New to the forum? post a quick introduction

[gloria]

Connie: Welcome again to the website and I am quite surprise at the fast onset of your OT symptoms but they are definitely part of OT symptoms. Has your neurologist given you an EMG? You gave a very good introduction of yourself in your PROFILE when you registered on the website but is there anything in your past you think might have caused the OT onset. Perhaps as you read more of the website something might come to mind. The Gaba med you mentioned is Gabapentin......Keep us posted how you are doing, Gloria

[Joan33]

Hi everyone my name is Joan and I am 81 years old who lives on Anglesey, North Wales UK, so please bear with me as my typing skills are not that of a youngster!! I have had OT for the past 20 years and was diagnosed by a Doctor in London, UK. It started with the inability to stand for many minutes and this has progressively worsened to a point where I am now unable to stand for any amount of time at all without feeling that I am going to fall forwards. This is a horrible condition that makes me live in constant fear of falling which no one seems to really understand. All the Doctors around here don't understand the condition and therefore cannot advise me of any help that may now be available if further research has taken place over the past 20 years. I live with my husband who is also 81 and he is a great help but I do feel I am being a burden on him, even though he never complains and manages wonderfully. My son found this website through his Face book page and I am really pleased to have been accepted onto this forum and talk to people with this condition and benefit from your advice and support. Thank you! Joan

[gloria]

Hello! Joan: I'm happy you have joined the website and hope you will find that you are not alone and now have many OT friends that ALL understand how OT has changed our lives. Here you will see that OT does not have any borders and we now have member OT friends from 37 different countries on the website. It is good when people leave their location as you did in their Profile when they register because that way there is a chance that someone might live within a reasonable distance from them. Hopefully someone might post they live near Anglesey ! In your history is there anything you suspect might have been the cause of your OT? Are you taking any medications for OT now or in the past? All the best, Gloria

[Peachy]

Hello. This is Peachy. I live in Mississippi. I am 44 years old and have been recently diagnosed with OT. I noticed mine after I had a hysterectomy. In 2013 I was sick with bronchitis so I went to the doctor and he gave me a shot. Cant remember the name of it. The next day I could barely walk without legs shaking and torso tightening up. This went on for a few days. Ended up going to ER because it had become worse and my husband made me. Didnt find out anything. So I assumed it was a reaction from that shot I had took earlier that week. It got a little better but I still was having trouble with my legs shaking and the tightening in my torso. I also was having bad headaches. Went to one neurologist and after several MRI,nerve conductions,EEG (I think thats what its called where they hook wires to your brain),he couldnt find anything. He said he couldnt help me anymore. He said he could send me to a pain management clinic. I tried going to a chiropractor. After about a month of going to him he said there was nothing he could do. He had never seen anything like it. I had a muscle biopsy done to rule out major muscle diseases.Nothing showed up in that. I finally got in with one of Jacksons best neurologist. In less than an hour she told me what it was. She said she had only seen 6 cases in her years of practice. She told me there was no cure for it. She said to go home and research it. So I did. Lately I have noticed my eyes being more blurry than usual. I have glasses because I went and was told I was farsighted in my right eye. My right eye waters alot. I also have tingling in my hands and feet. My right foot tends to go to sleep while driving. I also have ringing in my ears. I had Bells Palsy when I was in high school. I have flare ups with it occasionally. I am now having "twitching" on my face. Its usually on the right side around my mouth and eye. Have had it on left side but not as much. I am taking Clonanzapam. I havent seen that its helped with tremors but it helps me to sleep at night. I also was having trouble sleeping. Does anyone else have any of these symptoms with their OT? Also before my diagnoses I had to go to ER for back spasms. Doctor wouldnt do anything because I was having spasms so bad. He gave me a shot and muscle relaxers.

[gloria]

Hi! Peachy: Sorry you are having a bit of different things that are perhaps exacerbating your OT. It is good that you have found a neurologist that knew about OT. Sometimes people with OT have what we call OT Plus . You have a number of other issues separate from the normal OT symptoms that in time hopefully you will be able to find treatments for them to reduce the stressfulness these issues cause. Stress of any kind is one of OT biggest exacerbators. Hopefully your neurologist will help guide you with these issues. I personally am working with a watery eye situation which disturbs my balance...... eye problems and back problems seem to intensify our OT too.
Anyone treating other problems make OT more difficult to address? Gloria

[Peachy]

She is the only doctor I am seeing at the moment except the one that treats me for my blood pressure. I go back to the neurologist at the end of this month. I will see what she says about all this.

[Suzanne]

Hello everyone. I am Suzanne from Australia. I am 59. Over ten years ago I started to have strange feelings of unsteadiness when standing. I think it first started after a flu-like virus which also left me with tinnitus. I told my Dr at the time and she sent me for tests on my ears and balance. Nothing was found and I learnt to live with my symptoms.
Over the years I tried to explain to Doctors how frustrating it was to feel so bad standing in a queue when shopping or in a bank, and yet be able to walk for miles and feel fine while I was moving. I was offered anti-depressants, which I declined, but no other help was offered.
The last couple of years my unsteadiness worsened and one morning, after feeling so shaky in the shower, I realised I actually had a tremor.
I searched the Internet for tremor while standing and thankfully found this site. I couldn't believe it! Other people actually exist who understand how I feel! I read everything and watched the videos of the meeting.
Last year I asked my Dr whether he had heard of orthostatic tremor. He hadn't. He sent me for blood tests and a Brain scan, which all came back normal. I asked to be sent to a neurologist. My Dr didn't think that was necessary.
Recently I had an episode of tachycardia and went to an after hours Dr. I was really shaky and told him about my tremor. He hadn't heard of orthostatic tremor.
I went back to my Dr for follow up after the tachycardia and I also told him my tremor was worsening and is really affecting my life. He suggested I see a psychologist. I told him I believe I have orthostatic tremor and I needed a referral to a Neurologist not a psychologist. He wrote a referral.
I saw the Neurologist yesterday. I was so nervous before the appointment. It only took him twenty minutes to reach a diagnosis of Orthostatic tremor. I almost cried! Not because I have a rare tremor, because finally someone knew what I was talking about!
I phoned my husband and I cried.
I want to thank Gloria for sharing her story and making so much invaluable information available.

