coloredblood

I take pepsid. The chewables work fast and last. i also have a really hard time with anti-depressants too. Good luck. ~nancy

Thank you all for your ideas, reflections and stories. I've been thinking a lot today and I think a Key for me to move forward is to give myself permission to be sad. So for now I think I;m just going to be sad for a little while. I can't tell you how much it means to me that you KNOW how I feel. I'm not alone and that's comforting. Thanks. ~nancy

So I've been DXed for 2 years now. 2 years ago I had to leave college, my apartment, my friends, and my life in Penn. and move back in with my parents in Georgia. I have been to Vandy and I have a good regimen to keep my symptoms under control. I haven't been really bad in about 3 months now. I still have good days and bad, but the bad days aren't as bad as they were. I know I can't go back to my school in Pittsburgh. I can't be that far away form my family who takes care of me. I also think I won't be able to go back to acting, which was my major. I can't live that lifestyle. So I guess my question is... How do you figure out how to move forward? I need to know what to do with the tremendous sadness and grief that I hold for the life that I feel I've lost. What do you do to maintain your pride and dignity? What makes you feel like you are still you at the end of the day? I just turned 22 and I feel like my life is worthless. I know it's not, but I need help to figure out how to make something of myself. I want to be proud of myself again. ~Nancy

I have nothing helpful to say, but I HATE GATORADE TOO!!!!!!

I get 2 bags through a port every 2 weeks and we ( my doc and I) are talking about going to once a week. It helps a ton! I have to say it does take over a lot of life though. But it does help and when you just can't drink enough it really does help. I hope that helps. ~nancy

I am so sorry to hear that. I'll be thinking about you. Coloredblood ~nancy

Good luck! What a great Hubby!

research patient for now.

I am FINALLY going To Vandy on June 1st, (we asked for then so that my mom who is a School Teacher can go with me.) I'm excited and nervous. I really hope they can tell me something. The time can't pass fast enough! As you all know days can go both fast and slow for us depending. Cheers.

I was a dancer.... Then I got POTS. I'm not in physical Therapy. That's about as much as I can handle right now. I can't do much at all. Coloredblood

Hello all, I am at a loss as to what to do. I don't eat much, small meals and I eat what I can because of constant nausea. I can't exercise at all right now. I haven't been able to for about 4 months. Even before that I noticed that my weight was rapidly going up. I have gained 60 lbs. in the past 6 months. 10 in the past 3 weeks! this is crazy and I seem to have no control. If anything I seem to see that people with POTS have trouble keeping weight on. My doc thinks it's because of the Fludrocortisone. what do you all think. comments, advice, anything? ~nancy

I ALWAYS have to get meds for a yeast infection if I'm on Antibiotics. The more sensitive you are to meds the more that happens I find. I'd do the over the counter AND call the GYN on Monday, just to be safe. ~nancy

Hey, The thing I would say is most important is to trust yourself. And don't think of this as a it must work or it will crash and burn type thing. sometimes it's the right person and sometimes it isn't. I have been with a man I met after I got sick and we are very happy. He doesn't mind it and there are a lot of people out there who don't. Just know that you are you and not your health issues. Good Luck. I wish you the best.

I just had blood work done about 2 weeks ago that came out all wrong too. My doctor went over it with me and said that something was wrong but that the blood work didn't point to anything obvious except that I needed to be closely monitored. I love my doctor because she isn't afraid to say she just doesn't know. In the past I've found that doctors would rather not mention it and watch to see if things change than to investigate when they really just don't know. I have made it very clear to my doctor that I always want to know all results, even if it isn't helpful. I read all of my labs and papers every time. I hope you figure out what's going on. ~nancy

I had my first TTT in august 2007. Then in May I went to Houston TX and repeated is with the sweat test and respiratory challenge. They diagnosed me with POTS and adrenal system dysfunction. My symptoms when they are really bad are: severe head ache Nausea and vomiting-(nearly everything I eat, no matter what it is, often even water) Passing out as many as 7 times a day Dizziness Weakness Body ache (Joints are really bad) I forget things Tremors light, sound, and touch sensitivity. Hives And I'm so tired the idea of rolling over in bed hurts. And I don't sleep. I'm not this bad right now but today is a little better. I can get up and walk around a bit. and I kept some cheese down. I'll take what I can get. I'm really trying to stay positive but it's hard. I had to leave school, move back in with my parents, and I can't work. I feel like a burden especially when it's this bad. I'm just looking for anything to help. ~nancy

I'm Nancy, I haven't been on here too long but I've had POTS for 15 months now. I Have a good internist who is working as my PCP and doing a great job. I was on a ton of meds and we found a combination that made my symptoms tolerable. I was doing alright for about 3 months having many more good days than bad and then about 3 weeks ago it got really bad again. I haven't changed anything, I'm not more stressed, I can't figure out anything to cause this. Does it just happen? I can hardly function and my food intolerance is almost unbearable. I've been in and out of the hospital and that doesn't even seem to help much. Any ideas? Advice? I'm open to anything about now. Thanks. ~nancy

UUUGHHHH! If I didn't have my amazing boyfriend I think I might just burst into flames! I try to get out about once a week to see some of my friends. It's a push sometimes, and sometimes I just can't but that's what I try to do. I can't work and I can't be very active. I lost most of my friends within the first 3 months of being sick. It's just too much for them to take. I have also had to get over my pride a bit. I didn't want them to see me weak and tired and pale....or on a bad day unconscious. I realized that I had to let them in to actually have them there. My sister was afraid of me for a while, but now she comes to visit a few times a week. I just told those who matter to me that this was how I was, maybe just for now, maybe for a really long time. It's not what any of us wanted, but explaining it seemed to help my friends. My boyfriend is still the one who is there for me when I'm angry and feeling like the world just isn't fair. I've chosen him as my one person I can fall completely apart to. As for the rest of the friends, they either get it, or they don't. But those that do, I think, are the best friends in the world. They are the one's that are worth it. ~Nancy

Hey, I was in my Sophomore year at a conservatory for performing arts when I got sick. I had to leave because it was too dangerous for me. My Family is in Atlanta, Ga so I moved back to them. The meds. make me much better and I'm working to be able to go back next fall, if the illness allows. I found that for making arrangements for my return I have gone to the head of my department, and 2 of my professors that know me and think highly of me. They are acting as my map for who I need to work with. If you get some people who can back you up it might be less stressful. You need an advocate. I hope that helps maybe a little. I'll be sending my thoughts and prayers your way. Much luck! ~nancy

I have a lot of similar issues....actually I have an ultrasound on Tuesday. I have a lot of trouble with pain meds too. I find that, for me getting into a hot bath and just resting helps. and then often times I ice my abdomen after so that I don't swell. As far as the ER goes I really don't think they know how to help us. POTS is something that just makes a doctor hesitate to do anything Except blood work and watch you. I hope you find some relief soon. <3 Nancy (I'm new)