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[DEEmou]

Hi Gloria, just finding my way around this forum still as I am a new member, I was given my diagnosis in Feb, after my neurologist used a stethescope on my last visitation and I 'wondered why' this 'crazy' man had a stethescope to my legs!! I had an MRI brain scan prior which showed I had enlarged ventricals and excess fluid on my brain they did talk about the possibility of fitting a shunt but however after doing a large volume lumbar puncture and timed walk before and after decided against the shunt as my walking speed and gait had not improved after the lumbar and didn't want to put me through the op. ( they have no explanation as to why I have the excess fluid) or how long it has been this way
On hindsight I think I have had the onset of O.T over the last 18mths ++++ without even realising it, because I am the type of person who pushes myself hard and because of my age (51-yrs) I just presumed I was 'getting old' looking back now I had a couple of episodes where I simply could not get out of bed ,,,generally I was increasingly finding it harder to function with pain and fatigue then the tremor in my legs kicked in! big time! when out supervising the children in school for an hour everyday I shook with the cold and also had a great desire to want to sit which was very confusing as I wasn't one to sit around but I STILL kept going.
on the onset and to this day I have trouble descending stairs due to the tremor, and feel unsteady on uneven ground, decline on hills and my walking distance/speed is not good. Unfortunately I had no explanation or introduction on O.T until after I was diagnosed given a prescription and then went on to research what it was when I came home from my G.P appointment. Your site is so valuable and a great insight into this condition and I just want to thank you and your members who take the time to listen and advise THANK-YOU ALL DEE

[LMP1]

Hello Dee
I too have the "buzzing" in my legs, mostly at night but I've noticed it is happening more during the day. I describe it as being like an electric current running up and down the front of my thighs. When it happens I feel the rest of my body getting very hot and I start to sweat. I've found the best way to ease the "buzzing" when I'm in bed is to find a cold part of the bed, lie on my stomach and the cold from the sheets soothes it. I take an anti-inflammatory called Naproxen for the pain in my legs, but it's benefits are not great. If I don't take it, however, I find after three days without it I really struggle to walk the dog. For that reason I've stayed on it because I know we need some exercise - and so does the dog!

I was diagnosed in 2009 and was in my early 50's. About 18 months later when I found my balance was getting worse, my Neurologist wanted to give my Clonazapam but I declined due to the known side effects. I did cut back my hours of work and a year later gave up altogether because of the fatigue. Since then I've learnt to pace myself each day - I soon know if I've overdone it because I suffer for the next couple of days. I also have Essential Tremor of my hands and head and have noticed I'm losing a lot of strength from my hands and arms which I believe is part ET and part OT.

It can be very frustrating when people say to you that you are looking so well. Little do they know the battles our bodies are going through each day. I found the best thing was to hand out information to as many family, friends and work colleagues as possible so they get some understanding of the condition.

Best wishes
Lynette (Blenheim, New Zealand)

[Sara]

Hi Dee
It certainly is frustrating when people tell you how well you are looking. (happens when you are sitting of course ) I'm sure a few people question how I can be out walking when I have told them I have this debilitating condition where I can't stand for long. My wonderful husband is very supportive; however I think even some of my family and close friends struggle to understand the impact of this condition. Coincidental I am a Teachers Aide also although for the last 8 years I have been seconded into administration. During the September school holidays last year, sadly I had to finally admit that I couldn't keep working. I was finding that any and all energy I had was expended at work and at home all I would do was try and recover to be ready for work again. I am now focusing on things that will improve my quality of life such as walking, physio, yoga and water aerobics. I feel like I have a life again ; however it is still easy to over do things and then have to spend a day or two... on the couch. Sometimes I'm not even sure what it is that I have done to wear myself out. I know that it doesn't have to be physical activity as stress, anxiety even excitement exacerbates OT.
Life sure can be challenging but this website is surely a godsend....Thank you Gloria.
Sara

[molly]

I can relate to what u r saying
I find stress is the big thing for me
I start to sweet and get very hot
It is still warm in sydney which does not help
Anyway thanks for this site makes u realise we r not alone

[DEEmou]

THANK-YOU Ladies, looks like I have challenging times ahead,but I am truly grateful for your posts and support hoping to return to work, I see our board doc this Friday and go from there, I have been advised by the neurologist to do a phase return so at least I can try it and see how I go....hope you all have a good day DEE x

[Agarner]

Hello. My name is Amanda. I am 41 years old. Wife, mother of 3 daughters, and a Realtor. OT is severely affecting my daily life. I am so tired of some pills. My husband prefers the tremors over the side effects of the Meds (drunk stagger feeling). I love to stand in the front row at church and worship, but today it was too much. I am very sad, angry and confused as to what to do next. I get tired of explaining to clients and everyday people that "no" I am not cold and "no" I am not nervous or my favorite that happened last week at IKEA "no" I do not need to go to the bathroom, I have tremors. I am just TIRED.

