New to the forum? post a quick introduction

[gloria]

Hi! Cindy: Thank-you for introducing yourself and your rather complex situation suffering with M.E./CFS plus a diagnose of OT. As you read the postings on the website you will learn very well the symptoms of OT as opposed to those of M.E./CFS. However, one of the things I have found living with OT is how tired I feel around 4:00 pm in the afternoon after fighting with OT during the day..... I bet I'm not the only OT'er that is exhausted at that time of the day!!!
Please keep us posted how you are managing to separate your two problems. Gloria

[jesschar]

HI, I am Jess. I can not think of much to say except, I am very lost. In the world and in my soul. I was a health 38 yr old with the job of my dreams, starting a new life five years after a divorce and now I am getting a walker Thursday because I can only stand for a minute or two if I am lucky. I can not drive and the snow is still piling up. I feel trapped and confused as to what is happening to my legs. I go Tuesday to see my first Neuro doctor for this leg thing and in May to a movement specialist who only sees very specific genetic related issues. My siblings have what is called AT and I am a carrier but I do not seem to have the adult onset issues called Variant AT. My search had led me to your site time and again. My only symptom that I have not heard about on here is when I lay down completely. It is horrible, my legs after about 60 seconds start ever so slowly to contract and straighten until it is so fast and uncontrollable that they become straight and tremor so violently they look like a fish out of water. They do this at first it was for about a 60 seconds then they stopped and no more tremors all night. Now I have to lay down in stages. If I sit up it used to stop now it stops but starts very slowly. I had to get up last night and go through it three times. It looks like a grand mal seizure in my legs only. If I try to stop it with my muscles my upper body will thrash due to my butt muscles contracting. I call it detoxing. I am so exhausted when it is over like I just ran a marathon. Sweating and heaving for air and my legs feel so heavy, but in a strange way so free! Does anyone else have to go through this when they lay down?

[gloria]

Jess :I am very sorry to hear about the difficulties in life that you are going through. Your symptoms are different from what I feel. Hopefully your new doctor will have some answers for you. Wishing all the best. gloria"

[jesschar]

Hi, thank you for your reply. I do have every other symptom of OT and will be for sure to mention it to the neurologist Tuesday. Thank you so much for your sight. Without it I would be even more in despair. Jess

[Nin]

I too have not had the kind of leg reaction that you mentioned. It sounds like serious Restless Leg Syndrom and I know several people who have OT have that. You might try asking on one of the Facebook OT forums as there are several younger people on them (I'm 68 - still young, but not 38.) Hang in there thought - you are definitely not alone!

[CarolT]

Hello. My name is Carol and I was diagnosed earlier this week with Primary Orthostatic Tremor. I have googled everything I can find on the subject and it appears as though there is not much out there on POT. What I have found is a little scary. The doctor has started me on Primidone and I am trying to get used to it. I think it might be too much for me. The first day I took it I was high as a kite all evening. I cut the pill in half and for for the last 2 days have taken half in the morning and half in the evening. Still drowsy but......NO tremors.
I had the tremors for almost 2 years before going to the doctor. They were getting worse and interfering with my every day life so I had to do something. I would like to hear from others who have POT.
Carol

[gloria]

Hello Carol: Thank you for introducting yourself and I know that it might seem "scary" when you first get the news and it is life changing but you are now with a group that will be of help learning their OT experiences and how they are coping. The website itself is a station of almost all the latest information of what is known about OT so you can learn where we are at this point in time as a neurological movement disorder. Primidone is one of the known meds' used for OT and like all drugs you must continue working with it until you find the right amount and schedule of taking it. Keep us posted on how you are doing, Gloria

[grammy7772002]

I 1st posted 4 months ago. My OT was so bad I seriously considered quitting my job but decided to take a leave of absence instead to try medications. I refuse to take narcotics so my neurologist prescribed Gabapentin. I am up to 1600 mg a day. Sometimes I forget to take a dose though. I have also developed essential tremor (wobbly head).
Since I have not had tiredness from the medication, I recently went back to work part time working where I don't have to stand. The 9 years of working as a substitute mail carrier in order to become a regular are now dashed. I now have no hope of becoming a regular as I cannot stand to sort my mail. I can only work a few hours a week delivering expresses. My neurologist said I can't get disability because I can still find a sit down job. That's easier said than done in this economy. I live in CA.

