The Orthostatic Tremor Forum (archive)

Here is a letter that I received with an interesting question :

Thank you soooo much for having this forum and also describing what I
> have! The doctors, and there are many, never were able to tell me what
> I had. I thought I was nuts or the only one in the world with this disease!
> I am a missionary in Tijuana, Mexico caring for 33 kids who used to
> live in the street. I always have a chair available. People look at me
> weird when I have to sit on the ground or floor while talking to them
> away from my routine places. It has progressively gotten worse over 25
> years! Now I can only stand a few seconds. This does not stop me, but
> I feel very shakey and fatigued when I overdo. I have been taking Neurontin for 4 years and it looks like I should increase my dose after reading your posted info. A neurologist prescribed this for me and thought it would help even though he had no clue of what I had. I have been in contact with professional insect spraying that comes once a month. This began in the late 1970's with me and then I began to have this leg problem. Are there others who can relate to this? >
> God bless you, Connie Youngkin
>

Dear Connie, So pleased that you have found this site, its a wonderful comfort for those that have OT, and a great place to get support.

In answer to your question regarding chemical sprays. I have been exposed to a number of chemicals during the past 20 years. I sprayed litres of Round-up on weeds, I also worked at a winery which used a number of sprays for the grapes. Plus I picked vegetables which had been sprayed and worked in a factory sorting vegetables which also had been sprayed. I know we are all looking to find what has caused our OT and one cannot dismiss chemicals as our problems, escpecially today with all our food contaminated with some form of chemical.

I too am like you and can now only stand for a couple of seconds, so I have got progressively worse over the years. I am not taking any meds at this time, I have tried many and nothing worked for me, so stopped all treatments. regards Lorna.