Hello to all fellow movers and shakers

[RED]

Hi to all from waaaaaaay down under! New Zealand! I know a couple of you, Sue and Gloria, and am happy to see the new site. Haven't been in a while, so great changes! I can't remember the lady's name whose posting I read , rude of me I know!....blame the drugs! , and she commented that she hadn't noticed anyone complaining of shaking in the arms. While it doesn't seem to happen that often and really on the very bad days for me, I can get such shaking in my arms and hands when trying to sign a credit card thingy!:) I am fortunate as most people around my home town know me now, so they understand and let me get away with a signature that looks like it had been written by a 'shaker & mover'! Elizabeth is my name and laughter is my drug of choice! I find that after all the dangerous drugs that I have been prescribed over the last 4 years, I have come down to 1 1/2 tablets of Clonazepam at night only. I finally decided that clarity of mind was as important as trying to reduce the tremors and this is the dose that I have found suits me. I don't get rid of the shakes, only by half and some days worse , and my memory loss and concentration levels are completely ruined by previous drugs given all in the name of...I'm darned if I know what to do with you, but try this one!...experiments. this is a 'short' introduction into my wacky world and sharing with people is the greatest relief that we OT people can have! Bless you all and I am happy to join you.....RED

[Lynda]

Hi RED,
It's great to read your message - I find it really helpful and encouraging to be in touch with other OT sufferers again and to hear their stories. I don't feel so alone in it all!
When I'm standing, I can't sign my name legibly due to shaking arms and hands, so I've taken to paying by cash wherever possible - the coward's way out! However - some good news - apparently the debit card I sometimes use (Switch) which requires a signature at the moment, is changing its system. They are introducing a key-pad instead, so that rather than signing your name, you just have to tap in your PIN number. I think I might be able to manage that! I'm also using the Internet increasingly for shopping; it saves all that stress involved with browsing, queues, etc when suffering with OT.
I'm off all medication now. My neurologist said I could go one of two ways: start experimenting with various drugs that MIGHT help (and put up with various side-effects I may experience) OR learn to live with OT and find ways of coping. I chose the latter and I'm doing OK. Just have to keep smiling!
Best wishes
Lynda

[Betty]

Hi Lynda and Red,

I just wanted to add, I too have hand and arm tremors ~ I think that is another of the problems we encounter with OT. While standing, when we all seem to have more tremors, it is difficult for me to sign anything. There are times I can hardly read my own writing; but I also have ET and have times I have problems writing while sitting. Of course any amount of stress makes OT much worse; and standing, trying to sign something is very stressful for me.

Regarding medication, Red, I was on Clonazepam (Klonopin) for three weeks and found I couldn't tolerate that so discontinued it. I am to see my neurologist tomorrow, Monday the 2nd and will discuss trying Gabapentin (Neurontin). Most OT sufferers seem to have the best results with that ~ I will give it a try because I am running out of ways to cope. Did you try Gabapertin? Did it seem to 'cloud' your mind?

Lynda, if you are off all medications, and you are coping, your tremors must not be as sever as some; or your coping skills are better. Either way ~ good for you! Mine are now to the point OT has altered my life considerably. I used to play golf and can no longer do that; which is true of so many things I did before OT. I am not one to take medications, but I am willing to try at this point and see if I can regain some balance (literally) to my life.

I am so happy the new forum is up and we can again share experiences.

Best wishes to all,
Betty

[Lynda]

Hi Betty,
Just to say that I tried Neurontin for about nine months, gradually increasing the dose, but to be honest it didn't make enough difference to my tremor, to make it worth taking. I know that this isn't everyone's experience - and for some it really seems to help. I had no significant side-effects whilst taking it and it certainly didn't cloud my mind, so I had no objections to taking it. I have resisted taking Clonazepam because I'm a proofreader and clear-thinking is essential! I do hope and pray that Neurontin works for you - it's certainly worth a try. Let us know how you get on.
I'm not sure how severe my tremor is compared to other people, but I am quite limited in what I can do. I'm a librarian by profession, but I know that as things are at the moment I will never be able to go back to that type of work. I cope as best I can and try to make the most of what I can do (-easy to say on a good day!).
Best wishes
Lynda

[Sue]

Hi Betty, Lynda & Red
I have experienced both Clonazepam and Gabapentin. I found that I was more 'zombie-like' after taking Clonazepam. The Gabapentin seemed to help but not signifiantly enough to continue taking it. My tremors are not nearly as severe as some and I can appreciate that there are sufferers who would benefit from taking this medication. I prefer not to take it unless absolutely necessary.

It is good to see all these responses coming in!

Best wishes
Sue

[AnitaBonita]

Hi! I am new to this site and have never shared with anyone else that has has OT. I have had essential tremors for about 15 years, after the birth of my daughter- I was then 35, I ran competively and 5 years later the shaking started in my legs at functions, tried ice skating-(don't even think about it). I was misdiagnosed for quite some time. I am now 50. My tremors have progressed to the point that they boil over in stressful situations, ie; physical exertion, stairs...my mind can't make me go up without railings,stress,stress, stress. I have gotten on my knees to sign my name in extream situations. I have been taking only baths for 10 years. I feel I have depth perception or I am just a clutz, as I trip going up stairs. Right now I have just started reinterducing Nuerotin with the 6 mg of clonazapam I am taking. I have been asked to work off my meds. twice now and the first time was shocking, the second time I knew what was coming and although I was totally disabled in doing anything but sitting or lying down, I also had facial tics. Two things I have learned is that to make friends with this disease as we will have it and it is not going away, and to be straight forward with curious people and state " I have a tremor disorder". These are hard things to do because we all would like them to disappear or get better. Exercise helps my demeanor so very much. Since I can move....I now walk or swim. I look forward to hearing from anyone who knows of anything new. I search weekly and have found some info on spinal cord coorilation to tremors. Hope we all live with dignity.'The will of God will never take you where the Grace of God will not protect you.' bye for now AnitaBonita of Calgary Alberta

[gloria]

Hi! AnitaBonita:
Thank you for introducing yourself and sharing your OT story of the way you have made changes in you life to cope with all the OT symptoms that we share with you. You have used exercise as a positive necessity and this is the route that has gotten the best results for other OT friends. I hope that the forum will be a outlet of help and companionship with your new friends that really understand !!!!!!! Take care, Gloria

[porotin]

Hello to everybody:
I live in australia i am able to get in the forum sometimes i like to read it becouse i donot know enybody who suffer my condition where i live and my friends do not understand me I also suffer from ET i am finding dificult to do my shores at home and specially gardening i need to sit if i do to hard work it that happen to you too?? I am on epilim,mysoline and madopar and help a bit i find myself stragling to walk and i lose my balance plus i just had a tumor removed from my ear i lost a bit of hearing this is not helping me but i try to live the best i can, My english is not good so sometimes i will make mistake please help?? and i send my love to all of you porotin

[stella R]

Hi everyone,
i saw my doctor this week. nothing new to report he said.
I am still taking 900mg of gab a day. Not sure if it does a lot but it has reall helped those awful
legg cramps. And for that i am greatful.
I was just outside trying to put up some xmas lights.
Oh my didnt work for me. Had to get my walker out.
Even finding something in your cupboard is a task.
We are all in the same boat it seems.
We keep on going with our stools and chairs and anyone who will help us along.
take care all
stella