Jody

Kathleen, Thanks so much for your words of encouragement. It has helped to firm up my belief that being seen at NIH is very much worth the wait... Thanks!

goldicedance, you mentioned two drugs that I had not heard of before. What does the Mestinon do? I'm thinking we are going for a side effect of the drug as it's original purpose is for Myasthenia Gravis. And I think I've figured out why they are trying the Octreotide. It has antihypotensive properties and I also noticed that it can reduce heart rate, which would be a plus for me. My only concern is that it is in the injectable form only. Have you or anyone else tried these? I'm wondering about side effects. It seems lately if the meds do work, the side effects just about do me in. Thanks again to everyone for all of your help!

Thanks everyone for your input. I have been through several different kinds of meds. My doctor, after exhausting yet another idea/med, feels his hands are tied and would like the additional testing, ideas and experience that an autonomic lab could offer me. He has tried almost everything and really is awesome. He handles colds and such for me even though he is a cardiologist. He still knows more about what a cold, flu, etc. can do to a person with POTS. He reads a lot, but knows when he needs to ask for help. The initial evaluation tests for this study would be enough to at least give us a better idea of where I am at autonomically. He sent the information for me to be seen by them as a consultation, but I was put into this study instead. In the long run I am hoping that it will be of a greater benefit. Not just to me, but to the whole autonomic community. Ellyre your story sounds very much like mine. It is nice to hear from the rest of you who have also been waiting so long to get into NIH. At least now I know that this is the norm.

Hello everyone! I have a quick question. I have been waiting for over a year to get to go to NIH. I was notified in January of this year that I had been accepted into their orthostatic intolerance protocal. Naturally, I was very, very excited as my doctor referred me there for evaluation. But, I heard nothing else from them. I finally emailed them and asked if I was still in the study. They did answer that yes the study was underway and yes I was still included but they just couldn't get me scheduled before the end of this year. I have read many of your posts and you mention participating in these studies, but you never mention how long it took you to get to that point. My doctor doesn't want to do anything more with me until I'm seen. So, I'm in this horrible holding pattern. Any advice or past experiences on how long it takes and what to expect? I'm a little frustrated at this point. I really thought they would keep in better contact with me. Thanks in advance! Jody