Thanks lynn! I am actually a member of CVSA. It's a rare disorder and not many have heard of it. You hit the nail on the head with that website. It's a gem for people learning about the disorder and figuring out which meds work for you. Trouble is, it is a very small support group since there are so few of us, so the dynamic is different there. There aren't many moderators to answere questions, and people are always asking things rather than having much advice to give, so the focus is on awareness that the disorder is out there and what to do in the ER, rather than support for everyday problems that result from it. I start threads sometimes there, but rarely get responses that are insightful. Most people are focused on getting the docs to pay attention to you and learn about CVS rather than proclaiming that it is "all in our heads", which is the norm for us.

I only have one superior, and as he is probably my fave to deal with out of all of them since he is the only other educated person there, but he is still very closed minded about mental illness. I have known him my whole life, and while he is tolerant, he doesn't believe in the world rearranging for people that can't handle life. I have heard him pretty much say those exact words before as harsh as that is.

I was slightly assertive the other day over a comment, and while I feel it was helpful for me to do that, they only made out like I was an emotional basket case and I needed to "take a chill pill and relax"

Actually I want to tell you the comment so you can tell me if overreacted IYO.
I stayed home one day vomiting. Got a text a little later that morning that said, "Omg, suck it up and get ur *** to work"
There were no emoticons or anything to indicate tone. I actually thought about it and tried to decide if I should respond in a joking way or in an assertive way. I sortof did both. I let them know I didn't appreciate it by saying that I seriously hoped that they were joking, bc if not, I need to sit them down and explain this thing better, bc it it is not a matter of sucking it up, it is bigger than me when it happens. and that it is very important to me that they know I will be there if I can.
Keep in mind that this comment also came from people that are my subordinates. I am technically higher than them in the chain of command, just newer, and I feel so disrespected!

So, do you think I over reacted to that comment?

I take nortriptyline daily for the CVS. My husband and I want to become pregnant. I know what a huge deal this is and we have been talking and discussing with docs for a while now. I was taking Lamictal for bipolar but have weaned off that med to prepare for pregnancy. I won't come off the nortrip though for fear of the episodes coming back full force. GYN says its ok, risk vs benefit, and I just take tons of folic acid. I also have Klonopin to help with anxiety but I try to not take them bc I refuse to take one in pregnancy and I want to wean from that too.
So yes, I'm sure this is contributing to my hard time, but we have tried to hard and for so long to get to this point that I don't want to give up or backtrack...

Oh, and as far as a cause for CVS... we don't know. As a result, we don't know how to cure, or even effectively treat it, although recent research is truly insightful. It is neurologic in nature rather than an issue with the GI tract. There is speculation that there is disease in the mitochondria of cells of people with this disorder, which would affect metabolism among other, deeper functions. It is also known sometimes as an abdominal migraine and is associated genetically with migraines. There is a genetic component for sure. I also have dysautonomia, which is a fancy way of saying my nervous system is messed up and goes haywire sometimes.