[gloria]

Suzanne: It was a long time ago but I remember crying too after finally being diagnosed. Welcome aboard but unfortinately your early history with the beginning of your OT symptoms is now a familiar shared "time frame" in the lives of so many of your new OT friends. Your new friends understand and communicating with each other on the forum is very rewarding by sharing our problems and coping skills as well. By the way we have quite a number of OT members from Australia so if you go to the membership list (54 pages) and scan over them you might find some who live rather near to perhaps connect with. I'm hoping EVERYONE understands the importance of working together in spreading awareness so people with the symptoms of OT do not have to go thru the frustration finding a diagnosis. Thanks Susanne for reporting in and please keep us updated how you are doing....... Gloria

[Lyn Parche]

Hi I am new to this forum, thanks Gloria. I have only recently been diagnosed with Orthostatic Tremor and most days I am unable to walk. I am from Australia (ByronBay) and would like to hear from any other Australian members who may have had some success with Australian Doctors that specialise in OT.

[Joan33]

Hi Gloria thank you for replying to my introductory post. I think I first started with this condition around 1995. It all started because I felt unsteady on my feet, and the sensation of overbalancing forward when I stood still for a short period of time. This horrible sensation has gradually worsened over the years to a point where I now cannot stand for any time at all. As for a trigger, its hard to think of one, the only thing was I was experiencing a bit more stress in my life then so weather that was a contributing factor to my OT or not I can't say. My own doctor and a doctor in the local hospital suspected OT and they referred me to Dr Peter Brown in The national hospital for neurology and neurosurgery in London, UK. This was the Doctor who confirmed I had OT in 2000. I have taken various medications in the past, namely, Clomazapan 5-300mg, Sinemet plus, Primadone 250mg, Epilem 200mg, Lyrica 50mg some of which had no effect on the condition. some made me feel extremely sleepy all the time. Others gave me slurred speech and worsened my balance, all of which wasn't any good! I now take Gabapentin 600mg 4 times daily, however I am not sure if they are helping or not and I am extremely afraid of stopping or reducing the dosage should this worsen my symptoms further. The problem I have over here is no one seems to know anything about this condition. Every time I tell my own Doctor my symptoms are worsening he doesn't know what to do! Its unbelievably frustrating! I only hope I can get some advice from you all on this forum which will help me with this ongoing nightmare! As I said before I am 81 years old and not very good on modern technology so I do find it difficult to read this forum so if you could simply tell me where to find information on this site I would really appreciate that! I am really keen to read and take on board all your help and advice on how to help me ease my OT. Thank you all again and I am really looking forward to reading your suggestions. Joan

[admin]

Hi Joan

so if you could simply tell me where to find information on this site I would really appreciate that! I am really keen to read and take on board all your help and advice on how to help me ease my OT.

Welcome to the forum! with all of the categories, discussions, and topics the forum can be a challenge at first. But with a little time it will become more comfortable. Please don't hesitate to ask if you do get stuck on navigating the forum or website.

The main website link is - http://www.orthostatictremor.org/

And on the website there is a page that describes the different topics on the forum and next to each description is a link to that area of the forum - http://www.orthostatictremor.org/about_forum.html

Don't worry about clicking on things to explore, you won't break anything

best regards

jeff

[golfnut]

Hi all,
it was suggested that "the old ones" should re-introduce themselves so... OK:

I'm Golfnut and as my nick-name suggests completely nuts about golf. When getting my diagnose 2009 I was devastated and thought that one thing sure to be lost would be my ability to play. Now I know that there are always ways forward and I can still enjoy my game. Over time we adjust, adapt and manage - but I've also been helped.

I've been diagnosed both here in Stockholm, Sweden but I've also met Dr Bain in London UK twice. My condition has improved with the help of alternative therapies and I'm now also seeing if prisms can help even more.
If you want to follow my story from the start, grab a cup of tea or something and read "the Golfnut story"-thread from the beginning.

Facts? I'm a woman, now 54 years old and coping.
Take care everyone,
your nut.

[Joan33]

Okay Jeff I will have a good look around! Thanks for your reply! Joan

[gloria]

Hi! Joan: Posting one's history with OT has been very helpful in developing a description of the movement disorder OT and the impaired mobility we live with. I found your posting very easy to associate with because of our nearness of age we share and the early symptoms that we felt as "onset" compared to where we are in time. You mentioned stress as a possible trigger of your OT and is one that is on the list of OT triggers. By the way I have been on Gabapentin most of my OT history because I was told it is a "flush through" medication. However, I do find like you with time I get less relief from it and for a much shorter time. ( part of aging I believe) You have given a very good introduction and will look forward to your continued posting of your impressions as you read the website , Jeff has given you good ways to scope it. Gloria

[Peachy]

Is there anyone in Mississippi,USA with Orthostatic Tremor?