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

Joyebelle
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Joined: Fri Nov 25, 2016 8:06 pm

Re: New to the forum? post a quick introduction

Post by Joyebelle »

Does anyone else find that sun glare makes vertigo/ dizziness worse? I can walk quite easily inside or shaded areas, but if I go out into sunshine, the ground " jumps" around and I lose balance and depth perception. I'm nearly needing cataract surgery and wondering if that will help.
gloria
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Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Joyebelle: I think you are right it could be time to discuss this to your Ophthalmologist and perhaps you are "nearly ready for cataract surgery". Please keep us posted how you are doing . Gloria
admin
Site Admin
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Re: New to the forum? post a quick introduction

Post by admin »

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Jwpulliam
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Joined: Mon Dec 26, 2016 11:47 pm

Re: New to the forum? post a quick introduction

Post by Jwpulliam »

My name is Jack I have struggled with POT for 15 years. It has progressively gotten worse. I see a neurologist every 6 months. I take Gabapentin 1600 mg per day and Clonazepam 0.5 mg twice a day. It helps. I struggle with stability and standing like everyone else. I'am clumsy, trip and occasionally fall. It's hard doing the everyday chores, but I manage. It's great to be a part of your forum. Looking forward to your connection. Thank you.
gloria
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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 Jack: Welcome to the Forum where you will find many understanding OT friends. Are you suspicious of anything that might of been the cause of your OT? If I have my math correct you were around 62 when you first experienced the symptoms of OT and that is within the general mean age of the onset OT. Good for you that you are still playing golf and keep on going as long as you can!! Golf is a great sport and I was a golfer too and President of the women's golf association ......... loved the sport........but when the symptoms of OT started I too was able to play for a number of years with understanding friends but not in tournaments . It is good to know you have a neurologist who is knowledgeable of OT. Please keep us posted on how things are going and ask questions too, Gloria
Fiona
Posts: 8
Joined: Mon Dec 26, 2016 6:27 pm

Re: New to the forum? post a quick introduction

Post by Fiona »

Hello, my name is Fiona and I live near Gosford, on the Central Coast of New South Wales.

I was diagnosed with OT last month. Actually, I diagnosed myself thanks to this wonderful website. When I found the description of the symptoms of OT on this site, it was like a lightbulb went on. I took this to my GP, who had never heard of it, but being a progressive type of doctor, immediately googled it. He agreed that it sounded like my story, and sent me for an EMG (which he also wouldn't have known to do without the mention of the test on this homepage). The EMG was definitive (16Hz and a very clear physical reaction). Until that point, I felt that the technician thought she was wasting her time with a healthy-looking 49yo. She was quite shaken after forcing me to stand still for five minutes, four of which involved sweating, hyperventilation, and near-collapse. She immediately called the neurologist into the room, who looked at the tracing and stated it was a "textbook case".

I believe I have had symptoms for just over 12 months. I first became concerned when I wasn't able to stand through three songs in church each Sunday. When I looked around at the over 80yo and realised that they had no trouble, I started to believe this wasn't just being unfit. Then my arms got tired hanging the washing and I would have to rest a few times during the process. Long queues started to become a problem, and I developed a type of circular walk while in a queue. Standing to cook, I would notice myself leaning on the bench, and especially when peeling potatoes at the sink (I have a large family, so there are a lot of potatoes). There was a significant increase in my symptoms after the EMG, which was quite scary, but it has eased off now.

Mostly I can stand around 30 seconds before I feel wrong. It is not tremor which comes first, but an increased heartrate - which might be panic? I also notice that pounding heart if I am watching other people stand still. My brain tells me that they should be moving towards a chair. Weird. As the tremor starts, I get very hot and sweaty, which is strange as I have never been a sweaty type of person.

I have started Gabapentin, moving to two 300mcg tablets per day. I have to say that one tablet made absolutely no difference. Two tablets might be making a difference but I can't be certain yet. Only a few people in my life know about the diagnosis at this stage, which I find both a curse and a blessing. It is hard when I'm in a challenging situation, but I like having an "invisible" condition because I would hate everyone to be fussing about it.

I have masses of questions, but I will try to read all your stories and comments before I start asking them. I have read a bit of the forum, and to be honest, some of your stories have scared me. I am hoping that OT sufferers who have better experiences are too busy to share on a forum. My neurologist (who has treated others in the past) seems to have a quite optomistic viewpoint, expecting that things will be good when the medication is balanced, and even suggesting that because brains are "elastic" that I might even grow out of it. Has anyone else been told that?

I read somewhere here that in 2013 there was a meeting of OT people in Sydney. I would love to make contact with other Aussies with this condition, and possibly meet in the future.

