stellakitty

Thanks Lisa, that maybe one site that I haven't vistited.
Gillian,
My daughter just turned 14, she was just diagonised with this last month by a doc that specailizes in chronic fatigue. He had sent me an initial report after the first time he saw her stating that she did not have chronic fatigue, but had the impression that she had a problem with her autonomic nervous system and orthostatic intolerance due to low salt intake. At that point I got on the internet and did a search on orthostatic intolerane, found the "poor's man tilt table test", had her do that and her hands, arms, legs, and feet started to turn purple within minutes. At her next follow visit with this guy, we scheduled a tilt table test...she crash in 12 minutes.
We left with florinef and it seems to help with her energy level and dizziness, and headaches.
I've done a alot of reading on line about POTS, seems to me that nobody really knows what causes this, or how to treat it. I also called the NDFR looking for another doc to treat my child because he's leaving next week. NDFR does not have any referrals for me here in Denver, the gal I spoke to said that we could see either a cardiologist or neurologist, just someone who has an understanding of POTS.
This last doc did not make any mention of Shy-Drager, though I've read it is in the same syndrome (disease) catagory as POTS and COI. I posted on this board because I wanted to know from "real people"...who do you see, cardiology or neuro, what drugs do you take, do you have any type of intestinal or abdominal dysfunction?
My child has been sick with chronic abdominal pain and headaches for the past two years, I have been chasing down this illness for two years. She was in excellent health about two years ago, then she got an appendicitis, gallbladder "sludge" and ulcers all within two months. Then she kinda had a remission from all of this and then came the vomiting, nausea, abdominal pain, headaches, sweating, chills, dizziness, and fatigue. Do you have these syptoms?
Sorry about the long post, but I'm just trying to put this all together. Thanks
Angie