[gloria]

Amanda : How long have you had OT and when were you diagnosed? If your med's are too strong you should report to your neurologist the need to change them ,however there is nothing on the market that makes our symptoms go away completely. All of us who have OT know your frustration but we had to learn coping skills to do things differently and a need to make changes in our life style in general. Many OT'ers carry a cane when in the public,this way people know you have a problem of some kind and generally offer assistance.

It is better to spread the word about our disorder by simply saying " I have a neurological movement disorder and need to walk but when I'm in a standing still position my leg muscles contract and tremor and I have a need to sit down." Please read the website often you will understand you have lot's of OT friends who understand !!!!!
Gloria

PS: When you were diagnosed with OT were you given an EMG?

[Agarner]

Gloria,
Thank you for your response. I have correctly been diagnosed for about a year with OT. However I have struggled with it for the last 8 years. I also have ITP blood disorder as well. Therefore, in the beginning I blamed my shaking on my blood disorder, or not have eaten.About 13 years ago my legs would sort of buckle beneath me when I was walking and my legs would become very weak. Then 2 years before the tremors began I had severe pain down my legs constantly. The doctors did nerve test and every other test but found nothing. Next, I was told I had Essential Tremors, and was treated for that for a few years with no luck.
I live in Austin TX. I am just now coming to terms with myself that I can not hide it any longer. My stress level for sure plays a major factor. Driving has become a real issue as well. I am terrified of how much worse it will become.

[molly]

Yes stress levels don't help
Nor to family not believing me
My husband is a brick but children and partners not great
I must say it has caused a big rift in my family
It's not the OT but the way people react

[tonyholden]

Thanks for all the very useful information – I had POT diagnosed at a first visit to a consultant in 2010/2011. My local Doctor sees me regularly and I do some work with a psychologist on coping strategies. Recently [two years] I’ve had occasional vertigo problems. My question is: is there any information concerning low level vertigo head sensations and POT head sensations. I’m male, 75, deaf, and within limits keep at managing the movement problems. It’s the sensations in my head that I find very difficult to cope with. Fortunately my wife is a huge support and help. But I’d appreciate a link to any information. Glad to be on board, Tony Holden

[gloria]

Tony: Welcome on board ! Glad you posted on the website as I suggested in my return answer to an email from you. Hope some of our OT friends who might have "low level vertigo head sensations and POT head sensations" will describe their experiences. Gloria

[LinK]