[llfrasher]

I am Laurie. I live in the US. Was diagnosed about a year ago, but have been symptomatic for approximately 6 years. I was afraid to go to the doctor, afraid to tell my family, co-workers, etc. What I did find is that once people understand what's happening, they (and you) can cope better. My family has been very supportive, as well as my work. I'm learning to work around my symptoms as much as possible.
Currently on Clonazapam as well as Primidone. The Primidone was added recently. I must say at first I was shocked at how "out of it" I was. I felt like I was in a haze all the time. When I spoke to my Neuro, she told me to stay on it. Try it for a couple more weeks and if it's too much to handle, I could stop taking it. Well, after about 6 weeks, I'm not feeling as bad as I did. I don't feel hazy anymore and I can still do my job, drive, etc. without too many issues.
Does anyone know of anything else I could be doing, trying, etc.???
This whole thing has been pretty rough. I'm having EMG work done next week, a little worried about that as well. I'm still young, only 45 years old and I want to live my life. Any suggestions or advice?
Warm Regards, Laurie

[gloria]

Laurie: [quote]" I'm learning to work around my symptoms as much as possible" ........ pleased to hear you say that because it is something I have tried to do for myself thru all my years living with OT.... it is the best way to start traveling thru life with OT at your age. Having a supportive ,informed family and friends is very helpful too. Don't be afraid of having an EMG , it is a routine test for OT, no pain or strain, just info gathering. Please keep us posted on how you are doing . Gloria & your new OT friends

[eblacksr]

Introductions and Greetings:

There have been quite a few new people registering and it might be nice to hear from you in terms of a quick introduction. It can be as much or as little information as you would like. And for the veterans of this site this may be a good time to re-introduce yourself.

best regards,

Gloria

I just wrote a introduction and don't know wha happened to it or I don't know how to use this system?

Ed B

[admin]

I just wrote a introduction and don't know wha happened to it or I don't know how to use this system?
Ed B

Hi Ed

Welcome! looks like you did a good job with this post and quoting too. I'm not sure where your previous went. You might want to check to see if it is in your drafts. You can view your drafts by clicking on the profile tab at the top of the page and then view Overview/Manage Drafts. Feel free to play around, you can always delete a post that you make if you would like to test out the features. Let me know if you run into any problems.

best regards

jeff

[kittycarol]

I have had an essential tremor since the age of 21 ,only efected one side at first within 10 years it had effected both sides .Head arms and torso. 2 and a half years ago i dtarted having pains in my arms and leg muscles and could not stand for any length of time without getting on my hands and knees because i felt my legs would not take my weight.It has taken over 2 and a half years to diagnose OT.my neurologist was cross i had not been before and has been really unhelpful in any way.He has put me on rovotril 2 x 500mc and does not want to see me again.I feel lost and alone not knowing what to do.I live in melbourne australia.THank you for reading

[gloria]

kittycarol:
Thank you for posting your story with ET and now with OT. I have never heard of a Dr. saying he " does not want to see you again". Certainly I believe you do not want to see him again!!! In my welcoming letter to you I requested you go back to your PROFILE (where you registered) and leave your location there. No one can go into your PROFILE accept you. By doing so your location will appear with your name whenever you post on the website just as you see my location whenever I post. However if it is not in your PROFILE your location will not appear. This is very important because we have a good number of OT friends in Australia as members so perhaps you will be able to meet up with someone near you and hopefully you will not feel so lost and alone. All the best, Gloria

[jeepconn]

Hello Everybody,
I'm Connie from outside of Nashville, Tennessee. I have OT and I'm new to all of this. Like 6 weeks NEW.
I was rushed to the ER from work, they thought I was having a stroke. Stayed in the hospital all day. All test came back perfect. They wanted me to see Neurologist. So I got an appointment and met with him. I have a larger problem walking down stairs right now...I have had tremors while standing also. He has me on meds this the 2nd one. The first one made me really drunk. This one is gaba???? Can't remember. Really glad I found you. Thanks Connie