after working out for over 15 years. I was having trouble sleeping. And my heart rate was around 45. This past week, I went on Clonazepam and it seems to be working as good as the others without the side effects. Thoughts from others concerning these two medicines? How progressive is the disease? I seem to have the most trouble showering and standing in small spaces (like grocery checkout line). I have gotten a 3 legged cane that will fold down to a stool and I've used it successfully a few times. What does everyone do at the airport? Thanks for your help.
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 »

Hot Rod: OT is a progressive disorder we generally start in the beginning with OT standing still time as much as 15 minutes and as our OT symptoms progress in years our standing time will slowly lessen from those minutes to seconds , this is normal progression with OT. Walking at a steady pace without stopping is good exercise for leg muscles. Gym exersise is generally in a standing stop and go position and not doable with OT. As you proceed with your life with OT you will learn by yourself what is doable and what are your limitations. Please continue to read as much as you can thru out the website and you will find how your OT friends have learned coping skills that have helped them and have shared them.... perhaps as you learn your coping skills you will share yours too. Gloria
Birgitte
Posts: 1
Joined: Fri Sep 08, 2017 7:13 am
Location: Lyngby, Copenhagen, Denmark

Re: New to the forum? post a quick introduction

Post by Birgitte »

I have been a member of this group for 6 months, so an introduction is in order. I am 50 years old, live in Copenhagen area in Denmark, Europe.

I was ”officially” diagnosed this Tuesday by a hospital neurologist, specialising in motor disorders - she had no doubt about the OT diagnosis. She listened to my symptoms, watched me stand and felt my legs shake by putting her hand on them, made me perform some neurological tests.

I have had symptoms: difficulty standing ”on my own” at least since 2010, but it became worse about 3 years ago.
I have tried to google my symptoms numerous times, but no luck until I tried the term ”shaky legs” (and not ”shaking legs”) in June 2017: I found this website and recognized everything. I even measured my tremor hertz to 15,9 with the iSeismometer app (which unfortunately doesn’t work with my iPhone anymore). Since summer, I went through two other neurologists (the first one utterly disbelieving my story) until I was referred to the specialist at the hospital. She has treated two other people with OT in her career.
I am still waiting to have an EMG. I had an MRI scan - with no abnormalities.
Since October I have tried two drugs: Propranolol and Gabapentin. Propranolol gives me some relief, in that it makes me feel more ”normal”, less ”shaky” inside. The tremors are still there, however. But probably dampened a bit.

I also tried Gabapentin (3 x 300 mg) instead for about 3 weeks: It made me dizzy, tired as in made me fall asleep on the sofa in the evening and feel ”weird” around the eye muscles. A little effect on the tremors, not much. I missed the non-adrenaline effect of the Propranolol, so I stopped and went back on the Propranolol (2 x 40 mg a day).

Previous to my appointment, my “new” neurologist had consulted with the expert Marie Vidailhet from Salpêtriere Hospital, Paris. She informed me that in their opinion no medicine has any effect on OT. She was fine with the Propranolol, as I seem to get relief out of it, because it ”removes the adrenaline effect” from the OT picture.
I also have some relief from alcohol - 1-3 units. Again the doctor thinks it is because I ”care less” - but I definitely feel there is a concrete reduction in tremor amplitude.

I can still do most things, with adjustments. Mainly by leaning on things, touching things to provide alternative sensory input.
I have a lot of other health issues, I believe are somewhat related to the OT: For more than 2 years chronic insertional achilles tendinosis (pain in the back of the heel bone), tinnitus, many other pains in legs and feet, some numbness in feet, lower back pain.

But the biggest problem right now is how I feel about the whole ting, since I learned the truth: I am frequently stressed out and utterly devastated at the prospects of this disease getting worse and that I will become disabled to some extent. And that there is no real help - at least not from doctors.

My husband and children have been quite understanding.