Hello,
My name is Linda. I was just diagnosed on Monday. I started with having my legs shaking when I was going down the stairs. Well that is what I think as my first clue, but looking back, I see at times when my legs shook at other times or my arms when I put weight on them. Primarily though, it started in December when my legs shook in my thighs when walking down the stairs. I also noticed that when I was walking that I couldn't walk a straight line all the time, I would sometimes end up stepping out to the side with one foot or the other, much like I was off balance. I also lost my balance a few times when I was standing (but felt no tremors at those times).
I also would get these feelings in my head like I was spaced out and out of it, much like when you are coming out of anesthesia and the only thing that would make me feel better would be to lie down.
Back in 2006 I'd had an a time when I had buzzing up my left leg and also parasthesias and was tripping. They did all kinds of tests, MRIs, Evoked potentials, EEG, etc and found nothing and ruled out MS.
This time when I went to the neurologist, I brought those records and told her my symptoms, as I again was also having the parasthesias and also getting a feeling of something tight around the bottom of my legs. Her response to me was that I "didn't fit anything" and that my MRI was going to be negative again. This really made me mad, as I thought she was blowing me off. I also happen to be bipolar, and a lot of times, when someone has a mental disease as well, they tend to think it's all in the head. Well I started crying and told her "this is not all in my head, this is real!" So she decided to do a MRI of my head and to have an EMG done.
My EMG showed a few little things, so they were thinking it might be due to Lipitor, because lipitor can cause problems with muscles etc. Nasty stuff. I am going to talk to my PCP about going off of it.
When I went to see her on Monday. she told me my MRI was normal and that my EMG didn't show any muscle damage or anything, just a few little bleeps of things they though was maybe due to the lipitor. I started crying again. I said, "then what is causing all this problem? It's getting worse! I can't even put weight on one leg without it shaking now. I can't stand on one leg without it shaking. I can't lean on an arm now without it shaking!!"
So she asked if I wanted to see the movement doctor and I said yes. So he came in and asked what was going on. I told him. He checked my reflexes. Then he asked me how long it was when I was standing before I started to notice my legs shake, I told him about five minutes. Then he asked me if it got better if I started walking. I said yes. So he looks at my doctor and says, "she has orthostatic tremors." Doesn't tell me, just tells her and walks out of the room.
She then looks it up, reads a little about it, tells me about it and puts me on klonopin. She says it's almost like essential tremor, but that it effects the body in a different way and is rare, do I know anyone with essential tremor. I said my sister and dad have it.
Well that was that. She said, let's try the klonopin and see how it works and I'll see you in six months. End of visit.
So of course, that led me to reading up about it on the internet and finding out how rare it is and how little doctors know about it. I am thankful that the movement neurologist in her practice knew about it, although, there is much to be said about his bedside manner.
Thanks Gloria for having this site and forum. I'm sure it will help me greatly.

[gloria]

Linda: Welcome to the website and I hope that if you read as much as you can you will be able to separate some of your symptoms into the correct disorder since you seem to have a mix of problems on going at the same time. Please keep us posted as you put things in a better order of takening care of your health issues. Gloria

[Dnahale]

Hi my name is Amanda and I was diagnosed 3 years ago at Mayo with ortho static tremor syndrome. I noticed symptoms a few years prior to this and my symptoms were getting worse. After weeks of testing at mayo they finally did a test specifically for this disease. My neurologist informed me this is what I have and only 1% of people in the world have this disorder so there is no known cure or treatment. I was told to try clonazapan to see if it slowed down the tremors. I waited 2 years to try the medicine as I was informed it would make me a zombie and with owning 2'businesses and have 2' children, this is not an option for me.
My tremors have progressively gotten much worse the past 2 years. I began taking clonazapan approximately 6 months ago and am just taking 1 at night. It took my body over 2 months to get used to this medicine and to force myself out of bed each day. So far the tremors continue to get worse. I cannot stand at all without leaning on something or holding on to something stable. I have to constantly switch feet as they hurt terribly when I stand so I have to take turns standing on one at a time.

I really am looking for guidance or to hear from others who have successfully found ways to help stop or slow down the tremors. I am scared to take more than one a day as I cannot imagine what my body will do if I take 2 a day.
If anyone has heard of or had any successful results I would really love to hear about them!
Thank you for your time!

[LinK]

Hi Amanda,

I am new too. I just got diagnosed a week ago. I have gotten progressively worse over a month. I am trying the Klonopin, but it is making me very sleepy. The first few days on it, I slept most of the time. The last couple of days, I am forcing myself to stay up, but I am very sluggish. So far I have not noticed any changed on what it does to my tremors, but it's only been a week.
I get pain in my calves. I also get pain in my left foot in two of my toes and the ball of my foot, I don't know if that's related or not. I think the calf pain may be from those muscles trying to keep me upright and balanced when I'm standing and walking, because I'm still trying not to lean on anything and I take my dog on walks several times a day. Sometimes I do have to cut those shorter then he would like though.
Do you get arm tremors? I do. I get them when I put weight on my arms, like if I'm getting in bed or out of bed and lean on one arm. Yesterday I was working in my yard, spraying weed killer in my gravel driveway because they're just taking it over. My husband died, so I have to do everything now. About half an hour into it, my hand started tremoring when I was squeezing the pump and I would have to take breaks. I also had to take a few sit down breaks as well. When I was done with a whole jug, I called it quits for the day. When I came inside, my whole arm was tremoring so badly, tht my hand was tremoring with it moving like an inch or more with each tremor. That lasted for over an hour.
Do you get any weakness too? Yesterday I noticed when I was cutting my nails, that I was having a hard time using the nail clipper with my left hand. I am right handed, but never had difficulty before.
Best of luck to you. I hope we get more answers from others.

Linda