Rose

I had it done 3 years ago, they left 1 ovary, I never regretted the surgery because the pain went away, but make sure you're there for her and she knows that going through this can be very emotional. As far as going through it with our conditon it can be very tricky, but the doc needs to be informed of helpful things. It helped me to be given a sidative before I went in, also saline before and after surgery. Most important of all is to have supportive people around at all times in the hospital. I'm glad I left 1 ovary in, they said if it gives me problems in the future they can now go in with a lasar to remove it. Tell her she is in my prayers and I'm always here if she needs me!

I can't gain weight for anything. I can go up or down 5 pounds in a couple of days. My doc said it's because people who have this can't hold fluid in their body, which is why its so important to drink fluids all the time! Interesting to find out I'm not the only one !!!

Hi again, sorry it's been so long since I've been here. Been pretty rough getting through the holidays and the dentist. The dentist was wonderful, he had me on an sadative IV, Saline IV, A blood pressure machine, and gas mask. He was super with the whole thing. My tooth ended up infected 2 days before going in and since I have this great condition they couldn't move it up. They ended up pulling my tooth, I'm alittle sad about that but hey whats another thing right? I need some advice please, I own a Salon that as taken me 10 years to get up and running. I have had so much stress in my life with owning a business and being a single mom for 8 years but I've been so proud of myself for holding on for so long. I got married 8 months ago and things are alot easier now BUT THEN this whole condition as happened. Tonight I went to work to make up for being gone for another week for the tooth thing and had a full blown episode. The feeling is so awful and so embrassing to me. I've canceled so many clients already. Am I feeling worse because of the tooth pull thing? and mixing so many meds? I feel like quitting my job that I love so much, and my clients are so great, but they deserve to have somebody reliable. 7 other girls rely on the salon for income too. What would you do ? Thanks for any imput! Rose

Thanks Gals, All the imput really does help, Somedays this thing just gets me so angry! I go on Thursday to talk to this new dentist. I think just the stress of going is bad enough!!! I'll keep you posted. Thanks again everybody, I don't know what I'd do without all of you!!!

I have an broken tooth and went to the dentist yesterday, well guess what? It was terrible, I almost passed out, my blood pressure went down, and they told me they couldn't help me because of my condition. (auto failure) I'm terrified of going to get my tooth done, any hints? The dentist I talked to today said that he would put me on a IV, then I could relax since stress is so risky. This is scary!!!!!

The best thing for me is to get store water in a squart bottle and pour in salt. It tastes funny at first but I actually got use to it, and it helps

I'm so sorry about everything you're going through. For 3 years doc's told me all kinds of things, from it's all in my head, to having addisons disease to social anxiety, the list goes on and on, it wasn't until things got super bad , and a doc took charge and actually cared did I get the help I needed. Don't give up, I had to keep on searching for a doc that would listen and understand. Nobody has symtoms like we do for nothing. Only you know you're body, and only you can keep on going. Please make sure you know you're not alone and that this season is wonderful but also stressful which can worsen whats going on, remember to take time to breath and to also take time to knew you'll be alright. God Bless, You're In My Prayers

I was just wondering if anybody else as trouble going in crowds or even in a house full of people. I was at Christmas with my extended family and started to have the feeling of passing out. This use to happen all the time before they put me on my meds, but now I'm really frustrated with it happening again, is this something I'm going to have to get use to? I feel like I can't do anything like I use to !

I had the same thing happen, I have a lump on my neck that gets big sometimes and then goes down for no reason. They said that it is nothing to worry about, I've had it checked by 3 doc's. But follow your gut, and if it bothers you then keep insisting to get answers. Keep your head up

Thanks for your help and suggestions. I'm on Florinef, Paraoxetine, and Clonazepam, I have Hypotension, my blood pressure when standing is usually 70/62 , they have me wearing compression leggings and drinking water all the time. Stress is difficult. I just got married 6 months ago, and this condition ruined my wedding because I had to leave the reception and passed out 6 times during the ceremony. I wish people would understand how hard this condition is to have. I've been going to a great doc at Rochester Mayo, when I saw him 4 weeks ago I was in really bad shape and he said I was lucky to have gotten there when I did. My husband is wonderful but when people hear its the nervous system they think I had a nervous break down, That makes it even worse when people just assume and don't ask about it. Christmas is going to be really hard, anybody else worried?

Hello, I'm new too!! I'm sure you're happy like me to find a place where people can understand what you're going through.

I just got dignosed this month, after about 4 months of doc's telling me all kinds of stuff I might have. I'm relieved to finally know, but I own a salon and can hardly go to work. My clients are getting mad and my staff is starting to get frustrated with not having a boss. Things are getting alittle better, I can at least stand up without getting dizzy, But going places without getting episodes is almost impossible. Any Hints?