I've found a lot to be thankful for, while coming to terms with this diagnosis, and one of the biggest is that I live in the age of the internet, and I can share the journey with people all over the world. Thank you.
Kris
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Joined: Wed Dec 28, 2016 4:34 pm
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Re: New to the forum? post a quick introduction

Post by Kris »

Hi.
I'm new to this forum and would like to briefly introduce myself.
My name is Kris, I am 50 years old and was diagnosed with OT in 2012. I'm not quite sure what triggered my visit to the GP - maybe I just noticed that I was getting unsteady on my feet, felt more comfortable sitting down or leaning on something and there was a slight tremor in my hands (rattling teacups etc.)
Lucky for me, my GP had another patient with OT that had gone through years of misdiagnosis. This was pretty amazing considering I live in a rural town in Victoria, Australia and this condition is supposed to be fairly rare. When she heard my symptoms she referred me to a neurosurgeon straight away. He referred me to a research hospital for tests and bingo! OT confirmed.
I am now on medication (0.5mg Clonazepam [Paxam]) daily and use a walking stick (or my husband's arm) when going anywhere where there is a chance I will need to stand for any length of time (supermarket queues, galleries, social functions etc.)
I don't use the stick at work as it is too difficult to explain to people what is 'wrong' with me.
I recently visited another neurosurgeon (the daughter of the original neurosurgeon who diagnosed me - small world!!) to check whether there had been any advances in research; any new knowledge available; to allay my fears regarding long term medication. Basically, nothing new to report and she assured me that I seem to be coping OK.
Well, not exactly brief, but that's my story. I look forward to reading through the Forum discussions - past and future!
Kris
Fiona
Posts: 8
Joined: Mon Dec 26, 2016 6:27 pm

Re: New to the forum? post a quick introduction

Post by Fiona »

Hi Kris, so exciting to find another Aussie so quickly after posting my introduction. We have some things in common, including our ages. Not sure if you have always lived in Vic, but I was born there (Melb) and visit often.
Kris
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Joined: Wed Dec 28, 2016 4:34 pm
Contact:

Re: New to the forum? post a quick introduction

Post by Kris »

Thanks Fiona.
Born & bred Victorian - grew up in the eastern suburbs of Melbourne, university in Warrnambool, married and moved to East Gippsland. I currently work for a State Government organisation while my husband runs our Wine & Food shop in town. We did live in a wonderful rural home (bushland complete with acreage and kangaroos) and ran a commercial meat rabbit farm for a while. Our home is currently up for sale for a number of reasons and one of them is my deteriorating health - I was too unsteady on my feet to be able to work on the farm effectively.
From reading through other member's stories, I don't think I'm too badly off but it is still debilitating, tiring and depressing sometimes.
Kris.
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 »

Hi! Fiona & Kris: We have a number of OT friends from Australia and since you both joined the website almost at the same time I see you are both exploring and presenting your new life with OT. I sincerely hope you will find the website will help you both in adjusting your lives to the demands OT. You will find many understanding friends here on the website coping with this new ban in your lives.

All the best Gloria
Paules1325
Posts: 1
Joined: Mon Jan 09, 2017 10:21 pm

Re: New to the forum? post a quick introduction

Post by Paules1325 »

My name is Dale recently I was diagnosed with ot for years I thought that's what I had years ago my legs would only shake when I was under severe stress but as time went on I started shaking after standing for a short time shopping standing for the national anthem at sporting events was really embarrassing I would really start shaking some times I would have to sit down I do a lot of golfing it is hard to explain why I must go to golf cart as soon as I can or putt out because I can't stand still while others are putting although you explain your problem you feel they don't understand your problem . Recently I purchased an stationary exercise bike I try to bike exercise 30 to 60 minutes a day it seems to help somewhat only been doing it for 2 weeks
gloria
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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 Paul: I think I sent you a welcoming note on 12/19/16 ? Nonetheless, you say you thought that you had OT for a number of years ,,,how many years would that be? By the description of your symptoms you where right and now that you have been diagnosed were you tested with an EMG and what was your Hz numbers ? At what age did you first feel the onset of your OT symptoms. The mean age is around the forties/fifties. Now that you have been diagnosed I suggest that you explain fully to your golfing friends that you have Orthostatic Tremors and their symptoms. I was a golfer too and had to explained to my golfing friends about OT. There are a number of other golfing friends here on the website so you are not alone. Please keep us posted, Gloria
admin
Site Admin
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Re: New to the forum? post a quick introduction

Post by admin »

"Lessons I have learned from my patients: everyday life with primary orthostatic tremor"
A new report from researchers : Marie VidailhetEmail author, Emmanuel Roze, Lucie Maugest and Cécile Gallea
As described in the report the format is “how my patients taught me”. Many thanks to the researchers for their dedicated work.

Click to read the full report

Lessons I have learned from my patients: everyday life with primary orthostatic tremor
DOI: 10.1186/s40734-016-0048-5 ©
Marie VidailhetEmail author, Emmanuel Roze, Lucie Maugest and Cécile Gallea
Journal of Clinical Movement Disorders20174:1
Scottrls60
Posts: 4
Joined: Thu Jan 19, 2017 11:09 pm
Location: Pittsburgh Pa area

Re: New to the forum? post a quick introduction

Post by Scottrls60 »

Hi, first time with this forum of OT, but not the web as search for answers. I'm 58 yrs old symptoms started mid- summer 2015 with inner tremors like vibrating and right foot temors mostly during driving pressing on the gas peddle once every so often til early 2016 started having full body shaking/tremors hear there few. Late october I started reallizing no more full body tremors yet still more often inner tremors, then one leg would start then next time the other one depending on my weight. Then started both legs with weakness having to be moving like rocking/swaying. This seems fast progressively have been doctoring since March 2016 to a possible TIA. only leg tremors and inner tremor feelings are present now, but not regular except I feel I can sense them at times? Any input be thankful.
Scottrls60
Posts: 4
Joined: Thu Jan 19, 2017 11:09 pm
Location: Pittsburgh Pa area

Re: New to the forum? post a quick introduction

Post by Scottrls60 »

My name is Rick, I posted first did not mention it, thanks.
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