I have had great insights and useful info from this website, thank you very much to the founder, Gloria, and all who generously share their experiences. I feel well equipped to talk to the doctors and without this info, I fear it would have taken much longer to arrive at this diagnosis.
Terry
Posts: 12
Joined: Wed Apr 02, 2014 10:46 pm
Location: Nundah, Brisbane, Queensland, Australia

Re: reply to Birgitte

Post by Terry »

I enjoyed reading about Birgitte's experience. I am currently trying to wean myself off Clonazepam and moving on to Gabapentin (while still taking Propranalol). I have not noticed any real improvement, but the side effects have been sore eyes, and a dull headache, especially when lying down, on the right hand frontal side of my brain. I feel that I am probably taking too many drugs as I also take Karvezide for heart problems. I can identify with the adrenaline effect, and I now never go shopping, and often experience concerns when going out in public. Going from a very active person who played golf, cycled, went to the gym, walked regularly to being a virtual hermit is quite depressing, but even more frustrating. My libido has taken a hammering as well.
I need a nap almost every day, but I seem to wake up about 4am each morning and stay awake for an hour or so. I suspect that I may end up going back to just taking Clonazepam and the beta-blocker. Probably need to take a higher dose of the Clonazepam as I am quite a big man (115kg of solid muscle! Not!)
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 »

Terry: There is no medication that will ease the symptoms of OT because it is a progressive neurological movement disorder.
The only thing that we can do is find helpful coping skills to ease the way , it will not stop the progress of OT which is a slow going progression over the years starting with 15 minutes of standing time and going down to seconds . Also if an OT person has other health issues and you do ,it will complicate the situation completely. Please discuss your situation with your neurologist who might be able to give you coping guidence with your situation. I was a golfer too . Gloria
adrianoconnor
Posts: 32
Joined: Sat Oct 22, 2011 8:53 am
Location: Ireland

Using an airport to your advantage

Post by adrianoconnor »

Hi HotRod. In answer to your question about airports. I always book assistance when I buy my ticket. I've been using wheelchair assistance for the last 3 years or so and it has made a massive difference. About 3 years ago I had a bad experience. I was traveling from England to Ireland (where I live) and I was forced to make my way with a folding stool through a hall with about 400 people waiting to get through security. By time I got to my turn I was exhausted. So from that day forth, I have always booked assistance. I think when you first use a wheelchair you feel like your sort of cheating because you know that you can walk. Once you get used to using the service, because you need to, you feel okay. It comes back to our continued problem. Unless you have OT no one knows what's wrong with you. Even when you explain, I don't think many people get the message. So HotRod, remember to book assistance along with your ticket.
Best wishes Adrian O'Connor, Ireland.
Mark
Posts: 16
Joined: Mon May 22, 2017 5:41 pm

Standing time progression, A to D on/off meds and other

Post by Mark »

Hi OTers,
As a new boy, of 71, what worries me, and many others I guess, is "what the future will bring"......
For me, although I may have had very minor symptoms for very many years, they only became an issue in the last two years and "unhelped" standing time without shakes/pain seems to be reducing noticeably now.
Could we do a straw poll?
Noticed something X years ago, (A) .Became an issue Y years ago ,(B). C is....how bad has it got out of ten now? (O is wheelchair needed rather than walking an 1 is zero standing time, 5 is five minutes etc and (D) is...Guess where you'll be in five years time 0,1, etc.
So...I am ....A 30, B 2, C 5 and D feels like it might be might be 1. No meds yet. Worst when standing on a chair with hands above head/DIY!
What are you?!
All the best, Mark
adrianoconnor
Posts: 32
Joined: Sat Oct 22, 2011 8:53 am
Location: Ireland

Re: New to the forum? post a quick introduction

Post by adrianoconnor »

Mark. I'm not sure why you want to do a strew poll. Most people who have OT seem to know what they can and cannot do.I'm not sure how much it helps to compare symptoms although I agree we should share the way in which we cope with our illness. The depressing truth is that OT just gets progressively worse. If you can still stand on a chair, I would say you have a long way to go to catch up with me. I can't stand on the floor without hanging on to something. Like you I don't take any medication although I've tried all sorts of treatments, homeopathy etc. If you come across anything that helps let me know. Sorry if I seem pessimistic .
Take care of yourself.
Regards
Adrian O'Connor, Ireland
Post Reply